WELLNESS STARTS WITH AWARENESS - CD8 T cells - The Body

Positively Aware 

HIV Treatment and Health 

Bob Bowers 

Challenges 

Students to 

Face HIV 

September / October 2008 

The Journal of Test Positive Aware Network 

Wellness Starts 

With Awareness 

Methadone Advocacy 

Wellness Checklist 

Tesamorelin vs. 

Serostim

INDICATION 

PREZISTA (darunavir) is a prescription medication. 

It is one treatment option in the class of HIV 

(human immunodefi ciency virus) medicines 

known as protease inhibitors (PIs). 

PREZISTA is always used with 100 mg ritonavir 

(Norvir ® ) in combination with other HIV medicines 

for the treatment of HIV infection in treatment- 

experienced adult patients, such as those with 

HIV resistant to more than one PI. 

• The use of other medications active against 

your HIV in combination with PREZISTA/ritonavir 

(Norvir ® ) may increase the likelihood of your 

overall treatment response. Your healthcare 

professional will work with you to fi nd the right 

combination of other HIV meds 

• The long-term benefi ts and side effects of 

PREZISTA therapy are unknown at this time. 

It is important that you remain under the care 

of your healthcare professional 

PREZISTA is not approved for the treatment 

of HIV infection in adult patients who have 

never taken HIV medications before or in 

pediatric patients. 

PREZISTA does not cure HIV infection or AIDS, 

and does not prevent passing HIV to others. 

Please read Important Safety Information 

below, and talk to your healthcare professional 

to learn more about PREZISTA. 

IMPORTANT SAFETY INFORMATION 

• Do not take PREZISTA if you are allergic 

to PREZISTA or any of its ingredients, or 

ritonavir (Norvir ® ) 

• Please refer to the ritonavir (Norvir ® ) Product 

Information (PI and PPI) for additional 

information on precautionary measures 

• Taking PREZISTA with certain medicines 

could cause serious and/or life-threatening 

side effects or may result in loss of its 

effectiveness. Do not take PREZISTA if 

you are taking the following medicines: 

astemizole (Hismanal ® ), terfenadine (Seldane ® ), 

dihydroergotamine (D.H.E.45 ® , Migranal ® ), 

ergonovine, ergotamine (Wigraine ® , Ergostat ® , 

Cafergot ® , Ergomar ® ), methylergonovine, 

cisapride (Propulsid ® ), pimozide (Orap ® ), 

midazolam (Versed ® ), triazolam (Halcion ® ), 

rifampin (Rifadin ® , Rifater ® , Rifamate ® ), 

lopinavir/ritonavir (Kaletra ® ), saquinavir 

(Invirase ® ), lovastatin (Mevacor ® ), pravastatin 

(Pravachol ® ), simvastatin (Zocor ® ), 

carbamazepine (Tegretol ® , Carbatrol ® ), 

phenobarbital, phenytoin (Dilantin ® , Phenytek ® ), 

or products containing St. John’s wort 

• Before taking PREZISTA, tell your doctor if 

you are taking sildenafi l (Viagra ® ), vardenafi l 

(Levitra ® ), tadalafi l (Cialis ® ), atorvastatin 

(Lipitor ® ), atorvastatin/amlodipine (Caduet ® ), 

or rosuvastatin (Crestor ® ). This is not a 

complete list of medicines. Be sure to tell 

your doctor about all the medicines you are 

taking or plan to take, including prescription 

and nonprescription medicines, vitamins, 

and herbal supplements 

• Tell your healthcare professional if you are 

taking estrogen-based contraceptives. PREZISTA 

might reduce the effectiveness of estrogen-

{ 

Belief 

�� based contraceptives. You must take additional 

precautions for birth control, such as a condom 

• Before taking PREZISTA, tell your healthcare 

professional if you have any medical conditions, 

including allergy to sulfa medicines, diabetes, 

liver problems (including hepatitis B or C) 

or hemophilia 

• Tell your healthcare professional if you are 

pregnant or planning to become pregnant, 

or are breastfeeding 

– The effects of PREZISTA on pregnant women 

or their unborn babies are not known. You 

and your healthcare professional will need to 

decide if taking PREZISTA is right for you 

– You should not breastfeed if you have HIV or 

are taking PREZISTA 

• Liver problems, which may be life-threatening, 

have been reported with the use of PREZISTA. 

It was not always clear if PREZISTA caused 

these liver problems. Patients with liver disease 

such as hepatitis B and hepatitis C may have 

worsening of their liver disease with PREZISTA. 

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Your healthcare professional should perform 

blood tests prior to and during your treatment 

with PREZISTA 

• Skin rashes ranging from mild to severe or 

life-threatening have been reported in some 

patients receiving a PREZISTA-ritonavir 

regimen. Contact your healthcare professional 

if you develop a rash 

• High blood sugar, diabetes or worsening of 

diabetes, and increased bleeding in people 

with hemophilia have been reported in patients 

taking protease inhibitor medicines like PREZISTA 

• Changes in body fat have been seen in some 

patients taking anti-HIV medicines. The cause 

and long-term health effects of these conditions 

are not known at this time 

• As with other protease inhibitors, taking 

PREZISTA may strengthen the body’s immune 

response enabling it to begin to fi ght infections 

that have been hidden. Patients may experience 

signs and symptoms of infl ammation that can 

include swelling, tenderness or redness 

Ask your healthcare professional 

if PREZISTA is right for you. 

�� 

�� 

• The most common side effects include diarrhea, 

nausea, headache, and common cold. If you 

experience these or other symptoms, talk to 

your healthcare professional. Do not stop taking 

PREZISTA or any other medications without fi rst 

talking to your healthcare professional 

PREZISTA should always be taken twice a day 

with and at the same time as 100 mg ritonavir 

(Norvir ® ), in combination with other anti-HIV 

medicines as prescribed by your healthcare 

professional. PREZISTA should also be taken 

with food (the type of food is not important). 

You are encouraged to report negative 

side effects of prescription drugs to the 

FDA. Visit www.fda.gov/medwatch or 

call 1-800-FDA-1088. 

Please see Important Patient Information on 

the next page. 

Distributed by: Tibotec Therapeutics/Division of Ortho Biotech Products, L.P. 

Bridgewater, New Jersey 08807-0914 

©2008 Tibotec Therapeutics 04/08 28PRZ0089B PREZIS1472-2

PREZISTA* (darunavir) Tablets 

Patient Information about 

PREZISTA (pre-ZIS-ta) 

for HIV (Human Immunodeficiency Virus) Infection 

Generic name: darunavir (da-ROO-nuh-veer) 

ALERT: Find out about medicines that should NOT be taken with 

PREZISTA. Please also read the section “Who should not take 

PREZISTA?”. 

Please read this information before you start taking PREZISTA. Also, 

read the leaflet each time you renew your prescription, just in case 

anything has changed. Remember, this leaflet does not take the place 

of careful discussions with your doctor. You and your doctor should 

discuss your treatment with PREZISTA the first time you take your 

medicine and at regular checkups. You should remain under a doctor’s 

care when using PREZISTA and should not change or stop treatment 

without first talking with a doctor. 

WHAT IS PREZISTA? 

PREZISTA is an oral tablet used for the treatment of HIV (Human 

Immunodeficiency Virus) infection in adults. HIV is the virus that 

causes AIDS (Acquired Immune Deficiency Syndrome). PREZISTA 

is a type of anti-HIV drug called a protease (PRO-tee-ase) inhibitor. 

HOW DOES PREZISTA WORK? 

PREZISTA blocks HIV protease, an enzyme which is needed for HIV to 

multiply. When used with other anti-HIV medicines, PREZISTA may 

reduce the amount of HIV in your blood (called “viral load”) and 

increase your CD4 (T) cell count. HIV infection destroys CD4 (T) cells, 

which are important to the immune system. The immune system helps 

fight infection. Reducing the amount of HIV and increasing the CD4 (T) 

cell count may improve your immune system and, thus, reduce the risk 

of death or infections that can happen when your immune system is 

weak (opportunistic infections). PREZISTA is always taken with and at 

the same time as 100 mg of ritonavir (NORVIR ® ), in combination with 

other anti-HIV medicines. PREZISTA should also be taken with food. 

DOES PREZISTA CURE HIV OR AIDS? 

PREZISTA does not cure HIV infection or AIDS. At present, there is no 

cure for HIV infection. People taking PREZISTA may still develop 

infections or other conditions associated with HIV infection. Because of 

this, it is very important for you to remain under the care of a doctor. 

Although PREZISTA is not a cure for HIV or AIDS, PREZISTA can help 

reduce your risks of getting illnesses associated with HIV infection (AIDS 

and opportunistic infection) and eventually dying from these conditions. 

DOES PREZISTA REDUCE THE RISK OF PASSING HIV TO OTHERS? 

PREZISTA does not reduce the risk of passing HIV to others through 

sexual contact, sharing needles, or being exposed to your blood. For 

your health and the health of others, it is important to always practice 

safer sex by using a latex or polyurethane condom or other barrier 

method to lower the chance of sexual contact with any body fluids such 

as semen, vaginal secretions, or blood. Never re-use or share needles. 

Ask your doctor if you have any questions on how to prevent passing 

HIV to other people. 

WHAT SHOULD I TELL MY DOCTOR BEFORE I TAKE PREZISTA? 

Tell your doctor about all of your medical conditions, including if you: 

• are allergic to sulfa medicines. 

• have diabetes. In general, anti-HIV medicines, such as PREZISTA, 

might increase sugar levels in the blood. 

• have liver problems, including hepatitis B or C. 

• have hemophilia. Anti-HIV medicines, such as PREZISTA, might 

increase the risk of bleeding. 

• are pregnant or planning to become pregnant. The effects of 

PREZISTA on pregnant women or their unborn babies are not 

known. You and your doctor will need to decide if taking PREZISTA 

is right for you. If you take PREZISTA while you are pregnant, talk to 

your doctor about how you can be included in the Antiretroviral 

Pregnancy Registry. 

• are breastfeeding. Do not breastfeed if you are taking PREZISTA. 

You should not breastfeed if you have HIV because of the chance of 

passing HIV to your baby. Talk with your doctor about the best way 

to feed your baby. 

WHO SHOULD NOT TAKE PREZISTA?** 

Together with your doctor, you need to decide whether taking 

PREZISTA is right for you. 

IMPORTANT PATIENT INFORMATION 

Do not take PREZISTA if you: 

• are allergic to darunavir or any of the other ingredients in PREZISTA 

• are allergic to ritonavir (NORVIR ® ) 

• take any of the following types of medicines because you could 

experience serious side effects: 

Type of Drug Examples of Generic 

Names (Brand Names) 

A ntihistamines 

astemizole 

( Hismanal® 

) 

(to treat allergy symptoms) terfenadine (Seldane ® ) 

Ergot 

Derivatives 

( to 

treat 

migraine 

and 

headaches) 

dihydroergotamine 

( D. 

H. 

E. 

45® 

, Migranal ® ) 

ergonovine 

ergotamine (Wigraine ® , 

Ergostat ® , 

Cafergot ® , Ergomar ® ) 

methylergonovine 

Gastrointestinal Motility Agent cisapride (Propulsid ® ) 

(to treat some digestive conditions) 

N euroleptic 

(to treat psychiatric conditions) 

pimozide 

( Orap 

S edative/ 

hypnotics 

midazolam 

( Versed® 

) 

(to treat trouble with sleeping triazolam (Halcion ® and/or anxiety) 

) 

CAN PREZISTA BE TAKEN WITH OTHER MEDICATIONS?** 

Tell your doctor about all the medicines you take including prescription 

and nonprescription medicines, vitamins, and herbal supplements, 

including St. John’s wort (Hypericum perforatum). PREZISTA and many 

other medicines can interact. Sometimes serious side effects will 

happen if PREZISTA is taken with certain other medicines (see “Who 

should not take PREZISTA?”). 

Tell your doctor if you are taking estrogen-based contraceptives. 

PREZISTA might reduce the effectiveness of estrogen-based 

contraceptives. You must take additional precautions for birth control 

such as a condom. 

Tell your doctor if you take other anti-HIV medicines. PREZISTA can be 

combined with some other anti-HIV medicines while other 

combinations are not recommended. 

Tell your doctor if you are taking any of the following medicines: 



A ntiarrhythmics 

bepridil 

( Vascor® 

) 

( to 

treat 

abnormal 

lidocaine 

( Lidoderm® 

) 

heart 

rhythms) 

quinidine 

amiodarone (Cordarone ® ) 

digoxin (Lanoxin ® ) 

A nticoagulants 

(to prevent the clotting of red 

blood cells called platelets) 

warfarin 

® ) 

( Coumadin 

A nticonvulsants 

carbamazepine 

( Tegretol 

(to treat epilepsy and Carbatrol ® ) 

prevent 

seizures) 

phenobarbital 

phenytoin (Dilantin ® , 

Phenytek ® ) 

A ntidepressants 

A nti-infectives 

(to treat bacterial infections) 

trazodone 

( Desyrel 

® ) 

® ) 

clarithromycin 

( Biaxin 

A ntifungals 

ketoconazole 

( Nizoral® 

) 

(to treat fungal infections) itraconazole (Sporanox ® ) 

voriconazole (Vfend ® ) 

Antimycobacterials rifabutin (Mycobutin ® ) 

(to treat bacterial infections) rifampin (Rifadin ® , 

Rifater ® , Rifamate ® ) 

Calcium Channel Blockers felodipine (Plendil ® ) 

(to treat heart disease) nifedipine (Adalat ® ) 

nicardipine (Cardene ® ) 

*Trademark of Tibotec Pharmaceuticals, Ltd. 

**The brands listed are the registered trademarks of their respective 

owners and are not trademarks of Tibotec, Inc. 

® ) 

® ,



Corticosteroids 

dexamethasone 

(to treat inflammation (Decadron ® ) 

or 

asthma) 

fluticasone 

propionate 

(Advair Diskus ® ,Cutivate ® , 

Flonase ® , Flovent Diskus ® ) 

HMG-CoA Reductase Inhibitors atorvastatin (Lipitor ® ) 

(to lower cholesterol levels) lovastatin (Mevacor ® ) 

pravastatin (Pravachol ® ) 

rosuvastatin (Crestor ® ) 

simvastatin (Zocor ® ) 

Immunosuppressants cyclosporine 

(to prevent organ transplant (Sandimmune ® , Neoral ® ) 

r ejection) 

tacrolimus 

( Prograf® 

) 

sirolimus (Rapamune ® ) 

Narcotic Analgesics methadone 

P DE-5 

Inhibitors 

sildenafil 

( Viagra® 

) 

(to treat erectile dysfunction) vardenafil (Levitra ® ) 

tadalafil (Cialis ® ) 

Selective Serotonin Reuptake paroxetine (Paxil ® ) 

Inhibitors (SSRIs) sertraline (Zoloft ® ) 

(to treat depression, 

anxiety, or panic disorder) 

Tell your doctor if you are taking any medicines that you obtained 

without a prescription. 

This is not a complete list of medicines that you should tell your doctor 

that you are taking. Know and keep track of all the medicines you take 

and have a list of them with you. Show this list to all of your doctors 

and pharmacists any time you get a new medicine. Both your doctor 

and your pharmacist can tell you if you can take these other medicines 

with PREZISTA. Do not start any new medicines while you are taking 

PREZISTA without first talking with your doctor or pharmacist. You can 

ask your doctor or pharmacist for a list of medicines that can interact 

with PREZISTA. 

HOW SHOULD I TAKE PREZISTA? 

Take PREZISTA tablets every day exactly as prescribed by your 

doctor. You must take ritonavir (NORVIR ® ) at the same time as 

PREZISTA. The usual dose is 600 mg (two 300 mg tablets or one 600 mg 

tablet) of PREZISTA, together with 100 mg (one 100 mg capsule) of 

ritonavir (NORVIR ® ), twice daily every day. It may be easier to 

remember to take PREZISTA and ritonavir (NORVIR ® ) if you take them 

at the same time every day. If you have questions about when to take 

PREZISTA and ritonavir (NORVIR ® ), your doctor can help you decide 

which schedule works for you. 

Take PREZISTA and ritonavir (NORVIR ® ) with food. The type of food 

is not important. Swallow the whole tablets with a drink such as water 

or milk. Do not chew the tablets. 

Continue taking PREZISTA and ritonavir (NORVIR ® ) unless your doctor 

tells you to stop. Take the exact amount of PREZISTA and ritonavir 

(NORVIR ® ) that your doctor tells you to take, right from the very start. To 

help make sure you will benefit from PREZISTA and ritonavir (NORVIR ® ), 

you must not skip doses or interrupt therapy. If you don’t take PREZISTA 

and ritonavir (NORVIR ® ) as prescribed, the beneficial effects of 

PREZISTA and ritonavir (NORVIR ® ) may be reduced or even lost. 

If you miss a dose of PREZISTA or ritonavir (NORVIR ® ) by more than 

6 hours, wait and then take the next dose of PREZISTA and ritonavir 

(NORVIR ® ) at the regularly scheduled time. If you miss a dose of 

PREZISTA or ritonavir (NORVIR ® ) by less than 6 hours, take your missed 

dose of PREZISTA and ritonavir (NORVIR ® ) immediately. Then take your 

next dose of PREZISTA and ritonavir (NORVIR ® ) at the regularly 

scheduled time. 

You should always take PREZISTA and ritonavir (NORVIR ® ) together 

with food. If a dose of PREZISTA or ritonavir (NORVIR ® ) is skipped, do 

not double the next dose. Do not take more or less than your 

prescribed dose of PREZISTA or ritonavir (NORVIR ® ) at any one time. 

WHAT ARE THE POSSIBLE SIDE EFFECTS OF PREZISTA? 

Like all prescription drugs, PREZISTA can cause side effects. The 

following is not a complete list of side effects reported with PREZISTA 

when taken either alone or with other anti-HIV medicines. Do not rely 

**The brands listed are the registered trademarks of their respective 

owners and are not trademarks of Tibotec, Inc. 

IMPORTANT PATIENT INFORMATION 

on this leaflet alone for information about side effects. Your doctor can 

discuss with you a more complete list of side effects. 

Your healthcare professional should do blood tests prior to initiating 

combination treatment including PREZISTA. Patients with liver 

diseases such as hepatitis B and hepatitis C may have worsening of 

their liver disease with PREZISTA and may need more frequent 

monitoring of blood tests. PREZISTA has been reported to cause liver 

problems which may be life-threatening. It was not always clear if 

PREZISTA caused these liver problems because some patients had 

other illnesses or were taking other medicines. 

Mild to moderate rash has been reported in 7% of subjects receiving 

PREZISTA. In some patients, PREZISTA has been reported to cause a 

severe or life-threatening rash. Contact your healthcare provider if you 

develop a rash. Your healthcare provider will advise you whether your 

symptoms can be managed on therapy or whether PREZISTA should 

be stopped. 

As with other protease inhibitors, PREZISTA may cause side effects, 

including: 

• high blood sugar (hyperglycemia) and diabetes. This can happen in 

patients taking PREZISTA or other protease inhibitor medicines. 

Some patients have diabetes before starting treatment with 

PREZISTA which gets worse. Some patients get diabetes during 

treatment with PREZISTA. Some patients will need changes in their 

diabetes medicine. Some patients may need new diabetes medicine. 

• increased bleeding in patients with hemophilia. This may happen in 

patients taking PREZISTA as it has been reported with other protease 

inhibitor medicines. 

• changes in body fat. These changes can happen in patients taking 

anti-HIV medicines. The changes may include an increased amount 

of fat in the upper back and neck, breast, and around the back, 

chest, and stomach area. Loss of fat from the legs, arms, and face 

may also happen. The exact cause and long-term health effects of 

these conditions are not known. 

• immune reconstitution syndrome. In some patients with advanced HIV 

infection (AIDS) and a history of opportunistic infection, signs and 

symptoms of inflammation from previous infections may occur soon 

after anti-HIV treatment is started. It is believed that these symptoms 

are due to an improvement in the body’s immune response, enabling 

the body to fight infections that may have been present with no obvious 

symptoms. 

The most common side effects include diarrhea, nausea, headache, 

and common cold. 

Tell your doctor promptly about these or any other unusual symptoms. 

If the condition persists or worsens, seek medical attention. 

WHAT DO PREZISTA TABLETS LOOK LIKE? 

PREZISTA 300 mg tablets are orange, oval-shaped, film-coated tablets 

mentioning “300” on one side and “TMC114” on the other side. 

PREZISTA 600 mg tablets are orange, oval-shaped, film-coated tablets 

mentioning “600” on one side and “ ” (curved triangle with a dot) on the 

other side. 

HOW SHOULD I STORE PREZISTA TABLETS? 

Store PREZISTA tablets at room temperature (77°F (25°C). Short-term 

exposure to higher or lower temperatures [from 59°F (15°C) to 86°F 

(30°C)] is acceptable. Ask your doctor or pharmacist if you have any 

questions about storing your tablets. 

This medication is prescribed for your particular condition. Do not 

use it for any other condition or give it to anybody else. Keep 

PREZISTA and all of your medicines out of the reach of children. If 

you suspect that more than the prescribed dose of this medicine 

has been taken, contact your local poison control center or 

emergency room immediately. 

This leaflet provides a summary of information about PREZISTA. If you 

have any questions or concerns about either PREZISTA or HIV, talk to 

your doctor. 

For additional information, you may also call Tibotec Therapeutics at 

1-800-325-7504. 

Rx Only 

Manufactured for Tibotec, Inc. by: 

JOLLC, Gurabo, Puerto Rico 

Distributed by: 

Tibotec Therapeutics, Division of Ortho Biotech Products, L.P., Raritan, NJ 08869 

Patent Numbers: 5,843,946; 6,248,775; 6,335,460 and other US patents pending 

© Tibotec, Inc. 2006 Revised: February 2008 10101704P

• Support Groups 

• Rapid HIV Testing 

• Yoga, Reiki and Massage 

• Needle Exchange Program 

• Buddy Program 

• Access Medical Clinic at TPAN 

• PULSE, an HIV-positive Weekly Social 

• Positively Aware Party at Hydrate 

• POWER (Positive Outcomes for Wellness, 

Education, and Recovery) 

• TEAM (Treatment Education Advocacy 

Management) 

• SMART Sex—Prevention and Outreach 

Program 

• Monthly Educational Forums and Trainings 

For detailed descriptions of programs, 

including dates, times, and locations, visit 

www.tpan.com and click on Client Services, or 

call (773) 989-9400. 

6 

TPAN 

Programs and Meetings 

Test Positive Aware Network 

5537 North Broadway 

Chicago, IL 60640 

phone: (773) 989–9400 

fax: (773) 989–9494 

e-mail: tpan@tpan.com 

www.tpan.com 

© 2008. Positively Aware (ISSN: 1523-2883) is published bi-monthly by Test 

Positive Aware Network (TPAN), 5537 N. Broadway, Chicago, IL 60640. Positively 

Aware is a registered trademark of TPAN. All rights reserved. Circulation: 85,000. 

For reprint permission, contact Jeff Berry. Six issues mailed bulkrate for $30 

donation; mailed free to TPAN members or those unable to contribute. 

TPAN is an Illinois not-for-profit corporation, providing information and 

support to anyone concerned with HIV and AIDS issues. A person’s HIV status 

should not be assumed based on his or her article or photograph in Positively 

Aware, membership in TPAN, or contributions to this journal. 

We encourage contribution of articles covering medical or personal aspects 

of HIV/AIDS. We reserve the right to edit or decline submitted articles. When 

published, the articles become the property of TPAN and its assigns. You may 

use your actual name or a pseudonym for publication, but please include your 

name and phone number. 

Editor 

Jeff Berry 

Associate Editors 

Keith R. Green 

Enid Vázquez 

Executive Director 

Rick Bejlovec 

Contributing Writers 

Laura Jones, James Learned, 

Jim Pickett, Sue Saltmarsh, Matt Sharp 

TPAN 

Events 

• Aware Aff air Gala: Superheroes 

Saturday, September 13th, 2008 

MCA Loft 

visit www.tpan.com 

• Chicago Takes Off 

Saturday, March 7th, 2009 

Two shows! 

visit www.tpan.com 

• Other Special Events 

For detailed 

descriptions of 

these and other 

TPAN events visit 

www.tpan.com and 

click on Events, or 

call (773) 989-9400. 

Medical Advisory Board 

Daniel S. Berger, M.D., Patrick G. Clay, Pharm.D., 

Rupali Jain, Pharm.D., and Ross M. Slotten, M.D. 

Art Direction 

Russell McGonagle 

Advertising Inquiries 

publications@tpan.com 

Distribution 

Joe Fierke 

distribution@tpan.com 

Opinions expressed in Positively Aware are not necessarily those of staff 

or membership or TPAN, its supporters and sponsors, or distributing agencies. 

Information, resources, and advertising in Positively Aware do not constitute 

endorsement or recommendation of any medical treatment or product. 

TPAN recommends that all medical treatments or products be discussed 

thoroughly and frankly with a licensed and fully HIV-informed medical practitioner, 

preferably a personal physician. 

Although Positively Aware takes great care to ensure the accuracy of all the 

information that it presents, Positively Aware staff and volunteers, TPAN, or 

the institutions and personnel who provide us with information cannot be held 

responsible for any damages, direct or consequential, that arise from use of this 

material or due to errors contained herein. 

PA • September / October 2008 • tpan.com • positivelyaware.com 

Positively Aware

Departments 

6 TPAN Programs, 

Meetings, & Events 

11 Editor’s Note 

Table of Contents 

September / October 2008 Volume 19 Number 5 

This Shouldn’t Happen 

12 Readers Forum 

14 PA Online Poll 

17 News Briefs 

by Enid Vázquez 

19 Get Sharp 

Life Savers 

On the front lines at the FDA 

by Matt Sharp 

20 Ask the HIV Specialist 

This issue’s specialist 

Kay Kalousek, DO, MS, 

AAHIVS, FACOFP 

49 The Buzz 

Comparing Two Integrase 

Inhibitors 

The fi rst head-to-head study 

comparing raltegravir and 

elvitegravir 

by Daniel S. Berger, M.D. 

52 What’s Goin’ On? 

The Glamorous Life of HIV 

Twisted words, hurt feelings, and 

redemption 

by Keith R. Green 

53 Pickett Fences 

And the Band Plays On 

Beyond testing 

by Jim Pickett 

Distribution of Positively Aware is supported 

in part through an unrestricted grant from 

GlaxoSmithKline 

21 

28 

33 

38 

43 

46 



Articles 

21 Bob Bowers: The Pirate of Dane County 

Poster contest combines art with awareness to deliver a 

message of hope 

by Jeff Berry 

28 The Next Generation of Human Growth 

Hormone 

How serostim and tesamorelin measure up 

by Brett Grodeck 

33 Methadone Wellness 

Doctor and advocate Sarz Maxwell on the science—and 

madness 

Interview by Enid Vázquez 

36 Wellness Checklist 

Important things to consider when you’re HIV-positive 

by Joel Gallant, MD, MPH 

38 Nightsweats and T-Cells 

Where business and social service meet 


40 Long-term Survivors of HIV and Wellness 

No longer an oxymoron 

by Jeff Levy, LCSW 

43 Spotlight on Houston Buyers Club 

Club founder Fred Walters, Jr. talks about the history of 

HBC and the importance of nutritional supplements 

Interview by Jeff Berry 

46 A Personal Story 

Learning to live and love, all over again 

by Kim Johnson 

On the cover 

Bob Bowers, 45, HIV-positive, treatment 

advocate from Madison, Wisconsin. See story 

page 21. Photography ©2008 Russell McGonagle 

A model, photographer, or author’s HIV status should not be assumed based on 

their appearance in Positively Aware. 

You can view these (and other stories from previous issues) online at 

www.tpan.com and www.positivelyaware.com 

7

INDICATIONS 

ISENTRESS is an anti-HIV medicine that helps control 

HIV infection. ISENTRESS is used along with other anti- 

HIV medicines in patients who are already taking or have 

taken anti-HIV medicines that are not controlling their HIV 

infection, such as patients with HIV resistant to more than 

one type of anti-HIV medication. 

The safety and effectiveness of ISENTRESS have not 

been established for the treatment of HIV infection in adult 

patients who have never taken HIV medications before or 

in patients under 16 years of age. 

The use of other medications active against HIV in 

combination with ISENTRESS may increase the likelihood 

of your overall response to treatment. Your doctor will 

work with you to find the right combination of 

HIV medications. 

The long-term benefits and side effects of treatment with 

ISENTRESS are unknown at this time. It is important that 

you remain under your doctor’s care. There are no study 

results demonstrating the effect of ISENTRESS on clinical 

progression of HIV-1. 

ISENTRESS will NOT cure HIV infection or reduce your 

chance of passing HIV to others through sexual contact, 

sharing needles, or being exposed to your blood. 

ISENTRESS must be used with other anti-HIV medicines. 

IMPORTANT RISK INFORMATION 

Immune reconstitution syndrome can happen in some 

patients with advanced HIV infection (AIDS) when 

anti-HIV treatment is started. Signs and symptoms of 

inflammation from opportunistic infections may occur 

as the medicines work to control the HIV infection and 

strengthen the immune system. Call your doctor right away 

if you notice any signs or symptoms of an infection after 

starting ISENTRESS. 

Contact your doctor promptly if you experience 

unexplained muscle pain, tenderness, or weakness while 

taking ISENTRESS.

Presenting ISENTRESS. 

A different way to treat HIV when used 

as part of HIV combination therapy. 

The first drug in a class of HIV medications called integrase inhibitors. 

Based upon studies of up to 24-weeks: 

ISENTRESS when taken in combination with other anti-HIV medications may reduce 

viral load to undetectable (less than 400 copies/mL, or less than 50 copies/mL) a and 

may increase CD4 (T) cell counts. ISENTRESS may not have these effects in all patients. 

( a depending upon the test used) 

Talk to your doctor about ISENTRESS. 

Visit isentress.com for more information. 

Need help paying for ISENTRESS? Call the patient SUPPORT program at 1-800-850-3430. 

When ISENTRESS has been given with other anti-HIV 

drugs, the most common side effects included diarrhea, 

nausea, and headache. 

People taking ISENTRESS may still develop infections, 

including opportunistic infections or other conditions 

that occur with HIV infection. 

Tell your doctor about all of your medical conditions, 

including if you have any allergies, are pregnant or plan 

to become pregnant, or are breast-feeding or plan to 

breast-feed. ISENTRESS is not recommended for use 

during pregnancy. Women with HIV should not 

breast-feed because their babies could be infected 

with HIV through their breast milk. 

Tell your doctor about all the medicines you take, 

including prescription medicines such as rifampin 

(a medicine used to treat some infections such as 

tuberculosis), non-prescription medicines, vitamins, 

and herbal supplements. 

You are encouraged to report negative side effects of 

prescription drugs to the FDA. Visit www.fda.gov/medwatch, 

or call 1-800-FDA-1088. 

For additional information about ISENTRESS, please read 

the information on the following page. 

ISENTRESS is a registered trademark of Merck & Co., Inc. 

Copyright © 2008 Merck & Co., Inc. All rights reserved. 20850555(5)(101)-ISN-CON

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Photo © Russell McGonagle 

This Shouldn’t Happen 

Recently I ran into a friend of mine, Jim, at the Center on Halsted, 

Chicago’s beautiful and somewhat lavish GLBT center 

which opened earlier last year. Th at particular sunny, summer 

aft ernoon the Center was hopping with a diverse group of folks, 

a few straight, most of them gay—all of whom were comfortably 

lounging in the café, which is immediately adjacent to the spacious 

Whole Foods housed within the same building. 

Not long into my conversation I happened to inquire about a 

mutual friend of ours, who I’ll call Sam, who I hadn’t heard from 

in a while. 

No, Jim said, he had not heard from Sam, but another friend of 

his had, just a few weeks earlier, when Sam had called him from a 

pay phone. Sam informed his friend that he wasn’t doing well, that 

his phone had been disconnected, he was about to lose his apartment, 

and his health was quickly failing. 

I was shocked. For a second I was speechless. Sam and I have 

known each other for more than 25 years—he was one of the fi rst to 

befriend me when I moved to Chicago way back in the early eighties. 

We became close friends, and shared a lot in common, having 

moved in many of the same social and professional circles. He tested 

positive around the same time as I did. Aft er I became positive 

and started working at TPAN, he would periodically call me on the 

phone for advice about his treatment or health care, or sometimes 

just to talk. We would get together from time to time, but our lives 

eventually grew apart, and we began to see less and less of each 

other, as friends oft en do. He eventually moved out of state, but we 

still kept in touch. And we always made it a point to call each other 

on our birthdays, which are exactly six months apart. 

Th e last time I had tried calling Sam was a few months ago, 

on his birthday. I got a recording telling me the number had been 

disconnected. Somewhat confused, I quickly leafed through an old, 

tattered address book, searching in vain for an alternate number, or 

an old snail-mail address. I dialed directory assistance, even tried a 

search using Google. But it was to no avail, Sam always made sure 

his number was unlisted, and he had never learned to use a computer, 

so there was no e-mail address to try sending him a message. 

When Sam and I had last spoken, he was doing well and living 

on disability. Although he suff ered from chronic pain and neuropathy, 

and experienced complications from the drugs and from 

HIV, he had recently gone back on meds, aft er having been on an 

unplanned, extended drug holiday. His numbers were up, and he 

was feeling pretty good, most of the time anyway. While he had initially 

had some diffi culty accessing services and care when he had 

moved to a large city in a nearby state (a place that makes Chicago 

look like a walk in the park), he had fi nally gotten assistance from 

a local organization to help him navigate the system. 



Editor’s Note 

Yes, wellness begins with awareness. But once we are aware 

of our HIV status, and we start to become more in tune with our 

own health—and do what it is we need to do to learn how to navigate 

the oft en confusing maze of Medicare and our broken-down 

system of care, it still doesn’t always guarantee wellness. A recent 

poll showed that 90% of the people who called the 1-800-Medicare 

hotline—a helpline which was mandated by Congress in order to 

assist people who had questions about all of the recent changes in 

Medicare— were given at least one piece of incorrect information. 

90%! And the majority of callers were given confl icting answers 

from diff erent operators. 

People with HIV/AIDS still struggle on a daily basis just to get 

the basic necessities such as decent and aff ordable housing, access 

to care and treatment, case management and mental health services, 

and to be free from stigma and discrimination. Th is shouldn’t 

be happening in the United States, one the wealthiest nations on 

the planet. And tell me, just who is going to advocate for these individuals 

during this next administration, which stands to inherit a 

budget defi cit upwards of 10 trillion dollars? 

As we go to press with this issue, the CDC released the 2006 

HIV incidence statistics which show that new cases of HIV infection 

are actually 56,300 annually, not the 40,000 that had previously 

been reported. Th ese numbers have probably been at that level 

for at least the last 10 years. Th e report indicated that this does not 

actually refl ect an increase in the rate of transmission, but rather 

that the previous estimate of 40,000 was too low. Some consolation. 

And these statistics are already two years old. 

So we push to test, test, test. People are still becoming infected. 

And they continue to fall through the cracks in a system in desperate 

need of repair. 

Th is shouldn’t happen. 

Sam, I know you’re out there, and if you’re reading this—I love 

you, man. Call me. I’m here for you. 

Take care of yourself, and each other. 

Jeff Berry 

Editor 

publications@tpan.com 

11

Readers Forum 

Transgender and HIV 

I just fi nished reading the entire journal 

cover to cover [July/August 2008]. Great 

job! You are to be commended for your honesty 

and integrity, and for daring to broach 

a subject many people, even in the HIV/ 

AIDS arena, do not want to talk about. 

Azella C. Collins, MSN, RN, Chicago 

Chapter National Black Nurses 

Association, via the Internet 

Thank you for your recent issue related 

to transgender people and HIV. I have 

been a fan of PA for years and felt, well, validated 

by the issue. 

Elizabeth Mendia, Executive Director, 

Whittier Rio Hondo AIDS Project 

Whittier, California 

Ask the HIV Specialist 

It was kind, I suppose, for [doctor] 

Tonia Poteat to answer Itchy and Worried’s 

question about his chance of getting infected 

with HIV from a fi ve-second open mouth 

kiss with a Vietnamese CSW [commercial 

sex worker] [Ask the HIV Specialist, May/ 

June 2008], but reading about his paranoid 

worry was annoying and tiresome. It is saddening 

too, that 25 years into the epidemic 

a guy is still worrying about catching HIV 

Positively Aware will treat all 

communications (letters, faxes, e-mail, 

etc.) as letters to the editor unless 

otherwise instructed. We reserve the 

right to edit for length, style style, or clarity. 

Please advise if we can use your name 

and city. 

Write to: Positively Aware, 

5537 North Broadway 


Fax: (773) 989–9494 

E-mail: readersforum@tpan.com 

12 

from a kiss. People with HIV have real stuff 

to worry about. 

Name withheld, via the Internet 

What is Sacred? 

Thanks for the wonderful piece on 

“What is Sacred” [May/June 2005)! Finally, 

someone who can speak to the possibility 

that a gay man doesn’t have to respond from 

his penis—but perhaps should respond 

from his heart and soul. Do you know of 

any organizations in the Minneapolis-St. 

Paul area that are doing similar work of 

integrating faith and hope into clinical 

work? By the way, I do bodywork and massage, 

and can’t tell you how oft en the fi rst 

thing I heard from gay men when I tell them 

what I do is, “Wow! You must really get to 

see some nice bodies and dicks!” Th ey are 

serious, and don’t really want to hear about 

my work. Th ey simply want to hear about 

the bodies on which I work. I am very tired 

of hearing that response. 

Name withheld, via the Internet 

Resp onse from Tony Hollenback: I am 

humbled by your words and am grateful that 

you were touched by the article. It gives me 

hope that as a gay community we can begin 

to change and create how we see ourselves 

and how we see each other—our friendships 

and work, our personal and sexual relationships. 

Opportunities to connect on a deeper 

level take the relationship to a very diff erent 

place. I don’t know anything about the community 

in the Twin Cities, but will refer several 

Chicago websites that might be a source 

of support for you. Th e Native American 

communities are very open to embracing 

and honoring gay men as being “twin sp irited,” 

meaning we carry the male and female 

energy. You might want to check online to see 

if you can fi nd a local Native American tribe, 

medicine man or woman, sweat lodge, etc. 

Th is would be a wonderful source of sacred 

community honoring who you are as a gay 

man. Let me know if I can be of any help to 

you in your journey. I have my own private 

pract ice and lead sacred circles and retreats, 

as well as individual work. 

Save the World 

Th anks ever so much for your column 

in Th eBody.com [Editor’s Note, “Four Minutes 

to Save the World,” May/June 2008]. 

As a 22-year survivor, I’m consistently disheartened 

by the nonexistence of media 

advocacy for HIV-related issues these days. 

Where are the visible spokespeople? I’m currently 

working with a group of guys in our 

local stop-in support group with the idea 

of coming up with events to focus attention 

on HIV, and I must say I’m astounded 

by some of the conversation among some 

of the members. Sometimes the lack of 

concern leaves me feeling angry and confused. 

Likewise, as an African American, 

I’m bothered by both the climbing rates of 

infection and the denial that surrounds the 

black community. I think a very commercial, 

sexy approach to HIV awareness is of 

join us on MySpace at 

www.myspace.com/positivelyaware 

Add us as your friend and check out some of 

our other community partners. 

Stay Current with 

PA E-mail Updates 

Sign-up today for our Positively Aware 

e-mail newsletter and receive regular 

updates on HIV treatment news and 

information. 

Visit www.tpan.com or www.positivelyaware.com 

and click on Subscribe 

to TPAN E-mail Updates, enter your 

e-mail address and click Submit. Once 

you receive a confi rmation e-mail, you 

can update your TPAN profi le to include 

“Positively Aware Updates.” 


Positively Aware

the utmost priority if we’re ever to reach the 

bulk of humanity. Th e movement has lost 

lots of steam since the early days of ACT 

UP, but let’s hope apathy doesn’t win out. As 

you say, there’s too much at stake. Yours is a 

great article that I will certainly share with 

the guys in our group. 

Ben, New York City, 

via the Internet 

On January 3rd of this year, I tested HIVpositive. 

My whole world changed on 

that day, and not for the worse. Yes, while 

learning to understand the complexity of 

this illness and how to treat it and keep my 

body clean and healthy, I also realized that 

the st igma of HIV still exists and, surprisingly, 

more so among HIV-negative men— 

go fi gure. I read your article on the Th eBody. 

com and I am here to tell you that if you 

need some new blood to help change the 

perception of his illness—I am here for you! 

While I’m still educating myself on what to 

expect as time goes on, I truly believe that 

half the problem of living through this is 

how others perceive us, and that infuriates 

me! I lost a good friend over my diagnosis. 

He is a 40-year-old gay, HIV-negative man 

living in N.Y.C. I’m not really sure what 

happened. Maybe it was his fear of having 

someone so close to him get the news, 

maybe it was his fear of even talking about 

the disease. I feel that open dialogue about 

this among people of all status is important. 

I have been going to an HIV support group 

meeting at the Gay and Lesbian Center here 

in NYC since two weeks into my diagnosis. 

What I’ve learned most about being there 

and sharing stories is that some of the older 

gentlemen in my group who have been living 

with this for years and years are stuck in 

the perception of themselves and how this 

disease has changed them, but I am also 

hearing that they are sick and tired of what 

others say and feel about it. Th e fact is, HIV 

has changed dramatically over the years. It 

is not the same disease as it was back in the 

late ’80s and ’90s. It has taken me a while 

to realize that, but I am confi dent that the 

treatment methods that are out there today 

can continue our longevity well into our old 

age, and then some. Don’t we all just want 

to live happy, healthy, and productive lives? 

For a long time, I was ignorant of STDs 

and all that is out there, and what I can and 

cannot catch through risky behavior. (Risky 

behavior = bad consequences, regardless!) 

For a long time I felt invincible. If I didn’t 

feel sick or have any symptoms of anything, 

then I was fi ne. Wrong! 

How can we change peoples’ opinions, 

or rather their perception, of this disease? 

Yes, there is more education in the school 

system than ever before and that is great. 

Th ere are also groups popping up all over 

the place that provide a safe haven for people 

both negative and positive to get educated 

and help educate others. Do we need 

to establish more groups to help focus the 

attention on educating negative gay men 

on this disease, maybe have some positive 

moderators to help answer their questions? 

I do admit, before my diagnosis I was afraid 

to talk about STDs and HIV, but like it or 

not, this is a big part of our community, 

and to help our community continue to 

live and thrive and be healthy, more needs 

to be done. I enjoyed reading your note and 

I implore you to continue that message as I 

will try and do the same. 

Ryan Halpner, New York City, 

via the Internet 



Prison tale 

I am an HIV-positive person currently 

incarcerated. I am trying to get the prison 

to start a support group for persons here 

who are HIV-positive. HIV/AIDS is still a 

taboo topic in prison, even by those who are 

living with the disease. I’m trying to gather 

as much information as I can for myself and 

the soon-to-be support group. 

Before my incarceration I worked as 

an outreach worker for Prevention Point 

(needle exchange) and GALAEI (Gay and 

Lesbian AIDS Education Initiative), both in 

Philadelphia. I identify as an African American 

heterosexual male who has been living 

with HIV since 1994. I don’t know when I 

became infected, who gave it to me, or how 

I got it. For fi ve years I lived in denial, having 

the time of my life sleeping with some 

beautiful women, gorgeous transvestites, 

and prostitutes all over. All of this happened 

aft er I found out I was HIV-positive, 

and I was doing all this sexing unprotected. 

I was dealing drugs and traveling to some 

wonderful places. I wasn’t a drug addict, so 

in the so-called “hood” I was what they call 

a ghetto superstar. Well, I ended up going to 

prison and realizing that if I didn’t change 

my life I was going to die. So, I took advantage 

of all the organizations in Philadelphia 

available for HIV-positive people. Th rough 

those agencies I got my own apartment 

for the fi rst time, I got all the help I needed 

emotionally, and I even took a class at 

Philadelphia FIGHT called Project TEACH, 

which I graduated from. I must tell you that 

was my fi rst time graduating from anything. 

Some of the things that happened for me 

are unbelievable. Working at the homeless 

shelter, doing outreach work, and speaking 

at Temple University with Magic Johnson. 

Even though he didn’t show up, it was just 

an honor to be on the same program. Th is 

may sound crazy, but HIV saved my life. If I 

had never found out I was infected, I would 

be still living that same destructive lifestyle. 

Presently I am incarcerated for something 

I did prior to my 180-degree turn around 

from quote unquote “street thug” to AIDS 

activist. I want you to let all the people living 

with this disease know that we are in 

this together! I know you’ve heard plenty of 

stories like mine and it may not seem any 

more unique than anyone else’s story. Well, 

it’s unique to me because I lived it. Keep up 

the good work. 

Larry Watson, White Deer, PA e 

13

PA Online Poll 

Thanks to all of you who 

tuned in and commented on 

our daily blog from the 

AIDS 2008 conference in 

Mexico City. 

We really would love to hear 

from you as we expand 

our blog and community 

forum section at our 

newly redesigned website, 

www.positivelyaware.com. 

So, if you haven’t done so 

already, please register (it 

only takes a minute) and 

join in on the dialogue. 

Lots of interesting stuff 

going on—and lots more 

interesting stuff to come! 

No 

12% 

Are you on HIV therapy? 

Yes = 88% 

No = 12% 

Special 20th Anniversary Issue in January/February 

July / August Poll Results 

Yes 

88% 

Comments 

Are you currently taking 

any complementary or 

alternative therapy? 

Yes = 52% 

No = 48% 

· Many of us on HIV therapy are concerned about the long term eff ects of 

HIV therapy. Are there ongoing studies being conducted? 

[Editor’s note: Yes, to learn more visit www.clinicaltrials.gov. There are also 

many large, long term observational cohort studies such as MACS, VACS 

and WIHS.] 

· I am taking Atripla once a day. 

September / October Poll Question 

At the recent AIDS 2008 conference in Mexico City, there 

was talk about condom induced erectile dysfunction as a 

possible risk factor for HIV transmission 

(see Keith Green’s blog at www.positivelyaware.com). 

This month’s question: 

No 

48% 

Have you or your partner ever experienced a loss of 

erection when using a condom? 

Vote at 

www.positivelyaware.com 

Yes 

52% 

Positively Aware celebrates its 20th anniversary, going back to its origin as TPA News, with a special issue in January/February 

2009. Th e annual drug guide will be published in March/April instead. If you have any reminiscences or updates about your experiences 

at TPAN or with Positively Aware that you’d like to share, especially from the early days, please submit them to publications@ 

tpan.com or to our mailing address by November 24. 

14 


Positively Aware

AS PART OF 

HIV COMBINATION THERAPY: 

SUSTIVA 

ONCE-DAILY SUSTIVA IN HIV COMBINATION THERAPY: 

• Can help keep viral loads undetectable* for a long time † 

• Helps improve your body’s immune system by raising your T-cell count 

*Undetectable is defined as a viral load of less than 400 copies/mL or less than 

50 copies/mL (depending on the test used). 

† Up to 168 weeks. 

IMPORTANT INFORMATION ABOUT 

SUSTIVA ® (efavirenz) 

INDICATION: SUSTIVA ® is a prescription 

medicine used in combination with other 

medicines to treat people who are infected 

with the human immunodeficiency 

virus type 1 (HIV-1). 

SUSTIVA does not cure HIV and has not 

been shown to prevent passing HIV to 

others. 

See your healthcare provider regularly. 

IMPORTANT SAFETY INFORMATION: 

Do not take SUSTIVA if you are taking the 

following medicines because serious and 

life-threatening side effects may occur 

when taken together: 

Hismanal ® (astemizole), Vascor ® (bepridil), 

Propulsid ® (cisapride), Versed ® (midazolam), 

Orap ® (pimozide), Halcion ® (triazolam), or 

ergot medicines (for example, Wigraine ® 

and Cafergot ® ). 

In addition, SUSTIVA should not be taken 

with: Vfend ® (voriconazole) since it may lose 

its effect or may increase the chance of 

having side effects from SUSTIVA. Some doses 

of voriconazole can be taken at the same 

time as a lower dose of SUSTIVA, but you 

must check with your doctor first. 

SUSTIVA should not be taken with 

ATRIPLA ® (efavirenz 600 mg/emtricitabine 

200 mg/tenofovir disoproxil fumarate 

300 mg) because it contains efavirenz, the 

active ingredient of SUSTIVA. 

Fortovase ® , Invirase ® (saquinavir mesylate) 

should not be used as the only protease 

inhibitor in combination with SUSTIVA. 

Taking SUSTIVA with St. John’s wort 

(Hypericum perforatum) is not recommended 

as it may cause decreased levels of SUSTIVA, 

& ME 

SUSTIVA does not cure HIV and has not been shown to prevent passing HIV to others. 

Individual results may vary. 

increased viral load, and possible resistance 

to SUSTIVA (efavirenz) or cross-resistance to 

other anti-HIV drugs. 

This list of medicines is not complete. 

Discuss with your healthcare provider 

all prescription and non-prescription 

medicines, vitamins, and herbal 

supplements you are taking or plan 

to take. 

Tell your healthcare provider right away 

if you have any side effects or conditions, 

including the following: 

•Severe depression, strange thoughts, 

or angry behavior have been reported by 

a small number of patients taking SUSTIVA. 

Some patients have had thoughts of suicide 

and a few have actually committed suicide. 

These problems may occur more often in 

patients who have had mental illness. 

•Dizziness, trouble sleeping or 

concentrating, drowsiness, unusual 

dreams, and/or hallucinations are 

common, and tend to go away after taking 

SUSTIVA for a few weeks. Symptoms were 

severe in a few patients and some patients 

discontinued therapy. These symptoms may 

become more severe with the use of alcohol 

and/or mood-altering (street) drugs. If you 

are dizzy, have trouble concentrating, and/or 

are drowsy, avoid activities that may be 

dangerous, such as driving or operating 

machinery. 

•If you have ever had mental illness or are 

using drugs or alcohol. 

•Pregnancy: Women should not become 

pregnant while taking SUSTIVA and for 

12 weeks after stopping SUSTIVA. 

SUSTIVA and the SUNRISE logo are registered trademarks of Bristol-Myers Squibb Pharma Company. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. 

All other trademarks are owned by third parties. 

© 2008 Bristol-Myers Squibb Company, Princeton, NJ 08543 U.S.A. 692US08AB01101 05/08 

Please see Patient Information about SUSTIVA on the next page. 

. .. We’re in this together. 

Ask your doctor if SUSTIVA is right for you. 

Visit www.sustiva.com 

Serious birth defects have been seen 

in children of women treated with 

SUSTIVA (efavirenz) during pregnancy. 

Therefore, women must use a reliable form 

of barrier contraception, such as a condom 

or diaphragm, even if they also use other 

methods of birth control. 

•Breast-Feeding: Women with HIV should 

not breast-feed because they can pass HIV 

through their milk to the baby. Also, SUSTIVA 

may pass through breast milk and cause 

serious harm to the baby. 

•Rash is a common side effect that usually 

goes away without any change in your 

medicines, but may be serious in a small 

number of patients. Rash may be a serious 

problem in some children. 

•If you have liver disease, your healthcare 

provider may want to do tests to check 

your liver. 

•Seizures have occurred in patients taking 

SUSTIVA, usually in those with a history of 

seizures. If you have ever had seizures, or 

take medicines for seizures, your healthcare 

provider may want to switch you to another 

medicine or monitor you. 

Changes in body fat have been seen in 

some patients taking anti-HIV medicines. 

The cause and long-term health effects are 

not known. 

Other common side effects of SUSTIVA 

taken with other anti-HIV medicines include: 

tiredness, upset stomach, vomiting, and 

diarrhea. 

You should take SUSTIVA on an empty 

stomach, preferably at bedtime, which may 

make some side effects less bothersome. 

SUSTIVA is one of several treatment options 

your doctor may consider. 

You are encouraged to report negative side 

effects of prescription drugs to the FDA. Visit 

www.fda.gov/medwatch or call 1-800-FDA-1088.

PATIENT INFORMATION 

SUSTIVA ® (sus-TEE-vah) 

[efavirenz (eh-FAH-vih-rehnz)] 

capsules and tablets 

ALERT: Find out about medicines that should NOT be taken with SUSTIVA (efavirenz). 

Please also read the section “MEDICINES YOU SHOULD NOT TAKE WITH SUSTIVA.” 

Read this information before you start taking SUSTIVA. Read it again each time you refill your prescription, 

in case there is any new information. This leaflet provides a summary about SUSTIVA and does not include 

everything there is to know about your medicine. This information is not meant to take the place of talking with 

your doctor. 

What is SUSTIVA? 

SUSTIVA is a medicine used in combination with other medicines to help treat infection with Human 

Immunodeficiency Virus type 1 (HIV-1), the virus that causes AIDS (acquired immune deficiency syndrome). 

SUSTIVA is a type of anti-HIV drug called a “non-nucleoside reverse transcriptase inhibitor” (NNRTI). NNRTIs are 

not used in the treatment of Human Immunodeficiency Virus type 2 (HIV-2) infection. 

SUSTIVA works by lowering the amount of HIV-1 in the blood (viral load). SUSTIVA must be taken with other 

anti-HIV medicines. When taken with other anti-HIV medicines, SUSTIVA has been shown to reduce viral load 

and increase the number of CD4+ cells, a type of immune cell in blood. SUSTIVA may not have these effects in 

every patient. 

SUSTIVA does not cure HIV or AIDS. People taking SUSTIVA may still develop other infections and 

complications. Therefore, it is very important that you stay under the care of your doctor. 

SUSTIVA has not been shown to reduce the risk of passing HIV to others. Therefore, continue to practice 

safe sex, and do not use or share dirty needles. 

What are the possible side effects of SUSTIVA? 

Serious psychiatric problems. A small number of patients experience severe depression, strange thoughts, 

or angry behavior while taking SUSTIVA. Some patients have thoughts of suicide and a few have actually 

committed suicide. These problems tend to occur more often in patients who have had mental illness. Contact 

your doctor right away if you think you are having these psychiatric symptoms, so your doctor can decide if you 

should continue to take SUSTIVA. 

Common side effects. Many patients have dizziness, trouble sleeping, drowsiness, trouble concentrating, 

and/or unusual dreams during treatment with SUSTIVA. These side effects may be reduced if you take SUSTIVA 

at bedtime on an empty stomach. They also tend to go away after you have taken the medicine for a few weeks. 

If you have these common side effects, such as dizziness, it does not mean that you will also have serious 

psychiatric problems, such as severe depression, strange thoughts, or angry behavior. Tell your doctor right 

away if any of these side effects continue or if they bother you. It is possible that these symptoms may be more 

severe if SUSTIVA is used with alcohol or mood altering (street) drugs. 

If you are dizzy, have trouble concentrating, or are drowsy, avoid activities that may be dangerous, such as 

driving or operating machinery. 

Rash is common. Rashes usually go away without any change in treatment. In a small number of patients, 

rash may be serious. If you develop a rash, call your doctor right away. Rash may be a serious problem in 

some children. Tell your child’s doctor right away if you notice rash or any other side effects while your child 

is taking SUSTIVA. 

Other common side effects include tiredness, upset stomach, vomiting, and diarrhea. 

Changes in body fat. Changes in body fat develop in some patients taking anti-HIV medicine. These changes 

may include an increased amount of fat in the upper back and neck (“buffalo hump”), in the breasts, and around 

the trunk. Loss of fat from the legs, arms, and face may also happen. The cause and long-term health effects 

of these fat changes are not known. 

Tell your doctor or healthcare provider if you notice any side effects while taking SUSTIVA. 

Contact your doctor before stopping SUSTIVA because of side effects or for any other reason. 

This is not a complete list of side effects possible with SUSTIVA. Ask your doctor or pharmacist for a more 

complete list of side effects of SUSTIVA and all the medicines you will take. 

How should I take SUSTIVA? 

General Information 

• You should take SUSTIVA on an empty stomach, preferably at bedtime. 

• Swallow SUSTIVA with water. 

• Taking SUSTIVA with food increases the amount of medicine in your body, which may increase the frequency 

of side effects. 

• Taking SUSTIVA at bedtime may make some side effects less bothersome. 

• SUSTIVA must be taken in combination with other anti-HIV medicines. If you take only SUSTIVA, the medicine 

may stop working. 

• Do not miss a dose of SUSTIVA. If you forget to take SUSTIVA, take the missed dose right away, unless it is 

almost time for your next dose. Do not double the next dose. Carry on with your regular dosing schedule. If 

you need help in planning the best times to take your medicine, ask your doctor or pharmacist. 

• Take the exact amount of SUSTIVA your doctor prescribes. Never change the dose on your own. Do not stop 

this medicine unless your doctor tells you to stop. 

• If you believe you took more than the prescribed amount of SUSTIVA, contact your local Poison Control Center 

or emergency room right away. 

• Tell your doctor if you start any new medicine or change how you take old ones. Your doses may need 

adjustment. 

• When your SUSTIVA supply starts to run low, get more from your doctor or pharmacy. This is very important 

because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The 

virus may develop resistance to SUSTIVA and become harder to treat. 

• Your doctor may want to do blood tests to check for certain side effects while you take SUSTIVA. 

Capsules 

• The dose of SUSTIVA capsules for adults is 600 mg (three 200-mg capsules, taken together) once a day by 

mouth. The dose of SUSTIVA for children may be lower (see Can children take SUSTIVA?). 

Tablets 

• The dose of SUSTIVA tablets for adults is 600 mg (one tablet) once a day by mouth. 

Can children take SUSTIVA? 

Yes, children who are able to swallow capsules can take SUSTIVA. Rash may be a serious problem in some 

children. Tell your child’s doctor right away if you notice rash or any other side effects while your child is taking 

SUSTIVA. The dose of SUSTIVA for children may be lower than the dose for adults. Capsules containing lower 

doses of SUSTIVA are available. Your child’s doctor will determine the right dose based on your child’s weight. 

Who should not take SUSTIVA? 

Do not take SUSTIVA if you are allergic to the active ingredient, efavirenz, or to any of the inactive 

ingredients. Your doctor and pharmacist have a list of the inactive ingredients. 

What should I avoid while taking SUSTIVA? 

• Women should not become pregnant while taking SUSTIVA and for 12 weeks after stopping it. Serious 

birth defects have been seen in the offspring of animals and women treated with SUSTIVA during pregnancy. 

It is not known whether SUSTIVA caused these defects. Tell your doctor right away if you are pregnant. 

Also talk with your doctor if you want to become pregnant. 

• Women should not rely only on hormone-based birth control, such as pills, injections, or implants, because 

SUSTIVA (efavirenz) may make these contraceptives ineffective. Women must use a reliable form of barrier 

contraception, such as a condom or diaphragm, even if they also use other methods of birth control. SUSTIVA 

may remain in your blood for a time after therapy is stopped. Therefore, you should continue to use 

contraceptive measures for 12 weeks after you stop taking SUSTIVA. 

• Do not breast-feed if you are taking SUSTIVA. The Centers for Disease Control and Prevention recommend 

that mothers with HIV not breast-feed because they can pass the HIV through their milk to the baby. Also, 

SUSTIVA may pass through breast milk and cause serious harm to the baby. Talk with your doctor if you are 

breast-feeding. You may need to stop breast-feeding or use a different medicine. 

• Taking SUSTIVA with alcohol or other medicines causing similar side effects as SUSTIVA, such as drowsiness, 

may increase those side effects. 

• Do not take any other medicines without checking with your doctor. These medicines include prescription 

and nonprescription medicines and herbal products, especially St. John’s wort. 

Before using SUSTIVA, tell your doctor if you 

• have problems with your liver or have hepatitis. Your doctor may want to do tests to check your liver while 

you take SUSTIVA. 

• have ever had mental illness or are using drugs or alcohol. 

• have ever had seizures or are taking medicine for seizures [for example, Dilantin ® (phenytoin), Tegretol ® 

(carbamazepine), or phenobarbital]. Your doctor may want to switch you to another medicine or check drug 

levels in your blood from time to time. 

What important information should I know about taking other medicines with SUSTIVA? 

SUSTIVA may change the effect of other medicines, including ones for HIV, and cause serious side 

effects. Your doctor may change your other medicines or change their doses. Other medicines, including herbal 

products, may affect SUSTIVA. For this reason, it is very important to: 

• let all your doctors and pharmacists know that you take SUSTIVA. 

• tell your doctors and pharmacists about all medicines you take. This includes those you buy over-the-counter 

and herbal or natural remedies. 

Bring all your prescription and nonprescription medicines as well as any herbal remedies that you are 

taking when you see a doctor, or make a list of their names, how much you take, and how often you take them. 

This will give your doctor a complete picture of the medicines you use. Then he or she can decide the best 

approach for your situation. 

Taking SUSTIVA with St. John’s wort (Hypericum perforatum), an herbal product sold as a dietary 

supplement, or products containing St. John’s wort is not recommended. Talk with your doctor if you are taking 

or are planning to take St. John’s wort. Taking St. John’s wort may decrease SUSTIVA levels and lead to 

increased viral load and possible resistance to SUSTIVA or cross-resistance to other anti-HIV drugs. 

MEDICINES YOU SHOULD NOT TAKE WITH SUSTIVA 

The following medicines may cause serious and life-threatening side effects when taken with SUSTIVA. You 

should not take any of these medicines while taking SUSTIVA: 

• Hismanal ® (astemizole) 

• Vascor ® (bepridil) 

• Propulsid ® (cisapride) 

• Versed ® (midazolam) 

• Orap ® (pimozide) 

• Halcion ® (triazolam) 

• Ergot medications (for example, Wigraine ® and Cafergot ® ) 

The following medicine should not be taken with SUSTIVA since it may lose its effect or may increase the 

chance of having side effects from SUSTIVA: 

• Vfend ® (voriconazole). Some doses of voriconazole can be taken at the same time as a lower dose of 

SUSTIVA, but you must check with your doctor first. 

The following medicine should not be taken with SUSTIVA since it contains efavirenz, the active ingredient in 

SUSTIVA: 

• ATRIPLA ® (efavirenz, emtricitabine, tenofovir disoproxil fumarate) 

The following medicines may need to be replaced with another medicine when taken with SUSTIVA: 

• Fortovase ® , Invirase ® (saquinavir) 

• Biaxin ® (clarithromycin) 

• Carbatrol ® , Tegretol ® (carbamazepine) 

• Sporanox ® (itraconazole) 

The following medicines may require a change in the dose of either SUSTIVA or the other medicine: 

• Calcium channel blockers such as Cardizem ® or Tiazac ® (diltiazem), Covera HS ® or Isoptin SR ® (verapamil), 

and others. 

• The cholesterol-lowering medicines Lipitor ® (atorvastatin), PRAVACHOL ® (pravastatin sodium), and 

Zocor ® (simvastatin). 

• Crixivan ® (indinavir) 

• Kaletra ® (lopinavir/ritonavir) 

• Methadone 

• Mycobutin ® (rifabutin) 

• REYATAZ ® (atazanavir sulfate). If you are taking SUSTIVA and REYATAZ, you should also be taking 

Norvir ® (ritonavir). 

• Rifadin ® (rifampin) or the rifampin-containing medicines Rifamate ® and Rifater ® . 

• Zoloft ® (sertraline) 

These are not all the medicines that may cause problems if you take SUSTIVA. Be sure to tell your 

doctor about all medicines that you take. 

General advice about SUSTIVA: 

Medicines are sometimes prescribed for conditions that are not mentioned in patient information 

leaflets. Do not use SUSTIVA for a condition for which it was not prescribed. Do not give SUSTIVA to 

other people, even if they have the same symptoms you have. It may harm them. 

Keep SUSTIVA at room temperature (77°F) in the bottle given to you by your pharmacist. The temperature 

can range from 59° to 86°F. 

Keep SUSTIVA out of the reach of children. 

This leaflet summarizes the most important information about SUSTIVA. If you would like more information, 

talk with your doctor. You can ask your pharmacist or doctor for the full prescribing information about SUSTIVA, 

or you can visit the SUSTIVA website at http://www.sustiva.com or call 1-800-321-1335. 

SUSTIVA is a registered trademark of Bristol-Myers Squibb Pharma Company, ATRIPLA is a trademark of 

Bristol-Myers Squibb & Gilead Sciences, LLC, PRAVACHOL is a registered trademark of ER Squibb & Sons, LLC, 

and REYATAZ is a registered trademark of Bristol-Myers Squibb Company. Other brands listed are the 

trademarks of their respective owners. 

Distributed by: 

1212823A2 T4-B0001B-03-08 Rev March 2008


Drug label changes, including pediatric doses 

Th ree HIV drugs—Aptivus, Kaletra, and Viramune—updated 

their drug label and included changes in pediatric 

doses. Th e U.S. Food and Drug Administration 

(FDA) approved an oral solution of Aptivus in June, 

and the drug’s label was updated to include 

dosing recommendations for children ages 2 

to 18 years old. Among other changes, Kaletra 

should not be given only once-a-day in 

children under 18 years of age. Also, the 

oral version of the anti-anxiety medication 

midazolam (brand name Versed and 

others) should not be used by people taking 

Aptivus or Kaletra, and the intravenous version 

should be monitored closely if used, with dose 

adjustment if needed. Viramune also expanded 

the category of people with liver damage who 

should not take the drug. In addition, the revised 

label states that lead-in dosing should not exceed 

28 days. See the package insert or consult your 

pharmacist or doctor for more information. 

New Ziagen drug label 

Th e Ziagen (generic name abacavir) drug 

label has also been updated, to include informa- 

tion on 

genetic testing and heart disease 

risk ris factors. Ziagen/abacavir is also 

found fo in Epzicom and Trizivir. 

An inexpensive (approximately 

$125) $1 genetic test should be taken before 

going goingonZiagen on Ziagen. Th e test only looks for a very specifi c genetic 

marker which indicates the person could have an allergic-like reaction 

to Ziagen. Th is hypersensitivity reaction (HSR) is potentially 

dangerous. Th e new label states that people who previously had a 

suspected HSR but who had not taken the HLA-B*5701 test can try 

to take Ziagen again, but only if they take the test and it comes back 

negative. Going back on abacavir could be fatal if someone truly 

has HSR! HSR, however, can be diffi cult to diagnose, and hence the 

helpfulness of the update. HSR can be confused with the fl u or with 

a reaction to other HIV medications, such as a rash with Sustiva or 

Viramune. Th e two most common symptoms of an abacavir HSR, 

however, are not rash, but fever and constitutional illness (muscle 

ache, fatigue, etc.). Other potential symptoms include gastrointestinal 

problems (nausea, vomiting, diarrhea, or stomach pain) and 

respiratory illness (diffi culty breathing, cough, or pharyngitis). 

Abacavir HSR also gets worse with each single dose, and usually 

occurs early, within six weeks of going on the medication. 



News Briefs 

by Enid Vázquez 

Th e other update to the drug label of the various medications 

that include abacavir is a statement to health care providers that 

they should consider underlying risk factors for coronary 

heart disease in patients going on abacavir, and 

treat those risk factors, such as high blood pressure, 

diabetes, and smoking. Recent news raised questions 

about abacavir’s role in cardiac problems 

(see “Th e Price of Surviving HIV” in the May/ 

June 2008 issue, a round-up of therapy news.) 

Isentress continues to glow 

Th e fi rst in its drug class HIV drug Isentress 

(raltegravir) continued to show good results at 48 

weeks, as it did in 24-week data which helped lead 

to its approval by the U.S. Food and Drug g Administration 

(FDA) late last year. (See 

also Th e Buzz, page 49.) Isentress, ess, 

an integrase inhibitor, has to date e a 

sterling reputation with HIV treatreatment advocates, who credit the drug 

with saving the lives of many people with 

advanced disease and treatment experience. Th e 

fi ndings, published in the New England Journal of 

Medicine, reported that in these advanced patients 

(the only ones allowed in studies with Isentress), 

62% had undetectable viral load compared to 33% 

of the comparison group participants, who were 

taking other potent HIV drug combinations. People 

taking an Isentress drug combination also had a 

T-cell increase of 109 compared to 45 for the other group. 

A subgroup analysis looked at the number of active drugs 

in study participants’ regimens. People with a low phenotypic or 

genotypic sensitivity score (PSS or GSS) have a less eff ective regimen, 

due to the development of drug resistance in their virus. In 

this report, of the people with a GSS score of zero, 45% of those 

taking Isentress had undetectable viral load, compared to 3% of 

those who were not taking Isentress. Th ey had a T-cell increase of 

81 compared to 11. For people with a GSS of 2, 77% of those taking 

Isentress were undetectable compared to 62% taking placebo (fake 

pill) with an optimized background therapy (OBT). Th eir average 

T-cell increases were 145 for the Isentress group and 87 for the placebo 

group. 

New OI guidelines 

Th e U.S. Department of Health and Human Services (DHHS) 

in July published updated guidelines for the prevention and treatment 

of opportunistic infections (OIs) in people with HIV. Infections 

are considered opportunistic when they cause illness in 

17

News Briefs continued 

someone with a weakened immune 

system. In writing for aidsmeds.com 

(now a part of POZ magazine), advocate 

David Evans reported that, “According 

to Dr. [Henry] Masur, a lead author of 

the guidelines, about one-third of people 

who test positive for HIV in many 

U.S. cities do so only aft er they already 

have AIDS and require treatment for a 

life-threatening [OI]—or are in immediate 

danger of experiencing one. So 

it can be misleading to consider HIV 

and its related illnesses a thing of the 

past.” Th is is the fi rst major update of 

the guidelines in years, and a report 

on the changes will be published in the 

Morbidity and Mortality Weekly Report 

of the U.S. Centers for Disease Control 

and Prevention (CDC). DC). 

According to the introduction to 

the guidelines, “Major ajor changes include: 

(1) more emphasis on the importance of ART for prevention and 

treatment of OIs, especially specially those for which which specifi c chemoprophylaxis 

[prevention] and treatment do not exist; (2) information information on 

diagnosis and management agement of immune reconstitution infl ammato- ammatory 

syndromes (IRIS); S); (3) information on interferon-gamma release 

assays (IGRAs) for r the detection 

of latent Mycobactericobacterium tuberculosis infections; nfections; 

(4) updated information mation on 

drug interactions aff ecting use 

of rifamycin drugs s for prevention 

and treatment of tuberculosis uberculosis (TB); (5) the 

addition of a section n on hepatitis B virus (HBV) infection; 

and (6) the addition ddition of a section on malaria to the OIs of 

geographic interest.” .” 

IRIS refers to the he fl are-up of various illnesses when a person’s 

immune system improves, proves, aft er they go on HIV therapy. See Evan’s 

interview with Dr. Masur. Find the guidelines at www.aidsinfo.org 

or request a copy at 1-800-HIV-0440 (448-0440). Note: the guidelines 

are more than 200 pages long. 

Black people, genetics, and HIV 

A study published in the journal Cell Host & Microbe reported 

that black people may be at greater risk of becoming infected 

with HIV because of a gene mutation. Th e researchers believe the 

mutation probably protected people in sub-Saharan Africa from a 

18 

type of malaria. Th e study results need 

confi rmation, but tantalized advocates 

of people with HIV. Previous reports 

from other researchers have found that 

African Americans have a higher rate 

of infection without a higher rate of 

risky behavior. Although several socioeconomic 

risk factors, such as lack of 

access to health care, have been cited 

in the higher infection rate, advocates 

have raised questions about possible 

biological mechanisms for the discrepancy. 

See the July 17 report of the Kaiser 

Daily HIV/AIDS Report at www.kaisernetwork.org. 

It includes a round-up of 

newspaper reports on the fi ndings. ndings. 

Roche suspends 

HIV drug 

development 

Roche Pharmaceuticals, 

Pharma uticals, 

the manufacturer of the HIV drugs d ugsInviraseand 

Invirase and 

Fuzeon, announced that it will stop development 

work on new drugs against the vvirus. 

Th e company 

reported that its drugs in development develo do not have 

the promise of signifi cant improvement impr over cur- 

rent medications medications on the marke market. Roche has spent 

years working on a CCR5 antag antagonist and a reverse 

transcriptase inhibitor. Offi cials 

at Roche stated that 

they remain committed to external extern HIV drug devel- 

opment, as well well as internal and external e HCV (hepatitis 

atitis C virus) drug development developmen and reseach, and 

have a promising pipeline of 

HCV drugs. See a 

company statement to the th HIV community 

at www.positivelyaware.com. www.positive 

e 

Visit us on the web at www.positivelyaware.com to 

view additional online news briefs, and subscribe to our PA 

E-mail Update newsletter. While there don’t forget to check 

out our newly added community forums and blogs where 

you can interact with the growing Positively Aware online 

community! 



Photo © Russell McGonagle


Life Savers 

On the front lines at the FDA 

by Matt Sharp 

I 

was recently honored to retell the history of AIDS activism for 

a workshop at the Food and Drug Administration in Rockville, 

Maryland. I spoke on a patient representative panel about how 

AIDS activists “got in the door” at the FDA, eventually speeding up 

HIV drug approval and changing the way drugs become approved 

for all diseases. I was on that AIDS battlefront, and I am an FDA 

patient representative myself, having sat on the Antiviral and Blood 

Product advisory committees—which meet to discuss data on the 

latest developments, so my perspective was useful in telling the 

story of AIDS activism and the FDA. 

It was a most inspiring workshop that reinvigorated my desire, 

passion, and commitment for the work I’ve been doing for almost 20 

years. Patient advocates representing people living with Alzheimer’s, 

breast cancer, lymphoma, Parkinson’s, and many other diseases 

attended this 9th FDA Patient Representative Workshop. (Th e 

word “patient” signifi es passivity and is troublesome for me; more 

on that later.) Some of the reps were survivors, many living for 10 

or more years with their disease. Others were parents, brothers or 

sisters, husbands or wives of people either still alive or deceased. 

I was so moved by the compassion and energy of these advocates. 

Th ey were hungry for information about how activists became 

so successful in turning around the course of AIDS. Th ey wanted 

to know how they did it—how we got to the place we are today and 

what our strategies were. Th ey wanted to 

know how we dealt with an apathetic gov- 

ernment and how we mobilized our community. 

I was eager to share the information 

and to tell the compelling story of how 

far we had come in such a short time with 

such a complex disease in such an apathetic 

world. 

Th e advocates were diverse, but the 

majority were women. There were new 

advocates and more seasoned ones. Some 

had represented their communities on FDA advisory panels for 

new drugs, others were meeting each other for the fi rst time. Th e 

breast cancer survivors were the most outspoken and were very 

knowledgeable. Two members spoke about their own issues with 

clinical trial outcomes and surrogate markers, which brought up 

memories of similar debates we had in HIV with the use of changes 

in CD4 counts to show whether a drug worked or not. Th e interaction 

reminded me of ACT UP Golden Gate meetings in the ’90s in 

San Francisco where we reserved space for breast cancer activists 

on our weekly meeting agendas. We helped to mentor them, we 

helped plan and coordinate their demonstrations, and we helped 

educate them on the science. Th ere we were, a ramshackle group of 

biker-jacketed and Doc Martin boot-wearing gay men and lesbians 

mentoring housewives from the suburbs. A very bright torch was 



Get Sharp 

passed in those days to other passionate and desperate advocates 

who were simply fi ghting for their lives. It was beautiful seeing 

some of the fruits of our mentoring with the breast cancer advocates 

at this FDA meeting. 

All through the day I was approached with detailed questions 

about AIDS history—how we strategized and mobilized. A sickle 

cell anemia advocate asked me how to get a new group of sickle 

cell advocates to focus on the issues of their disease—a question I 

still hear in the HIV community. Th e patient representatives were 

anything but “patient,” but a real force, sponges soaking up the 

information, desperate to learn in order to embolden their fellow 

survivors. At the same time there was an overwhelming respect for 

each other, for human dignity and survival. Th ese were the new 

AIDS activists, survivors acting on their own behalf, for their own 

situations and their own lives. 

Suddenly I felt like more of a veteran than ever before with 

a whole new crop of advocates for other diseases. Th ere was an 

unspoken understanding among all of us regarding the battles we 

face and the challenges we have just to survive. It was a camaraderie 

that I haven’t seen before and the power in the room was clear. How 

can people who are not suff ering from life-threatening conditions 

hold so much power and control over those who are fi ghting for 

their lives? 

Suddenly I felt like more of a 

veteran than ever before with 

a whole new crop of advocates 

for other diseases. 

But all in all, the message was clear to me over the course of 

a few days. Th is gathering of a group of empowered “patients” was 

not about how eff ective empowered people could be to change the 

drug development process, but was more about the collective power 

of human bonding to end human suff ering. 

Vito Russo, a long-time AIDS activist and ACT UP member 

said in 1988, “Remember that one day the AIDS crisis will be over. 

And when that day has come and gone there will be people alive 

who will know that there was once a terrible disease, and that a 

brave group of people stood up and fought and in some cases died 

so that others might live and be free.” Substitute other conditions 

for AIDS in Vito’s quote and you can attribute the same sentiment 

to all patient advocates, who are trying to make a diff erence for the 

sake of their own lives and survival. e 

19

Ask the 

Is your provider an AAHIVMcredentialed 

HIV Specialist? 

If you are living with HIV, you have 

a lot of choices to make when 

seeking care and treatment. One 

of your most important choices is 

your health care practitioner—so 

why not choose someone who is 

knowledgeable about HIV and 

experienced in its treatment? 

The American Academy of HIV 

Medicine (AAHIVM)’s HIV 

Specialist credentialing program 

is the first and only clinical 

credentialing program offered 

domestically and internationally to 

physicians (MDs and DOs), nurse 

practioners, and physician assistants 

specializing in HIV care. HIV care 

providers become designated HIV 

Specialists after meeting experience 

and education requirements, and 

successfully completing a rigorous 

exam on HIV-specialized care. Look 

for the letters “AAHIVS” after their 

name. 

Locate an HIV Specialist 

Your search for an HIV Specialist 

is easy with AAHIVM’s online 

Find-A-Provider directory at www. 

aahivm.org. Just click on the 

“Find-A-Provider” window on the 

homepage, key in your location, and 

click on the search button for a list 

of HIV Specialists near you. 

Due to space limitations, not all 

submitted questions can be 

answered in this column, but every 

effort is made to ensure you receive 

the information you have requested. 

For more information about 

AAHIVM, call 202-659-0699 or 

visit www.aahivm.org. 

20 

This issue’s Specialist 

Kay Kalousek , DO , MS , 

AAHIVS , FACOFP 

DEAR HIV SPECIALIST: 

What does a person who is HIV-positive 

and taking HIV meds need to know about the 

risks of getting a vaccine for meningococcal 

disease? 

Signed, Vaccine Vexed 

DEAR VV: 

Although initially there was concern that 

HIV infection might make a person more 

susceptible to meningococcal disease, studies 

have not supported this theory. Therefore, 

current CDC and DHHS immunization 

guidelines recommend this vaccination for 

adolescents and adults with HIV infection 

only if they fall into the usual meningococcal 

disease risk categories (http://www.immunize. 

org/catg.d/p2011.pdf; http://aidsinfo.nih. 

gov/contentfiles/Adult_OI.pdf). There is no 

known interaction with HIV drugs. 

Meningococcal disease, including 

meningitis (infection in the tissues and 

fluid associated with the brain and spinal 

cord) and meningococcemia (infection in 

the blood) is caused by the bacteria Neisseria 

meningitidis. Although these organisms live 

in the throat and respiratory tract of up to 

one in three people, relatively few people 

in the U.S. actually develop meningococcal 

disease (about 1:100,000). 

There are two different types of vaccines 

for meningococcus: MPSV4 (meningococcal 

polysaccharide vaccine, Menomune) and 

MCV4 (meningococcal conjugate vaccine, 

MenactraT). 

Overall, meningococcal vaccine is well 

tolerated. Risks include mild reactions such 

as pain and redness at the injection site (which 

occur in up to 50% of those vaccinated) and 

transient fever (which occurs in up to 5%). 

Although severe allergic reactions are rare, 

they can be life-threatening. Therefore, the 

vaccine should not be given to anyone who 

has had a prior anaphylactic reaction to any 

vaccine component. 

People receiving MCV4 vaccine may 

have a slightly increased risk of developing 

Guillain-Barre syndrome (GBS), a serious 

neurologic disorder. However, it has been 

difficult to determine if an actual link exists, 

because the number of cases has been small 

and the rate of occurrence of GBS in those 

receiving the vaccination has been about 

the same as the natural rate. Currently, it is 

recommended that MCV4 be used cautiously 

in persons who have a prior history of GBS. 

The MPSV4 vaccine has not been associated 

with GBS. 

I recommend that you look at the links 

above and talk to your healthcare provider 

about whether the potential benefits of 

vaccination outweigh the risks and if this 

vaccine is right for you. e 

Kay Kalousek, DO, MS, AAHIVS, 

FACOFP 

Assistant Dean, Medical Education 

Western University of Health Sciences 

College of Osteopathic Medicine of the 

Pacific 

SUBMIT YOUR QUESTIONS FOR ASK THE HIV SPECIALIST TO AAHIVM@TPAN.COM 



Photo provided by Kay Kalousek, DO, MS, AAHIVS, FACOFP


Bob Bowers: 

The Pirate of Dane County 

Poster contest combines art with awareness areness 

to deliver a message of hope ope 



by Jeff Berry 

Bob b Bowers B talks lk about b HIV 

prevention 

and education the way that 

most people talk about their family 

or their pets, or even their favorite hobby— 

with a great deal of passion, mixed with just 

the right amount of sentiment. 

“I deplore the egos and infighting 

between organizations—it’s getting in the 

way of the war that we’re all fi ghting.” Th at’s 

one of the reasons he came up with the HIV 

awareness campaign, “What if it were you?” 

Th e campaign, sponsored by HIVictorious, 

a grassroots HIV/AIDS prevention and 

education organization in Madison, Wisconsin 

which he founded in 2005, includes 

a contest which challenges area high school 

students to answer the question, “What if it 

were you?” Th e students then incorporate 

the slogan and their response into posters 

they design themselves, in an eff ort to raise 

public—and student—awareness about 

HIV/AIDS. Bowers explains that it wasn’t 

about bringing resources to his organization, 

but rather about showing unity, collaboration, 

and fi ghting against HIV/AIDS. 

Bowers tested positive in 1985, and 

today looks the picture of perfect health. 

But he’s been at death’s door more than 

once, and estimates he has been living 

with HIV for more than 25 years. At age 45, 

he’s known by friends, on his website, and 

21

his MySpace page simply as “One Tough 

Pirate.” 

He got the name and idea from his 

friend Clark, now a retired Los Angeles 

policeman. At the time Bowers was living 

in Los Angeles, and he took medicinal 

marijuana to ease the nausea and vomiting 

caused by his HIV medications. He was 

worried that he would get pulled over and 

subsequently arrested because he rode a 

Harley with straight pipes, and portrayed 

a tough guy image—shaved head, tattoos 

and all (in truth, Bowers claims, he’s been 

in only two fi ghts in his entire life). 

When a friend introduced him to 

Clark, Bowers spilled his whole story, but 

his fi rst impression was, here was a guy who 

was his polar opposite—cop, straight-laced, 

clean cut. Clark told Bowers that when he 

fi rst saw him on his Harley, he thought he 

looked like a “friggin’ pirate who ate small 

children.” But Clark taught Bowers a valuable 

lesson about people’s perceptions. Th e 

reality, said Clark, is to just be as honest and 

nice as you are, and the cops aren’t going 

to mess with you. If a cop brings in a cardcarrying 

medicinal marijuana club member 

with AIDS, they’ll get in more trouble than 

you ever would, said Clark. 

“Th at’s where the quote of ‘compassion 

is our cure’ came from,” explains Bowers. “I 

22 

really thought that the campaign was a compassionate 

way to make people understand 

perception versus reality. It provided a very 

safe way to put it into our community. 

“So many of the messages are ‘just 

say no,’ or ‘put on a condom,’ or ‘sex kills.’ 

Instead, I prefer to let the kids send that 

message.” And out of that came the “What 

if it were you?” campaign. 

“I had never done a social marketing 

campaign before,” laughs Bowers. “I didn’t 

even know what that was. But I just felt that 

by asking, ‘What if?’—that no one could 

really argue with that. I’m not asking you 

Bob Bowers at the Wisconsin State Capitol. 

to agree or disagree with AIDS, or who it’s 

aff ecting, or why it’s aff ecting certain demographics, 

but—what if? What if you were in 

my shoes? How would you want people to 

react? I think it’s extremely profound and 

powerful.” 

Today he regularly goes on speaking 

engagements and delivers that same message, 

that “you can’t judge a book by its 

cover,” to anyone who will listen—businesses, 

schools, and even law enforcement 

groups. Bowers, who’s straight, believes it’s 

essential that kids, especially, understand 

that HIV does not discriminate, and can 

happen to anyone. And just as importantly, 

people shouldn’t be afraid to discuss it, and 

be able to do so in a manner that doesn’t 

incorporate fear or judgment. He does this 

by talking with them frankly about his own 

experience living with HIV, and fi nds he 

has an ability to connect with the kids on 

their own level. 

Bowers is quick to point out that he’s 

not artistic, in the sense of being able to 

create his own original artwork, and so he 

really had no clue where the contest would 

lead. “I just totally trusted and put my faith 

in these kids, and we’ve been blown away 

by some of the very powerful and heartfelt 

messages that they’ve created.” 

In addition to the poster contest, students 

fi ll out a brief pre- and post-questionnaire 

which poses the question, “If you 

found out a classmate had HIV, how would 

you react?” as well as other questions about 

transmission and prevention. 

Bowers is adamant about the need to 

address the social issues and the stigma 

surrounding HIV, in addition to emphasizing 

prevention and education. He says that 

racism and homophobia continue to play a 

large part in the rising infection rates in the 

community. 

“Th e demographics of this epidemic 

show that half of those infected are African 

American, and half are men who have sex 

with men (MSM). I can’t help but think that 

if it were aff ecting white, upper-class folks 

that we’d be faced with a diff erent outlook 

right now. We may not have the scientifi c 

cure, but money would be pouring in, left 

and right.” 

Th is fall will mark the third year of the 

contest. Unfortunately the program did not 

receive renewed funding from the Wisconsin 

AIDS Fund, which had funded them the 

previous year. Upon learning this, Joe Pabst, 

a member of the well-known Pabst family 

who has done a great amount of philanthropic 

work in the city and state, was able 

to secure funding through the Johnson and 

Pabst LGBT Humanity Fund of the Greater 

Milwaukee Foundation. 

Th is helped off set some of the initial 

costs and started the ball rolling again for 

the next round of the contest, but in the 

absence of any other funding Bowers has 

had to seek additional donations from individuals 

and organizations in order to cover 

the remaining costs. While Bowers says he 

doesn’t mind, it makes it diffi cult to reach a 

broader audience, and requires much more 

time to promote on his own. 

Bowers’ organization doesn’t accept 

any federal or state funding because of the 

strings attached—the limitations on what 




Photos on this page provided by Bob Bowers 

one actually can say or do when it comes 

to HIV prevention and education. HIVictorious 

has no administrative overhead, so 

all of the funding goes directly to cover the 

costs of things such as printing, ad placement 

(billboards and bus ads), and Product 

Red iPods, which are used as giveaways to 

some of the fi nalists. “It’s all peer-driven 

and grassroots—and I pride myself in keeping 

it that way,” says Bowers. 

Bowers reached out and enlisted the 

help of key local politicians, including 

Madison Mayor Dave Cieslewicz (better 

known as Mayor Dave) and U.S. Representative 

Tammy Baldwin, who were both 

eager to help. Mayor Dave and Congresswoman 

Baldwin were instrumental in helping 

to get the contest off the ground. Th ey 

also helped raise awareness throughout the 

campaign with not only their constituents 

but the media as well, and met with winners 

and their families aft erwards. 

Th e same school produced both the 

fi rst and second place winners of the most 

recent contest, of which there were about 

100 entries altogether from four area 

schools in Dane County. James Madison 

Memorial High School senior Collin Burke 

was awarded fi rst prize, and Kevin Julka 

was runner-up (view this year’s winning 

posters at www.positivelyaware.com). 

Th e morning that the winners were 

announced, Bowers opened the paper to 

read an article that a reporter had penned 

about the contest. It was only then that he 

learned that Collin’s uncle, who had been 

an outspoken HIV/AIDS advocate in Madison, 

had in fact died of AIDS before Collin 

was born. Bowers just sat there, in tears. He 

says he is continually humbled by the project 

and the support that has come from the 

entire community, including even the local 

police department. 

“It’s a testament to keeping it out there, 

and giving people the ability to share 

openly about their experiences,” says Bowers. 

“Th at’s why Collin’s family has been so 

involved and thrilled by this whole thing.” 

e 

For more information visit www.hivictorious.org, 

where you can donate online; or 

send a check or money order to HIVict orious, 

Inc., P.O. Box 3032, Madison, WI 53704. To 

view entries from past winners visit www. 

whatifitwereyou.org; also visit www.onetoughpirate.com. 



“It’s all peer-driven and grassroots— 

and I pride myself 

in keeping it that way.” 

photo top - l to r: Bowers, runner up Kevin Julka, Congresswoman Tammy 

Baldwin, fi rst place winner Collin Burke, and art teacher Teri Parris Ford. 

photo above: Collin Burke and Bob Bowers. 

23

Important Information 

INDICATION 

ATRIPLA (efavirenz 600 mg/emtricitabine 200 

mg/tenofovir disoproxil fumarate [DF] 300 mg) 

is a prescription medication used alone as a 

complete regimen or with other medicines to treat 

HIV-1 infection in adults. 

ATRIPLA does not cure HIV-1 and has not been 

shown to prevent passing HIV-1 to others. 

See your healthcare provider regularly. 

IMPORTANT SAFETY INFORMATION 

Contact your healthcare provider right away if 

you experience any of the following side effects 

or conditions associated with ATRIPLA: 

• Nausea, vomiting, unusual muscle pain, and/or 

weakness. These may be signs of a buildup of 

acid in the blood (lactic acidosis), which is a 

serious medical condition. 

• Light colored stools, dark colored urine, and/or if 

your skin or the whites of your eyes turn yellow. 

These may be signs of serious liver problems. 

• If you have HIV-1 and hepatitis B virus (HBV), 

your liver disease may suddenly get worse if you 

stop taking ATRIPLA. Do not stop taking ATRIPLA 

unless directed by your healthcare provider. 

Do not take ATRIPLA if you are taking the 

following medicines because serious and 

life-threatening side effects may occur when 

taken together: Vascor ® (bepridil), Propulsid ® 

(cisapride), Versed ® (midazolam), Orap ® (pimozide), 

Halcion ® (triazolam), or ergot medications (for 

example, Wigraine ® and Cafergot ® ). 

In addition, ATRIPLA should not be taken with: 

Combivir ® (lamivudine/zidovudine), EMTRIVA ® 

(emtricitabine), Epivir ® or Epivir-HBV ® (lamivudine), 

Epzicom ® (abacavir sulfate/lamivudine), SUSTIVA ® 

(efavirenz), Trizivir ® (abacavir sulfate/lamivudine/ 

zidovudine), TRUVADA ® (emtricitabine/tenofovir DF), 

or VIREAD ® (tenofovir DF), because they contain the 

same or similar active ingredients as ATRIPLA. 

Vfend ® (voriconazole) or REYATAZ ® (atazanavir 

sulfate), with or without Norvir ® (ritonavir), should 

not be taken with ATRIPLA since they may lose 

their effect and may also increase the chance of 

having side effects from ATRIPLA. Fortovase ® or 

Invirase ® (saquinavir) should not be used as the 

only protease inhibitor in combination with ATRIPLA. 

Taking ATRIPLA with St. John’s wort or products 

containing St. John’s wort is not recommended as it 

may cause decreased levels of ATRIPLA, increased 

viral load, and possible resistance to ATRIPLA or 

cross-resistance to other anti-HIV drugs. 

This list of medicines is not complete. Discuss 

with your healthcare provider all prescription 

and nonprescription medicines, vitamins, or 

herbal supplements you are taking or plan to take. 

Contact your healthcare provider right away if 

you experience any of the following side effects 

or conditions: 

Please see Patient Information on the following page. 

• Severe depression, strange thoughts, or angry 

behavior have been reported by a small number 

of patients. Some patients have had thoughts of 

suicide and a few have actually committed suicide. 

These problems may occur more often in patients 

who have had mental illness. 

• Dizziness, trouble sleeping or concentrating, 

drowsiness, unusual dreams, and/or 

hallucinations are common, and tend to go away 

after taking ATRIPLA (efavirenz 600 mg/ 

emtricitabine 200 mg/tenofovir DF 300 mg) for 

a few weeks. Symptoms were severe in a few 

patients and some patients discontinued 

therapy. These symptoms may become more 

severe with the use of alcohol and/or moodaltering 

(street) drugs. If you are dizzy, have 

trouble concentrating, and/or are drowsy, avoid 

activities that may be dangerous, such as driving 

or operating machinery. 

• Kidney or liver problems. If you have had kidney 

or liver problems, including hepatitis infection or 

take other medicines that may cause kidney or 

liver problems, your healthcare provider should do 

regular blood tests. 

• Pregnancy: Women should not become 

pregnant while taking ATRIPLA and for 

12 weeks after stopping ATRIPLA. Serious 

birth defects have been seen in children of 

women treated during pregnancy with one of the 

medicines in ATRIPLA. Therefore, women must 

use a reliable form of barrier contraception, such 

as a condom or diaphragm, even if they also use 

other methods of birth control. 

• Breast-Feeding: Women with HIV-1 should not 

breast-feed because they can pass HIV-1 through their 

milk to the baby. Also, ATRIPLA may pass through 

breast milk and cause serious harm to the baby. 

• Rash is a common side effect that usually goes 

away without treatment, but may be serious in 

a small number of patients. 

• Seizures have occurred in patients taking a 

component of ATRIPLA, usually in those with a 

history of seizures. If you have ever had seizures, 

or take medicine for seizures, your healthcare 

provider may want to switch you to another 

medicine or monitor you. 

• Bone changes. If you have had bone problems in 

the past, your healthcare provider may want to 

check your bones. 

• If you have ever had mental illness or use illegal 

drugs or alcohol. 

Changes in body fat have been seen in some people 

taking anti-HIV-1 medicines. The cause and long-term 

health effects are not known. 

Other common side effects of ATRIPLA include 

tiredness, headache, upset stomach, vomiting, 

gas, and diarrhea. Skin discoloration (small spots 

or freckles) may also happen. 

You should take ATRIPLA once daily on an empty 

stomach. Taking ATRIPLA at bedtime may make 

some side effects less bothersome. 

ATRIPLA is one of several treatment options your 

doctor may consider. 

You are encouraged to report negative side 

effects of prescription drugs to the FDA. 

Visit www.fda.gov/medwatch 

or call 1-800-FDA-1088. 

© 2008 Bristol-Myers Squibb & Gilead Sciences, LLC. All 

rights reserved. ATRIPLA is a trademark of Bristol-Myers 

Squibb & Gilead Sciences, LLC. EMTRIVA, VIREAD, and 

TRUVADA are trademarks of Gilead Sciences, Inc. SUSTIVA 

is a registered trademark of Bristol-Myers Squibb 

Pharma Company. REYATAZ is a registered trademark of 

Bristol-Myers Squibb Company. All other trademarks are 

owned by third parties. 697US08AB01407/TROO93 06/08

ATRIPLA. The #1 prescribed complete HIV regimen. * 

It may be taken alone or with other HIV medicines. 

• Effective HIV Treatment Through 3 years of clinical studies, proven to 

lower viral load to undetectable † and help raise T-cell (CD4+) count to help control HIV 

• One Pill, Once a Day Take ATRIPLA once a day on an empty stomach 

and preferably at bedtime, which may make some side effects less bothersome 

Ask your doctor if ATRIPLA is right for you. 

Please see Important Safety Information, including information 

on lactic acidosis, serious liver problems, and flare-ups of 

hepatitis B (HBV) on adjacent page. 

* Synovate Healthcare Data; US HIV Monitor, Q1 2008. 

ATRIPLA helps me stay on top of 

my HIV with one pill daily. 

† Defined as a viral load of less than 400 copies/mL. 

Individual results may vary. 

visit www.ATRIPLA.com

FDA-Approved Patient Labeling 

Patient Information 

ATRIPLA ® (uh TRIP luh) Tablets 

ALERT: Find out about medicines that should NOT be taken with ATRIPLA. 

Please also read the section “MEDICINES YOU SHOULD NOT TAKE WITH ATRIPLA.” 

Generic name: efavirenz, emtricitabine and tenofovir disoproxil fumarate (eh FAH vih renz, 

em tri SIT uh bean and te NOE’ fo veer dye soe PROX il FYOU mar ate) 

Read the Patient Information that comes with ATRIPLA (efavirenz/emtricitabine/ 

tenofovir disoproxil fumarate) before you start taking it and each time you get a refill since 

there may be new information. This information does not take the place of talking to your 

healthcare provider about your medical condition or treatment. You should stay under a 

healthcare provider’s care when taking ATRIPLA. Do not change or stop your medicine 

without first talking with your healthcare provider. Talk to your healthcare provider or 

pharmacist if you have any questions about ATRIPLA. 

What is the most important information I should know about ATRIPLA? 

• Some people who have taken medicine like ATRIPLA (which contains 

nucleoside analogs) have developed a serious condition called lactic acidosis 

(build up of an acid in the blood). Lactic acidosis can be a medical emergency and may 

need to be treated in the hospital. Call your healthcare provider right away if you 

get the following signs or symptoms of lactic acidosis: 

• You feel very weak or tired. 

• You have unusual (not normal) muscle pain. 

• You have trouble breathing. 

• You have stomach pain with nausea and vomiting. 

• You feel cold, especially in your arms and legs. 

• You feel dizzy or lightheaded. 

• You have a fast or irregular heartbeat. 

• Some people who have taken medicines like ATRIPLA have developed serious 

liver problems called hepatotoxicity, with liver enlargement (hepatomegaly) and 

fat in the liver (steatosis). Call your healthcare provider right away if you get the 

following signs or symptoms of liver problems: 

• Your skin or the white part of your eyes turns yellow (jaundice). 

• Your urine turns dark. 

• Your bowel movements (stools) turn light in color. 

• You don’t feel like eating food for several days or longer. 

• You feel sick to your stomach (nausea). 

• You have lower stomach area (abdominal) pain. 

• You may be more likely to get lactic acidosis or liver problems if you are female, 

very overweight (obese), or have been taking nucleoside analog-containing 

medicines, like ATRIPLA, for a long time. 

• If you also have hepatitis B virus (HBV) infection and you stop taking ATRIPLA, 

you may get a “flare-up” of your hepatitis. A “flare-up” is when the disease 

suddenly returns in a worse way than before. Patients with HBV who stop taking 

ATRIPLA need close medical follow-up for several months, including medical exams 

and blood tests to check for hepatitis that could be getting worse. ATRIPLA is not 

approved for the treatment of HBV, so you must discuss your HBV therapy with your 

healthcare provider. 

What is ATRIPLA? 

ATRIPLA contains 3 medicines, SUSTIVA ® (efavirenz), EMTRIVA ® (emtricitabine) and 

VIREAD ® (tenofovir disoproxil fumarate also called tenofovir DF) combined in one pill. 

EMTRIVA and VIREAD are HIV-1 (human immunodeficiency virus) nucleoside analog reverse 

transcriptase inhibitors (NRTIs) and SUSTIVA is an HIV-1 non-nucleoside analog reverse 

transcriptase inhibitor (NNRTI). VIREAD and EMTRIVA are the components of TRUVADA ® . 

ATRIPLA can be used alone as a complete regimen, or in combination with other anti-HIV-1 

medicines to treat people with HIV-1 infection. ATRIPLA is for adults age 18 and over. 

ATRIPLA has not been studied in children under age 18 or adults over age 65. 

HIV infection destroys CD4 + T cells, which are important to the immune system. The immune 

system helps fight infection. After a large number of T cells are destroyed, acquired immune 

deficiency syndrome (AIDS) develops. 

ATRIPLA helps block HIV-1 reverse transcriptase, a viral chemical in your body (enzyme) that 

is needed for HIV-1 to multiply. ATRIPLA lowers the amount of HIV-1 in the blood (viral load). 

ATRIPLA may also help to increase the number of T cells (CD4 + cells), allowing your immune 

system to improve. Lowering the amount of HIV-1 in the blood lowers the chance of death 

or infections that happen when your immune system is weak (opportunistic infections). 

Does ATRIPLA cure HIV-1 or AIDS? 

ATRIPLA does not cure HIV-1 infection or AIDS. The long-term effects of ATRIPLA are not 

known at this time. People taking ATRIPLA may still get opportunistic infections or other 

conditions that happen with HIV-1 infection. Opportunistic infections are infections that 

develop because the immune system is weak. Some of these conditions are pneumonia, 

herpes virus infections, and Mycobacterium avium complex (MAC) infection. It is very 

important that you see your healthcare provider regularly while taking ATRIPLA. 

Does ATRIPLA (efavirenz/emtricitabine/tenofovir disoproxil fumarate) reduce the risk 

of passing HIV-1 to others? 

ATRIPLA has not been shown to lower your chance of passing HIV-1 to other people 

through sexual contact, sharing needles, or being exposed to your blood. 

• Do not share needles or other injection equipment. 

• Do not share personal items that can have blood or body fluids on them, like 

toothbrushes or razor blades. 

• Do not have any kind of sex without protection. Always practice safer sex by using 

a latex or polyurethane condom or other barrier to reduce the chance of sexual contact 

with semen, vaginal secretions, or blood. 

Who should not take ATRIPLA? 

Together with your healthcare provider, you need to decide whether ATRIPLA is right for you. 

Do not take ATRIPLA if you are allergic to ATRIPLA or any of its ingredients. The active 

ingredients of ATRIPLA are efavirenz, emtricitabine, and tenofovir DF. See the end of this 

leaflet for a complete list of ingredients. 

What should I tell my healthcare provider before taking ATRIPLA? 

Tell your healthcare provider if you: 

• Are pregnant or planning to become pregnant (see “What should I avoid while 

taking ATRIPLA?”). 

• Are breast-feeding (see “What should I avoid while taking ATRIPLA?”). 

• Have kidney problems or are undergoing kidney dialysis treatment. 

• Have bone problems. 

• Have liver problems, including Hepatitis B Virus infection. Your healthcare 

provider may want to do tests to check your liver while you take ATRIPLA. 

• Have ever had mental illness or are using drugs or alcohol. 

• Have ever had seizures or are taking medicine for seizures. 

What important information should I know about taking other medicines with ATRIPLA? 

ATRIPLA may change the effect of other medicines, including the ones for HIV-1, and 

may cause serious side effects. Your healthcare provider may change your other 

medicines or change their doses. Other medicines, including herbal products, may affect 

ATRIPLA. For this reason, it is very important to let all your healthcare providers and 

pharmacists know what medications, herbal supplements, or vitamins you are taking. 

MEDICINES YOU SHOULD NOT TAKE WITH ATRIPLA 

• The following medicines may cause serious and life-threatening side effects when 

taken with ATRIPLA. You should not take any of these medicines while taking ATRIPLA: 

Vascor (bepridil), Propulsid (cisapride), Versed (midazolam), Orap (pimozide), 

Halcion (triazolam), ergot medications (for example, Wigraine and Cafergot). 

• ATRIPLA also should not be used with Combivir (lamivudine/zidovudine), EMTRIVA, 

Epivir, Epivir-HBV (lamivudine), Epzicom (abacavir sulfate/lamivudine),Trizivir (abacavir 

sulfate/lamivudine/zidovudine), SUSTIVA, TRUVADA, or VIREAD. 

• Vfend (voriconazole) should not be taken with ATRIPLA since it may lose its effect or 

may increase the chance of having side effects from ATRIPLA. 

• Do not take St. John’s wort (Hypericum perforatum), or products containing 

St. John’s wort with ATRIPLA. St. John’s wort is an herbal product sold as a 

dietary supplement. Talk with your healthcare provider if you are taking or are 

planning to take St. John’s wort. Taking St. John’s wort may decrease ATRIPLA 

levels and lead to increased viral load and possible resistance to ATRIPLA or crossresistance 

to other anti-HIV-1 drugs. 

It is also important to tell your healthcare provider if you are taking any of the following: 

• Fortovase, Invirase (saquinavir), Biaxin (clarithromycin); or Sporanox (itraconazole); 

these medicines may need to be replaced with another medicine when taken 

with ATRIPLA. 

• Calcium channel blockers such as Cardizem or Tiazac (diltiazem), Covera HS or 

Isoptin (verapamil) and others; Crixivan (indinavir); Methadone; Mycobutin (rifabutin); 

Rifampin; cholesterol-lowering medicines such as Lipitor (atorvastatin), 

Pravachol (pravastatin sodium), and Zocor (simvastatin); or Zoloft (sertraline); these 

medicines may need to have their dose changed when taken with ATRIPLA. 

• Videx, Videx EC (didanosine); tenofovir DF (a component of ATRIPLA) may increase the 

amount of didanosine in your blood, which could result in more side effects. You may 

need to be monitored more carefully if you are taking ATRIPLA (efavirenz/ 

emtricitabine/tenofovir disoproxil fumarate) and didanosine together. Also, the dose 

of didanosine may need to be changed. 

• Reyataz (atazanavir sulfate) or Kaletra (lopinavir/ritonavir); these medicines may 

increase the amount of tenofovir DF (a component of ATRIPLA) in your blood, which 

could result in more side effects. Reyataz is not recommended with ATRIPLA. You may 

need to be monitored more carefully if you are taking ATRIPLA and Kaletra together. 

Also, the dose of Kaletra may need to be changed. 

• Medicine for seizures [for example, Dilantin (phenytoin), Tegretol (carbamazepine), or 

phenobarbital]; your healthcare provider may want to switch you to another medicine 

or check drug levels in your blood from time to time.

These are not all the medicines that may cause problems if you take 

ATRIPLA (efavirenz/emtricitabine/tenofovir disoproxil fumarate). Be sure to tell your 

healthcare provider about all medicines that you take. 

Keep a complete list of all the prescription and nonprescription medicines as well as any 

herbal remedies that you are taking, how much you take, and how often you take them. 

Make a new list when medicines or herbal remedies are added or stopped, or if the dose 

changes. Give copies of this list to all of your healthcare providers and pharmacists every 

time you visit your healthcare provider or fill a prescription. This will give your healthcare 

provider a complete picture of the medicines you use. Then he or she can decide the best 

approach for your situation. 

How should I take ATRIPLA? 

• Take the exact amount of ATRIPLA your healthcare provider prescribes. Never change 

the dose on your own. Do not stop this medicine unless your healthcare provider tells 

you to stop. 

• You should take ATRIPLA on an empty stomach. 

• Swallow ATRIPLA with water. 

• Taking ATRIPLA at bedtime may make some side effects less bothersome. 

• Do not miss a dose of ATRIPLA. If you forget to take ATRIPLA, take the missed dose 

right away, unless it is almost time for your next dose. Do not double the next dose. 

Carry on with your regular dosing schedule. If you need help in planning the best times 

to take your medicine, ask your healthcare provider or pharmacist. 

• If you believe you took more than the prescribed amount of ATRIPLA, contact your local 

poison control center or emergency room right away. 

• Tell your healthcare provider if you start any new medicine or change how you take 

old ones. Your doses may need adjustment. 

• When your ATRIPLA supply starts to run low, get more from your healthcare provider 

or pharmacy. This is very important because the amount of virus in your blood may 

increase if the medicine is stopped for even a short time. The virus may develop 

resistance to ATRIPLA and become harder to treat. 

• Your healthcare provider may want to do blood tests to check for certain side effects 

while you take ATRIPLA. 

What should I avoid while taking ATRIPLA? 

• Women taking ATRIPLA should not become pregnant. Serious birth defects have 

been seen in the babies of animals and women treated with efavirenz (a component 

of ATRIPLA) during pregnancy. It is not known whether efavirenz caused these defects. 

Tell your healthcare provider right away if you are pregnant. Also talk with your 

healthcare provider if you want to become pregnant. 

• Women should not rely only on hormone-based birth control, such as pills, injections, 

or implants, because ATRIPLA may make these contraceptives ineffective. Women 

must use a reliable form of barrier contraception, such as a condom or diaphragm, 

even if they also use other methods of birth control. 

• Do not breast-feed if you are taking ATRIPLA. The Centers for Disease Control and 

Prevention recommend that mothers with HIV not breast-feed because they can pass 

the HIV through their milk to the baby.Also,ATRIPLA may pass through breast milk and 

cause serious harm to the baby. Talk with your healthcare provider if you are breastfeeding. 

You should stop breast-feeding or may need to use a different medicine. 

• Taking ATRIPLA with alcohol or other medicines causing similar side effects as 

ATRIPLA, such as drowsiness, may increase those side effects. 

• Do not take any other medicines, including prescription and nonprescription 

medicines and herbal products, without checking with your healthcare provider. 

• Avoid doing things that can spread HIV-1 infection since ATRIPLA does not stop 

you from passing the HIV-1 infection to others. 

What are the possible side effects of ATRIPLA? 

ATRIPLA may cause the following serious side effects: 

• Lactic acidosis (buildup of an acid in the blood). Lactic acidosis can be a medical 

emergency and may need to be treated in the hospital. Call your healthcare provider 

right away if you get signs of lactic acidosis. (See “What is the most important 

information I should know about ATRIPLA?”) 

• Serious liver problems (hepatotoxicity), with liver enlargement (hepatomegaly) and 

fat in the liver (steatosis). Call your healthcare provider right away if you get any signs 

of liver problems. (See “What is the most important information I should know about 

ATRIPLA?”) 

• “Flare-ups” of Hepatitis B Virus (HBV) infection, in which the disease suddenly 

returns in a worse way than before, can occur if you have HBV and you stop taking 

ATRIPLA. Your healthcare provider will monitor your condition for several months after 

stopping ATRIPLA if you have both HIV-1 and HBV infection and may recommend 

treatment for your HBV. 

• Serious psychiatric problems. A small number of patients may experience severe 

depression, strange thoughts, or angry behavior while taking ATRIPLA. Some patients 

have thoughts of suicide and a few have actually committed suicide. These problems 

may occur more often in patients who have had mental illness. Contact your healthcare 

provider right away if you think you are having these psychiatric symptoms, so your 

healthcare provider can decide if you should continue to take ATRIPLA. 

• Kidney problems. If you have had kidney problems in the past or take other 

medicines that can cause kidney problems, your healthcare provider should do regular 

blood tests to check your kidneys. 

• Changes in bone mineral density (thinning bones). It is not known whether longterm 

use of ATRIPLA (efavirenz/emtricitabine/tenofovir disoproxil fumarate) will cause 

damage to your bones. If you have had bone problems in the past, your healthcare 

provider may need to do tests to check your bone mineral density or may prescribe 

medicines to help your bone mineral density. 

Common side effects: 

Patients may have dizziness, headache, trouble sleeping, drowsiness, trouble concentrating, 

and/or unusual dreams during treatment with ATRIPLA. These side effects may be reduced if 

you take ATRIPLA at bedtime on an empty stomach. They also tend to go away after you have 

taken the medicine for a few weeks. If you have these common side effects, such as 

dizziness, it does not mean that you will also have serious psychiatric problems, such as 

severe depression, strange thoughts, or angry behavior. Tell your healthcare provider right 

away if any of these side effects continue or if they bother you. It is possible that these 

symptoms may be more severe if ATRIPLA is used with alcohol or mood altering (street) drugs. 

If you are dizzy, have trouble concentrating, or are drowsy, avoid activities that may be 

dangerous, such as driving or operating machinery. 

Rash may be common. Rashes usually go away without any change in treatment. In a small 

number of patients, rash may be serious. If you develop a rash, call your healthcare provider 

right away. 

Other common side effects include tiredness, upset stomach, vomiting, gas, and diarrhea. 

Other possible side effects with ATRIPLA include: 

• Changes in body fat. Changes in body fat develop in some patients taking anti-HIV-1 

medicine. These changes may include an increased amount of fat in the upper back 

and neck (“buffalo hump”), in the breasts, and around the trunk. Loss of fat from the 

legs, arms, and face may also happen. The cause and long-term health effects of 

these fat changes are not known. 

• Skin discoloration (small spots or freckles) may also happen with ATRIPLA. 

Tell your healthcare provider or pharmacist if you notice any side effects while taking ATRIPLA. 

Contact your healthcare provider before stopping ATRIPLA because of side effects or for any 

other reason. 

This is not a complete list of side effects possible with ATRIPLA. Ask your healthcare provider 

or pharmacist for a more complete list of side effects of ATRIPLA and all the medicines you 

will take. 

How do I store ATRIPLA? 

• Keep ATRIPLA and all other medicines out of reach of children. 

• Store ATRIPLA at room temperature 77 °F (25 °C). 

• Keep ATRIPLA in its original container and keep the container tightly closed. 

• Do not keep medicine that is out of date or that you no longer need. If you throw any 

medicines away make sure that children will not find them. 

General information about ATRIPLA: 

Medicines are sometimes prescribed for conditions that are not mentioned in patient 

information leaflets. Do not use ATRIPLA for a condition for which it was not prescribed. Do 

not give ATRIPLA to other people, even if they have the same symptoms you have. It may 

harm them. 

This leaflet summarizes the most important information about ATRIPLA. If you would like 

more information, talk with your healthcare provider. You can ask your healthcare provider 

or pharmacist for information about ATRIPLA that is written for health professionals. 

Do not use ATRIPLA if the seal over bottle opening is broken or missing. 

What are the ingredients of ATRIPLA? 

Active Ingredients: efavirenz, emtricitabine, and tenofovir disoproxil fumarate 

Inactive Ingredients: croscarmellose sodium, hydroxypropyl cellulose, microcrystalline 

cellulose, magnesium stearate, sodium lauryl sulfate. The film coating contains black iron 

oxide, polyethylene glycol, polyvinyl alcohol, red iron oxide, talc, and titanium dioxide. 

ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. EMTRIVA,TRUVADA, 

and VIREAD are trademarks of Gilead Sciences, Inc. SUSTIVA is a trademark of Bristol-Myers 

Squibb Pharma Company. Reyataz and Videx are trademarks of Bristol-Myers Squibb 

Company. Pravachol is a trademark of ER Squibb & Sons, LLC. Other brands listed are the 

trademarks of their respective owners. 

SF-B0001B-06-08 21-937-GS-004 ST0023 June 2008

Every Tuesday night for three years I drove to Beverly Hills, 

sat in a room, and listened to fi ve other middle-aged men 

discuss their lives. I didn’t expect group therapy to last for 

years. With every passing season, we all got a little older: a few more 

grey hairs, a pound or two around the middle, another wrinkle. 

Naturally, we all showed our age—all of us but Steve. 

Steve had been HIV-positive for about 18 years, but it certainly 

didn’t show. He was lean but not skinny. He wore snug-fi tting shirts 

that revealed a naturally fi t frame. His cheeks were full, lacking the 

28 

The Next 

Generation of 

Human Growth 

Hormone 

How serostim 

and tesamorelin 

measure up 

by Brett Grodeck 

telltale divots that years of HIV medicine can etch into our faces. 

In fact, it was the healthy quality of his skin that led me to assume 

he was in his early 40s. 

I was shocked when Steve offh andedly revealed he was 51. 

Whatever Steve was doing, I thought, I would do the same. One 

day aft er group, I cornered Steve in the street and barraged him 

with questions. Yes, he went to the gym occasionally. Of course, 

he watched calories. But when I pushed him for more details, he 

fi nally confi ded that his doctor had prescribed him human growth 


Positively Aware

hormone, that he had been injecting himself with a low dose for 

about seven years, and that growth hormone was why he looked 

lean and youthful. 

Bingo, I thought, that’s what I want. I’m a 42-year-old Polish 

guy who’s put on a belly through beer and bad habits. I know what 

this particular body shape should look like. But when I looked in 

the mirror I saw something diff erent. I saw a huge barrel belly, an 

oddly fat neck and jowls. Protruding from this mass was skinny, 

scrawny arms and legs. I felt like an apple on toothpicks. 

I’ve been HIV-positive for more than 20 years. I’ve spent 15 of 

those years on HIV meds. Don’t get me wrong, I’m thrilled to be 

alive. I’m grateful for the meds, but they left their mark on my body. 

Th e physical changes from the meds were undeniable. I wasn’t just 

getting older and soft er. Th e shape of my body had changed dramatically 

and not in a good way. Aft er speaking with Steve, I decided 

to do something about it. 

I did what the pharmaceutical commercials tell me: I asked my 

doctor if growth hormone was right for me. Oddly, he got a little 

nervous. You don’t really have AIDS wasting, he mumbled, adding 

that there are a lot of side eff ects. Instead, 

he suggested a surgical procedure where 

my stomach is permanently clamped off by 

a band that’s implanted in the body. Th is 

option seemed extreme. 

Coincidentally, I heard about an experimental 

drug called tesamorelin, which 

supercharged your body to kick up its own 

natural levels of growth hormone. Soon, I 

joined a clinical trial of tesamorelin to treat 

HIV-associated belly fat. Just recently, I 

completed the year-long trial. Now, I have 

the unique opportunity to assess how human growth hormone has 

changed my life. 

A hangover from the AIDS cocktail 

It was around 1996 when the success of the “AIDS cocktail” 

made headlines. It was a breakthrough. For the fi rst time, HIV 

medicine was good enough to essentially snuff out the virus and 

start to save lives. It was a welcomed change of course for a beleaguered 

patient community. So it almost seemed inconsequential in 

the very beginning when anecdotes of strange body-shape changes 

fi rst began to emerge as a side eff ect of the medicine. 

Th e AIDS cocktail got its name because it combined three different 

classes of HIV drugs. 

One class is the protease inhibitors, of which indinavir is a 

member. Indinavir is the generic name of the drug and Crixivan is 

the brand name. Another class is the nucleoside analogs, of which 

zidovudine and stavudine are members. Stavudine’s brand name is 

Zerit. Zidovudine’s brand name is Retrovir, but it’s better known 

as AZT. It’s also one ingredient in various combination pills by the 

names Combivir, Epzicom, and Trizivir. 

As body-shape side eff ects emerged among patients taking the 

cocktail, the changes sometimes got informally named as AZT butt 

or Crix belly. It seemed that the nucleoside analogs were associated 



with fat loss in the buttocks, legs, arms, and cheeks. On the other 

hand, the protease inhibitors were associated with fat gain in the 

stomach, jowls, and neck. Another distressing condition was a disfi 

guring accumulation of fat at the base of the neck called “buff alo 

hump.” 

Over time, the anecdotes could not be ignored. As researchers 

examined the issue more closely, they also found unusually high 

levels of cholesterol and triglycerides in the blood of patients taking 

protease inhibitors. Th e range of conditions baffl ed doctors, but one 

thing was clear: the common denominator was fat. 

“Fat loss is clearly associated with stavudine and to a lesser 

extent, zidovudine,” said Valerianna Amorosa, M.D. She is chief of 

Infectious Diseases at the Philadelphia Veterans Hospital in Pennsylvania. 

Her clinical practice and research focuses on conditions 

related to HIV, hepatitis C, and obesity. As for the cause of buff alo 

hump, she said the jury is still out. “We thought it was the protease 

inhibitors, but I don’t think it’s that simple any more.” 

Th ese days, the trend is to distinguish between weight gain 

and weight loss as separate and distinct conditions. Weight loss in 

When Steve turned the corner 

and I saw him, once again I was 

struck by his lean and youthful 

appearance. 

the butt, legs, arms, and cheeks is called lipoatrophy. Weight gain 

around the belly is called excess visceral adipose tissue, which is 

abbreviated as VAT. I prefer to use the lowercase vat because it’s 

similar to fat, but still diff erent. Too much vat gives your body an 

apple shape, with fat growing between internal organs. Gardenvariety 

fat tends to distribute itself more evenly and stays just below 

the skin where it’s less harmful. 

Sometimes, it’s hard to tell the diff erence between fat and vat, 

notes Amorosa. Th e commonly used body mass index, also called 

BMI, is not a great indicator of the risks associated with being overweight. 

Vat is linked to high blood pressure, diabetes, high cholesterol, 

and high triglycerides. Th e diff erence between vat and fat is 

where the fat lives on the person. “In somebody who has a BMI of 

26, but who doesn’t have a big belly, who has a relatively fl at belly, 

and has some weight in the trunk or in the bottom, I don’t worry 

as much about them.” 

High levels of cholesterol and triglycerides or glucose problems 

are collectively referred to as metabolic syndrome. A surprising 

study in 2007 found the prevalence of metabolic syndrome among 

people with HIV is not any higher than that of the general population. 

Metabolic syndrome, it seems, has less to do with HIV medicine 

and more to do with beer and bad habits. 

29

For me, feeling like an apple on toothpicks had two causes. 

First, I had taken AZT and Zerit in the past, which probably led to 

fat loss in the legs, butt, and little in the cheeks. On the other hand, I 

also had taken Crixivan, which probably led to some fat gain in the 

belly. Before the HIV meds, when I gained weight, I got fat all over. 

Now when I gain weight, it has nowhere to go but my belly. 

The notorious history of Serostim 

Steve had been out of the country so I hadn’t seen him in a year. 

I was to meet him for coff ee and I wondered if he still looked as 

young as I remembered. Aft er all, he continued to take the human 

growth hormone called somatropin. Its brand name is Serostim. 

When Steve turned the corner and I saw him, once again I was 

struck by his lean and youthful appearance. 

Steve was prescribed Serostim in 2001 aft er he started on the 

AIDS cocktail, which caused him debilitating fatigue. With the 

cocktail, his viral load and T-cells rebounded, but he could barely 

work. His doctor attempted to treat Steve in diff erent ways, all of 

which failed to alleviate the fatigue. Th en Steve started injecting 

“Looking great” is not something 

the FDA considers when 

reviewing the evidence of a 

drug’s safety and effectiveness. 

Serostim. 

Steve noticed changes within weeks. His energy came back. 

He felt better. Eventually, he started working out with a personal 

trainer. For fatigue, it worked. Th en Steve noticed the side eff ects. 

“My skin felt less tough, like I was wearing a super moisturizer. My 

hair stopped falling out,” he said. “I lost my gut and it stayed off .” 

Th ese eff ects should be no surprise. Th ey were fi rst described in 

1990 when the New England Journal of Medicine published research 

titled “Eff ects of human growth hormone in men over 60 years 

old” by Daniel Rudman, M.D. One conclusion was that “diminished 

secretion of growth hormone is responsible, in part, for the 

decrease of lean body mass, the expansion of adipose-tissue mass, 

and the thinning of the skin that occur in old age.” 

Th e article sparked an explosion of “anti-aging” clinics and 

dietary supplements that extolled the age-defying benefi ts of growth 

hormone. Growth hormone is a substance that’s easily destroyed by 

stomach acid. Th is means that supplements taken by mouth don’t 

work. But this hasn’t stopped the dietary supplement industry from 

advertising pseudo “growth hormone” pills. 

Th e legitimate pharmaceutical industry also fl ourished. Subsequent 

studies confi rmed that growth hormone causes muscles to 

grow. Th is ability to grow muscle was the primary reason why in 

30 

1996 the Food and Drug Administration (FDA) gave pharmaceutical 

middle-weight Serono approval to sell Serostim as a treatment 

for AIDS wasting. 

Technically, AIDS wasting is the involuntary loss of more than 

10% of body weight, plus more than 30 days of either diarrhea, or 

weakness and fever. Serostim clearly helps people with wasting. 

When taken for 12 weeks, people gained lean body mass, improved 

physical endurance, and reported they felt better in terms of weight 

and appearance. Unfortunately for Serono, the success of the AIDS 

cocktail also meant less people got diagnosed with AIDS wasting. 

Back in the 1990s, the FDA took a more laissez-faire approach 

to pharmaceutical marketing practices. With a shrinking market 

for Serostim, Serono pushed the legal envelope by awarding doctors 

all-expenses-paid vacations when they prescribed lots of Serostim. 

Th e company also developed a quack test so doctors could easily 

prescribe the drug. 

Aft er several federal investigations on behalf of Medicaid, the 

U.S. government fi nally sued Serono in 2005 for more than $700 

million to recoup Medicaid losses and punish the company for illegally 

marketing Serostim. Th e case became 

the third largest settlement by the federal 

government in a health care fraud case. 

Allegations of fraud extended to phar- 

macies and AIDS patients as well. Reports 

surfaced of pharmacies billing an insurance 

company or Medicaid for Serostim that 

patients didn’t actually use. Th ose patients 

then sold the drug back to the dispensing 

pharmacy in exchange for cash. 

Patients also sold their Serostim to a 

booming black market, where bodybuilders 

paid top dollar. Th ere’s a market for 

Serostim because it isn’t detectable by blood tests. In fact, the market 

was so profi table that counterfeiters even started selling fake 

Serostim, some which landed in the needles of legitimate patients. 

“Serostim was approved for HIV wasting,” said Robin Mathias, 

an expert on health care fraud. She operates something of a detective 

agency for large healthcare clients. She notes that it’s illegal 

for Serono to sell “the idea” that Serostim should be prescribed off 

label. “Of course, a physician can choose to prescribe a drug for an 

off -label use. But representatives from the pharmaceutical company 

should not go around telling doctors, ‘Th is is really good for body 

building.’ ” 

One kit of Serostim—that’s the legitimate version with the 

special hologram on the box—contains seven vials called blue tops. 

Each blue top contains 6.0 milligrams of somatropin, which translate 

to 18 international units (IU). Th e black market pays about $7 

per IU. Th e black market asking price for one kit of Serostim is 

around $500. 

To treat AIDS wasting, the offi cial dose of Serostim is 6.0 mg 

given daily for 12 weeks. To treat excess vat, Serono researchers 

used 4.0 mg daily for 12 weeks. Th is dose was tough on patients, 

many of whom were forced to reduce their dose or stop the drug 


Positively Aware

entirely due to swelling of hands and feet, joint pain, carpal tunnel 

syndrome, glucose problems, and diabetes. 

Steve, on the other hand, hasn’t had any problems with 

Serostim for more than seven years. However, he injects only 6.0 

mg twice a week. For Steve, a one-month supply lasts four months. 

One 12-week supply lasts a year. His energy level has been normal, 

and he enjoys the side eff ects, which he said are “looking great, having 

better skin, better hair, less fat, and more muscle.” 

“Looking great” is not something the FDA considers when 

reviewing the evidence of a drug’s safety and eff ectiveness. In 2007, 

Serono asked the FDA to approve Serostim to treat excess vat. Th e 

FDA denied Serono’s request, saying there wasn’t enough safety and 

effi cacy data to give the green light for vat. Also, the FDA expressed 

concerns that, once Serostim is stopped, vat comes back. To keep 

vat levels low, long-term therapy would be needed. And Serono 

hasn’t studied the drug long-term. 

With this, the FDA handed Serono a 

pharmaceutical smack-down, according 

to HIV treatment advocate Tim Horn who 

attended an FDA community meeting on 

Serostim. “In a very matter-of-fact tone,” 

said Horn, “the FDA made it clear that, ‘by 

the time Serono has completed a follow-up 

study to support a [vat] approval, another 

drug will have been approved by the agency 

for this indication.’ Obviously the FDA was 

talking about tesamorelin.” 

Twelve months of tesamorelin 

For most of my life, I refused to give in to the idea of exercise. 

It seemed reserved for vain people. But aft er turning 40, smoking 

cigarettes for years, battling back pain and obesity, I began to see 

exercise not as a tool for vanity, but rather as a means to stay healthy 

over the long run. 

Last year, I made a promise to myself: I will go to the gym at 

least three times a week, for at least one hour. Come hell or high 

water. It wasn’t easy sticking to this routine over time, but I did. 

About two months aft er I started this workout schedule is when I 

also joined the clinical trial for tesamorelin. 

Tesamorelin (pronounced tessa-more-ellen) is an experimental 

pharmaceutical drug that increases levels of growth hormone. 

Technically, it’s a “releasing factor” or a “proxy” to human growth 

hormone, which means it stimulates the body’s pituitary gland to 

produce its own growth hormone. When the body makes its own 

growth hormone, it’s called “endogenous.” On the other hand, 

somatropin is artifi cially produced and then injected into the body, 

which is called “exogenous.” 

Beware of dietary supplements that claim to be a “growth hormone 

releasing factor.” Dietary supplements are not regulated by 

the FDA. As such, makers of these supplements tend to steal catch 

phrases from legitimate pharmaceutical research and then integrate 

the language into misleading advertising for their products. 

Both tesamorelin and somatropin must be injected by needle, 

which can be annoying. Th ey also must be refrigerated, so I kept 



the tesamorelin box hidden in the crisper drawer. First thing every 

morning, I injected the drug into my abdomen. Th e fi rst jab is the 

most diffi cult. Like my workouts, the injection routine also got 

easier with time. 

Since I was getting to the gym regularly and on growth hormone, 

I fi gured it was the best time to hire a personal trainer. 

Th rough my gym, I connected with a trainer named Brian. We got 

along famously. His attitude about fi tness was relentlessly optimistic, 

which off set my cynical beliefs about fi tness. Th ree days a week, 

he coached me through core-strength and traditional weight training. 

I handled cardio on my own. 

In the fi rst three months of my tesamorelin/exercise regimen, 

I felt a dramatic relief of pressure from my stomach. I hadn’t realized 

how bloated my stomach had become until it began to shrink. 

However, I oft en felt muscle pain, which started in the evenings and 

In terms of safety, 

somatropin falls short when 

compared to tesamorelin. 

continued while I tried to sleep. Sometimes I woke up with cramps 

in my calves, thighs, and butt. I found stretching, massage, ibuprofen, 

and L-glutamine supplements helped alleviate this particular 

kind of muscle pain. 

By month six, my belly got fl atter and my muscles got bigger. 

My belly-to-butt ratio improved. Good and bad cholesterol 

improved, but my high blood pressure didn’t budge. Before the 

study, I felt like I was carrying a 20-pound turkey inside my belly. 

Aft er six months on the study, the turkey was gone. I went from a 

waist size of 36 to a waist size of 34. 

My mid-section shrank and my legs and arms gained muscle. 

I looked more proportional and felt more normal. Also, the quality 

of my skin improved. When I saw my boss in person aft er six 

months, she stopped into my offi ce, stared at me for minute, and 

then said, “You look 10 years younger.” 

By month nine, the weight loss slowed but the muscle growth 

continued. On a roll, I decided to quit smoking with a new anti-nicotine 

drug called Chantix. It makes you a little crazy and depressed, 

but kills the urge to smoke. Once I stopped the Chantix, I found 

myself binging on high-carb, high-fat foods. Luckily, my regular 

workouts helped off set those extra calories. 

By month 12 of tesamorelin/exercise, my weight was back to 

baseline. However, I felt completely diff erent: leaner in the belly 

and much bigger in the legs, arms, and butt. My absolute weight 

seemed less important to me because I felt good about how I looked 

in general. I felt normal. 

Still, the last few months on tesamorelin, I experienced some 

uncomfortable side eff ects. I felt numbness and tingling in my arms, 

31

hands, and fi ngers. If I slept with one arm under the pillow, that 

arm immediately fell asleep. Th e tingling and carpal-tunnel-like 

symptoms continued sometimes all day. At one point, I cut down 

my dose of tesamorelin for a couple weeks. Th e tingling disappeared, 

but returned once I started again on the higher dose. 

How tesamorelin stacks up against Serostim 

It’s easy to be impressed by the research on tesamorelin. Several 

large Phase 3 clinical trials have been completed and they are 

impressive. People taking 2 mg of tesamorelin lost at least 11% of 

their vat at week 26. At week 52, people lost up to 18% of their vat. 

According to the FDA, any vat reduction of at least 8% was good 

enough. 

For perspective, compare the numbers for both tesamorelin 

and somatropin. Aft er 26 weeks on 2 mg of tesamorelin taken daily, 

patients lost about 20 square centimeters from their belly when 

compared to placebo. Most of the eff ect occurred in the fi rst 13 

weeks of treatment. On the other hand, aft er 12 weeks on 4 mg of 

somatropin taken daily, patients also lost about 20 square centimeters 

from their belly when compared to placebo. 

In terms of safety, somatropin falls short when compared to 

tesamorelin. In a 12-week study of somatropin, about one-in-four 

patients were forced to stop or lower their dose because of intolerable 

side eff ects, such as swelling or glucose problems and diabetes. 

For tesamorelin, side eff ects were no more common than with placebo 

and showed no signs of prompting glucose issues. 

“We see the advantage in the safety profi le,” said Andrea Gilpin, 

vice president of investor relations and communications at Th eratechnologies 

(makers of tesamorelin). Newcomers to the HIV market, 

the small Canadian biotech plans to fi le for FDA approval by 

end of 2008. “We feel we have a good product and just need to take 

it to the fi nish line.” 

But whose fi nish line? Understandably for Th eratechnologies, 

the end game is FDA approval. But for patients, the predicament 

of tesamorelin and somatropin is what happens aft er the drug is 

stopped. For people who took tesamorelin for 26 weeks and then 

stopped, they regained nearly all their vat within six months. Th e 

same holds true for Serostim, except some unlucky patients gain 

back vat and get stuck with diabetes. 

“What’s the endpoint?” said Amorosa about the prospect of 

growth hormone as a viable treatment for vat. “What happens aft erward? 

Do you leave someone on medication for years?” She noted 

that growth hormone treatment isn’t practical for the majority of 

people with HIV. Furthermore, she cautioned that tesamorelin has 

not been compared to intensive diet and exercise. 

The boring truth about diet and exercise 

As a kid, I read the novel Flowers for Algernon. Th e main character, 

Charly, is the fi rst person to test a medical procedure that 

improves intelligence. Charly grows smarter, even brilliant at one 

point aft er surgery. But with time, he reverts back to his belowaverage 

IQ. For me, the prospect of reverting back to my old appleshaped 

self within six months is depressing. I wonder, is it better to 

have lost vat and gained it back, than to never have lost vat at all? 

32 

Over the years, a few scattered studies have looked at how exercise 

aff ects vat. In 2007, a 16-week clinical trial studied the eff ects 

of a supervised high-intensity exercise program on vat, cholesterol, 

and glucose control among people with HIV. Th e exercise program 

consisted of cardio and strength training—almost identical to the 

program my trainer Brian had imposed on me. 

Th e study was small, nine people started and only fi ve people 

fi nished. But the results were impressive. Researchers saw statistically 

signifi cant decreases in vat, triglycerides, and improvements 

for insulin sensitivity. Th e researchers concluded that a larger study 

of exercise intervention is justifi ed. Unfortunately, there isn’t money 

to be made from exercise. Th ere is no large exercise organization to 

lobby for its benefi ts. So, vat interventions will continue to come in 

the form of pharmaceutical pills and shots. 

To maintain less fat and more muscle, I fi gure the key is diet 

and exercise. I plan to continue my three-times weekly workouts 

with Brian. But calorie restriction has never been easy for me, especially 

without cigarettes. 

“Honestly, the most important thing is not to smoke,” said 

Amorosa. “A lot of people smoke because they want to keep thin. 

In our patients who have HIV, there’s a lot of smoking. It’s worse 

in terms of risk factors for heart attack and everything else. Even if 

people were to gain fi ve pounds from not smoking, that would be 

worth it. If they care about their health, that’s number one.” 

At the end of the day, she said, there are two primary issues 

people should consider. Th ere’s the physical issue of being comfortable 

in your own skin, how you look. Th e other is the potential for 

bad health outcomes, like heart disease and diabetes. 

So what’s a person to do? “It’s boring, but it’s diet and exercise,” 

said Amorosa. People should adopt healthy eating habits that are 

sustainable over time. People need to learn exactly what that means. 

She suggested limiting calories, but especially those from sugar and 

alcohol. She also suggested that Weight Watchers has a solid track 

record for long-term weight loss. “Th inking about pharmacologic 

interventions,” said Amorosa, “compare the cost of tesamorelin to 

the cost of a membership at Weight Watchers.” 

Aft er a year on tesamorelin, I can say that tesamorelin reduces 

vat and increases muscle. No question. Is tesamorelin more eff ective 

than Serostim? Probably. Tesamorelin certainly is safer—so far 

anyway. Does the vat return when treatment stops? Yes, that’s what 

the research says. 

What am I going to do without growth hormone? I’m going 

to choose the relentlessly optimistic attitude about fi tness that my 

trainer drilled into me. I will continue to work out three days a 

week. As for my Tuesday nights, I quit group therapy. In its place, 

I’ve joined Weight Watchers. Maybe it’s hokey, but I don’t care. For 

long-term health, it’s important to stay as lean as possible. Aft er all, 

I was blessed enough to survive HIV, the least I can do is take really 

good care of the rest of me. e 

Brett Grodeck is the author of The First Year—HIV: An Essential 

Guide for the Newly Diagnosed, and a former editor of Positively 

Aware magazine. 


Positively Aware

Methadone 

wellness 

Sarz Maxwell, M.D., is a psychiatrist 

with the Chicago Recovery Alliance, 

and before that, she was with the 

Center for Addictive Problems methadone 

clinic in Chicago. 

Enid Vázquez: So, this is an issue 

about wellness. What do you want to 

say about methadone and wellness? 

Sarz Maxwell: Let me put it in the 

context of what methadone does. And 

to do that you have to understand what 

heroin addiction is. 

Our brains produce natural opiates 

called endorphins. We’ve all heard of 

them. For some reason we don’t understand, 

in people who will become addicted 

to heroin, the brain stops making 

enough endorphins. So for someone with 

this condition, taking opiates—whether 

it’s heroin or methadone or whatever—is 

exactly the same as someone with diabetes 

taking insulin. So not only does methadone 

promote wellness, but in people 

who have this disease of endorphin deficiency, 

which usually we see as heroin 

addiction—that’s the way it manifests 

itself, that’s how we make the diagnosis— 

methadone is necessary to wellness. 

Abstinence-based treatment for opiate 

addiction—it doesn’t matter what the 

treatment is, whether it’s three years of intensive 

residential, whether it’s intensive 

outpatient, whether it’s 12-step based— 

any treatment for opiate addiction that 

does not include methadone has a relapse 

rate of 90%. Nine-o. That would be like 

saying, “Well, 10% of people who are on 

just a protease inhibitor as opposed to a 

HAART [highly active anti-retroviral 

therapy, for HIV] regimen do okay, so 

let’s just start with that.” It’s insane. But 

… talking about methadone and wellness 

is a whole new slant on it because we don’t 

think about addiction as treatment in 

terms of wellness. We think about it in 

terms of goodness or badness. 



EV: That’s great, because we’re going 

to go there … all the stigma, all the 

discrimination. 

SM: That’s a good way to lead off. 

That’s one of the problems, is that we 

don’t talk about methadone and wellness, 

we talk about methadone as goodness or 

badness. 

That’s because we don’t conceptualize 

addiction as a disease. We talk about it as 

a disease, but that’s bullshit. We don’t act 

like it’s a disease. In what other disease 

would I as a doctor say to someone, “Okay, 

I’ve had you in treatment, but you’re still 

sick so … get out of here.” It’s insane. 

How many people with diabetes are 

able to do without insulin? I keep bringing 

up that analogy because it is exact. 

Heroin addiction is caused by a deficiency 

of endorphins in the brain, just like diabetes 

is caused by an insulin deficiency 

in the pancreas. There are some people 

who develop diabetes late in life because 

they had some sort of drug interaction, 

or because they’re pregnant, or because 

they’re overweight. And for those people, 

they may be able to manage their diabetes 

once they take care of that underlying 

condition. They may be able to manage it 

through just diet. But for people with the 

disease, you’re not talking to them about 

getting off of insulin! 

People ask, “Isn’t methadone harder 

to get off of than heroin?” I don’t understand 

that! How hard is HAART to get 

off of? But we don’t talk to people about 

getting off of HAART. “This is something 

you’re going to take for a couple of years 

and then when your HIV is all over, we’ll 

wean you off it.” And of course, people say, 

“But they want to get off their methadone.” 

Doctor and advocate Sarz 

Maxwell on the science— 

and madness 

Interview by Enid Vázquez 

Of course! How many people want to take 

HAART? 

All I can do is rant, because the questions 

don’t have any answers, because it’s 

all fucked up. People who are addicted to 

opiates, the problem is not that they use 

opiates. It’s that they need opiates. They 

don’t function without them. They can’t 

function without them. And so the only 

options that are given to them are to not 

function because they’re not getting their 

opiates or to get their opiates through a 

system that doesn’t allow them to function. 

How many people with diabetes 

are able to do without insulin? 

EV: I remember these horrific stories 

on a methadone listserv years ago. 

The other doctor at your clinic was 

on it. 

SM: Marc Schinderman [of Center for 

Addictive Problems, in Chicago, Downers 

Grove, Illinois, and Westbrook, Maine]. 

EV: People had to get to the clinic 

within these certain times, and go 

each and every day. The people in 

California were worried that if an 

earthquake occurred, they wouldn’t 

be able to get their medicine. 

SM: We still conceptualize methadone 

as candy, that we give to good little addict 

s and withhold from bad little addict s, 

and if they can’t get their candy today, oh 

well. 

Methadone is still working off rules 

that were established 25 years ago—just 

like everything else in medicine. Nothing 

has changed in 25 years, you know? 

But the rules are that for the first 90 days, 

people must come to the clinic six days a 

week. After 90 days they are eligible to ap- 

33

ply to only come fi ve days a week. If the 

clinic doesn’t wanna let them come five 

days a week, they don’t. If they happen 

to have an opiate-positive urine because 

maybe one day they couldn’t come in and 

of course the next day when they come in 

the counselor drops them because that’s 

what urine drops are for, not to figure out 

how people are doing but to catch ‘em! 

And so you have an opiate-positive urine 

and now you can’t get pick-ups. So people 

may be on methadone for years and still 

being forced to come into the clinic six 

days a week. 

EV: But they’re still using because 

…they’re not getting enough 

methadone. 

SM: Exactly, exactly. It would be like 

telling someone they can’t have ARVs 

[antiretrovirals] because they still have a 

viral load. 

EV: [Laughs.] 

SM: Exactly. We can laugh about that, 

but Enid, it’s still the number one reason 

why people are discharged in … volun … 

tarily from treatment. And there’s no recourse. 

There’s no one they can go to and 

say, “This isn’t fair, I need my treatment.” 

And then when they go back on the street 

and use heroin, everyone says, “See. I 

knew they were just a scumbag. They just 

wanted heroin all along.” 

After Hurricane Katrina, anyone with 

diabetes—they were out there looking for 

them and finding ways to get them their 

insulin. But … addict s? We drove down to 

Katrina. We outfitted one of the vans to 

be a methadone dispensing unit. Everybody 

up to the head of addiction services 

in Louisiana said, “Problem? With heroin 

addict s? There’s no problem. I’m so sorry 

you had to drive all the way down for 

nothing.” It wasn’t even seen as a problem. 

It’s invisible. 

You see, heroin addicts have no advocacy. 

In 1988 my patients could write 

to their congressmen and say, “I’m gay, I 

have AIDS, and I vote.” What are my patients 

supposed to do now? Write to their 

But probably the majority of 

people who are addicted to 

heroin have jobs and they work 

and pay their bills, and one of 

their bills is their dealer. 

34 

congressmen and say, “Here’s my name, 

here’s my address. I commit a felony two 

or three times a day. Can you give me a 

hand?” There’s no voice. They’re completely 

invisible. They can’t build advocacy 

because their life is against the law. 

EV: I knew this one AIDS activist 

on methadone from New York. Her 

clinic wouldn’t give her take-homes 

to take to the International AIDS 

Conference in Thailand. A totally 

nice person. She ended up getting sick 

while at the conference. 

SM: Unbelievable. It’s about them being 

criminal. It’s about methadone not 

at all being conceptualized as treatment. 

When people come into treatment, they’ll 

see a doctor the first week because that’s 

required by law. And the doctor will do 

an intake exam and they may never see a 

doctor again. So who decides what dose 

to take? The patient does. The counselors 

are putting restrictions on it, just the way 

you do with someone on HAART. “You 

want to take a little more of your Viramune? 

No, I’m sorry, you can’t take more 

Viramune. That’s too high a dose.” It’s not 

medical. 

EV: Does it not [the negative attitude] 

go back to what they do on the 

streets? 

SM: No, no, because not everyone 

who is addicted to heroin commits crime. 

Many poor people who are addicted to 

heroin may commit crime to get it, but 

it’s just like many poor people addicted 

to alcohol may commit crimes to get it, or 

panhandle or whatever. But probably the 

majority of people who are addicted to 

heroin have jobs and they work and pay 

their bills, and one of their bills is their 

dealer. 

Heroin is insulin. But no matter how 

many times you say it we don’t believe 

it because we’re brought up in a culture 

where heroin addicts commit crime and 

they’re just scum and they’re just bad. 

And they don’t have advocates. I’ve 

been treating HIV since 1985, and I remember 

when Tom Hanks and Princess 

Di changed the image of people with HIV 

and made it a completely different thing. 

No one does that for heroin addiction. 

Their life is against the law. 

EV: People have this option to go get 

methadone, but it’s so difficult. Is 

that maybe a reason why people don’t 

even try to get it? 

SM: Absolutely … absolutely. And it’s 

not just difficult. It’s pretty awful. You 

see how this room looks? [TPAN is under 

construction at the time of the interview.] 

This is the way the waiting room looks at 

a clinic. 

EV: Oh, no! We’re under 

construction! [TPAN received a major 

grant from SAMHSA—the Substance 


Positively Aware

Abuse and Mental Health Services 

Administration—and is doubling in size 

with a program for active drug users 

and people in recovery.] 

SM: Exactly. You walk into the waiting 

room and there’ll be chicken bones and 

used Pampers in the corner. And there’s 

a man with a gun standing there. And in 

the background, through a partition wall, 

you can hear counselors yelling at their 

patients. “WHAT DO YOU MEAN YOU 

WANT MORE METHADONE? YOU’RE 

USING! YOU QUIT USING, THEN YOU 

COME ASK FOR MORE METHADONE.” 

It’s still the number one reason why people 

are discharged from methadone clinics, 

that they’re still using heroin. 

EV: I remember this one story on the 

listserv. It stays with me forever. 

This woman ran into an alcoholic 

friend from the old days, outside her 

methadone clinic. He asked her for a 

couple of bucks and she gave it to him. 

They were across the street from the 

clinic talking and he spat out, “Look 

at those junkies.” 

She was making a good life, was able 

to hold a job, was able to give him a 

couple of dollars, and treat him with 

some respect. 

SM: People talk about heroin addicts 

being unmotivated. Heroin addicts are 

willing to put up with the most unbelievable 

abuse in order to get treatment. They 

are desp erate for treatment. Why else 

would anyone put up with those kind of 

restrictions? And the kind of shaming … 

disrespectful … abusive treatment that 

they get from their counselors. 

EV: And the treatment they get from 

others on the street. 

SM: From everyone. Their families. 

“When are you gonna get off that stuff!” 

The DCFS [Department of Children and 

Family Services] will say, “If you don’t get 

off the methadone, I’m gonna take your 

kids.” 



EV: Really? 

SM: Yeah, yeah, yeah. That’s still happening. 

DCFS is taking kids because 

women are still on methadone. 

EV: Anything else to say to people 

on methadone about wellness or to 

anyone else? 

SM: Well, we can say some things about 

wellness and methadone. Number one, 

if you’re still using heroin—or craving 

heroin—it’s not because you’re a hopeless 

junkie. It’s not because you’re a scumbag 

who doesn’t want treatment. It’s because 

the dose is not yet adequate. If you were 

starving and I gave you a piece of bread, 

and you were still hungry, that wouldn’t 

mean that food doesn’t work for hunger. It 

would mean that I didn’t give you enough 

food. So that’s the number one thing. You 

should get the dose of methadone that 

your body needs. Listen to your body and 

ask for it. As for side effects of methadone, 

those can be managed. But see, I could say 

this shit to people and it doesn’t matter. 

They can’t get it. So no, I can’t tell them 

about wellness and methadone. 

EV: What’s it going to take? 

SM: I don’t know what it’s going to 

take. What it took for HIV was prominent 

people doing advocacy. Princess Diana. 

Prominent people coming out. Magic 

Johnson. What do we have for heroin addicts? 

We have Rush Limbaugh. 

EV: Is there still a list around that we 

can refer people to in the article? 

SM: Yes, NAMA, National Association 

of Methadone Advocates. (Visit www. 

methadone.org; also, www.methadonesupport.org 

lists drug interactions and 

support groups. Addiction Treatment 

Forum is a great newsletter—visit www. 

ATForum.com.) 

if you’re still using heroin—or 

craving heroin—it’s not because 

you’re a hopeless junkie. 

EV: It’s some kind of starting ground 

for self-help, to find someone who 

knows what they’re going through. 

It’s helpful. It’s our model. 

SM: Absolutely. 

I have no idea what you’re going to find 

to write about. 

EV: I’m just going to use it from start 

to finish. Because a lot of people 

don’t understand it, don’t want 

to understand it. Don’t have any 

compassion. 

SM: Don’t … want … to … understand 

… it. We’ve had all this information 

about heroin addiction for 40 years. But 

our beliefs about addiction—our beliefs 

about HIV, are based in moral attitudes. 

My sister believes in Creationism. We can 

go down to the Field Museum and look at 

dinosaur bones and it doesn’t change her 

opinion, because her beliefs are based on 

religion, not on science. e 

Editor’s note: View the entire interview 

at www.positivelyaware.com. 

Special thanks to Kay Lee for insp iring 

this article.—EV 

35

Maintaining wellness (or as we old-timers used to say, “staying 

healthy”) involves a collaboration between you and 

your health care provider. Th e process is far too complex 

to be reduced to a simple checklist, but there are some objective 

things you can do to help optimize your health, including regular 

lab testing and vaccinations. It’s a good idea to keep your own 

record of the most important test results, vaccination dates, and 

your antiretroviral therapy (ART) history, especially if you’re ever 

likely to move or change doctors. 

Routine Tests 

CD4 count: Measures the health of your immune system and 

your risk for opportunistic infections (OIs). Higher numbers are 

better. Th e most important test for deciding whether to st art antiretroviral 

therapy (ART) and OI prophylaxis (preventive therapy). 

Ordered at baseline and repeated every 3-6 months. 

Viral load: Measures viral replication (the activity of the virus). 

Lower numbers are better. People with high viral loads tend to progress 

more rapidly than people with low viral loads. Th e most important 

measure of whether your drugs are working: it should become 

undetect able on treatment. Ordered at baseline and repeated every 

3-4 months. 

36 

Wellness 

Checklist 

Important things to consider 

when you’re HIV-positive 

by Joel Gallant, MD, MPH 

Resistance test: Determines whether your virus is resistant to 

antiretrovirals (ARVs). Should be ordered at baseline and whenever 

your treatment is failing with a viral load of over 500-1,000. Th ere 

are two types of resistance tests. Genotypes look for mutations that 

cause drug resistance. Th ey’re cheaper, faster, and fi ne for most purposes. 

Phenotypes measure how well the virus grows in the presence 

of varying concentrations of ARVs. Th ey have advantages in people 

with a lot of resistance, especially to protease inhibitors (PIs). Th e 

combined test (PhenoSense GT) measures both. Th e virtual phenotype 

(VircoTYPE) uses a genotype to estimate the phenotype. 

Complete Blood Count (CBC): Measures your white blood 

cell count, red blood cell count, platelet count, hemoglobin, and 

hematocrit. A low hemoglobin and hematocrit mean you’re anemic. 

Ordered at baseline and every 3-6 months (usually whenever you 

get a CD4 count). Should be checked more frequently aft er starting 

AZT, which can cause anemia. 

Comprehensive Chemistry Panel: A collection of tests, 

including measures of liver damage and kidney function. Ordered 

at baseline and on a regular basis, with the frequency depending on 

whether you’re taking drugs that can aff ect the liver or kidneys. 

Toxoplasma IgG: Determines whether you’ve ever been 

infected by the Toxoplasma parasite, which can cause brain lesions 

in people with CD4 counts below 100. Ordered at baseline, and 

sometimes repeated if your CD4 count is below 100, to determine 

whether you need to take prophylaxis. 

CMV IgG: Determines whether you’ve ever been infected by 

CMV (cytomegalovirus). Usually ordered once at baseline. Not a 

critical test since most people’s tests are positive, and there’s not 

much you can do with the results anyway. 

Lipid panel: Measures your triglycerides and your total, HDL, 

and LDL cholesterol, which help determine your risk of heart disease. 

Should be ordered aft er an overnight, 12-hour fast at baseline 

and approximately once a year, especially if you’re on drugs that 

can increase lipid levels. 

Fasting glucose (blood sugar): A test for diabetes or insulin 

resistance. It’s included in the comprehensive chemistry panel, but 

the result is most helpful if you’re fasting. Ordered at baseline and 

approximately once a year, especially if you’re on drugs that can 

increase blood sugar or cause insulin resistance. 

Pap smear: A screening test for cervical dysplasia (abnormal 

cells) or cancer in women that looks for abnormal cells caused by 

HPV (human papillomavirus). Done at baseline and at least every 

year aft er that—more frequently in women with abnormalities. An 

abnormal Pap smear should lead to colposcopy, a test that allows 

abnormal areas to be biopsied. Anal Pap smears are now being performed 

at many centers to look for anal dysplasia and cancer in 

both men and women, especially those who have had anal sex. An 

abnormal anal Pap smear should be followed by high resolution 

anoscopy (HRA). 

TB skin test (PPD): A skin test that tells you whether you’ve 

ever been exposed to the bacterium that causes tuberculosis (TB). If 

the test is positive, you should take nine months of INH (isoniazid) 

to prevent active TB, aft er being checked to make sure you don’t 

already have it. Th e test should be done at baseline, then every year 

in people at high risk for TB. Th e test is less accurate if you have a 

low CD4 count, so it should be repeated aft er your CD4 count goes 

up on ART. 

Urinalysis: Th e best reason to get a baseline urine test is to fi nd 

out if you have protein in your urine. Th is is especially important if 


Positively Aware

you have diabetes, hypertension, or if you’re black, since blacks are 

at risk for HIV-associated nephropathy (HIVAN). 

Screening Tests for Sexually Transmitted 

Infections 

Syphilis: A blood test (RPR, VDRL, STS, and others) is used 

to diagnose syphilis and to make sure that treatment of syphilis 

has been eff ective. Ordered at baseline and at least every year (or 

whenever there are symptoms). 

Gonorrhea and Chlamydia: In men, urine tests can be used 

to diagnose these infections if they’re in the penis. In women, cultures 

are sent during routine pelvic exams. Men or women who 

have anal sex should also be tested with rectal swab cultures. Th roat 

cultures are used to look for oral gonorrhea (but not Chlamydia). 

Recommended at baseline and every year (or whenever there are 

symptoms). 

Tests for Viral Hepatitis 

Hepatitis A: Th e total hepatitis A antibody (anti-HAV total) 

tells you whether you’ve ever been exposed to hepatitis A. If it’s 

negative, consider getting a hepatitis A vaccine, especially if you 

also have hepatitis C. If it’s positive, you’re already immune. 

Hepatitis B: Th e surface antibody (HBsAb) tells you whether 

you’re immune to hepatitis B. Th e surface antigen (HBsAg) tells 

you whether you have hepatitis B (either acute or chronic). If both 

are negative, you should get vaccinated against hepatitis B. If the 

HBsAb is positive, you’re immune. If the HBsAg is positive, you’ll 

need further testing, including a hepatitis viral load (HBV DNA), 

an “e antigen” (HBeAg), and a scan of your liver. 

Hepatitis C: Th e antibody (anti-HCV) tells you whether 

you’ve been exposed to the hepatitis C virus (HCV). If it’s positive, 

the HCV viral load (HCV RNA) then tells you whether you 

have chronic infection. If that’s positive, you’ll need further testing, 

including an HCV genotype and a scan of your liver. People at 

risk for hepatitis C (especially injection drug users or people with 

unexplained liver abnormalities) should get an HCV RNA even if 

their antibody is negative. 

Non-Routine Tests 

HLA B*5701: Determines whether you’re likely to develop the 

abacavir hypersensitivity reaction (HSR) if you take Ziagen, Trizivir, 

Epzicom, or Kivexa. Be sure your test is negative before taking 

abacavir in any of those forms. 

HIV tropism (Trofi le ES): Determines whether your virus 

is “R5-tropic,” the kind that responds to Selzentry (maraviroc). If 

the test shows “dual/mixed-” or “X4-tropic” virus, the drug won’t 

work. Very expensive; should be ordered only if you’re considering 

Selzentry. 

Bone density scan (DEXA): Indicated in some people with 

risk factors for osteopenia (decreased bone density), which include 

smoking, use of corticosteroids, low testosterone levels, and older 

age. 

Testosterone level: Should be ordered in people with weight 

loss, fatigue, loss of sex drive or erectile dysfunction, and possibly 

even depression, since hypogonadism (low testosterone levels) can 

cause these symptoms. Most accurate if the blood is drawn in the 

morning. 



Chest x-ray: Some doctors order this at baseline to look for TB, 

cancer, or other abnormalities, but this is not a standard recommendation 

in non-smokers without symptoms. 

Blood culture for AFB: Used to diagnose Mycobact erium 

avium complex (MAC). Ordered in people with CD4 counts below 

50 who have fever, weight loss, or other symptoms. Some doctors 

order it in anyone with a CD4 count below 50 before starting MAC 

prophylaxis. 

Cryptococcal antigen: Used to diagnose cryptococcal disease, 

including meningitis. Ordered in people with CD4 counts below 

100 who have fever or headache. If it’s positive, you need a lumbar 

puncture (spinal tap). 

G6PD: People of African or Mediterranean descent can have a 

genetic defi ciency in glucose-6-phosphate dehydrogenase (G6PD), 

which can result in severe anemia when certain drugs are taken, 

including some drugs used to treat or prevent OIs, such as dapsone, 

primaquine, and sulfa drugs. If you have that genetic background, 

it’s reasonable to get a G6PD level at baseline so you can avoid those 

drugs if it’s low. 

Vaccinations 

Although there are a number of recommended vaccinations, 

don’t rush out to get them as soon as you’re diagnosed. Th ey’re 

much more likely to work if your immune system is healthy and 

your viral load is undetectable. If you’ll soon be starting ART, postpone 

the vaccinations until your viral load is undetectable and your 

CD4 count has gone up. 

Pneumococcal vaccine (Pneumovax): Helps prevent pneumococcal 

pneumonia, caused by a common bacteria. Recommended at 

baseline, with a booster aft er 5 years. 

Influenza (flu) vaccine: Recommended every year, usually in 

October, or November, before fl u season. 

Hepatitis A vaccine series: Recommended for people who 

aren’t already immune, especially if they have hepatitis C. 

Hepatitis B vaccine series: Recommended for people who 

aren’t already immune. 

Tetanus toxoid (dT): Recommended for everyone every 10 

years. 

Vaccines for international travel: People with HIV should 

generally avoid live vaccines, such as measles-mumps-rubella 

(MMR), yellow fever, or the live typhoid vaccine. However, the benefi 

t of the vaccine may outweigh the risk in some cases, especially if 

you have a high CD4 count—when in doubt, consult your HIV doc 

or a travel medicine specialist. 

Conclusion 

Th ere’s more to health (and wellness, for that matter) than lab 

tests and vaccinations, but having a list like this is a good start. For 

more detailed information on these and other related topics, see 

my book 100 Quest ions and Answers about HIV and AIDS and the 

archived questions in the Q&A Forum of the Johns Hopkins HIV 

Guide at http://hopkins-hivguide.org. e 

Joel Gallant, MD, MPH, is Professor of Medicine and Epidemiology 

at the Johns Hopkins University School of Medicine’s Division 

of Infect ious Diseases, and Associate Direct or of the Johns Hopkins 

AIDS Service. 

37

Th e concept of Nightsweats and T-cells 

was born out of frustration. 

In the late 1980s, gay author, poet and 

activist Paul Monette and his best friend 

Victor Brown were on vacation together 

when they befriended a radical social 

worker from Cleveland. 

Honey, as she was aff ectionately called, 

worked in the infectious disease unit at a 

local university hospital. She expressed 

great concern regarding the overwhelming 

number of her clients and friends across the 

country whom she witnessed die relatively 

quick and horrifi c deaths due to complications 

with AIDS as the U.S. government 

and the rest of its citizens sat idly by doing 

nothing. Paul and Victor, both living with 

HIV, could completely relate. 

Th e three of them spent hours sharing 

how they had each been personally aff ected 

by the disease and lamenting about the 

devastating eff ects that it was having on the 

gay community at large. From their discus- 

38 

Nightsweats 

and T-Cells 

Where business and social service meet 

sions, they idealized a fi ctitious company 

that would produce and distribute a line 

of T-shirts brandishing strong, provocative 

messages about AIDS—messages such as, 

“All I want is a cure and my friends back,” or 

“I just can’t have another day like tomorrow.” 

Th ese messages, they felt, would force AIDS 

into the face of the general public, in everyday 

places such as the grocery store or on 

public transportation, making the subject 

matter diffi cult for anyone to ignore. 

Upon her return home to Cleveland, 

Honey began work on a project which 

required that she have custom T-shirts 

designed. She learned that there was a local 

screenprinter in town who was living with 

AIDS, and sought him out for the job. 

Michael Deighan had just started 

his own screenprint shop and was excited 

about the work that Honey brought to him. 

Not only did it provide a source of income 

for his fl edgling business, but the nature of 

the project itself was powerful in a way that 

gave his work a purpose. 

Honey shared with Michael the conversations 

that she had had with Paul and 

Victor and, before long, Nightsweats and 

T-cells became a reality. Initially, they were 

selling shirts out of Honey’s car and giving 

the money away to people with AIDS 

(PWAs). Th eir primary objective was to get 

their messages out into the world. 

“People were dropping like fl ies,” said 

Michael. “Th ese were very scary times and 

we wanted to have T-shirts out there that we 

thought were important.” 

As the demand for their shirts began 

to increase, so did the need for more manpower 

to assist with the workload. However, 

instead of placing an ad in the classifi eds for 

part-time help, these innovative entrepreneurs 

devised a plan that many at the time 

considered irrational. In the pre-protease 


inhibitor era, they conspired to put people 

with AIDS back to work. 

Th eir logic came from the fact that 

although they were witnessing countless 

numbers of people die from the disease, 

they also knew a signifi cant number 

of survivors. Th ey realized that it wasn’t 

necessarily the virus itself that was killing 

these people, many of whom were gain fully 

employed before they became too ill to 

work full-time. Instead, Honey and Michael 

observed, many of them were dying of sheer 

boredom. 

Sure, life with AIDS was no walk in the 

park. But most PWAs were usually not sick 

every day, but maybe only four or fi ve days 

out of the week. 

With this understanding, Michael and 

Honey agreed that rather than give the 

proceeds from the line of shirts away to 

people with AIDS, they would bring some 

of these same people in on the days when 

they weren’t feeling so sick. Th ey would 

teach them the ins and outs of screenprinting, 

with the intention of providing them 

a source of income and a sense of dignity. 

Th eir idea became an instant success. 

Eventually, more for the sake of keeping 

his sanity than anything, Michael 

merged his custom screenprinting business 

with Nightsweats and T-cells. Around the 

same time, he met and fell in love with Gil 

Kudrin. Gil worked as an engineer in a local 

hospital and believes that he’s been living 

with HIV since the early ’90s. 

His new found partner’s passion for the 

work that he was doing at Nightsweats and 

T-cells compelled Gil to become involved. 

But it was Gil’s creative vision that would 

take the company to the next level. 

“In 1992, we took the business outside 

of Ohio for the fi rst time,” says Gil. “We 

went to the AIDS Quilt when it was in D.C. 

in October of 1992. 



Photo: Enid Vazquez - TPAN volunteer Ed Kuras with agency outreach bag designed by Toolbox, Inc., and printed by Nightsweats and T-cells

“I borrowed my brother’s van, we got 

a vendors license and set up a table, and 

then a couple of amazing things happened. 

First, we couldn’t take money from people’s 

hands fast enough once they found out what 

we were doing. More importantly though, 

people with AIDS from all over the country 

started coming up to us saying, ‘Th is is so 

awesome! I would love to work the two days 

a week when I’m not sick. Do you know of 

anything like this in my city? Are you guys 

gonna franchise?’ ” 

By the end of the weekend, they learned 

that a project similar to Nightsweats and 

T-cells was operating in New York City. It 

was called Multitasking Systems, and it 

was a temp service staff ed with people with 

AIDS. 

Unfortunately, the man who told them 

about this other organization was suff ering 

from severe dementia, and wasn’t able 

to provide any type of contact information 

(and you have to remember that this was the 

early 1990s, and the luxury of the Internet 

was not as widely available). 

For the sake of exchanging ideas about 

running an operation such as theirs, Gil 

was determined to connect with the folks 

who had organized Multitasking Systems. 

His persistence paid off and in 1994 he 

co-presented a groundbreaking workshop 

with them at the National Skills Building 

Conference, which later became the United 

States Conference on AIDS. 

“Th is was the fi rst time that employment 

issues for people with AIDS, not talking 

about giving us disability but talking 

about getting us jobs, was addressed on a 

national level,” Gil remembers. 

“But out of 3,500 people, only six people 

showed up to the workshop. Everyone was 

trying to bury us back then. People thought 

we were nuts. Th ey would say, ‘People with 

AIDS can’t do that much work. We can’t run 

a business staff ed with PWAs.’ ” 

Infuriated, Gil reminded them of the 

contrary. 

“I said, ‘Well, who do you think built 

your agencies? We built a whole care system 

for people with AIDS. Th ere is nothing 

we can’t do. We’ve already proved that to 

the world.’ ” 

Th e seeds that were planted that day 

were not lost on unfertile ground. One of 

the six attendees was from Oklahoma City 

and, upon returning to his home town, he 

wrote a grant and was funded to start a 

temp service there. 



Nightsweats and T-cells remained a 

unique entity unlike this newly created 

organization, or even like Multitasking 

Systems, in that it has opted to not go the 

not-for-profi t route. 

“We don’t want to have to stop doing 

the kinds of shirts we do,” says Gil (they 

are currently working on a shirt in support 

of Barack Obama, to complement the ones 

that strongly criticize and ridicule the current 

administration). “We want this to be 

about being self-reliant.” 

Th at self-reliance, however, has not 

come without cost. When asked about the 

single most challenging aspect of running a 

shop such as Nightsweats and T-cells, both 

Michael and Gil respond, without hesitation, 

that it is getting work. 

“Sometimes just getting people within 

the AIDS industry to support us is a challenge,” 

said Gil. “Th e AIDS industry has 

become an industry, and people change 

jobs all the time. We’re constantly having 

to re-introduce ourselves to people in ASOs 

all over the country. 

“We travel to conferences to reach people 

with AIDS and to harass the drug companies. 

We’ve never had a pharma company 

do business with us. All those thousands 

and thousands of bags you see at all those 

conferences. We’ve never been allowed to 

bid on one of those bags. Th ey get them 

mass produced in China somewhere, where 

they can pay less money.” 

To sustain itself and continually 

increase opportunity for people with AIDS, 

Nightsweats and T-cells extended the 

reach of its line of shirts to store shelves in 

places as far away as Hawaii and London. 

Th ey have also maintained a loyal base of 

customers who frequently use them for 

custom work. Th eir customer base ranges 

from families wanting T-shirts for their 

annual reunions, to the restaurant on the 

corner, agencies such as TPAN and Broadway 

Cares, to Bernadette Peters and Mary 

Tyler Moore. 

“Our prices are competitive and we do 

quality work,” said Gil. “Th e people who created 

Adobe Photoshop do business with us. 

In fact, they sent somebody to us for advice 

on how to do the four-color process.” 

Gil admits, though, that even with all 

of the fi nancial obstacles, Nightsweats and 

T-cells is very diff erent from other companies, 

where the bottom line is money. 

“Our bottom line is staying alive,” he 

says. 

In 1995, Gil’s deteriorating health 

forced him to quit his job in the hospital 

and take on a more full-time role with 

Nightsweats and T-cells. 

“I just got too sick to continue working 

there,” he says. “I was exposed to way 

more pathogens than most people with HIV 

would normally be exposed to.” 

And, the truth of the matter is, a work 

environment such as what he’s helped to 

create at Nightsweats and T-cells is far more 

favorable for people with AIDS. 

He recalls an incident where a reporter 

was coming to the shop to interview him 

about the work that Nightsweats and T-cells 

is doing, and he had an “accident” following 

his morning dose of meds. 

“I was able to yell from the bathroom, 

‘Somebody go and get my spare shorts 

because the reporter from the gay press is 

on his way,’ ” he says, laughing hysterically. 

“And that could happen fi ve times a week 

here and nobody would bat an eye.” 

He says that organizations like Nightsweats 

and T-cells are still relevant today 

because, contrary to what you hear, the 

AIDS epidemic is not over. It simply has a 

diff erent face. And, even in 2008, employment 

opportunities for people with AIDS 

are limited. 

All of the local social workers know 

Nightsweats and T-cells, and call upon them 

when they’re trying to fi nd work for some of 

their most “unemployable” clients—former 

sex workers with no traceable work history, 

or men who have been recently released 

from prison who no one will hire because 

of their rap sheet. 

Th e social workers call on Nightsweats 

and T-cells because they know that such 

people, particularly the ones who are also 

infected with HIV, will be welcomed with 

open arms at Nightsweats and T-cells. 

One PWA staff member came to Nightsweats 

and T-cells aft er 20 years in prison. 

With two years of work there under his belt, 

he was able to step up to a much better position 

somewhere else, where he’s been for the 

past three years. 

“Someone who has been selling their 

body on the streets for the last 15 years can 

sell the hell out of shirts,” Gil says seriously 

of some of the staff members who’ve come 

their way. “Th ey know how to sell. Th ey’ve 

been selling their whole lives. Th ey are 

salespeople. It’s just a matter of us looking 

diff erently at our surroundings. And, hopefully, 

we are a role model for that.” e 

39

HIV Wellness Oxymoron 

Either of two 

retroviruses that 

infect and destroy 

helper T-cells 

of the immune 

system, causing the 

marked reduction 

in their numbers 

that is diagnostic 

of AIDS—called 

also AIDS 

virus, human 

immunodeficiency 

virus* 

Joey 2001 

It was early 2001. I remember thinking it was not like Joey to 

be late. I’d known him for several years and he always arrived for 

his appointments early or on time. He was now 15 minutes late and 

I had begun to worry. Th e phone rang and instinctively I picked 

40 

The quality or 

state of being 

in good health, 

especially as an 

actively sought 

goal* 

Long-term Survivors of HIV and Wellness 

No longer an oxymoron 

by Jeff Levy, LCSW 

Something (as 

a concept) that 

is made up of 

contradictory 

or incongruous 

elements* 

it up, thinking it might be Joey on the other end. “Hello?” Nothing. 

“Hello?” Still nothing. Th en muffl ed crying. “Joey? Is this you? 

What’s the matter?” 

Aft er several minutes, I learned Joey was trapped in a bathroom 

several blocks away. He had gotten off the bus on his way to 

see me because he had an urgent need to relieve himself, but barely 

made it to a gas station bathroom. He had no clean clothes and was 

too embarrassed to leave. Luckily, he had a cell phone and called 

me. 

Joey was 35 when we met in 1998 and had been HIV-positive 

since the late 1980’s. He had been on various HIV-related medications, 

but his health continued to deteriorate. Joey worked as an 

attorney, but the pace of his work was becoming more diffi cult to 

manage as his disease depleted him more and more. To complicate 

matters, he and his partner (also HIV-positive) were addicted to 

crystal meth and their relationship had become violent. At the time 

of this phone call, Joey had lost his job, left his home, and was barely 

managing to survive in homeless shelters. He had resigned himself 

to a very short future, and was focusing on putting his meager 

resources in order for his family. 

I scurried around my offi ce to fi nd clothing I could bring to 

Joey where he was stranded. I knocked on my offi ce mates’ doors 

and was able to fi nd a shirt, sweat pants, and a jacket. When I 

reached the gas station bathroom and knocked on the door, Joey 


Positively Aware

was still crying soft ly. He opened the door a crack and I handed 

him the clothing. “I used to be somebody, Jeff ,” he whispered. “I 

used to be somebody.” 

Ken 1998 

A 42-year-old transplant to Chicago from New York City since 

1998, Ken described his time in New York as 

the best years of his life. He remembered an 

active social life, involvement in a 12-step 

recovery program for substance use, and a 

career as an emergency room nurse. Diagnosed 

with HIV in 1991, his health deteriorated 

rapidly with one opportunistic infection 

aft er another. He came to Chicago to 

make a fresh start, but quickly relapsed on 

multiple substances and processes (alcohol, 

narcotics, and sex). He came to see me initially 

because his nursing license had been suspended for writing 

false prescriptions to maintain his habit and he was mandated to 

see a therapist, among other activities, in order to lift the suspension. 

Ken had a small apartment on the north side of the city that he 

managed to keep due to a small inheritance from his parents. He 

was unable to work in nursing, however, because of his suspended 

license. His health also compromised his ability to maintain other 

steady employment. He subsidized his income with short-term 

temporary administrative jobs, many of which paid him in cash. 

“What’s the point anymore, Jeff ? None of my friends live in Chicago, 

and most of my friends from New York are dead. I don’t have 

any energy left ,” he shared with me in March of 2000, aft er being 

discharged from the hospital because of a bout with pneumonia. 

Mark 1996 

“I had to give my dog away,” Mark shared with me in our fi rst 

meeting in 1996. “I can’t even take care of her, let alone myself.” He 

stared at the fl oor and bounced his leg up and down as he waited for 

my response—and for the judgment he feared I would share with 

him. I quietly invited him to tell me more. 

Mark had left a successful position in real estate voluntarily. 

He was 45 years old at the time and had saved enough money to 

be unemployed for a short while as he explored alternative professions. 

Originally from a small town in Iowa, Mark had come to 

Chicago as a teenager who realized that he could not safely be gay 

in small town Iowa. He worked to put himself through college and 

was active in Chicago’s gay social scene of the 1970s. “Th at was an 

incredible time in my life,” Mark shared. “But it also resulted in 

alcoholism and HIV.” 

During the fi rst year of our work together, Mark exhausted the 

money he had saved and began doing temporary day labor as jobs 

arose. Eventually, his health deteriorated to the point of not being 

able to work at all and he applied for and began receiving disability 

payments. His body changed as a result of both HIV and the 

medications he was taking. Th e pride he once felt from his physical 

fi tness shift ed to shame as he described his weight gain, sunken 

cheeks, and areas of lipodystrophy. 

In 1999, I remember a session where I asked Mark to imagine 

what he would like his life to be like—to close his eyes and think 



about where he would live, the kind of job he would have, and what 

his social life would be like. “I can’t do that because it’s not possible 

anymore,” he said with resignation. With gentle prompting, 

he eventually shared: “I would live in a high-rise in Lincoln Park 

with views of the lake. I’d be working in real estate again and I’d 

feel hopeful. But I don’t think that’s going to happen, Jeff . It’s too 

late now.” 

Today, Joey is working 

as an attorney again. 

Joey, Ken, and Mark 2008 

Joey, Ken, and Mark did not believe they would be alive in 

2008. Or, if they were still alive, they thought their quality of life 

would be severely compromised. Th ey had resigned themselves to 

illness and our initial work together was more about acceptance 

than it was about hope, wellness, and the future. 

Today, Joey is working as an attorney again. He owns his own 

home on Chicago’s South Side. He has a small circle of close friends, 

and has connected with a large extended family with whom he 

spends a great deal of time. He walks and exercises regularly. He 

plays tennis occasionally. He loves music. He laughs a great deal. 

His health is still a concern, but when a health issue arises, he is 

quick to address it. 

Today, the suspension on Ken’s nursing license has been lift ed 

and he is once again working as an ER nurse. He has a renewed relationship 

with his sister and has forged a close relationship with a 

cousin whom he visits several times per year. He has also acquired a 

cat who he says greets him with anticipation upon his arrival home 

from work each day. He continues to have health problems, many 

of which are not a direct result of the HIV. And, he still hopes to 

increase his circle of friends in Chicago. Still, he says he is grateful 

for what he has and for how far he has come. 

Today, Mark lives on Lake Shore Drive in a high-rise facing 

Lake Michigan. He works full time in real estate and recently was 

promoted to manage an offi ce on the north side of Chicago. He has 

been sober for over 20 years and has a strong connection to the 

recovery community. In addition to having his own sponsor, he has 

three individuals whom he sponsors. He exercises three times per 

week and has lost 20 pounds. Mark has also invested considerable 

energy in his emotional and spiritual growth, attending a number 

of weekend workshops and retreats. He remains dissatisfi ed with 

the eff ects medications have had on his body (in combination with 

the eff ects of aging), but says he fi nds himself feeling hopeful more 

oft en than not. 

Joey, Ken, and Mark, however, are not alone in this journey. 

Many men, women, and children diagnosed with HIV 10, 15, or 20 

years ago were not expected to live long, let alone live with hopefulness 

and an attention to wellness. Certainly advances in medication 

and other interventions have played a major role in living “well” 

with HIV. Th ere are other critical ingredients—listed below—to 

41

the lives Joey, Ken, Mark and similar others have created for themselves. 

Relationships 

Th e power of relationships has been a healing force for each of 

the men discussed above and remains a healing force for all of us. 

Tapping into the power that comes from connection with others is 

a key ingredient to wellness. Of course physical health infl uences 

a desire to connect with others, but reaching out to others and, in 

turn, having others reach out to us creates a powerful synergy that 

contributes to a sense of purpose and well-being. 

Courage 

It is no small feat to face imminent death, feel resigned to this 

destiny, yet swift ly turn on your heels and walk in a diff erent direction. 

Th e process of rebuilding a life, in many ways, takes more 

courage than the initial building. Each of us, when faced with an 

obstacle, has the choice to become resigned, or to learn and grow. 

Long-term survivors of HIV such as Joey, Ken, and Mark allowed 

themselves to be transformed from their experiences and courageously 

chose to rebuild lives of meaning and purpose. 

Humor 

Given the stories of long-term survivors of HIV like Joey, Ken, 

and Mark, it seems diffi cult to even consider humor an ingredient 

of wellness. And yet, I remember many instances of laughter even 

as each man shared incredibly painful and embarrassing experiences. 

Joey will consistently share with me his family’s hardships, 

economic problems, and illnesses, but through the pain, he is able 

to make small jokes and sometimes, even chuckle. And now, several 

years later as he recounts the incident of me rushing clothes to him 

at the gas station restroom, he grins at me and chides: “Couldn’t 

you have at least brought me some socks?” 

Morality 

While each person’s sense of what is right and what is wrong 

may be diff erent, the idea of having a sense of right and a sense of 

wrong serves as a foundation for all of us. Long-term survivors of 

HIV are constantly faced with others’ judgments, their own feelings 

about their HIV status, and making decisions about self-care and 

risk. Th ere are no clear “rights and wrongs” in this world, which 

requires that each person have some internal mechanism for recalibrating 

this process in response to constantly changing physical 

health. 

Spirituality 

None of the men I’ve described here would consider themselves 

religious, in the traditional sense of this word. But all of them, at 

this point in their lives, would say that spirituality plays a major role 

42 

Long-term survivors of HIV face 

innumerable challenges. 

in how they currently live. Each has found a way to connect with 

some force that is greater than themselves. Ken’s relationship with 

his cat is a nontraditional example as, for him, his cat represents 

a connection to all living things and some source of energy and 

“spirit” larger than his own. Joey has created this sense of connection 

with extended family, and Mark taps into “spirit” through AA 

and prayer. Regardless of the source, a belief in and connection to a 

source of energy beyond ourselves is a great source of wellness. 

Living well 

Long-term survivors of HIV face innumerable challenges. In 

many instances, the medical challenges of living with the eff ects of 

HIV take a back seat to the emotional and psychological challenges 

of dealing with impending death. For those people who have spent 

years preparing to die, fi nances have been exhausted, careers have 

been compromised, and loved ones have died or moved on in other 

ways. Th e prospect of continuing to live may become a frightening 

one, fraught with existential questions about fi nding purpose and 

meaning—and a process of dealing with both tangible and intangible 

losses. Wellness takes on a new and diff erent meaning for longterm 

survivors who are now looking at living indefi nitely. While 

still comprised of what we traditionally 

consider wellness activities (healthy eating, 

exercise, entertainment, work-life balance, 

and other forms of self-care), wellness with 

long-term survivors is equally comprised of 

meaning-making and purpose-fi nding. 

I didn’t think that I would be using the 

word “wellness” in referring to long-term 

survivors of HIV, and yet here I am, discussing 

three people, each of whom have lived 

with HIV for close to 20 years. Advances 

in medicine have contributed to living with HIV, but attending to 

“wellness” with HIV is the task of each individual who chooses to 

live well. In a recent session with Joey, he ended as he has on many 

occasions: “Well, Jeff , it looks like I’m going to live.” 

Yes, Joey, it looks like you’re going to live—and it looks like 

you’re going to live well. e 

Joey, Ken, and Mark are composites of some of the long-term 

survivors of HIV with whom I have worked. Th eir names are not 

act ual client names and their st ories have been const ruct ed from the 

common challenges faced by long-term survivors of HIV. 

Jeff Levy, LCSW, is a psychotherapist and the Chief Executive 

Offi cer of Live Oak, Inc. in Chicago’s Lakeview neighborhood. Live 

Oak provides psychotherapy, consultation, and professional training. 

To learn more, visit www.liveoakchicago.com. 

*from Merriam-Webst er Dict ionary Online. 


Positively Aware

Photos by Ron Baker 

Spotlight on Houston Buyers Club 

Club founder Fred 

Walters, Jr. talks about 

the history of HBC 

and the importance 

of nutritional 

supplements 

Interview by Jeff Berry 

Jeff Berry: Could you tell me a little 

bit about yourself and how the 

buyers club came to be about? 

Fred Walters, Jr.: I come from a very 

conservative Catholic background. I was 

studying at the University of St. Mary of 

the Lake Seminary in Mundelein [Illinois] 

where I began pursuing my lifelong 

dream of becoming a priest. In my second 

or third year, I started realizing I had feelings 

for other men and did not know how 

to deal with it, much less reconcile those 

beliefs with the church’s beliefs. When I 

decided to start dealing with those issues, 

along with those issues came a lot of fear, 

because there were still seminarians who 

were literally disappearing in the middle 

of the night. In other words, they got 

caught being active in their lifestyle and 

then they disappeared. 

In order to deal with my newfound gayness, 

I decided to move to Houston, and 

figure this out away from home, which 

is Tennessee—I’m from Memphis—so I 

wouldn’t embarrass my faith community 

or my family. A short while after I was here 

I was trying to figure out what I wanted to 

do with my life. I still hadn’t discovered 

I was positive yet and got involved in an 

AIDS organization, the People with AIDS 

Coalition, as a warehouse organizer. We 



go around and pick up donations much 

like the Salvation Army does, and distribute 

them to people who had been kicked 

out of their homes because their families 

found out they were HIV-positive. 

I was in charge of that program, and 

then I became the case management assistant. 

While I was in that position a 

fax came across and it was on a wellness 

workshop that was going to be given by 

Nelson Vergel. I hung it up on the bulletin 

board and I was reading it and it said, 

“Learn how to survive until there’s a cure 

by incorporating exercise and nutrition 

into your life.” At some point during that 

time I realized that I was positive, before 

the workshop happened. I did all the crazy 

things. Contemplate suicide. Get ready to 

bequeath my belongings. Realize I’d never 

have a good relationship. All kinds of crap 

goes through your head, feeling betrayed 

by God. That time in my life was very embarrassing, 

but I went through it. Plus my 

whole support system was in Tennessee. I 

really didn’t have any friends here except 

for one. So I went to this workshop given 

by Nelson and he had a list of supplements 

that he put on the screen that indicated 

that you would have a really good 

chance of living through HIV until a cure 

was found. And except for the basics of 

vitamin E, vitamin B, vitamin C, etc., I’ve 

never heard of any of these supplements— 

Coenzyme Q10, alpha lipoic acid, NAC 

(N-Acetyl Cysteine), Chinese herbs I’ve 

never heard of and still can’t pronounce. 

JB: [Laughs.] 

FW: A friend of mine and I went out to 

a local health food store and we got some 

help trying to navigate our way through 

the confusing maze of supplements, and 

we got to the counter and the clerk said 

that would be two hundred and fortynine 

dollars. And I looked up because I 

knew she wasn’t talking to me and it was 

like six bottles in front of me, but I wrote 

the check. I thought, I guess I’m going to 

have to ask my best friend to help cover 

this check, and I left that store fuming 

mad, my face was hot from the heat. I remember 

that distinctly. I got back to the 

office and I called Nelson Vergel and I 

said, what did you say about a buyers club? 

Did you say there was a place in New York 

[New York Buyers Club, still in existence] 

where we could get these supplements 

cheaply? He said yeah, why don’t we talk 

about that? So Nelson Vergel, Allen Huff, 

Joel Martinez, who is now deceased, and 

James Alexander—a huge body builder— 

we all met for coffee at a local coffeehouse 

43

and I told them, “Nelson has this really 

great information that we need to make 

more public and we need to help people 

access these supplements. This was my 

experience.” 

I sat down with them and they said 

great, I think that’s a great idea. I said, 

I’ve never run a business before. I have 

dreams of running a coffeehouse one day 

but I don’t really know anything about 

this stuff. They all helped push me along 

the maze, so to speak, and gave me support 

and helped me out because I didn’t 

know anything about protein powder, 

what brands were good, how much protein 

should be in a serving. I kept my day 

job, and I was providing six nutritional 

supplements to six people. They were the 

basic multivitamins, vitamin E, vitamin 

C, protein powder, and maybe one or two 

other ones. Maybe NAC was part of them? 

And if a bottle of NAC cost 10 dollars, it 

was sold for 10. And I kept these supplements 

on a shelf in my closet at home. 

Pretty soon I realized that I wanted to 

fulfill my lifelong dream of roasting coffee 

or selling coffee beans. It was a real 

small idea. I got a thousand dollars from 

some friends to start, and with that money 

I bought a credit card machine and coffee 

beans. Well, what ended up happening is 

I developed a very small but loyal group of 

people who loved coffee beans within 48 

hours of roasting. And I was also helping 

people gain access to nutritional supplements. 

But the drive for the nutritional 

supplements from people living with HIV 

very quickly overpowered all my coffeeloving 

friends. I decided I would have to 

give up the coffee because I was already 

working 70 hours a week taking orders for 

coffee, roasting it, delivering it, still doing 

the nutritional supplements, delivering 

those, running credit cards, and I just 

couldn’t do it. At that time Starbucks was 

just moving to town and you know, there’s 

not a buyers club within four states of 

Texas but we’re going to have a Starbucks 

44 

every quarter mile. So I decided to let the 

coffee business go. 

JB: You said that time in your life was 

embarrassing? Could you elaborate 

on that? 

FW: I was dealing with being gay and 

then on top of that now being HIV-positive. 

When I said it was embarrassing for 

me, it was embarrassing number one, that 

people would find out I was positive and/ 

or gay. But I think the embarrassing part 

for me—the heart of it—here I was this 

educated individual and now I was contemplating 

thoughts of suicide because 

of the HIV. So my life was over … those 

kinds of very negative thoughts that occur 

when the community has not yet dealt 

We’re saying to people, “Here’s 

a good range, a therapeutic dose 

range that should be helpful to 

you with this condition.” 

with the issue. I felt like I had the scarlet 

letter on my chest. So here I was dealing 

with a hard enough issue, being gay, and 

then on top of that I have to deal with being 

HIV-positive. And that was hard. 

JB: Yeah. And then you founded—it’s 

called the Houston Buyers Club but 

it has a different name? 

FW: Our legal name is Program for 

Side Effect Management. We started 

unofficially in 1996, but officially recognized 

by the IRS, I think, in 2002. 

JB: So how many clients do you serve? 

FW: We don’t take federal money so 

we’re not required to keep client demographics. 

We don’t get the indigent or 

destitute population coming through because 

the funding isn’t here. If I had to tell 

you the number of clients—every year we 

serve about 2,000 individuals. And that 

is ranging from HIV to hepatitis B and C, 

cancer, and diabetes. 

JB: So what other kind of services do 

you provide? Do you have speakers 

programs? 

FW: Yes, we have this program that is 

community-centered. We’ll bring in pro- 

fessional speakers to speak on HIV side 

effects, or hepatitis B and C, or diabetes. 

We found this wonderful man to underwrite 

the filming costs associated with 

these events. There’s this company that 

we got to film our events, called Cool Arrow 

Films. They film not just the speakers, 

like Lark Lands, Jon Kaiser, or Nelson 

Vergel, but they also interview the people 

attending the conference, and make it fun 

to watch. 

The other thing that we’re going to 

pursue is the Discovery Health Network, 

because the information that we’re doing 

is not just going to be about HIV. It’s 

going to be about hepatitis, and diabetes. 

We don’t ever hear people talking about 

milligrams when it comes to nutritional 

l to r: Ricky O’Neill and Fred Walters, Jr. 

supplements. They don’t ever talk about 

amounts. They just mention the supplements 

and the herbs. No one is putting— 

I hate to say this—their balls on the line 

and giving the ranges and dosing. And we 

are. 

So what they do with these other programs 

is teasing these people with really 

great solutions and hope, but they’re 

leaving them in the dark. So they’re left 

with going into the health food store with 

people who may not know anything about 

chronic illness, and whoever they happen 

to get on the sales floor is who they get 

stuck with. Here’s a good example. Physicians 

all the time will tell their patients, 

“Go out to the store and get some fish oils, 

and that will keep your cholesterol under 

control.” Physicians who do that do their 

patients a disservice because they should 

be saying, “Your triglycerides are 50 points 

out of range and I think 2,000 mg a day of 

fish oils could help. Go and buy these at 

a health food store, and I’m giving you a 

prescription.” Instead, they’re doing like 

all these other shows are doing. They’re 

not giving specifics. We are. We’re saying 

to people, “Here’s a good range, a thera- 



Photos by Ron Baker

peutic dose range that should be helpful 

to you with this condition.” So that’s the 

purpose of these programs. To give people 

specific information about chronic 

disease, side effect management when it 

comes to using traditional supplements. 

That’s our main outreach that we do. 

JB: Do you have a mail order service 

for people like me who live outside of 

Texas? 

FW: We do, www.houstonbuyersclub. 

com. We ship pretty much everywhere. 

JB: If you had to list the top five 

supplements for people with HIV, 

what would they be? 

FW: I would say number one, a potent 

multivitamin. The top mistake people 

make with multivitamins is they are hypnotized 

by the words “one-a-day.” And 

there is no such thing as a potent one-aday 

multivitamin for people with HIV. 

If you’re going to do a multivitamin you 

have to do several, several times a day. My 

favorites are Superblend by Super Nutrition 

and the K-Pax [KaiserPax] by Jon 

Kaiser [M.D., an HIV specialist in San 

Francisco]. Those are my two favorites. 

The second thing I would do is NAC, and 

that is a supplement that helps to increase 

gluthathione levels. It’s very good for the 

liver. The third one is fish oils, even if you 

don’t have high cholesterol or high triglycerides. 

Fish oils are real important for 

skin and other things in the body. They 

help reduce inflammation. That’s probably 

my biggest thing, the inflammation 

part. The other would be if you’re taking a 

high potent multivitamin you should add 

the selenium, but a lot of our HIV diets 

don’t take the recommended amount of 

multis. Those are the top three. 

If people are taking HIV drugs they 

have to take Coenzyme Q10, because 

what happens is that the drugs go into 

the body, as they’re winding their way 

through the cave with their guns drawn 

waiting to shoot at the HIV viral cells, by 

the time they walk up to a dead body they 

say, “Oh no, that wasn’t an HIV viral cell. 

That was a mitochondria.” And so Q10 

helps to protect the mitochondria, and if 

you don’t protect the mitochondria in the 

body then you start opening yourself up 

to all kinds of organ and liver issues. 

“Oh, how could I forgot this one. You 

know what we’re seeing a lot of, Jeff, and 

you’re not going to believe this. Actually 



it’s getting a lot of press locally because 

Baylor University is studying this, but… 

green tea capsules. We are seeing more 

and more people who are doing two 

grams a day of green tea capsules and 

their T-cells are going up between 40 and 

100%. Dr. Christina L. Nance is studying 

that at Baylor and we see that here, and 

today I was watching a local television 

show and of all days for you to call, there 

was a show on about food as medicine and 

they talked a lot about HIV, and one of 

the things they talked about was green tea 

liquid. They mentioned that it was being 

studied locally for HIV. So we’re not the 

only one on the soapbox about this. We’ve 

seen amazing results with that. 

JB: Could you give me some numbers 

for dosage? 

FW: Oh, yeah. NAC is a 500 mg tablet 

and people take anywhere between a 

1,000 and 3,000 mg a day. If you’re taking 

HIV meds, take two grams twice daily of 

fish oil. 

JB: Any specific kind? 

FW: Yeah, I’m so glad you asked. Always 

make sure it says filtered against PCB 

and heavy metal. There’s a lot of that in 

fish and you want to make sure it’s filtered 

properly. And the second thing is, don’t buy 

your fish oils in a non-health food store 

environment. And the reason I say this is 

because in these warehouse retail places, 

the fish oil labels that are on the bottles 

are misleading to people with HIV. A lot 

of times they would put “serving size—two 

gel caps,” and most people read the label 

and they assume it’s one gel cap. So you’re 

thinking you’re getting 2,000 mg of fish oil 

in one gel cap and you’re not. The second 

thing they’re doing is… a quality fish oil 

will have broken down the two major ingredients 

in a fish oil, which are known 

as EPA and DHA. A quality health food 

store like Whole Foods or Houston Buyers 

Club will only stock brands that have those 

broken out. Warehouse and chain store 

pharmacies don’t. And so people with HIV 

are not getting the right dosage unless they 

know how to read a label. They are not getting 

as good as they should be getting. 

For the Q10, anywhere between 100– 

300 mg a day. The reason why the range is 

so wide on that is that it is the most expensive 

supplement on the market and some 

people can only afford to take a hundred 

milligrams. 

JB: Are there resources for people to 

help them pay for supplements? 

FW: Well, we have a very limited program, 

but for most people it would be either 

local Ryan White programs, which 

are places like AIDS Foundation Houston, 

and some other clinics. [Editor’s 

note: Houston Buyers Club has a program 

that offers free supplements to individuals 

who qualify, based on donations they 

receive from manufacturers. Visit www. 

huostonbuyerclub.com, click “Programs,” 

then click “Ellen’s Hand.”] 

JB: Why have you remained successful 

while some of the other buyers clubs 

have shut down over the years? 

FW: I think for two main reasons. 

Number one, most people in charge of 

buyers clubs did not know it was going to 

grow like it did and so most people, whenever 

they start a non-profit, they start it 

from a mission of heart, and they give the 

store away. If you can’t afford it, they give 

it to you. And unless you have a steady 

stream of funding in place—that’s what 

I’ve seen happen. I have to say we were 

lucky because we had a royal bitch and I 

say that tongue-in-cheek because she was 

really a good friend. She was a bitch to me 

and said, “If you give the store away today 

you will not be here tomorrow. No! You 

may not give this away to so-and-so. You 

will charge them a reduction in price, but 

you will not give this away.” And so I relied 

on her gut and her counsel a lot and 

to be honest, if I had not relied on her we 

may not be here today. 

JB: Would that be Ellen? 

FW: Yes! Ellen. [Editor’s note: Read 

more about Ellen in “Facing Up to It,” November/December 

2004.] 

The other reason was that we did something 

different that I don’t think anyone 

else has done yet. We had an opportunity 

to jump to a retail space in a retail center 

and that’s what saved our ass. We got the 

general public to come in here and start 

shopping, so it would support our programs. 

We went from one thousand dollar 

days to three or four thousand dollar days. 

So that’s what helped. 

By the time this goes to press, all of our 

[information on how to deal with] side effects 

should be online—Lark Lands put 

them together. e 

45

A 

Personal Story 

I was asked to write a biography for a social group where I am a 

member. I chose inst ead to write or reveal a portion of my life because 

this is where I am now today. I can tell you about my work hist ory, 

my politics, my beliefs, and many other things, but this is what I felt 

was most relevant and most important. 

It was May 1, 1974. Joe and I meet at an Indianapolis bar called 

the Déjà Vu. We spent the next seven days together not knowing 

our lives would become as one for the next 29 years. Th ere was a 

book title then, Seven Days in May, that was oft en referenced somewhat 

jokingly when we told people how and when we met and about 

our fi rst week together. Th ose were the early days, the happy, carefree 

days. Joe and I dated by telephone and long distance for several 

months before moving in together in Washington, D.C. Aft er two 

years, we relocated to Joe’s home city, Indianapolis. Th at was 1977. 

Our relationship was a whirlwind of activities, building lives 

and careers. We had fi ft h, seventh and tenth anniversary parties. 

But on Th anksgiving morning 1987, Joe’s 16 year-old son, an only 

child, was killed in an automobile accident. My, how our lives 

changed. Talk about searching for answers, a raison d’être, well, 

there wasn’t one. Joe’s life, and therefore, my life, was turned upside 

down. Yes, there was grief therapy; there was this church and that 

church, counseling, every conceivable eff ort to put things back 

the way they were, but like Humpty Dumpty, the pieces just never 

seemed to go back together again. Aft erwards, Joe’s best friend died 

of AIDS, my best friend from my years in Washington died of AIDS, 

our parents, his and mine, died, but our lives continued and our 

relationship seemed strong. I thought that we had survived all of 

46 

Learning to live and love, all over again 

by Kim Johnson 

these tragedies and I thought to myself that we had become great 

role models. 

Denial 

Fast forward to 2002. We were not really role models at all. We 

were like everyone else, gay or straight. We were just wrapped up in 

our lives and somewhat oblivious to so many things. I went along 

with Joe who did not want to be tested for HIV because he did not 

want to know. He didn’t want me to be tested either because he did 

not want to know that either. We had not kept up on the advances 

of treatment and only believed that, if diagnosed, we would die horrible, 

stigmatized deaths like so many of our friends. Even though 

we both suspected we had AIDS (we never considered being HIVpositive 

as that was just a synonym for AIDS), we convinced ourselves 

we were better off not knowing for sure. Why? Because, in 

our deepest fears, we knew the answer. We came out in a sexually 

charged era and we were sexually active and not monogamous. We 

believed AIDS was a death sentence and there was nothing one 

could do about it. 

My story is not unique. I became very sick with one problem 

aft er another. I secretly sought an anonymous HIV test that came 

back inconclusive. Shingles, panic attacks, electrolytes severely 

depleted, thrush, coughing, shortness of breath, no sense of taste, 

exaggerated sense of smell, can’t eat, can’t drink, a “type” of pneumonia, 

weight loss, other problems and ailments with long names, 

trips to the emergency room, then hospitalization and another HIV 

test, and fi nally, reality on September 21, 2002. Th e test results are 

confi rmed. Mr. Johnson, you have AIDS. My God, I almost felt 

relief at that point since I had already “known” the answer and I 



Photo courtesy of Kim Johnson

felt prepared. Little did I know that Joe also knew the answer and 

that he, too, was prepared. I asked my new and very brilliant infectious 

disease specialist to talk to Joe. He talked with him for at least 

an hour. I was in the hospital bed listening as Dr. Kaul explained to 

Joe how I would live a normal life span, if only I would strictly and 

faithfully adhere to the drug regimen he was going to put me on. 

As Dr. Kaul talked to Joe and explained things in such a compassionate 

way, I cried for the fi rst time. I sensed such emotional relief. 

I believed that Joe and I would get help together. 

Facing Death 

Honestly, I never thought about dying. Everyone else subsequently 

told me they did not expect me to leave the hospital, but I 

did. I had to leave not because I was well, but because I had to attend 

Joe’s funeral. Th e next morning, Joe took his own life. I can only 

rationalize he did not want to be left alone as I was his only relative 

and his “glue” that held his life together. He was so wrong in his 

assumption. Joe arranged for my brother, Bill, and his wife, Patti, 

to be in my hospital room when I learned Joe was dead. Yes, Joe had 

been well prepared for the diagnosis and he orchestrated quite a 

lengthy list of extraordinary events just hours before he died. Th ese 

events will have to wait for another day (maybe a book). 

Many, many things have happened to me since September 22, 

2002. I buried a partner. I grieved. I began to see doctors. I have 

seen most of them, infectious disease specialists, otolaryngologists, 

internists, gastroenterologists, dermatologists, oncology/hematologists, 

orthopedic oncologists, neurologists. I have learned everything 

I possibly can about HIV/AIDS. Bill and Patti, my friends 

who know and my friends who do not have all been supportive. But, 

none of this meant nearly as much to me as what happened January 

1, 2004. Th anks to my Rio Rancho, New Mexico friends, Bill and 

Tony, I was persuaded to cut short my Christmas visit with Bill 

and Patti in Tulsa, Oklahoma. Th ey convinced me that I needed to 

come to New Mexico for a New Year’s Day brunch. I said I couldn’t. 

Th ey said I could. Th ey said we’ll pay your way to fl y from Tulsa to 

Albuquerque and back to Tulsa to resume your Christmas visit in a 

few days. I thought, no one ever made such a generous off er to me, 

and so I went. 

A New Love 

As fate would have it, at that brunch on January 1st, I met John, 

an extraordinary man. We clicked, but I had a secret. We spent 

all of that day and the next day together. Th ere was a sad goodbye 

on the second. I went back to Tulsa. I called John a few days later 

from the airport in Chicago and we talked. We talked every day 

for the next month or so. I invited John out to Indianapolis for a 

visit. He agreed he would come. I was excited, but then I started 

to worry about whether to disclose or not disclose my HIV/AIDS 

status. I worried myself sick. I was not prepared for disappointment 

or rejection. I talked to Bill and Tony. I fi nally decided that I must 

disclose so I sent John an e-mail saying don’t book your fl ight to 

Indianapolis until we can talk. John went to a conference room 

where he worked and we talked on the phone. I reluctantly told 

John that I was HIV-positive. John said, but what do we need to 

talk about that is so important. I asked, did you hear what I said? I 

am HIV-positive, in fact, I have AIDS. John simply said he assumed 

everyone in the gay community probably was and that he was welleducated 

about the virus and how it is and is not spread. He said it is 

a non-issue. He was in no way judgmental. I was fl abbergasted, but 



I know much more than I ever 

thought I would about HIV/AIDS 

and HIV meds. I want to share 

my ex perience with anyone wh o 

may be strugg ling with concerns 

about HIV/AIDS. 

47

elieved that he was totally understanding. We have talked every 

day since that fearful day. Aft er many trips back and forth between 

Albuquerque and Indianapolis, John and I decided it was time to 

go to the next step. 

A New Life 

As fate would have it again, everything just fell into place. In 

May, John completed a degree he was working toward and gave 

notice at his employer he was resigning. Concurrently, he started 

to get his Nob Hill (Albuquerque) home ready for sale, but it never 

made it to market. While building an entrance garden arbor for his 

home, an acquaintance stopped by and said I heard you might be 

selling your house. John said I haven’t listed it because it will take 

two or three months to get the house ready to sell. Bob, the acquaintance, 

said I want to buy the house now. Paul and I will come by on 

the weekend to fi nalize an agreement if that’s okay. John thought he 

might be kidding, but the deal closed 10 days later and, as a bonus, 

John got to stay in the house, at no cost, through June. 

I fl ew out in June, we fi nished an irrigation system and some 

landscaping, packed a Budget Truck and drove the 1,300 or so miles 

from Albuquerque to Indianapolis. Aft er driving for four days, we 

pulled into our home in Indianapolis to balloons on the mailbox 

compliments of our friends and neighbors, Chuck and Ken. A group 

of friends unpacked the truck, returned the truck to Budget, and all 

of us sat down for dinner at the Tuscany Grill restaurant. 

John and I are a “magnetic couple” or “discordant couple,” 

meaning that I am HIV-positive and he is HIV-negative. Th e disease 

is a fact, but it does not defi ne either of us; yet I am now a very 

serious activist in the HIV/AIDS community. I am on the Client 

Service Committee at the Damien Center; I have visited other AIDS 

service organizations (ASOs) and plan to visit as many as possible. 

John joins me at a dinner function twice a month where HIV infected 

and aff ected people socialize with absolutely no stigma, but with 

a strong mutual understanding and respect for what brought us 

together and where we’ve been in the history and process of this 

disease. 

Awareness 

HIV/AIDS is still incurable. It is sometimes manageable 

through a combination of toxic and near-toxic medications that are 

lifesaving. Sometimes one wonders whether the side eff ects from 

the drugs are worse than the disease; however, being realistic, we 

know the drugs were fast-tracked by the FDA to save lives. For me, 

so far, so good. 

Today I am 63 years old and I feel good most of the time. I 

am an advocate for prevention, testing, and medical treatment. 

Unfortunately, I was diagnosed late in the course of HIV disease 

so I struggle to get my CD4 (T-cells) into a normal range, but while 

immunologically compromised, I am virologically doing exceptionally 

well. My viral load has been undetectable since February 

48 

Hones tly, I never thought about dying. 

2003. I know much more than I ever thought I would about HIV/ 

AIDS and HIV meds. I want to share my experience with anyone 

who may be struggling with concerns about HIV/AIDS. Anyone 

who can benefi t from my experience needs to know that there is 

help available and they can talk about their questions, fears, and 

hopes in a safe environment. It took me a long time and a lot of 

money and heartache to understand that there is help regardless 

of your situation, station in life, or your fi nancial means. When 

John came into my life, my life changed. John gave me a new inner 

strength, courage, honesty, and openness to face life’s adversities. 

His love has been empowering and refreshing. 

My mission now is to be more open (yes, there is some risk to 

that), and to get the message about HIV/AIDS out so that people 

know everything they possibly can about the disease so that they 

can obtain services. I serve on the newly formed Ryan White Planning 

Council for the Metropolitan Indianapolis Area. We are one 

of only fi ve new Transitional Grant Areas (TGAs) with the responsibility 

for determining how our TGA allocates its Part A funding 

to each service category. A TGA is comprised of those cities and 

counties hit hardest by the HIV/AIDS epidemic. Planning Council 

duties include setting priorities and allocating funds for services 

based on the size and demographics of the HIV population and the 

needs of the population. Particular attention is given to those who 

know their HIV status but are not in care. Planning Councils are 

also required to develop a comprehensive plan for the provision of 

services that includes strategies for identifying 

HIV-positive persons not in care, and 

strategies for coordinating services to be 

funded with existing prevention and substance 

abuse treatment services. 

The Ryan White Planning Council 

membership must reflect the local epidemic 

and include members who have specifi 

c expertise, such as health care planning, 

housing for the homeless, incarcerated populations, and substance 

abuse and mental health treatment, or who represent other Ryan 

White CARE Act and Federal programs. At least 33% of our members 

must be people living with HIV (PLWH) who are “unaffi liated” 

consumers of CARE Act services. 

As a planning council, we identify and assess needs, set priorities 

and direct the grantee to issue Requests for Proposals (RFPs) 

so that the needs of the HIV/AIDS community are met. If one is 

insured, uninsured, or underinsured and believes they or someone 

they know needs HIV/AIDS services of any description, I would 

like to off er some guidance in knowing, from my own experience, 

what is available. In addition, I want to see that the Planning 

Council hears those needs and concerns as we decide on delivery 

of services. I assure you that anything I am told about any health 

matter will always remain confi dential. Trust and confi dentiality 

are essential to good communication. e 

Kim Johnson was the youngest of two boys who grew up in a 

small town in south Alabama. He graduated from Auburn University, 

attended Law School at the University of Alabama, and from the 

age of nine was involved in politics of some kind. Kim st ill dabbles in 

his executive recruiting fi rm in Indianapolis, which is in its 14th year. 

Hobbies continue to include politics, pets, and travel. Kim and his 

partner John live in a 150-year old remodeled barn house in Indianapolis. 

E-mail Kim at jkjohnson7420@comcast .net 


Positively Aware

Comparing Two Integrase Inhibitors 

The fi rst head-to-head study comparing raltegravir and elvitegravir 

by Daniel S. Berger, M.D. 

It was more than a wish that integrase inhibitors became weaponry 

against HIV. We’ve waited a long time to get to this point 

and an even longer time to arrive at the position where we’re 

now studying and comparing two integrase inhibitors. Elvitegravir 

(GS9137), Gilead Sciences’ compound, and raltegravir (Isentress, 

MK0518), the Merck agent, are going head-to-head in a monumental 

study being conducted at many sites around the world. 

It is now fairly obvious to most that treatment of HIV infection 

has undergone a seismic change. We’ve witnessed this transformation 

during the last year as the smorgasbord of diff erent agents 

within diff ering classes became unveiled at the clinic. Also as never 

before, we are now armed with the tools to get nearly most infected 

individuals to undetectable levels of virus in their bloodstream. 

Th is is accomplishable even in patients with exposure and resistance 

to the traditional three classes of HIV drugs. Integrase inhibitors 

are from a new class, and have seen their fi rst drug, Isentress, 

make it into the clinic. Isentress is not just “another drug.” Unlike 

new sleeping pills, stomach antacids, or allergy medicine with their 

usual fanfare of television commercials and magazine ads, which 

are all usually a big yawn, the integrase inhibitors have been nothing 

short of historic, exciting, and mammoth in scope. 

Science as art 

As a truly novel viral target, we can combine integrase inhibitors 

(INIs) with other drugs. As an entirely new class, patients with 

any degree of resistance to other classes or failing their regimens 

are expected to be able to take full advantage of this new group 

of drugs, so long as they’re combined with other active antiviral 

agents. Also unique, there is no human homologue or enzyme 

counterpart of HIV integrase that exists within human cells, so 

integrase inhibitors are not expected to have toxicities to human 

cells. And they don’t interfere with other drugs nor are they antagonistic. 

INIs have been shown to have additive eff ects on suppressing 

virus; they’re synergistic with other antivirals of other classes. In 

short, integrase inhibitors have a central role in interrupting the 

life cycle of HIV, and with all their attributes make for a very sexy 

treatment option. 

Integrase inhibitors work by inhibiting an HIV enzyme (integrase) 

responsible for HIV becoming incorporated within the 

human gene. Speaking about the virus, HIV integrase is made up 

of three areas or domains. A central segment is called the catalytic 

core, an important part of its domain having properties that 

enabled the discovery of targets or antiviral integrase inhibitors 

that can have a major impact on the life cycle of HIV. Th e catalytic 

core is also the site where antiviral resistance is born. Additionally 

and mechanistically, integrase inhibitors act on the strand-transfer 

point or the last instant whereby the cell becomes “productively 

infected” and by which the virus inserts viral DNA into host 



The Buzz 

genome. Th e actual process involves a large complex of proteins 

and cellular factors that result in an integrated provirus particle. 

Both integrase inhibitors have structural features in common. 

Merck’s and Gilead’s integrase inhibitor, in addition to GlaxoSmith- 

Kline’s early phase compound, GSK 364735, all have a bulky hydrophilic 

group which helps anchor the drug at the active site. 

Previous studies 

Data from the Phase 2 study of elvitegravir (EVG) was 

presented last year at both CROI and ICAAC. Th is Phase 2 study 

began as a randomized, partially blinded, dose-fi nding study with 

four arms. Th e design of the trial included three integrase inhibitor 

arms each studying a diff erent dose of EVG plus one protease 

inhibitor (PI)-containing control arm. As traditional for salvage 

studies, the patients were required to have triple-class resistance 

and each participant knew whether they were in an integrase inhibitor 

treatment arm, but not what dose they were taking. Nukes and 

+/- Fuzeon could be part of the backbone. Th e varying doses were 

20, 50, and 125 mg, all boosted by ritonavir (Norvir). 

Th e study began with EVG-treated patients not being permitted 

to take a PI in combination. Th is was due to lack of drug-drug 

interaction data for EVG with PIs at that time. At week 16, however, 

as more information became available, subjects were allowed a PI 

and the 20 mg dose was stopped due to the emerging demonstration 

of inferiority of that specifi c dose. Th e individuals on 20 mg 

were all off ered 125 mg open label. An additional change in light of 

knowledge of drug interactions, darunavir (Prezista) or tipranavir 

(Aptivus) were also allowed to be added in the integrase inhibitor 

arms. While these changes were good for patients and is sometimes 

the natural course in early studies, it confounded the data, as the 

study design was changed midstream. Th us, the only way to honestly 

look at elvitegravir’s eff ect was during the fi rst 16 weeks and 

at the 125 mg dose. 

Th e results were as follows: a signifi cant 1.7 log drop in HIV 

RNA (viral load) was seen overall, but an even more dramatic 2.5 

log drop was observed with fi rst use of Fuzeon (T-20) as part of the 

HAART (highly active antiretroviral therapy) regimen, highlighting 

the importance of having other active drugs. Th e actual change 

of Fuzeon when used for fi rst time with EVG at the 125 mg dose 

was seen as quickly as the beginning of week 2, showing a staggering 

–2.9 log drop which persisted though the end of the study. Also, 

25% of the control arm achieved viral loads to undetectable or less 

than 50 copies, versus 74% in the 125 mg dosing arm of EVG. 16 

week data of the other integrase inhibitor, raltegravir, when used 

with T-20 for the fi rst time was very comparable: 72% had less 50 

copies. Background therapy always contributes greatly to virologic 

success, and so notably, as the study design changed and darunavir 

49

The Buzz continued 

and tipranavir were allowed to be added, there were more declines 

in viral load. 

At the time of this writing, the current issue of the New England 

Journal of Medicine (July 24, 2008) reported the fi ndings of 

treatment with raltegravir (RLV) in a combined analysis of both 

Benchmark studies, which looked at treatment-experienced 

patients. Also common to the Gilead study, only patients who were 

resistant to three classes of HIV drugs were included. Overall the 

results showed a caliber of viral suppression being among the best 

ever seen for patients with triple-class resistance. At week 16, the 

combined analysis of both studies showed 72% of patients on raltegravir 

achieved viral loads below 400 copies, compared with 37% 

in the control group. Also at week 48, 62% of patients treated with 

RLV achieved a level of HIV-RNA to below 50 copies, compared 

with 33% in the placebo arm. It’s worth noting that when patients 

were also treated with either darunavir (Prezista) or enfurvitide 

(Fuzeon), or both, the rates of HIV suppression were even greater. 

Although the rates of side eff ects and adverse events were 

low during the 48 weeks of RLV treatment, part of the journal’s 

article was devoted to the issue of new malignancies and cancers 

seen in the raltegravir group. Cancer in this study was seen early 

during the trial (average time of diagnosis was at 68 days) and was 

observed at a rate of 3.5% in the RLV treated patients versus 1.7% in 

the control arm. It is well worth noting that cancers are increasing 

among patients with HIV disease and are of a diff erent type than 

was seen prior to HAART. Also, new malignancies have now been 

seen in other studies, as well. Historically, we witnessed Kaposi’s 

GS 9350 has the potential of 

permanently replacing Norvir 

as a booster, especially if it 

is priced properly, which one 

would expect. 

sarcoma (KS) and non-Hodgkins Lymphoma to be the most common 

of cancers in this population. Presently, anal cancer, liver 

cancer, and Hodgkin’s lymphoma are becoming increasingly more 

common. Th is is probably due in part to patients having damaged 

immune systems and individuals who have had detectable virus in 

the blood (persistent viremia). Th us, it is the opinion of this author, 

50 

that treatment of HIV disease be initiated earlier and that detectable 

viral loads be treated with a more eff ective regimen at the onset 

of failure. In other words, not to let continued failing regimens be 

left untreated, regardless of CD4 T-cell count. 

Additionally, the theory of immune system activation (immune 

reconstitution syndrome) seen commonly when starting or initiating 

a new regimen has also been invoked as a possible cause of 

detection of cancer. Herpes zoster (shingles) is one of the most common 

manifestations of immune reconstitution syndrome. As the 

immune system goes into overdrive, sometimes unexpected events 

can happen, that is, new infections, as well as cancers, can occur 

during this period of new treatment. Physicians should be increasingly 

on the lookout for new problems when patients’ immune systems 

are challenged with new therapy. 

Norvir may become erased! 

A new one pill, once-daily cocktail 

Raltegravir is currently dosed at 400 mg twice daily, while elivitegravir 

is dosed once daily but at 150 mg plus 100 mg of ritonavir 

as its booster. Gilead Sciences has oft en been shown to be a leader 

in development of HIV treatment (i.e., Vistide, Viread, Truvada, 

and Atripla, all keystone accomplishments); most were surprised 

with the recent announcement of their development of a new compound 

that can serve as a booster (like Norvir) to EVG, and to other 

protease inhibitors. Th e compound known presently as GS 9350 

is purely a pharmacokinetic enhancer and 

does not have antiviral eff ects. As such, it 

is not expected to cause the metabolic side 

eff ects that have been associated with Norvir. 

GS 9350 has the potential of permanent- 

ly replacing Norvir as a booster, especially 

if it is priced properly, which one would 

expect. 

Th is begs me to refer to the movie 

“Eraser” with Arnold Schwarzenegger. 

Among Arnold’s one liners are “You’ve just 

been erased,” or referring to being erased, 

“Next time you’re dead… this only happens 

once.” One of these greetings may eventually 

be handed to Norvir, if development of 

GS 9350 goes according to plan. Anyhow, Gilead will eventually 

combine their enhancer or booster with EVG to be formulated into 

a one dosing tablet. Also, look on the horizon for EVG combined 

with GS 9350 plus Truvada, as a new one pill once-daily treatment 

cocktail currently being called QUAD, again, if the future studies 

continue to go smoothly. 


Positively Aware

Non-violent resistance 

When resistance to an antiviral drug 

occurs, by defi nition it denotes that the 

eff ect or advantage of having that drug as 

treatment is lost. EVG and RLV, being part 

of a novel class of HIV drug, are both active 

when resistance occurs to nukes (NRTI), 

non-nukes (NNRTI’s), and protease inhibitors 

(PIs). In other words, integrase inhibitors 

(INIs) retain their eff ect among other class-resistant viruses. 

For readers who are interested in the specifi cs regarding INI 

resistance, I will try to summarize some basic integrase genetic 

changes, although very technical. Resistance to integrase inhibitors 

themselves, although being structurally diverse, has features in 

common and binding modes that probably have many mechanistic 

similarities. Th us INI mutations or genetic codon switches on Q148 

and N155 are selected by both EVG and RAL. Th ese two mutations 

show the greatest mean (phenotypic) fold changes for resistance, 

or are associated with high-level resistance and cross resistance to 

each INI. Th us, if one develops any one of these mutations while 

being on a particular integrase inhibitor, it’s likely they’ll have 

cross-resistance to the other INI. Note that other antiviral drugs 

belonging to other classes retain activity in the presence of these 

mutations. 

Some examples of unique mutations to each INI: Y143 is 

selected by RAL, and 92Q and T66 are EVG-associated mutations. 

All of these codon switches or changes occur within the HIV integrase 

gene and tend to cluster around the binding site within the 

catalytic domain (explained above). Some specifi c mutations, called 

“primary,” are able to confer very high fold changes or resistance, so 

I believe that only one primary mutation is required for resistance. 

Th e New England Journal of Medicine article states that two mutations 

(one primary and one secondary) are generally required for 

resistance, but I don’t necessarily agree with this statement, since 

the second mutation usually follows very quickly behind the occurrence 

of the primary; the second will almost always be present at 

the same time as the primary. 

Interestingly, INI-mutated virus showed 50% reduced viral fi tness 

(virus that is less apt to damage immune function), compared 

to wild type (untreated, un-mutated virus). So if one theoretically 

develops INI resistance, they may get some consolation prize, but I 

don’t recommend it. Anyhow, we don’t know yet whether this has 

any clinical relevance. 

Phase 3: the head-to-head study 

The grand milestone and unprecedented, non-inferiority 

study comparing the two integrase inhibitors has only just begun. 

Elvitegravir (GS9137), Gilead Sciences’ compound, and raltegravir 



If one develops any one of 

these mutations while being 

on a particular integrase 

inhibitor, it’s likely they’ll 

have cross-resistance to 

the other INI. 

(Isentress, MK0518), the Merck agent, will confront each other in a 

colossal study of epic proportions that is both historic and signifi - 

cant by any measure. 

Treated patients who have failed a regimen can potentially 

become a candidate and participate in this trial. Each patient will 

be randomly assigned to be treated with either EVG or RLV in combination 

with a physician-selected boosted protease inhibitor plus a 

third drug. Th e standard dose of Isentress (400 mg twice daily) will 

be compared with boosted EVG at 150 mg. However, if a patient is 

administered one of the two PIs Kaletra or Reyataz, both of which 

increase EVG exposure by 75% and 100% respectively, then dosing 

of EVG need only be 85 mg, thus off setting this interaction. Patients 

will be allowed to use a third drug, including a nuke, Intelence 

(etravirine), or Selzentry (maraviroc). 

Conclusion 

Th is study is indeed a celebration about the progress in HIV 

therapy; one can’t help but look forward to seeing what the results 

of this trial will show. Genetic barriers to resistance for integrase 

inhibitors are low since single mutations can confer greater than 

20–1,000-fold reduced susceptibility, therefore adherence to the 

regimen or taking all doses prescribed is always the key. However, 

when integrase inhibitors are combined with active drugs, they 

show high-level potency and the results are ones that we’ve never 

observed before. To the physician, no individual should ever be 

treated with functional monotherapy and a minimum of at least 

two more active drugs should be included in any regimen. Integrase 

inhibitor-containing regimens are no exception. e 

Dr. Daniel Berger is a leading HIV sp ecialist in the U.S. and is 

assist ant professor of medicine at the University of Illinois at Chicago 

and medical direct or and founder of Northst ar Medical Center, 

the largest private HIV treatment and research center in the Greater 

Chicago area. He has published extensively in such prest igious journals 

as the Lancet and the New England Journal of Medicine and 

serves on the Medical Issues Committee for the Illinois AIDS Drug 

Assist ance Program and the AIDS Foundation of Chicago. Dr. Berger 

has been honored by Test Positive Aware Network with the Charles E. 

Clift on Leadership Award. 

51

What’s Goin’ On? 

I 

don’t let too many things get to me these 

days. When you’ve been as close to death 

as I have, you learn quickly to brush the 

dirt off your shoulders and keep it moving. 

For me to do otherwise could jeopardize 

everything I’ve put into reclaiming my life. 

So, when I received the fi rst e-mail 

about how I was being “wrung through 

the mud” on a popular “ex-gay” Christian 

website (ironically moderated by a guy who 

goes by the name of DL…go fi gure), I took 

it as a cheap shot for controversy and continued 

on with my day. My days, aft er all, 

are pretty full. So focusing energy on something 

so obviously rooted in internalized 

homophobia was not something I was willing, 

nor able, to sacrifi ce. 

Later that aft ernoon though, out of 

sheer curiosity, I decided to take a peek at 

exactly what was being said about me. 

Last year, I worked with Th eBody.com 

to create a pamphlet designed to convince 

newly diagnosed individuals of the notion 

that a relatively healthy and productive life 

with HIV is possible. Th e site’s moderator, 

the DL guy, cut and pasted pictures and 

pull quotes from the online version of the 

project (which were actually taken from an 

interview that, if printed out, would probably 

measure four to fi ve pages in length), 

while completely distorting the message 

and intent behind them. 

Here is the quote that he posted: 

“My life right now is very good, and I’m 

not sure I would be able to say that had HIV 

not entered into it, because it really made 

me explore who I am, why I’m here, and 

fi nd purpose.” 

Out of context it may be possible to 

come to the conclusion that I credit HIV 

directly for the “very good” place that I now 

fi nd myself in, maybe. But here is the question 

that evoked this response, followed by 

my answer in its entirety. 

“How has HIV changed you?” 

“HIV made me question life. HIV made 

me question God. And it made me take on a 

whole new outlook. My life right now is very 

good, and I’m not sure I would be able to say 

52 

The Glamorous Life of HIV 

Twisted words, hurt feelings, and redemption 


that had HIV not entered into it, because it 

really made me explore who I am, why I’m 

here, and fi nd purpose.” 

To this day, he has not posted a link 

or even referenced the source from which 

he extracted this quote, even aft er being 

informed by several people that, out of context, 

he was warping its meaning. 

It made me angry to think that somebody 

would be so mean-spirited to perpetuate 

such ignorance, just to make their point. 

And it hurt me to be the target of such malicious 

slander. 

More than most, I know that there is 

nothing glamorous about life with HIV. 

I have, aft er all, been living with it my 

entire adult life. Fourteen years, to be exact. 

And the truth of the matter is that there 

have been several moments when I have 

allowed this virus to get the best of me. 

Like when I dropped out of college 

during my freshman year because I just 

knew that I’d be dead before graduation. Or, 

six years ago, when I was told that I had six 

months to a year to live—my six-foot-four, 

generally 200-pound frame deteriorating 

to a measly hundred and forty-four pounds 

of bones. 

And because I dared to question the 

God of my understanding, with the purest 

intent of trying to understand Him and 

His purpose for my life, I have been blessed 

to not only recover from some of the most 

severe physical and psychological trauma 

that one could imagine, but I have found 

peace in the midst of it all. (Not to mention 

the fact that God cannot be confi ned to such 

inferior pronouns as He and She, but that’s 

a whole other subject…so I digress.) 

In light of my current understating, 

then, there is not a thing that some DL guy 

or any other human being on the face of this 

Earth can do or say to destroy my faith in 

Her or the relationship that has developed 

as a result. My life is glamorous because of 

that relationship, which, however unfortunate, 

was signifi cantly stimulated by my 

encounter with HIV. Th e tragic thing is that, 

because of people like the DL guy who try 

to force their own insecurities on the rest 

of us by way of religious dogma, I didn’t 

understand any of that before I put myself 

at risk for HIV. 

I heard Bishop T.D. Jakes once say, in 

a sermon titled Th e God who Married a 

Tramp, that once you have taken care of all 

of those things in your life that you believe 

God wants you to take care of, He will love 

you no more then than He does right now. 

I make a conscious eff ort every day to 

walk in that understanding. And that makes 

me okay with God, just as I am. And it is in 

that same spirit that I agreed to be a part 

of this pamphlet for the newly diagnosed— 

to share that understanding with others, in 

hopes that they too will carry on with their 

lives in spite of (and even perhaps because 

of) a diagnosis with HIV. Shame on anyone 

who would attempt to devalue that. 

Ironically, a couple of weeks later, I 

received an e-mail from a newly-diagnosed 

man from downstate Illinois. Struggling 

with his own sexuality, he had come across 

this particular posting while cruising the 

DL guy’s site. At that time, he was HIVnegative. 

By his own admission, he didn’t 

necessarily agree with the way that I was 

being attacked on the site, but because it 

didn’t aff ect him directly he opted out of 

rocking the boat. 

When he received his diagnosis, he 

would tell me later, I was the fi rst person to 

cross his mind. 

Long story short, I’ve connected him 

with a wonderful pastor here in Chicago 

who has agreed to help him work through 

the issues that he has with his sexuality, in 

a healthy and productive way. And, with 

a Positively Aware subscription in tow, he 

is approaching treatment as an informed 

participant in his own health care. And 

he revisited the DL guy’s site to tell him all 

about his experience with the hellbound 

Keith Green. 

Clearly, DL guy, what man means for 

evil, God can turn to good…and glamorous! 

e 





And the Band Plays On 

Beyond testing 

by Jim Pickett 

Sounds familiar, doesn’t it? 

Meanwhile, back at the ranch—the USA Not OK Corral—gay 

men in the land of milk and honey continue to go hungry in the 

domestic AIDS epidemic. 

If you’re a black gay man, or a Latino gay man—you’re starving. 

We, and I do mean the royal we (aka all of us, top to bottom, 

bottom to top, every one of our agencies, from the feds to the “mom 

and pop HIV shop” in your town), continue to miserably fail gay 

and bisexual men in the area of HIV prevention. 

Back in June of 2008, just before National HIV Testing Day 

when everyone and their aunt is encouraged to get tested and know 

their status, right before the last orgiastic weekend of Gay Prides 

across the country, the Centers for Disease Control and Prevention 

released a report called “Trends in HIV/AIDS Diagnoses Among 

Men Who Have Sex with Men [MSM]—33 States, 2001–2006” in 

their venerable Morbidity and Mortality Weekly Report (MMWR 

June 27, 2008 / 57(25);681-686). With 

thanks to my friend and colleague David 

Munar for his precision analysis, here are 

some of the lowlights: 

• MSM diagnoses increased 8.6% from 

2001-2006 in 33 states 

• Of 214,379 new HIV/AIDS infections 

reported in 33 states during the period, 

46%—by far the largest percentage— 

occurred among MSM. Another 4% 

were among gay men who also injected 

drugs. 

• In 2001-2006, MSM remained the largest 

HIV transmission category and the 

only one associated with increasing 

numbers of HIV/AIDS diagnoses 

• Increases were highest for Western states (7.2% estimated 

annual increase) followed closely by Midwestern states 

(6.7% estimated annual increase) 

• Th e data excludes fi gures from California and Illinois, both 

of which include large gay populations 

• Observed increases were highest among MSM ages 13-24 

• From 2001-2006, cases among 13-24 black MSM increased 

93.1% (from 938 cases in 2001 to 1,811 cases in 2006) 

• From 2001-2006, cases among 13-24 Asian/Pacifi c Islander 

MSM increased 255.6% (from 9 cases in 2001 to 32 cases in 

2006) 

• From 2001-2006, cases among 13-24 Latino MSM increased 

45.7% (from 330 cases in 2001 to 481 cases in 2006) 

• From 2001-2006, cases among 13-24 white MSM increased 

63.4% (from 430 cases in 2001 to 703 in 2006) 



Pickett Fences 

Like how that sounds? How about that for a rhythm section? 

I for one simply adore all the chorus boys in their spandex and 

sparkles. Look at that stretch! 

Someone asked me if I was surprised about this batch of rotten 

tomatoes (or is it poopy jalapeños these days? fecal lettuce?). Sadly, I 

replied that while the stats are shocking and speak to enormous suffering, 

and oh my god, the horrors of those catastrophic increases 

among our young gay guys, I was not in the least surprised. Why? 

Because we, and I do mean the royal we, have been essentially 

ignoring gay men of all colors in addressing this epidemic. Instead, 

we have chosen the politically expedient path of pushing the false 

notion of a generalized epidemic in which “we are all at risk.” And 

yeah, another big problem many of us have helped orchestrate is 

making everything about testing, testing, testing. Where are we 

before the damn test? What are we doing to help ensure that sexually 

active gay men get consistent negatives on their tests, tests, 

tests? 

HIV has forced me to separate 

the bull from the shit, make 

priorities, get real. 

“To reduce the impact of HIV/AIDS in the United States, HIV 

prevention services that aim to reduce the risk for acquiring and 

transmitting infection among MSM and link infected MSM to treatment 

must be expanded,” recommends the CDC in the report. 

Well, guess what? Th ey don’t have to do much to expand. Case 

in point—in a May 2008 report called “An Assessment of CDC’s 

HIV Prevention Interventions Portfolio: Identifying the Gaps,” Th e 

AIDS Institute found that only four of 49 HIV/AIDS prevention 

strategies highly recommended by the CDC target gay men and 

none, zilch, zero were directed at black or Latino gay men. 

We make up half the epidemic, half the epidemic, and we 

deserve less than 10% of the highly recommended interventions? In 

some urban areas, one in two black gay men are infected with HIV. 

Th at’s half of all black gay men, and they get—nothing. In major 

U.S. cities, as many as one in four Latino gay men have HIV—nada. 

And for a little context, recall that gay men of all colors maybe make 

53

Pickett Fences continued 

up about four percent of the entire U.S. population yet endure the 

rates I have described. How is that for a full-blown disparity? If 

we got the CDC up to eight highly recommended strategies, that 

would mean we increased prevention services targeted to gay men 

by 100%. But, hum a little ditty on this, would it be commensurate 

with the need? 

Richard Wolitski, acting director of HIV/AIDS prevention at 

the CDC, told the Chicago Tribune, “One of the misperceptions that 

people have is that we have a suffi cient number of well-researched 

interventions for preventing HIV/AIDS in [gay men] but that’s not 

true.” He went on to tell the Trib that a number of things were in 

the works for gay substance users, as well as research and training 

plans for black and Latino gay men. 

Meanwhile, back at the USA Not OK Corral, gay men who are 

your friends, family, boyfriends, lovers, tricks, and exes, the gay 

men who are the people you meet while you’re walking down the 

street, the people you meet each day, are getting infected in droves. 

Clearly, we can’t wait for research and new trainings to be completed. 

We can’t sit this one out and wait for the next dance. Aft er all, 

we have always been at the center of the domestic epidemic, what 

could we possibly be waiting for? 

Get 

Positively 

Aware! 

S/O 2008 

Mail to: 


5537 N. Broadway 


54 

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*Subscriptions are mailed free of charge to those who are HIV-positive. 

If you claim to be doing HIV awareness, education and/or 

prevention work and you are neglecting gay men of all colors, and 

particularly black and Latino gay men and young gay men—you are 

out of tune. If all you are doing is pushing testing on people, you are 

off the beat. If you are continuing to spread the notion that HIV is 

everybody’s problem, you are rapping up the wrong tree. If you talk 

about the criminal disparities faced by black people in terms of this 

epidemic and as you lament the plight of black women you somehow 

“forget” to mention black gay men—you’ve missed most of the 

chorus. And if you are serving gay men but insist on characterizing 

sex as dirty, scary, disease producing, and decidedly less than 

enjoyable, and if you are only addressing their needs with a narrow 

navel to knee focus—the boys in the band won’t be listening. 

Recalling the Los Angeles Lesbian and Gay Community Center’s 

“controversial” social marketing campaign from 2006, HIV is 

a gay disease. Make the score holistic and sing it, Mary. 

“Keep it light, keep it bright, keep it gay.”—Roger DeBris, tres 

fey (and demented direct or) of “Springtime for Hitler” (“Th e Producers”). 

e 

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Positively Aware

Don’t lose yourself to HIV. 

Lipoatrophy: 

unwanted fat loss 

Learn the facts 

that may help 

keep you looking 

your best 

Q. What is lipoatrophy? 

A. Lipoatrophy (lipe-oh-AT-troh-fee) is the 

loss of fat under the skin. You may not 

lose much weight, but it may change 

how you look and feel about yourself. 

Q. What are the signs of lipoatrophy? 

A. Lipoatrophy can affect the face, arms, 

and legs. Flat buttocks and veiny legs 

and arms are common. Women may 

notice they are losing their “shape.” 

Other signs include sunken cheeks 

and hollow eyes. 

Q. What are some of the common risk 

factors identified with lipoatrophy? 

A. Some of the risk factors that have been 

associated with lipoatrophy include1,2 : 

• HIV itself 

• The number of years on HIV therapy 

• HIV meds 

©2008 Gilead Sciences, Inc. 

All rights reserved. PT0219 4/08 

your 

< 

meds 

Q. What can I do about lipoatrophy? 

A. If you have signs of lipoatrophy, or 

have concerns about getting 

lipoatrophy, discuss them with 

your healthcare provider. 

For more information, visit 

www.MyHIVLife.com 

References: 1. Lichtenstein KA. Redefining lipodystrophy syndrome: risks and impact on 

clinical decision-making. J Acquir Immune Defic Syndr. 2005;39:395-400. 2. Behrens G, 

Schmidt RE. Lipodystrophy syndrome. In: HIV Medicine. 14th ed; 2006. Available at: 

http://www.hivmedicine.com/textbook/ls.htm. Accessed June 19, 2007. 

Part of an ongoing series from Gilead

WELLNESS STARTS WITH AWARENESS - CD8 T cells - The Body

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