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BREAST
CANCER
ACTION
Newsletter #91
June/July 2006
®
www.bcaction.org
I N S I D E
Executive Director’s Column:
Access to Screening and Treatment 2
BCA Board Members Help
Women Navigate Health Systems 3
Biotech Therapy Pricing—
A New Barrier to Access to Care 7
Universal Access to Care:
U.S. Health System in Need of Repair
By Brenda Salgado
Several years ago, I returned from
work in Central America. I was excited
to be starting a new job in two months,
but until then I had no income and no
insurance. I decided to use my free time to
help my sister with home improvement
projects. But then an accident occurred, and I
found myself needing medical care. I asked
how much it would cost, and the hospital
couldn’t tell me. A few weeks and a few
stitches later, I found myself facing more than
$1,200 in bills for a brief hospital visit and a
few sutures in my knee.
I am blessed to have a wonderful family
who helped me pay the bill, and I was able to
reimburse them after starting work a few
months later. But I immediately thought
about many people in this country who
experience something like this and don’t have
that safety net. Perhaps it means they can’t
pay the rent, feed their family, or purchase
needed medicine, and in some cases, they
may even lose their home.
Think this is not a likely scenario? Think
again. Half of U.S.
bankruptcies are
due to medical expenses,
according to
a 2005 Harvard
University study. 1
Even more disturbing,
more than
75 percent of the
people who declared
bankruptcy were
covered by health
insurance at the
time they required
hospitalization or experienced a
medical emergency. It was the high out-ofpocket
expenses (average of $13,460 for
those with insurance) that led to their
financial ruin.
What About the Uninsured?
About 48 million people in the United States
lacked health insurance in 2005. 2 That’s an
increase of over eight million just since 2000. 3
While most people in this country receive
health insurance through their employer,
being employed is not a guarantee of
coverage. Eighty percent of uninsured people
come from working families with low and
moderate incomes. 4 For these families,
coverage is not available through work, or it
is simply not affordable. According to an
Institute of Medicine report, about 18,000
unnecessary deaths in the United States every
year can be attributed to a lack of health
insurance. 5
If you are insured, why should these 48
million people matter to you? Due to the high
cost of medical care, uninsured people often
postpone seeing a doctor about their health
problems, or forgo care altogether. 6 This
CALENDAR
EVENT
November 2–3, 2006
Breast Cancer and the
Environment Research Centers’
Third Annual Symposium
Claremont Hotel, Berkeley, Calif.
This scientific meeting will feature
presentations of research on
environmental links to breast cancer.
Scientists and breast cancer activists
from around the country will be in
attendance. For more information, or
to register, visit www.bcerc.org.
means their health problems escalate until
they find themselves in an emergency room.
After paying all they can, they may then find
themselves in debt or bankruptcy.
More than one-third of the total cost of
medical care for the uninsured is paid out-ofpocket
by the uninsured themselves. The
remaining two-thirds is covered by
government programs and higher premiums
for those who have health insurance.
Ensuring that everyone has access to health
care is not just a humanitarian dream. From
an economic standpoint, keeping uninsured
people in good health helps all of us, because
preventative and routine care is far less costly
than catastrophic care. As premiums go up,
more employers may stop providing coverage,
increasing the number of uninsured people
and increasing the problem. We have to find
a better health system that will stop this cycle
and protect all of us.
Really, we all pay in a broad sense when
others are uninsured. People without health
insurance tend to be sicker and, in turn, less
productive, and that affects our society’s
economic well-being. If uninsured children
continued on page 8

2 June/July 2006 Breast Cancer Action
FROM THE EXECUTIVE DIRECTOR
Facing the Challenges: Access to Screening and Treatment
By Barbara A. Brenner
The following is a talk presented at the San Francisco Breast Cancer
Summit in November 1996 and published in the February/March 1997
issue of this newsletter. A decade after Barbara Brenner presented this
talk, accessing care is still a dire issue for many women with breast cancer
and the public at large. This issue of the newsletter explores some of the
problems and some of the ways people are working for change.
As a white, upper middle-class Jewish lesbian with breast
cancer, I know that I have been privileged to receive
treatment in a city whose resources—both private and
public—are phenomenal. In the years before my diagnosis, I had
access to mammograms, clinical breast exams, and diagnostic
procedures when I needed them. I had
access not only because I knew where and
how to get them, but also because the cost
was covered largely by insurance.
Since September 1993, I have been
treated twice for breast cancer in San
Francisco. I want to talk today about the
care I received. I believe my experience is
instructive because it reveals both what is
possible and what the challenges are for
making sure that all women get the
services they need when confronting a
possible or actual breast cancer diagnosis.
In January 1993, at the age of 41 I
had a screening mammogram. I chose to
have the mammogram at UCSF, but, under
my insurance plan, I could have had the
procedure almost anywhere in the city. My mammogram showed the
dense breast tissue that is not uncommon in premenopausal women.
I knew about this phenomenon and did not rely on the
mammogram. I had learned years before about breast self-exams, and
I was not afraid of or embarrassed by my body, so I did monthly
exams.
In August 1993 in the course of my breast self-exam, I found a
lump. I picked up the phone, called my surgeon (I had someone I
had seen previously,) and got an appointment to see him. The fine
needle aspiration proved inconclusive, so we scheduled an excisional
biopsy. The lump turned out to be invasive ductal breast cancer.
Let’s stop here a minute and imagine a few things differently. Let’s
imagine that I did not have insurance, or had a high-deductible policy and
“As stressful as it is to
deal with a diagnosis of breast
cancer, that stress
is often swamped by the
pressures of putting food
on the table and keeping
a roof over the kids’ heads, let
alone our own heads.”
would have to pay for a mammogram out of my own pocket, or that I was
someone who didn’t know the first thing about mammograms—what they
were, their benefits and risks, or how to get one. Or that the cultural norms
with which I was raised made it shameful or sinful to touch my breasts. Or
that I was an undocumented woman who was afraid to seek health care
because I was concerned that immigration authorities would find out about
me. Or that I was a legal immigrant concerned about the rabid atmosphere
surrounding people with Spanish surnames who was afraid to seek health
care because I didn’t trust that anyone would take the time to distinguish
me from undocumented people. As a result, I might stand before you
today—three years later—with advanced disease. Or I might not be
standing before you at all because my breast cancer was diagnosed too late
to be treated effectively…
Once I was diagnosed, the first thing I
did was arrange to stop practicing law for
as long as necessary to address the lifethreatening
illness that had intruded into
my life. My ability to do that was entirely a
function of a supportive work and family
environment, and income security in the
form of income disability insurance coverage.
I had a loving partner of 18 years
who earned a decent income, a house we
owned in Noe Valley, a health insurance
plan—paid for by my law firm—that gave
me many options in terms of which doctors
I saw and where I received treatment. I also
had an extensive network of friends and
acquaintances who were familiar with
health care issues in general and breast cancer in particular, and who,
by the way, knew how to cook.
How would my situation have been different if I had had small
children and no partner, or if I had had a minimum wage job and no
income security, or, as is too often the case, all of the above? As stressful as
it is to deal with a diagnosis of breast cancer, that stress is often swamped
by the pressures of putting food on the table and keeping a roof over the
kids’ heads, let alone our own heads. We fool ourselves badly if we pretend
that addressing issues of access to treatment does not involve addressing
issues of basic human needs.
Let’s go back to my story. After I took care of my work obligations,
I started gathering as much information as I possibly could. I
continued on page 6
TURN IN YOUR DOCTOR!
If you think your health care providers should be reading the BCA Newsletter, let us know!
Just send their names and addresses (including e-mail, if available) to
sharding@bcaction.org, or call us toll free at 877/278-6722.

Breast Cancer Action June/July 2006 3
Breast Cancer Action
Mission Statement
Breast Cancer Action carries the voices of people
affected by breast cancer to inspire and compel
the changes necessary to end the breast
cancer epidemic.
Core Principles and Values
1. We are a membership-based organization that
values the involvement of grassroots activists
throughout the country and around the world
to further our mission.
2. We honor each person’s commitment and
energy to our mission.
3. We are not afraid to examine all sides of all
issues.
4. We cannot be bought.
5. We tell the truth about what we discover.
6. We serve individuals while reaching the
broader population.
7. We address the significance of environmental
links to human health.
8. We encourage people to participate fully in
decisions relating to breast cancer.
9. We believe access to information is vital.
10. We work for structural changes toward social
justice to accomplish our mission.
Breast Cancer Action
55 New Montgomery Street, #323
San Francisco, CA 94105
Phone: 415/243-9301
Toll free: 877/2-STOP-BC [877/278-6722]
Fax: 415/243-3996
E-mail: info@bcaction.org
Web site: www.bcaction.org
Board Members
Denise Wells, President
Dorothy Geoghegan, Vice President
Tori Freeman, Treasurer
Bhavna Shamasunder, Secretary
Diane Carr, Kim Cox, Olivia Fè,
Gail Kaufman, Ellen Lew, JoAnn Loulan,
Jo Ann Madigan, Belle Shayer (emerita),
Jane Sprague Zones
Staff
Barbara A. Brenner, Executive Director
Angela Carrier, Office Coordinator
Rebecca Farmer, Communications Officer
Sarah Harding, Development Associate
Katrina Kahl, Communications Associate
Pauli Ojea, Community Organizer
Eleanor Rouse, Development Director
Brenda Salgado, Program Manager
Lisa Wanzor, Associate Director
BCA Newsletter
© BCA 2006, ISSN #1088-386X, published
bimonthly by BCA. Articles on detection and
treatment do not constitute endorsements but
are intended solely to inform. Call for permission
before reprinting. To subscribe, send name and
address to BCA. Requested annual donation is
$50, but no one is refused for lack of funds.
Editor: Rebecca Farmer
Editorial Associate: Katrina Kahl
Copyediting/Proofreading: Robert Gomez
Layout: Yvonne Day, Y. Day Designs
Editorial Board: Barbara Brenner, Rebecca
Farmer, Lauren John, Jane Sprague Zones
“Breast Cancer Action” and the BCA logo are the
registered trademarks of Breast Cancer Action.
All rights reserved. Not to be used without
express written permission.
BCA Board Members Help Women Navigate
Health Systems
By Rebecca Farmer
Three members of Breast Cancer
Action’s board have experience
working as direct service providers.
These women play a crucial role in helping
women with, and at risk for, breast cancer
obtain the care they need. Though they work
in different aspects of the health world in the
San Francisco Bay Area, Olivia Fè, Kim Cox,
and Diane Carr agree that patient navigation
is a key part of helping women move through
a broken health system.
The Bay Area in particular and California
as a whole have an enormous number of
resources available to women who need
access to breast screening, treatment, and
related services. Still, the health system is a
broken one, and patient navigators in local
government and private agencies serve to fill
gaps that shouldn’t exist. (For more
information, see “Universal Access to Care:
U.S. Health System in Need of Repair,” on the
cover of this issue.) Many people fall through
the cracks, but women in the areas served by
Olivia, Kim, and Diane are supported and
guided, and their basic health rights are
assured.
Olivia Fè: Advocating
for Latinas in San
Francisco
After her own experience
with breast cancer, Olivia Fè
founded the Latina Breast
Cancer Agency (LBCA) in
San Francisco in 2002. This
What Does Breast Cancer Action Do?
was her response to the growing need for
breast cancer programs for underserved
Latinas in the city. As the group’s executive
director, she developed key partnerships with
local hospitals, clinics, and other health
organizations to assist low-income, uninsured
Latinas in gaining access to the health care
system.
For several reasons, access to care is a
big challenge for the Latina community.
Olivia reports that a fear of being deported is
common among the undocumented women
she serves. This fear is “very real,” she
explained. Additionally, many women who
come to her agency are working more than
one job, and taking time off from work—
particularly for hourly workers—presents yet
another challenge, especially when employers
are not so accommodating. “We’ve heard that
the employer threatens to fire them if they
take time off work,” Olivia said. In response,
LBCA has opened its doors on Saturday.
The language barrier creates a whole set
of obstacles for many Latinas with whom
Olivia works. Consider the paperwork
involved in any health care registration
process. Now consider that all of the
forms are in English. Additionally,
many hospitals and clinics don’t have
bilingual or bicultural staff—or there
are not enough to fill the demand.
This is problematic in such a diverse
city, Olivia explained, “not only for the
Latina community, but for Asian
continued on page 4
Breast Cancer Action
◆ Provides information to anyone who needs it via newsletters, web sites, and a toll-free number.
◆ Organizes people to do something besides worry.
◆ Advocates for policy changes directed at achieving true prevention through understanding and
eliminating the causes of breast cancer; working toward a true cure with treatments that don’t
nearly kill people or cause other diseases; and assuring universal access to quality health care.
BCA is committed to the precautionary principle of public health: First, do no harm. We work with
other organizations to encourage the use of environmentally safe alternatives to ways of doing
business that we know—or have reason to believe—are harmful. BCA also sifts through the
stacks of misinformation that now circulate about breast cancer. What you won’t learn in the
newspaper or on television—or sometimes even from your doctor—is in our highly acclaimed
newsletter. We’re the Bad Girls of Breast Cancer, and we’ll be here as long as it takes.

4 June/July 2006 Breast Cancer Action
BCA Board Members…
continued from page 3
communities and others.”
LBCA schedules appointments for
women and accompanies them to their
appointments. The group also provides onsite
translation and interpretation services.
“This has made a really big difference for our
women to acquire the free screening services.
We have the return rate. [LBCA clients return
time and again.] They call us before we send
out the [reminder] notice to them,” Olivia
said. She encourages hospitals and clinics to
provide cultural sensitivity trainings so that
their staff members understand the cultures of
the patients they’re serving. While that might
seem a small piece in a big,
bad health world, Olivia
pointed out that it makes a
big difference to her
community.
Kim Cox:
Making a Difference
Across the Bay
Across the San Francisco
Bay, Kim Cox directed
Contra Costa County’s Breast Cancer Program
from 1997 to 2002. There, she worked with
a coalition of advocates, educators, and
medical providers that addressed breast
cancer education, outreach, screening,
diagnosis, and treatment issues for uninsured,
low-income women. She has been a public
health educator and administrator for over 20
years in both the United States and abroad.
Kim is also an 10-year ovarian cancer survivor
who says, “Any day with hair is a good hair
day.”
She helped create Contra Costa County’s
Alerts by E-mail
patient navigator program, which also focuses
on community outreach. The program
recruited women from the local community,
trained them, and then employed them to talk
about early detection. Spanish-speaking
navigators would also go into the exam room
with women and interpret during the visit.
However, this was not always the case
in that county.
“If you spoke English,” Kim said,
“you could go to American Cancer
Society and get a wig. You could go to
the Wellness Community and get
support services.” But after a situation
went terribly wrong for a Spanishspeaking
patient, the agencies and
Kim’s program realized changes
needed to be made. Today, there are
more resources available for Spanish speakers
in the county.
Realizing the importance of tailoring
outreach to be appropriate for different
communities, the county also created
culturally tailored programs for the Asian
Pacific Islander community, African American
women, and lesbians. “Hospitals should really
look to their community,” Kim said.
Kim is also well-versed in the layers
upon layers of bureaucracy involved with the
various local, state, and federal programs.
Each seems to patch part of the problem, one
Want up-to-the-minute news, notices, and action alerts on
breast cancer—but hate to see your e-mailbox cluttered
with unwanted messages? Sign up for BCA’s monthly e-alert!
The e-alert goes out on the first Wednesday of the month, with
an occasional midmonth update for special events and alerts on
short notice. The e-alerts will also let you know when the newest
issue of the BCA Newsletter has been posted on our web site—
so if you’d prefer to download it from the site instead of receiving it
in the mail, contact us at 415/243-9301 or info@bcaction.org. Sign up
for the e-alert online at www.bcaction.org/ealert.
“The health system is a broken one, and patient navigators
in local government and private agencies serve to fill gaps
that shouldn’t exist.”
facet of the broken
system, but only an
assurance of
universal access to
care will truly solve
the problem.
Diane Carr:
Devoted to
Women’s Health
A registered nurse since 1967 and a nurse
practitioner since 1981, Diane Carr has
dedicated her career to women’s health. She is
currently the director of Breast and Cervical
Cancer Services for the San Francisco
Department of Public Health and is a member
of the state’s Breast and Cervical Cancer
Advisory Council. Diane has also been
touched by breast cancer in her personal
life—family and friends have had the disease,
including her mother, who died in 1989. She
is particularly proud of her work with the San
Francisco Women’s Health Center/Collective
and the Coalition for the Medical Rights of
Women, which focuses on empowering
women by demanding and advocating for
quality health care for themselves and their
families.
Like many people who work in the
health field, Diane explains that the United
States’s health care system is broken, and that
the navigators she oversees help patients
overcome the obstacles inherent in this
system.
Everyone diagnosed with breast cancer at
San Francisco General Hospital (SFGH),
which is overseen by the city’s public health
department, is assigned a patient navigator to
make sure that they get the right services and
resources. Because so many languages are
spoken in San Francisco, there are navigators
at SFGH who speak Spanish, Cantonese,
Russian, and Tagalog. However, this doesn’t
cover every language group. For SFGH’s
Vietnamese-speaking patients, for example, an
continued on page 5

Breast Cancer Action June/July 2006 5
… BCA Board Members
continued from page 4
interpreter would be called, though this often
entails an hours-long wait.
Diane is quick to point out that the
patient navigators at SFGH are “an incredible
group of people” who make a tremendous
difference in the lives of the people they serve.
They are someone for patients to call on, and
to talk to, which can make a huge difference
when facing a traumatic diagnosis. She also
says that it’s not just about cancer, that
“everyone with a chronic disease needs some
sort of navigator and advocate.” An ultimate
goal is to connect people into continuous,
primary care.
History of Patient Navigation
The first patient navigation program was
started at Harlem Hospital by Harold
Freeman, a cancer surgeon who was keenly
aware of race- and income-based health
disparities. In his program, which has served
as a model for hospitals around the country,
low-income patients were matched with
someone to guide them through the health
care system and ensure they received the
necessary care.
Freeman has said about such programs,
“Now you have a system where a person is
not just in touch with a clinic, or a building,
or a yellow line to follow. There’s a real
person … We generally talk of the war against
cancer like it’s a research war. But don’t stop
there: The war against cancer needs to be
fought in the neighborhoods where people
live and die.” 1
For the immediate future, it’s clear that
patient navigator programs will continue to fill
the gap left by our broken health care system.
Diane Carr posed the question, “Are navigator
programs a band aid?” to which she replied,
“Probably.” But until everyone is guaranteed
access to quality health care—and perhaps even
then—patient navigators and health advocates
alike will continue to help people move through
these complex systems. ◆
FOR MORE INFORMATION
◆
◆
◆
LATINA BREAST CANCER AGENCY
415/584-3444 (main line)
415/584-3449 (Spanish line)
www.latinabca.org
CALIFORNIA RESOURCES:
Cancer Detection Programs:
Every Woman Counts
800/511-2300
cancerdetection@dhs.ca.gov
www.dhs.ca.gov/cancerdetection/
NATIONAL RESOURCES:
National Breast and Cervical Cancer
Early Detection Program
800/CDC-INFO (232-4636)
www.cdc.gov/cancer/nbccedp/
Rebecca Farmer is BCA’s Communications
Officer.
1 Sam Grobart, “Best Doctors: Dr. Harold Freeman:
War on Poverty,” New York Magazine, June 7, 1999.
CLIPPING: Lapatinib News from ASCO
For women living with HER2-positive
breast cancer that does not respond to
trastuzumab (brand name Herceptin), a
new drug, lapatinib (brand name Tykerb)
may be an alternative. GlaxoSmithKline,
manufacturer of Tykerb, announced
results from its clinical trial at the 2006
American Society for Clinical Oncology
conference.
The results of the trial should be
interpreted with caution, however. The trial
was stopped early when Tykerb was
shown to prolong the time to tumor
progression. So Tykerb has not been
shown to prolong lives. Additionally,
information about long-term side effects,
including cardiac safety, is not available.
Although researchers report that Tykerb
does not seem to carry the same risk of
heart failure as Herceptin, four of the
women taking Tykerb had a reduction in
heart function that reversed when Tykerb
was stopped.
Researchers also reported a reduced
incidence of cancers that spread to the
brain in the group of women who received
Tykerb. However, this reduction was not
statistically significant. The trial also has
yet to be published in a peer-reviewed
journal, and given this and the shortness
of the trial, full details and side effect data
are not available.
The trial compared the median time to
tumor progression for women taking
Tykerb, in combination with the
chemotherapy drug capecitabine (Xeloda),
to women taking Xeloda only. Researchers
report that Tykerb plus Xeloda almost
doubled the time to tumor progression,
compared to treatment with Xeloda only.
Another benefit of Tykerb is that it is
available as a once-a-day pill.
The trial enrolled 321 women
randomized to receive Xeloda alone (161
women) or a combination of Tykerb and
Xeloda (160 women). All of the women in
the trial had refractory advanced or
metastatic HER2-positive breast cancer
that had progressed following treatment
with Herceptin. The women were followed
from March 2004 to November 2005, and
researchers reported that, on average,
Xeloda alone delayed tumor growth for
19.7 weeks whereas Xeloda plus Tykerb
delayed tumor growth for 36.0 weeks.
More women in the Tykerb group reported
mild to moderate diarrhea (58 percent) and
a mild rash (30 percent) than in the
Xeloda-only group (39 percent and 18
percent, respectively).
Although Tykerb is an investigational
drug, the FDA has granted fast-track
approval status for the treatment of
refractory advanced or metastatic HER2-
positive breast cancer in women for whom
previous therapy has failed.
GlaxoSmithKline says it will also make
Tykerb available through a global
Expanded Access Program for women
who qualify. More information can be
found by calling 888/4TYKERB (489-5372)
or e-mailing breastcancereap@gsk.com.
— Katrina Kahl
Katrina Kahl is BCA’s
Communications Associate

6 June/July 2006 Breast Cancer Action
… Access to Screening and Treatment
continued from page 2
got in touch with an acquaintance—now a
friend—who is an oncology nurse who works
with breast cancer patients. Debby made
herself available to me and my partner, and
over several sessions we spent probably four
hours with Debby talking about what
decisions needed to be made, what
information was needed to make those
decisions, when they needed to be made and
how to make them. Debby helped me
understand the implications of the pathology
report from my breast biopsy and gave me
names of doctors that I might consult about
treatment. Other people tipped me off to Dr.
Susan Love’s Breast Book, a book written in
English for the lay person that is a wealth of
information on breast cancer diagnosis and
treatment.
Imagine how it would be to approach coping
with just the medical issues raised by a breast
cancer diagnosis without a person like Debby
available to you. And I can assure you that, in
most places, including San Francisco, there is no
systematic way for women who are newly
diagnosed to get access to people like Debby. Or
imagine that your primary language is Spanish,
Tagalog or one of the 44 Asian languages spoken
in the Bay Area, but the only informative book
available is in English. Or imagine that you can’t
read at all, in any language. How desperate or
helpless or hopeless would you feel? How likely
would you be to diligently pursue treatment?
The care I received (and continue to
receive) makes it clear that resources are
available. The challenge we face is to make
sure that quality care is equally available to all
women, without respect to income, and with
proper respect for differences of language and
culture. Some simple steps could start us on
the road to meeting the challenge.
◆
¿Habla usted español?
BCA’s Spanish-language newsletter, Saber Es
Poder (Knowledge Is Power), is published
two times a year. Past issues are archived at
www.bcaction.org/espanol.
BCA mails single and multiple copies of
Saber Es Poder to individuals and institutions
around the world. If you would like to add
yourself or an organization to our mailing list,
please contact Brenda Salgado at
bsalgado@bcaction.org, 415/243-9301, ext.
14, or (toll-free) 877/278-6722.
Through a public-private partnership,
methods could be developed for
empowering people in their dealings
with the health care system on breast
cancer issues. To start this process, a
series of one-day meetings could be
convened, bringing together the
community of people and organizations
working on breast cancer screening and
treatment access to define the issues,
brainstorm approaches and outline
programs.
◆
◆
Advocate-navigator programs need to be
established at each institution where
women enter the health care system to
deal with diagnosis and treatment. All
advocates and navigators could be given
online access to resource information on
breast cancer.
Public service announcements for radio,
television, and bus shelters could be
devised in a variety of languages that tell
people where to call if they need
screening or treatment, and what
payment resources are available.
These are a few ideas, but there are
certainly others, and we must begin. More
women are being diagnosed every day. ◆
An Expression of Our Gratitude
SPECIAL THANKS TO:
◆ Our fabulous office volunteers and interns: Vincent (Ming-Hsin)
Chua, Keith Clarkson, Caren Cummins, Carol Fong, Melinda Garay,
Darcy Hanson, Shannon Myers, Radhika Nayak, Lois Pickett, Jenna
Richardson, Ye Ye (Jo Ann Smith), and Marilyn Zivian
◆ Christine Carrier for donating a booth to BCA at the Tracy
Women’s Forum
◆ Barb Jarmoska for raising funds for BCA on her bike trip
◆ Cheryl Swift for organizing a walk to benefit BCA at Whittier
College
◆ Rachel Church for helping out at the Bay Area Labyrinth walk
◆ Everyone who paddled to raise funds for BCA in Support
Strokes
◆ Dorian Solot and Marshall
Miller for donating proceeds from
the sale of their “I Love Female
Orgasm” T-shirts and for spreading the
word about BCA on college campuses
throughout the U.S.
◆ The Bay Area Women’s Music Collective
for donating the proceeds from their
WomenROCK event to BCA
◆ We recently bid farewell to two staff
members: Sarah Lightfoot and Alex
Momtchiloff. We thank them for their
many contributions to BCA and wish
them well on their respective journeys

Breast Cancer Action June/July 2006 7
Biotech Therapy Pricing—A New Barrier to Access to Care
In articles that ran, appropriately enough,
on the business pages of newspapers
recently, several pharmaceutical and
biotech companies—including Merck and
Genentech—announced their intention to
price their drugs according to their value to
patients. This new pricing approach, which
we at BCA are calling “social value
pricing,” basically involves pricing their
drugs on the basis of, among other things,
on 1) what the market will bear and 2) the
company’s interpretation of the drugs’
perceived value to patients and society.
Susan Desmond-Hellman, president of
product development at Genentech was
quoted in a February 15, 2006, New York
Times article as saying that the company
prices its biotech drugs by ‘’the value of
innovation and the value of new therapies.’’
Herceptin, a Genentech product
that is a breakthrough for some women
with HER2-positive breast cancer, costs
around $48,000 per year in the United
States. Avastin, an anti-angiogenesis
cancer therapy approved for colon cancer
and soon to be approved for breast cancer
is expected to be priced, for breast cancer,
at $100,000 a year.
In the United Kingdom, where
Herceptin has just been approved for
patients in the national health care system,
the annual cost of the drug will eat up onequarter
of the national bill for cancer drugs.
That’s just one drug. And there is much
talk in the scientific cancer meetings world
of the value of combining biotech therapies
to achieve better outcomes.
BCA believes that Genentech, which is
a leader in so many things in the cancer
world, should take leadership in the fair
pricing of its cancer therapies. Doing so
would assure that everyone who might
benefit will be able to get needed drugs,
and that the already tottering health care
system will not completely be bankrupted
by the cost of emerging biotech therapies.
If you are interested in working
with BCA on this critically important
issue, please contact BCA’s community
organizer, Pauli Ojea, at 415/243-9301,
ext. 11 (toll free 877/278-6722) or
pojea@bcaction.org.
— Barbara Brenner
Find Your Own Way of Giving
Unlike most other national breast cancer
organizations, BCA does not accept
funding from corporations that profit from
cancer—including pharmaceutical and
health care companies—or from
government sources. This protects our
status as the leading watchdog
organization for accurate and unbiased
information about breast cancer, even
when the truth doesn’t suit the corporate or
political agenda. It also means we depend
on you: More than half of our income
comes from individuals. Your gift of $50,
$100, or more helps make our work
possible. Here are some ways you can
help BCA:
◆
Host a fund-raiser for BCA. Plan a
house party or other benefit event and
help spread BCA’s message in your
community. We’re happy to discuss
ideas with you, and we have materials
and information on our web site to
help you plan your event. Visit
www.bcaction.org/membership; click
“Fun With Fundraising.”
◆
◆
◆
Make an ongoing commitment to give to
BCA in monthly installments, and join
the Susan Stone Circle, named in
memory of a beloved BCA board
member. A monthly payment of
$10, $25, or $50 gives us
wonderful and predictable
support with minimal shock to
your budget.
Support businesses that support
BCA. For a list of companies that
donate proceeds from the sale of
their products or support BCA in
other ways, go to www.bcaction.org
/BusinessSupport.
Tell your friends about BCA! You can
help BCA to widen our network of
supporters by sharing our materials with
your relatives, friends, and colleagues,
and telling them about our work. We will
gladly send an information packet to
someone who you think might like to find
out more about us.
◆
◆
Donate your used vehicle to BCA
through Vehicle Donations to
Any Charity (VDAC). Call VDAC at
1-866/332-1778, or learn more at
www.bcaction.org/donate.
Remember BCA in your will, and join
the Elenore Pred Circle. If you are
planning your estate, consider making
an investment in a future without breast
cancer through a bequest or charitable
trust gift to BCA.
For more information about any of the above options, contact Eleanor Rouse, BCA’s development director,
at erouse@bcaction.org or 415/243-9301, ext. 15. Learn more online at www.bcaction.org/donate.

8 June/July 2006 Breast Cancer Action
… Universal Access to Care
continued from page 1
Access to Care: The Numbers
grow up without vaccinations, medical
treatment when they are sick, and regular
checkups to assess their health, future
generations will pay the cost.
How Does the U.S. Stack Up Against
Other Countries?
A Commonwealth Fund study on health
systems around the world found that the
United States spends more on health care
than any other industrialized country and
spends the highest proportion of its Gross
Domestic Product on health care. 7 Health
insurance premiums have been increasing for
years, much faster than inflation and wage
increases during the past four years. Despite
all we spend on health care, the United States
has the seventh-highest infant mortality rate
of the 30 most industrialized countries and
ranks 37th in a World Health Organization
assessment of health systems.
The United States is the only wealthy,
industrialized nation that does not have
universal health care coverage. And many
other countries fare better than us on health
outcomes. What are we doing wrong here?
Dr. Alberto Manetta, a professor at the
College of Medicine at the University of
California at Irvine, makes an interesting
analogy to the U.S. auto industry in the
1960s. Power and speed became top design
concerns of U.S. automakers, and many
thought our auto industry was the best in the
world at the time. But U.S. design efforts in
efficiency and economy lagged far behind
other countries, and as a result, we are now
◆
◆
◆
7 million Californians are uninsured. Millions more are underinsured.
In 2004, 20 percent of California’s uninsured worked for large employers with at least
500 workers.
Latinos are more likely to be uninsured than other ethnic groups, and about 2.5 times
as likely as whites.
◆ In 2001, people with cancer in the U.S. had average medical debts of $35,878.
◆
◆
◆
In a nationwide study, nearly two-fifths of adults who lacked health insurance for a
year or more reported not being able to see a physician when needed in the past
year due to cost, and nearly 70 percent of those in fair or poor health reported such
barriers. These barriers were greatest for women, blacks, the unemployed, and those
with low incomes.
A study by researchers at Harvard Medical School found that health care
bureaucracy cost the United States $399.4 billion in 2003.
The World Health Organization ranked the U.S. health care system 55th for fairness.
References:
Health Care for All—California. Health Care Crisis. www.health careforall.org/healthcare_crisis.html
California Health Care Foundation (2005). Snapshot: California’s Uninsured.
Consumeraffairs.com (2005). Medical Bills Leading Cause of Bankruptcy, Harvard Study Finds.
Retrieved June 15, 2006 from http://www.consumeraffairs.com/news04/2005/bankruptcy_study.html.
John Z. Ayanian, et al., “Unmet Health Needs of Uninsured Adults in the United States," JAMA 2000;
playing catch-up. When the oil shortage of
the 1970s hit, and gas prices soared, many
could no longer afford to drive cars with poor
gas mileage. This is even truer today than it
was in the 1970s.
Similarly, many in the United States
currently think ours is the best health care
system in the world. Yet we spend more and
often get less. We are not necessarily seeing
more or better services. A false sense that we
Deficit Reduction Act Threatens Access to Medicaid
At press time, BCA received word that, as of July 1, 2006, any U.S. citizens seeking
Medicaid services will be required to provide proof of citizenship, under the so-called
Deficit Reduction Act. Current enrollees will also have to provide documentation when
they renew their eligibility—which happens yearly. The primary documents accepted to
prove citizenship under this law are a passport, a birth certificate, or a certificate of
naturalization. These requirements do not apply to noncitizens in those states that
provide Medicaid coverage. BCA is strongly opposed to this measure, which was signed
into law at the federal level in February 2006. The law will create additional hurdles to
obtaining health services and care for low-income people and seniors around the
country. The law affects not just new Medicaid applicants, but also the 51 million current
enrollees, who may need to renew their eligibility within the next year. BCA will report on
this issue in more detail in a future issue of the BCA Newsletter. For more information on
the topic, visit www.familiesusa.org.
have the best system should not keep us from
being innovative and designing an improved
health care system that serves all of us. All the
other nations with universal health care can
serve as a model for creating the very best
universal health care system right here in the
United States.
Finding a Solution: Access for All
Breast Cancer Action is supporting SB 840,
the California Health Insurance Reliability Act
(CHIRA), authored by state Senator Sheila
Kuehl (D-Santa Monica). This bill would
provide fiscally sound, affordable health
insurance coverage to all Californians, provide
every California resident the right to choose
their own physician, and help control
increasing health-cost inflation.
The plan would involve no new
government spending on health care. The
health care system created would be paid for
by federal, state, and county monies already
being spent on health care, and by affordable
premiums to the state that replace premiums to
insurance companies, deductibles, out-ofpocket
payments, and co-pays now paid by
continued on page 9

Breast Cancer Action June/July 2006 9
Telemammography—We’re Not There Yet
By Andrea Mulrain
Iread with interest Lauren John’s article
“Digital Mammography—Who Needs It?”
(BCA Newsletter #90, February/March
2006), 1 as there are some striking similarities
in our breast cancer stories. I, too, am a Long
Island survivor who was diagnosed relatively
young (at age 33 in 1999) and who relocated
from the East Coast to the West Coast. As a
premenopausal woman with very dense
breast tissue, I’d been a good candidate for
digital mammography since its inception in
2000. Having recently moved to the Pacific
Northwest, I sought out one of only four
facilities offering digital mammography in the
Seattle area. When an abnormality appeared
on the films and a subsequent ultrasound
proved inconclusive, I was asked to have all
of my previous films duplicated and sent
from New York in order to make the proper
comparisons. Naturally, I inquired about
obtaining the films electronically, and was
told by both medical facilities that it simply
wasn’t possible to have digital mammography
films transmitted that way.
This came as quite a surprise as I had
always assumed that one of the key
advantages of digital films was ease of
transmission. Further investigation into the
matter confirmed that, contrary to what we’ve
been led to believe and despite countless
technological advances made in recent years,
we still have a long way to go before digital
mammography machines can actually talk to
each other. In fact, most hospitals and clinics
cannot transmit data within their own
systems, let alone exchange it between two
separate facilities. This incompatibility
problem is due to the high resolution of the
films and FDA standards, which are set very
high for mammography. So, as it turns out, e-
mailing mammogram images is not—as I’d
hoped—as simple as e-mailing a picture from
a digital camera to a friend.
While researching the topic of
telemammography, I came upon a recent
study presented at the Radiological Society of
America’s conference in November 2005 by
Alan Melton, assistant clinical professor of
radiology at Columbia University Medical
Center. 2 Melton’s research concluded that it
was possible to transmit digital
mammography films via the Internet in less
than one minute without losing any
resolution or accuracy. The study involved
constructing an elaborate workstation in
Melton’s home to test transmission of digital
films from his clinic in New York to his
residence in Connecticut. It took weeks of
trial and error and a host of technical experts
to set up an intricate system with the proper
security, firewalls, and all of the associated
interconnecting components that would allow
him to make the transmissions. Only this
highly specialized scenario enabled him to
achieve the goal of transmitting the films
quickly and without compromising the high
resolution required to read mammography
images.
While this is encouraging and partially
good news, it is disappointing to learn that
telemammography is yet another modality
that women living with and at risk for breast
cancer can only hope to benefit from in the
future. For now, there is one other option—
www.myNDMA.com—the first and only
national database that allows patients to
archive their digital medical records and have
them accessed and interpreted by doctors in
any location. Membership is just $14.95 per
year, which seems a very small price to pay
for a service that could prove so invaluable.
We can only hope that the results of
Melton’s study will serve as a catalyst for
further technological advances so that
telemammography can be implemented on a
widespread national level in the not too
distant future. ◆
1 The article is available online at
www.bcaction.org/newsletter.
2 The November 28, 2005, presentation “Successful
Long Distance Transmission and Validation of
Digital Screening Mammograms Utilizing Broadband
Internet” is available online at www.rsna.org
/rsna/media/pr2005/internet.cfm.
… Universal Access to Care
continued from page 8
employers and consumers. It would eliminate
waste by consolidating health care into one
comprehensive insurance plan, saving the state
and consumers billions of dollars each year.
The guiding principle of Breast Cancer
Action’s policy on health care is the creation
of solutions that will ensure universal access
to quality health care for everyone in this
country. As an organization dedicated to
serving as a catalyst for the eradication of
breast cancer through outreach, education,
and public policy advocacy, BCA urges you to
support efforts that expand access to quality
health care for all U.S. residents. ◆
TAKE ACTION: To help get SB 840 passed
in California, or to get connected with health
care advocacy in your state, contact Brenda
Salgado at bsalgado@bcaction.org or (toll
free) 877/2-STOP-BC, ext. 14. For
information on access to care issues across
the country, visit www.familiesusa.org. BCA’s
policy on access to care is available online at
www.bcaction.org.
Brenda Salgado is BCA’s Program Manager.
1 Harvard Medical School Press Release, “Illness
and Medical Bills Cause Half of All
Bankruptcies,” February 2, 2005.
2 Families USA, “Paying a Premium: The Added
Cost of Care for the Uninsured,” June 2005.
Available at www.familiesusa.org.
3 Kaiser Family Foundation Fact Sheet, “Covering
the Uninsured—Growing Need, Strained
Resources,” November 2005. Available at
www.kff.org/uninsured.
4 Kaiser Family Foundation, “The Uninsured: A
Primer. Key Facts About Americans Without
Health Insurance,” January 2006.
5 Institute of Medicine of the National Academies,
“Insuring America’s Health: Principles and
Recommendations,” January 2004.
6 Harvard Medical School Press Release, op.cit.
7 The Commonwealth Fund, “Multinational
Comparisons of Health Systems Data,” October
2002.

10 June/July 2006 Breast Cancer Action
Donations in Honor
BCA gratefully acknowledges donations made in honor of the following individuals between December 27, 2005, and March 15, 2006.
Darcy Abrahams
from Lynda and Michael Gilgun
All Women
from Stephanie Russin
Traci Alves
from Cosette Tsouras
Joyce Ambrosini
from Jan Ambrosini
Mary Ashley
from John Ashley
Barbara Brenner
from Anne Josephson
from Susan Laskin
from Laura Nathan
Barbara Brenner’s 10th
Anniversary with BCA
from Roz Ehudin
Barbara Brenner
and Susie Lampert
from Sara Markel
and Lloyd Altman
Diane Carr
from Mary Anne McGuire-
Hickey
Linda Copeland-Fields
from Jacquette Ward
Becky Dunn
from Catherine Prevost
East Contra Costa Survivors
from Mary Lange
Bobbie Erickson
and Karin Erickson Stevens
from Cheryl Stevens
My daughters, Gillian
and Alana Ferguson
from Susan J. Ferguson
Barbara Fuchs
from Sandy and Rick Stober
Maurice Galante, MD
from Sadja Greenwood
Mimi Gray
from Victoria Gray
Vicki Green
from Alison Braverman
Hope, Jane, Alison and
Lynanne
from Jill Israel
Barb Jarmoska’s Bike Trip
from James Armstrong
Associates
from Kenneth Billman
from Therese L. Bowen
from David Bumgardner
from James Casale
from Susan and
T. Michael Champion
from Fullis Conroy
from Fiona Conroy
from David Franz
from Dominique Gardner
from Gaunt Family Dentistry
from Leona Lundrigan
from Doris and Harry McCoy
from Joan M. McKee
from Patricia G. McKernan
from Eleanor S. Mellish
from B.J. Natell
from Janie Quinn
from Karen Salley
from Linda S. Schramm
from Ellen Sue Spicer-Jacobson
from Sandra Spiro
and Nancy Wentzler
from Judy and Thomas Stanley
from Brenda Valen
from Mary Ann Wager
from Carol and
Raymond Wollam
Jerry
from Peggy Kroutil
Sherry Jordan
from Karen Samuels
Caroline Kettner
from Gail Phillips Bucher
and Edward Bucher
Kendra Klein
from Nancy and Roger Klein
Joan Levin
from Jacquie and
John Pickering
Robbie Lipsman
from Paulee Lipsman
Carol Lynch
from Ellen Lynch
Renetia Martin
from Jeffrey Benevedes Moulton
Christina Middlebrook
from Millie Fortier
Randy Milden
from Deborah L. Smith
Rachel Morello-Frosch
from Anonymous
Lori Morton
from Robert Morton
My many friends
from Nancy Mazza
Myself—20 years of recovery
from Carole Poyourow
Myself
from Marilyn Stolove
Myself
from Veronica Uytana
Nona
from Sandy and Rick Stober
Susan O’Connell
from Michelle Mercer
and Bruce Golden
Debbie Pierson
from Sandy and Rick Stober
Marlane Prince
from Karen Samuels
Louise Flesh
from Gayle Roberts
Nancy Schumacher
from Betsy Allen
Ellen Schwerin
from Diana EtsHokin
Lisa Simpson
from Anonymous
Dorian Solot
from Suzanne Miller
and Walter Vom Saal
Estelle Steinberg
from Marilyn and
Roger Gallegos
Karen Strauss and Ruth
Borenstein, both wonderful
daughters
from Muriel and
Sheldon Strauss
Trudi Sturgeon
from Leslie Stone
and Shirley Buss
Superfans
from Lawrence Brenner
and Roderic Hooks
Those suffering
from Fran Shapiro
Tori
from Lauren Kelley
Barbara Tyler
from Joan Walsh
Yvonne Viera
from Barbara Sarah
Janet Young
from Cheryl Kramer
Jane Zones
from Arlyn Zones
and Donald Walker
T
here are many ways to give
to Breast Cancer Action,
and we are grateful for every
contribution. For ideas on
finding your own way of giving,
see page 7.

Breast Cancer Action June/July 2006 11
Donations in Memory
BCA gratefully acknowledges donations made in memory of the following individuals between December 27, 2005, and March 15, 2006.
Katie Allen
from Margaret Rossoff
Joyce Ambrosini
from Margaret Geneva Langston
Janice A’ness
from Francine A’ness
and Douglas Moody
Dorothy Hood Beimfohr
from Alan Beimfohr
Mary Jane Blair
from Corbett Shinn
from Nikki Riedt
Sylvia Bonnell
from Fraser Bonnell
Patricia Irene Castillo-Filip
from Josephine Lott
from Virginia and Robert Lamb
Florence Higgins Cooper
from Dee Atkinson
Dawn
from Esther and
Kenneth Cooperman
Debra Doherty
from Brian McGuire
Sue Ferguson
from Ramona L. Doyle
Marilyn Galatis
from Patricia Campbell
and Tish Sprague
Iris Goldsmith
from Katrina Cabral
Cindy Grant-Monroe
from Rod Riggenbach
Mary Hackney
from Helene Wenzel
Sarah Harrah
from Amy Skewes-Cox
Judy Havey
from Mary and Jay Hosler
Jane Benedict Hawley
from Diane Ehrensaft
and Jim Hawley
Julie Hendry
from Lisa and Brian Olson
Helen Hess
from Fiona Conroy
from Fullis Conroy
Sara Hoffman
from Linda Handschu
Carmel Jimenez
from Lynda and Michael Gilgun
June Jordan
from Frances Reid
Claudia King
from Christine E. Nelson
Judee King
from Kathleen and
Ralph Harms
Judith King
from Brian McGuire
Gail Lacatena
from Sandra Gracia
Nancy Leventhal
from Robert Leventhal
from Karen Mack
from Cathy Pucher
from Patricia Campbell
and Tish Sprague
Alicia Maddocks
from Rocky L. Schnaath
and Byron S. Johnson
Esther Madriz
from Suzie and Piri Thomas
Margaret Mann
from Debra Wuebker
Cynthia Marano
from Judy Patrick
Andrea Martin
from Barbara J. Meislin
Jane Walker Milburn
from Melissa and
Thomas Wooten
Gail Minsky
from Betty Bleicher
and Paul Minsky
from Greta and Mert Cramer
from Wendy Gorevitz Boswell
from Jill Hayes
from Nina Kleiman
from Marilyn and
Stephen Monsein
from Sara Jane Moss
from Paul Sheren
Josepha Mosely
from Rocky L. Schnaath
and Byron S. Johnson
Patricia Murray
from Marjory Harris
Tanya Neiman
from Cheri Bryant
Rosalie A. Palmer, my mother
from Jill Worrall Pomnichowski
Florence Peshkin
from Murry and Ruth Fischer
Elizabeth Polt
from Anonymous
Elenore Pred
from Sylvia Mitchell
from Millie Fortier
Anne Reiff
from Coral Reiff
and Isabel Francis
Ilene Rockman
from Fred Gertler
Julie Farkas Rodbarry
from Cynthia and
David Fodroczi
from Gertrude Fodroczi
from Pamela Jo and
Kim Trinkley
Brenda Roth
from Miye Goishi
and Dara Schur
Anne Sachs
from Marilyn and Morris Sachs
Lina Santos
from Anonymous
Sally Shankland
from Sylvia De Trinidad
Norine Smith
from Susan Dinkelspiel Cerny
Lurene Smith
from Joana Ramos
Susan Stone
from Ellen Schwerin
and Aman Daro
Barb Tillotson
from Ronald Kehoe
Janina Tobin
from Amy Skewes-Cox
Are You Moving?
Don’t leave the BCA Newsletter behind! Please let us know your new address so we can continue to send you breast cancer
news and analysis that you won’t find anywhere else. E-mail sharding@bcaction.org or (toll-free) 877/278-6722.

BREAST
CANCER
ACTION
55 New Montgomery
Suite 323
San Francisco
California 94105
Non-Profit Org.
U.S. Postage
PAID
San Francisco, CA
Permit No. 2500
Return Service Requested
Read about Universal
Access to Care
see page 1
Resources
National Organizations:
Breast Cancer Action
415/243-9301
877/2-STOP-BC (toll-free)
www.bcaction.org
Mautner Project for Lesbians with Cancer
202/332-5536
www.mautnerproject.org
National Latina Health Organization
510/534-1362
www.latinahealth.org
National Lymphedema Network
800/541-3259
www.lymphnet.org
National Women’s Health Network
202/347-1140
www.womenshealthnetwork.org
Y-ME National Breast Cancer Organization
(referrals to local support groups)
800/221-2141
www.y-me.org
Patient Advocate Foundation
(insurance issues)
800/532-5274
www.patientadvocate.org
Richard & Annette Block Cancer Foundation
(free second opinion and peer referral)
800/433-0464
U.S. Government:
National Breast and Cervical Cancer
Early Detection Program
(free or low-cost mammograms)
888/842-6355
www.cdc.gov/cancer/nbccedp
Information on breast cancer/clinical trials
sponsored by the National Cancer Institute
800/4 CANCER (800/422-6237)
www.cancernet.nci.nih.gov
Information on adverse reactions
to drug therapy
800/FDA-1088 (800/332-1088)
www.fda.gov
Tell Washington
White House Hotline
202/456-1111
House & Senate Main Switchboard
202/224-3121
Additional Resources:
Medical Complaints
Medical Boards (selected states)
www.docboard.org
For Help on the Final Journey
Hospice Education
800/331-1620
www.hospiceworld.org
San Francisco Bay Area:
Charlotte Maxwell Complementary Clinic
(for low-income women with cancer)
510/601-7660
www.charlottemaxwell.org
Circulo de Vida (for Latinos with cancer)
415/648-9423
www.circulodevida.org
Community Breast Health Project, Palo Alto
650/326-6686
www.cbhp.org
Project Open Hand (meals)
415/447-2300 or 510/596-8200
www.openhand.org
The Wellness Community, Walnut Creek
925/933-0107
www.twc-bayarea.org
Women’s Cancer Resource Center, Oakland
510/420-7900
www.wcrc.org
State of California:
California Women’s Law Center
888/774-5200
www.cwlc.org
California Department of Corporations
(HMO complaints)
800/400-0815
www.dmhc.ca.gov
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