Good-bye Port Pie! - Haemophilia Foundation of New Zealand Inc.

Global Feast 

Chistchurch 

page 2 

bloodline 

DECEMBER 2007 

Volume 36 I Number 4 

Good-bye 

Port Pie! 

Parents 

Empowering 

Parents 

page 6 

Benefits 

of HFNZ 

Membership 

page 16

CONTACT DETAILS 

Website 

www.haemophilia.org.nz 

President 

Deon York 

Phone: 021 296 0375 

Chief Executive Officer 

Belinda Burnett 

Phone: (03) 344 5204 

Fax: (03) 344 5206 

Mobile: (027) 282 8332 

National Office 

Clock Tower Building, 

Main South Road, Hornby 

PO Box 16582 

Christchurch 

Phone: (03) 344 5204 

Fax: (03) 344 5206 

info@haemophilia.org.nz 

Northern/Midland 

Outreach Worker 

Helen Spencer 

0508 FACTOR 

Phone (09) 302 2522 

Fax (09) 302 2122 

PO Box 122, Auckland 

Central Outreach Worker 

Drew MacKenzie 

0508 FACTOR 

Phone (04) 905 2857 

Fax (04) 905 2856 

Mobile (027) 273 3443 

PO Box 2151 

Raumati, Kapiti Coast 5255 

Southern Outreach 

Worker 

Colleen McKay 

0508 FACTOR 

Phone (03) 349 8099 

Fax (03) 344 5206 

PO Box 16582 

Hornby, Christchurch 

Editor 

Chantal Lauzon 

Phone: (03) 344 5201 

Fax: (03) 344 5206 

chantal@haemophilia.org.nz 

Welcome to the last edition 

of Bloodline for 2007. The 

last few months of the year 

have had an international 

flavour. 

The 14th Australian & 

New Zealand Haemophilia 

Conference was held in 

Canberra from October 

4th - 7th. As always, this 

event provided the opportunity for people 

with bleeding disorders, their families, health 

professionals and industry representatives 

to come together and share knowledge about 

current and future issues for clinical practice 

and policy affecting the treatment, care and 

educational needs of people with haemophilia 

and related bleeding disorders. 

Each of the Foundation’s regions was 

represented, with 29 New Zealand delegates 

in attendance. A number of our volunteers 

and staff also chaired sessions and delivered 

presentations at this year’s conference. 

You can read more about these inside. This 

month’s Bloodline also features reports from 

all conference attendees. 

Prior to the Australasian conference, Vice- 

President Dave Habershon, CEO Belinda 

Burnett and I attended the World Federation 

of Hemophilia Fifth Global Forum on the Safety 

and Supply of Treatment Products for Bleeding 

Dates to Note 

Disorders, held in Montréal. The forum was 

spread over two days and had a range of 

speakers providing updates on recombinant 

and plasma product cost and usage, inhibitor 

development, national tenders for factor 

replacement therapies and the economics of 

the global market in treatment products for 

bleeding disorders. You can read more about 

this forum in the next issue. 

If you want to know more details about the 

forum’s contents, please contact any of the 

HFNZ attendees. Alternatively, a number 

of the presentations at this forum will be 

made available on the World Federation of 

Hemophilia’s website, www.wfh.org 

I hope you and your loved ones all get the 

chance to relax and unwind over the festive 

season. Try and get some rest over this period 

if you can. 2008 will be a chance to celebrate 

50 years of achievement for the Haemophilia 

Foundation. Stay tuned for more information! 

Thank you to the remarkable work of HFNZ staff 

and volunteers this year; both your dedication 

towards and your hard work on behalf of the 

Foundation is greatly appreciated. 

Merry Christmas! 

Deon York 

President, HFNZ 

What a great year we have planned to celebrate our 50th Anniversary! 

11-13 January 2008 

HFNZ Couples Weekend 

Details to be announced 

Contact your Outreach Worker for info 

25-28 January 2008 

HFNZ Young Families Camp 

Blue Skies 

Kaiapoi, Canterbury 

Contact your Outreach Worker for more info 

15-17 February 2008 

HFNZ Young Women’s Workshop Weekend 

Waihonga Centre 

Otaki Gorge, Kapiti 


29 March 2008 

HFNZ 51st Annual General Meeting & 50th 

Anniversary Celebration 

Christchurch 

25-28 April 2008 

HFNZ Youth Camp 


1-5 June 2008 

Hemophilia 2008 

WFH Global Congress 

Instanbul, Turkey 

7-9 November 2008 

HFNZ Men’s Workshop 


Disclaimer: 

The information contained in this newsletter is not intended to take the place of medical advice from your GP, haematologist or specialists. Opinions expressed are not 

necessarily those of HFNZ. The purpose of this newsletter is to provide a wide range of accurate and timely information on all aspects of haemophilia and related disorders. 

Haemophilia is a dynamic specialty and therefore opinion may change or be varied from time to time. 

Global Feast Christchurch 

The McKay family enjoying the last of the sun. Jayne Sutherland and relatives inspecting some of the artwork. 

On 23rd November, HFNZ National Office and the Southern 

Branch hosted a Global Feast fundraising dinner at Boaters 

Restaurant in Christchurch Town Hall and raised over 

$3,000.00 for HFNZ and Global Feast. 

Nearly 70 members, family, friends and colleagues gathered 

to raise funds to help support people with haemophilia in New 

Zealand and in the developing world. 

Everyone enjoyed a delicious 3-course meal and the chance to 

get together and support the local and worldwide community. With 

the National Council Meeting taking place in Christchurch the 

following day, many members of the National Council were able 

to attend, so this was a great opportunity for the Southerners to 

get to know them better as well. 

In addition to the dinner, a silent auction was held of artwork 

donated from local and national artists. The auction was a great 

success with the 14 pieces all finding proud new owners, and one 

lucky bidder winning a swimming with dolphins cruise courtesy of 

Akaroa Harbour Cruises. 

HFNZ would like to extend a special thanks to the artists who 

donated their time, materials and talent to Global Feast: 

• Angela Laby, Auckland 

(www.freewebs.com/angelalaby/) 

• Emma Beard, Wellington (www.emmalbeard.com) 

• Gabrielle Desley van Bree, Christchurch 

(www.thebigidea.co.nz) 

• Jo Burne, Christchurch 

• Jan Stupples, Christchurch 

• Tania Verrent, Manawatu (www.taniaverrent.co.nz) 

• Rachel van der Monde, Melbourne 

• Sandy Gottermeyer, Ohoka 

• And especially Linelle Stacy - the mastermind behind the idea 

of the auction who generously created 4 of the pieces and 

donated an additional one from her own collection. 

Our sincerest thanks. 

The excellent setting and meals created a relaxed atmosphere. 

Linelle Stacey, our star of the evening, with her painting 

“The Island”, being thanked by Council and CEO. 

December 2007, BLOODLINE 2

Pain is a distressing symptom that can affect people 

with bleeding disorders in a number of ways. Acute pain 

is usually due bleeding into joints muscles. Chronic pain 

is associated with the after-effect of repeated bleeds 

and complications of treatment. 

Given the progressive nature of severe joint damage, pain can 

be challenging to manage. Distinguishing arthritic pain due to 

pre-existing joint damage from acute bleeding episodes may 

be very difficult and pain killers and/or factor replacement 

strategies are often experimental and can be complicated by 

the contraindications of using some medications. Aside from 

treating physical symptoms, the psychological and social needs 

of people with pain must also be taken into consideration. 

This article will discuss common ways of managing both acute 

and chronic pain for people with bleeding disorders. 

Acute Pain 

Pain that lasts only hours or days while the body is healing 

is called acute pain. Haemophilic pain often starts early in a 

child’s life, initially presenting as acute pain due to bleeding 

or to procedures associated with bleed management (e.g., 

intravenous infusions). 

It has been reported that patients experience significant, 

sometimes excruciating, discomfort with bleeding events, 

arthropathy (arthritis), and/or neurogenic pain that causes 

missed days from school or work, exclusion from activities and 

feelings of isolation. All this negatively impacts on their quality 

of life and the lives of their family members. 

The best care for painful bleeding episodes is prompt factor 

replacement. When treated immediately, most people with 

haemophilia can resolve bleeds with a single infusion, often feel 

little residual pain, and get back to a normal routine soon after the 

infusion. In addition to factor concentrates, additional therapies, 

such as RICE (Rest, Ice, Compression, and Elevation) should 

also be used to help control bleeding and speed healing. 

Effective pain relief during this period is also essential, both 

to control the symptoms in the short term and allow other 

3 BLOODLINE, December 2007 

Pain Management 

treatments, such as physiotherapy, as appropriate. Most 

physicians are familiar with acute pain and will prescribe the 

necessary pain medications. Many people with bleeding disorders 

also self-medicate with over-the-counter (OTC) pain medications. 

As there are many different methods of pain relief available, 

descriptions are provided. 

Simple analgesics (pain killers) or non-opioids 

Non-opioids are the drugs of choice for acute pain. 

• Paracetamol: 

Commonly used for mild pain, but can also be beneficial in 

severe pain when used in combination with other drugs. One of 

the great advantages of paracetamol is that it is relatively free 

of side-effects, unless taken in overdose. It should however be 

used with caution in cases of liver damage - a particular concern 

for people who are also infected with hepatitis C. Paracetamol 

is often recommended for treating pain in people with bleeding 

disorders because, unlike NSAIDs, it does not affect the blood’s 

clotting ability. Travel note: commonly known as acetaminophen 

in North America. 

• Non-steroidal anti-inflammatory drugs (NSAIDs) and aspirin: 

These include ibuprofen (Nurofen®), declofenac, and naproxen, 

among others. Despite their efficacy in joint and muscle pain, they 

are best avoided in bleeding disorders. This is mainly because 

they can cause inflammation and ulceration of the stomach, as 

well as affecting the function of platelets, both of which may 

increase the risk of bleeding. 

NSAIDS affect the function of two enzymes in the blood, COX-1 

found in blood platelets and COX-2 found at sites of inflammation. 

No two NSAIDS work exactly the same way and each has slightly 

different side effects. 

Introduced in 1899, aspirin (acetylsalicylic acid or ASA) is the 

oldest NSAID. Aspirin is an effective analgesic but should 

never be used by anyone with haemophilia because it forms 

an irreversible chemical bond with COX-1, preventing platelets 

from forming a platelet plug - the first step in the blood clotting 

process. Aspirin is found in many OTC medications, including 

many that are not for pain. Carefully check the package of any 

OTC medication for the presence of acetylsalicylic acid or ASA 

before trying. Ibuprofen also inhibits platelet activation, but 

much less that aspirin, and the inhibition is short-term, about 

four hours. 

COX-2 inhibitors have only been on the market for a few years 

and were developed to reduce the risk of ulcers caused by other 

NSAIDs. The theory is that by targeting COX-2 they should not 

affect platelet activation or cause gastrointestinal bleedings 

like other NSAIDs. However, due to risks of cardiovascular sideeffects 

some selective COX-2 inhibitors have been pulled off the 

market (i.e. rofecoxib [Vioxx®]). 

There are some situations where the use of NSAIDs could be 

considered but this should be on the advice of the haemophilia 

centre. In these cases, ibuprofen or celecoxib (Celebrex®) for 

short term use are usually preferred. 

Opioids 

Also called narcotics, opioids are usually reserved for chronic 

pain and intense, acute pain. 

Mild opiates, including codeine and dihydrocodeine are effective 

for mild to moderate pain and their efficacy is enhanced by the 

addition of paracetamol. 

More powerful opiates include morphine, diamorphine, 

pethidine and fentanyl. These medications can be administered 

in a number of ways: orally as tablets, intravenous, patches, 

intramuscular injections (best avoided in those with bleeding 

disorder) and Patient Controlled Analgesia (PCA) which allows 

patients to manage their own pain relief intravenously and are 

designed to prevent any risk of overdose. 

The problem with opiates is the side-effects, most importantly 

nausea, constipation, itching and drowsiness - the degree 

varying person to person. Patients are often concerned about 

the possibility of addiction but this is usually not a risk when 

used appropriately for the control of acute of chronic pain. 

Adjuvant analgesics 

This category includes many medications, including some 

antidepressants and anti-convulsants, originally used to treat 

conditions other than pain but now also used to help relieve 

specific types of pain. They can significantly aid in the overall pain 

management of some patients and be used to treat insomnia, 

anxiety, depression or muscle spasms. 

Chronic Pain 

The chronic pain from haemophilic 

arthropathy suffered on a day-to-day 

basis by many people with haemophilia is 

often considered to be the most difficult to 

manage aspect of haemophilia. It is often underdiagnosed 

and under-treated, leaving many to suffer. 

If chronic pain problems are to be prevented, proactive 

treatment and physical fitness should be become a regular 

part of the life. An active approach to pain control, emphasising 

patient empowerment and self help techniques, is recommended 

over more passive pain relief techniques. 

Many people suffering chronic pain describe how it changes 

them. They feel that they are not the person they once were. 

People experiencing high levels of pain tend to be isolated. It 

becomes difficult to accomplish the range of physical actions 

they have been able to do easily prior to their injury. Physically, 

they may not have the energy to do as much as they could 

beforehand and at the same time find their ability to concentrate 

or sustain attention is severely reduced. They can be distracted 

by their pain, often unable to be comfortable in any position. 

This means that they are often not able to socialise as much, 

avoid doing many activities they once found enjoyable and tend 

to keep to themselves. 

Patients can do the round with a wide range of medical specialists 

who do their best but, by definition, those experiencing chronic pain 

are in pain that is not substantially helped by medication or other 

means. This means that the chronic pain sufferer can become 

increasingly desperate, frustrated and at times, angry with the 

health professionals trying to help. The medical specialists in 

turn try an increasingly stronger regime of medications in which 

it is hard to achieve a balance between pain relief, side effects, 

loss of quality of life and feeling like a zombie. 

According to a recent report from the National Health Committee 

on Meeting the Needs of People with Chronic Conditions , 

“Consistent and effective chronic pain management aims 

to: reduce emotional distress, increase functioning and 

independence, minimise use of drugs, promote wellbeing 

through balanced daily activity and prevent unnecessary acute 

episodes and additional consultations. Active patient selfmanagement 

is necessary to evaluate the effectiveness of pain 

relief measures”. 

Other Methods of Pain Control 

For some people, pain can be relieved without medication. 

A multi-disciplinary approach to pain treatment or management 

is increasingly being encouraged, including physiotherapy, 

relaxation exercises, music and family support. 

Physiotherapy 

Good physiotherapy is increasingly being recognised as an 

important addition for chronic problems in relieving joint stiffness 

and pain (and improving muscle strength and endurance), which 

in turn increases mobility. A physiotherapist familiar with treating 

people with bleeding disorders might suggest hydrotherapy or a 

home exercise programme, after a full needs assessment. They 

can also provide advice on how to manage pain during activities 

by pacing oneself or altering the way activities are done. 

TENS machine 

A Transcutaneous Electrical Nerve Stimulator, more commonly 

referred to as a TENS unit and pronounced tens, is an electronic 

device that produces electrical signals used to stimulate 

nerves through unbroken skin. Your physiotherapist 

can show you how to use a TENS machine 

correctly and efficiently. They can provide 

pain relief for 2-3 hours (sometimes 

longer) while being used. 

Relaxation techniques 

Relaxation has become increasingly popular 

as a pain relieving intervention. Relaxation 

techniques can reduce muscle tension and stress 

and therefore chronic pain sufferers who practice relaxation are 

better able to cope with their pain. Increased muscle tension 

can further aggravate chronic pain. Helpful relaxation techniques 

include, but are not limited to: deep breathing, progressive 

muscle relaxation, biofeedback, meditation and yoga. Relaxation 

is a skill which gets better with practice so practice your favourite 

technique regularly. 


Explore new ways to deal with pain 

Distraction and coping techniques 

Distraction techniques aim to get the pain sufferer to focus their 

attention on something other than their pain and may enable 

them to experience somewhat less pain. Distraction could be 

either passive (redirecting the attention), or active (involving the 

person with pain in a distraction task). Distraction interventions 

have been shown to have a moderate beneficial effect on 

children’s distress behaviours during medical procedures. 

Distraction interventions can vary in complexity, including 

music, nonprocedural talk, breathing and imagery exercises, or 

specifically for children the use of a toy, story, or cartoon. 

Imagery 

Guided imagery is the use of relaxation and mental visualization 

to improve mood and/or physical well-being. Imagery is using 

your imagination to create mental pictures or situations. The way 

imagery relieves pain is not completely understood. Imagery can 

be thought of as a deliberate daydream that uses all senses - 

sight, touch, hearing, smell, and taste. Some people believe that 

imagery is a form of self-hypnosis. Certain images may reduce 

pain both during imagery and for hours afterward. Imagery can 

help relax, relieve boredom, decrease anxiety, and help you 

sleep. 

One of the biggest benefits of using guided imagery as a 

therapeutic tool is its availability. Imagery can be used virtually 

anywhere, anytime. 

Arthropathy: 

Chronic arthritis. In haemophilia long term damage due to 

repeated bleeds into the joints. 

Acute pain: 

Acute pain has a crucial function for good health because it 

is a warning of actual or potential physical harm. In situations 

of acute pain the pain usually stops before physical healing is 

complete. 

Chronic pain: 

Traditionally chronic pain is considered as pain that continues 

for more than 3-6 months or which persists longer than the 

time required for healing. More recently the IASP defines 


Terminology 

Complementary therapies 

Aromatherapy, reflexology, acupuncture, 

acupressure and massage can also be 

useful. 

Social Support 

Family and friends also play an important 

role, as a distraction or just a sounding 

board for anxieties. If depression becomes 

an issue, support from a counsellor or a 

psychologist may be available through 

your GP or haemophilia centre. Sharing 

your experience with others can help but 

problems into a better perspective and can 

lead to techniques about changing behaviour through changing 

how you think about your condition. 

Conclusion 

Pain is significant issue in the bleeding disorder community. The 

basic rules of pain control are: 

• Treat the underlying cause effectively and quickly. 

• Give as much pain relief as required to control the symptoms 

- can be done by gradually increasing the strength of the 

medication 

• Investigate complimentary therapies to see if any provide 

additional relief 

Pain management is not just about taking the right painkillers, 

but also about improving quality of life. If you are experiencing 

difficulty managing your pain, ask your GP or haemotologist about 

pain management services or clinics. There are specialists who 

evaluate your individual cases and try to help you come up with 

a plan to reduce the impact of pain on your quality of life. With 

a modern, patient orientated and multidisciplinary approach to 

pain control, it should be possible to achieve rapid and prolonged 

relief of symptoms. 

it as being persistent pain that is not amenable to specific 

remedies and theorists Loeser and Melzack add that chronic 

pain is distinguished by the inability of the body to restore its 

physiological functions to normal homeostatic levels. 

Neurogenic Pain: 

Pain originating in the nerves or nervous tissue and following 

the pathway of a nerve. 

Pain: 

The International Association for the Study of Pain (IASP) 

defines pain as ‘An unpleasant sensory and emotional 

experience associated with actual or potential tissue damage, 

or described in terms of such damage.’ 

Sources: Clement P. Easing the Pain of Inhibitors: Acute Pain. Parent Empowerment Newsletter, August 2007; The Haemophilia 

Society (UK), Pain Management, London, 2005; Abstracts related to Pain Management presented at the WFH Hemophilia World 

Congress, Vancouver, Canada, May 2007. 

Parents Empowering Parents 

By Drew Mackenzie, Colleen McKay and Helen Spencer 

Eight kiwis had the pleasure of attending the first ever 

Parents Empowering Parents (PEP) Train the Trainers 

Programme held outside the United States, prior to the 

Haemophilia Conference in Canberra, Australia. It was 

taught by three enthusiastic, vibrant Americans - Ed 

Kuebler, Danna Merritt and Madeline Cantini to a total of 

20 New Zealanders and Australians. We were extremely 

fortunate to have three New Zealand parents join us 

which made the days much richer hearing their stories of 

parenting children with a bleeding disorder. 

What is the PEP Programme? 

The PEP Programme has been taught in America for over 10 years 

now to hundreds of parents. It is a purpose designed parenting 

course for parents of children with a bleeding disorder to help 

families successfully live with this added challenge. 

The Programme is presented to parents by a Haemophilia Outreach 

Worker and Haemophilia Nurse, together with targeted parents of 

children with a bleeding disorder. This Team approach combines 

the strengths of professional expertise with peer support. It is 

the combination of the facilitation skills of the Outreach Worker 

as Co-ordinator of the Programme, the expert knowledge from 

the Haemophilia Nurse, together with Peer Support provided by 

parents, carefully chosen to be Team Members that makes the 

PEP so successful. 

PEP Programme Goals: 

• To increase the parent’s understanding of their child’s bleeding 

disorder. 

• To provide practical information that the parents can refer to 

again and again. 

• To provide the parent with the skills necessary to effectively 

parent the child with a bleeding disorder. 

• To heighten the parent’s ability to respond objectively and 

consistently to bleeding episodes. 

• To enhance the therapeutic relationship between parents, 

child and treatment staff. 

PEP Programme Description: 

Through a series of ten sessions PEP uses classroom discussions, 

role plays and hands-on exercises to educate parents about the 

types of skills they need for effective parenting. The sessions 

take place during a weekend get-away, offering parents the 

opportunity for intensive, uninterrupted learning. 

So we filled the 2 ½ days with laughter, and learning. We split 

into our teams and learnt, then taught our way through the 

manual. Despite extreme nervousness from all involved at the 

beginning as we understood the concepts behind this amazing 

program we developed the confidence to stand up in front of our 

peers and teach them. 

So with great excitement we are now very much looking forward 

to rolling this program out to all the parents of children with 

bleeding disorders in New Zealand! This will be run on a regional 

basis with the first being held early 2008. So look out for your 

invitation to attend. 

Colleen and Helen with some of the PEP participants from Australia. 

Diana Bell, Drew MacKenzie and Darryl Pollock clearly enjoying the lesson. 

Catriona Gordon, Stephanie Coulman and Helen Spencer 

were among those who participated. 


Argent Hit Hole in One for HFNZ 

HFNZ were most grateful to be the chosen recipient of the Argent Financial Services Ltd 

Charity Golf Tournament for 2007. The event, held Friday 19 October at the Windsor Golf 

Course on the outskirts of Christchurch, raised a generous $10,000.00 for HFNZ. 

The weather turned out to be perfect for golf, with 

the winds that have been whipping the country 

calming down for just the right day. This year, the 

fourth time Argent has run the event, had a great 

turnout with 20 teams of 4 players spending the day 

trying their luck on the greens. Funds were raised by 

Argent through corporate sponsorship of holes and 

team entry fees. 

This is not the first time Argent Financial Services Ltd 

have supported HFNZ. In 2004, Argent purchased 

the Xerox photocopier for HFNZ National Office. 


Belinda Burnett, CEO HFNZ recalls, “When Peter 

rang me to say we had been chosen I was just so 

surprised I asked the first question that popped into 

my head…”Why us?”. He laughed and said, “You 

were so happy to get $1000.00 for a photo copier, I 

couldn’t imagine how much good you could do with 

$10,000.00!” 

Our sincerest thanks to Peter Sullivan, Mark Rippin 

and the rest of the team at Argent, as well as all the 

players for their fantastic effort. The funds will be 

put to great use during the national Newly Diagnosed 

Family Camp due to take place in January 2008 at 

Blue Skies, Kaiapoi. 

Mark Rippin presents 

Belinda Burnett a 

donation for $10,000.00 

on behalf of Argents’s 

Charity Golf Tournament 

Kiwis Step up Reach Out 

Four of our young men were chosen from applicants from 

across the globe to participate in the pilot of Step Up 

Reach Out, an unique international educational programme 

geared to help to build tomorrow’s leaders in the bleeding 

disorders community. What an honour that of a total 15 

participants, Karl Archibald, Stace Hardley, Tama Pene 

and Blair Wightman all hailed from New Zealand. 

Designed by experts at the University of Texas Health Science 

Center, Gulf States Hemophilia and 

Thrombophilia Center (UHTS), Step Up Reach 

Out is sponsored by Bayer HealthCare. The 

two-part program is led by Ed Kueblar, Social 

Worker at the Gulf States Hemophilia and 

Thrombophilia Center (UHTS) and Medical 

Advisor to the Lone Star State Chapter of 

the National Hemophilia Foundation. Ed 

Kueblar also led the recent PEP training in 

Canberra. 

In September, Karl, Stave, Tama and Blair 

flew to San Francisco to attend the first part 

of the training. The other participants hailed 

from the US, Canada, Germany and Spain. 

Over the 3 days, Ed took the group through 

goal setting and leadership building sessions 

to get them thinking about the roles they play 

and how youth can become more involved 

in their communities. His advice covered 

such topics as liaising with government, 

pharmaceutical companies, delegation and 

time management. 

“Firstly, it is an amazing experience to 

have two trips to the United States to 

receive leadership training. I wanted to go 

to learn ways to help lead the haemophilia 

community and learn ways people from 

other countries participate in their local 

haemophilia groups”, remarks Blair on his 

reasons for applying for the program. 

Tama admits that his motivation for applying 

was not as community minded to begin 

with, “I actually didn’t know much about the 

programme prior to leaving, I just wanted 

to go to the states at the time. When we 

got there however, the organisers made 

me realise how fortunate I am in regards to 

having prophylaxis, etc., It got me thinking of 

ways to give back to the people who provided 

this and also the wider community.” 

Together the group went through 

Haemophilia 101- a medical centred session 

where the programme nurse Madeline 

Cantini discussed haemophilia, inhibitors, 

recombinant products and factor storage. 

The participants found this interesting as it covered topics in 

sufficient detail and depth to provide a medical explanation and 

contained really interesting statistics. The kiwis felt proud that 

they actually seemed to have a pretty good handle on the facts 

Karl, Blair, Tama and Stace with Jill Porter at 

Bayer Healthcare plant. 

Future World Haemophilia Leaders. 

Not all work - the guys got the chance to see the 

sights like the Golden Gate Bridge. 

and how treatment is handled in their home country compared 

to some of the other participants. This session generated 

significant discussion amongst the group and they expect that 

it will be expanded during the next session that takes place in 

Texas in February. 

The group also heard from Randy Curtis and Bobby Wiseman 

from the USA who spoke on living with haemophilia and taking a 

leadership role within their communities. The participants found 

in inspiring how much time and effort they 

put in and how much they were able to 

accomplish. 

Another interesting session covered the 

history of haemophilia treatment in the 

United States from the 1940’s to now. It 

really pressed home to the kiwi guys how 

lucky we are with our current treatment in NZ. 

This seminar also considered haemophilia 

treatment in developing countries, a topic 

with which Ed Kueblar is passionate about 

as his Medical Centre participates in a 

twinning program with Chile. 

On the Monday, the group got the chance 

to take a tour of the Bayer production 

plant to see how product is developed. 

After proceeding through increasing 

sterile laboratories, they met with some 

management and scientists who impressed 

them by genuinely being interested in 

hearing the opinions of the attendees. 

They also got a chance to catch up with the 

much missed Jill Porter, who now works at 

the offices in San Francisco. 

The course wasn’t all work though and the 

group got to enjoy some sightseeing and 

shopping (Stace and Tama especially as 

they had an extra few days over there). For 

Blair, the highlight was attending a MLB 

baseball game at Oakland Coliseum and 

embracing the atmosphere. 

“The main reason I wanted to go was to 

get an insight into how haemophilia was 

dealt with on a global scale, to see how 

people help within their communities in 

different countries. It is a once in a life 

time opportunity,” comments Karl. 

The group was given assignments to work 

on over the next couple months, including 

finding ways to becoming more involved 

with their haemophilia foundations. They 

seem to have really taken in on board 

and our Outreach Workers have already 

received several approaches from the 

participants. The group will reconvene in February 2008 in Texas 

for the second part of the programme, which includes presenting 

the projects the delegates have been working on so far. 


Preparing for an emergency! 

Emergencies can occur anywhere, at any time and without 

warning…it is important to be prepared. In an emergency, 

essential services such as power and household water 

supplies could be disrupted and lead to unsafe, unhealthy 

or insanitary conditions. 

In New Zealand, the risks posed by natural and man-made 

hazards are a fact of life. Emergency planning is important for 

everyone, but there may be additional things to consider if you 

or a loved one suffers from a bleeding disorder. This information 

will help you prepare to look after yourself, your family, your 

home, business and community. 

After a disaster 

• Everyone will be affected by a disaster, including the rescuers 

that we rely on. Immediately after an event, emergency services 

and civil defence staff will have to respond to the most critical 

demands. This means they may not get to everyone who needs 

help as quickly as needed. 

• Be prepared to cope o n your own for up to three days, or 

more. 

• It could be several days before services are restored. Even 

then, access may be limited. 

• Damaged infrastructure, such as roads, bridges and rail lines, 

will take longer to restore. 

• This is when you will be most vulnerable. Get ready now to 

protect yourself, your loved ones and your community. 

Household Emergency Plan 

Many disasters will affect essential services and disrupt travel 

and communication with each other. Get your family or household 

together and agree on a plan. You should work out: 

• Where to shelter in an earthquake, flood or storm 

• How and where you will meet up during and after a disaster 

• The best place to store emergency survival items and know 

who is responsible for checking essential items 

• What you will need to have in your getaway kit and where you’ll 

keep it 

• How you might keep your factor if it needs to be cooled 

• How to turn off the water, gas, and electricity in your home or 

business 

• How to contact your local Civil Defence organisation for 

assistance during an emergency 

The location of Community Emergency Centres will be advised 

over the radio. It is also useful to learn First Aid, how to deal 

with small fires and how to evacuate your house in the event of 

a fire. 


Plan to recover after a disaster 

Make sure your insurance cover is adequate and up to date and 

that important documents can easily be gathered if you have to 

evacuate. 

Notification 

Emergencies can happen 

anytime, anywhere. 

After deciding upon meet up locations and contact information, 

create a handy sheet and store it some place the entire family 

can see. It should include: 

In an emergency we may meet and/or leave a message at 

............................................................................................. 

(a friend/family members house). 

In an emergency the friend/relative/caregiver responsible for 

collecting the children from school is: ...................................... 

The person responsible for checking the Getaway Kit is: ........... 

The person responsible for checking the Emergency Kit is ......... 

............................................................................................. 

has haemophillia, their treatment is ........................................ 

and is kept ............................................................................ 

They are able to treat themselves / require skilled assistance. 

The closest haemophilia treatment centre can be contacted at 

............................................................................................. 

Include a plan of your house showing exits, assembly areas & 

where to turn off water, electricity & gas. 

Your Getaway Kit 

In some emergencies, such as a flood or volcanic 

eruption, you will need to evacuate and take your 

Getaway Kit with you. Everyone in the house should have 

a Getaway Kit. This kit should include: 

Family Documents 

• Birth and marriage certificates 

• Driver’s licences and passports 

• Financial information (insurance policies, mortgage 

information, etc.) 

• Family photos 

• Physician’s letter outlining type of bleeding disorder and usual 

treatment protocol 

Personal Items 

• Towels, soap, toothbrush, toothpaste, toilet paper and 

sanitary items 

• Hearing aids, glasses, mobility aids for 

elderly or vulnerable members of your 

household 

• Blankets 

• Baby needs (if applies) 

• Extra clothing 

• Essential medicines or copies 

of medicine prescriptions 

(including factor bag and 

infusion supplies) 

Your Emergency Kit 

In most emergencies you should be able to stay at 

home or at your workplace. In this situation, you may 

have to rely on your Emergency Survival Kit. This kit 

should include: 

Emergency items 

• Torch with spare batteries 

• Radio with spare batteries 

(check all batteries every 3 months) 

• A change of clothes for all family members (wind and waterproof 

clothing, sun hats, and strong outdoor shoes) 

• First aid kit and essential medicines (including factor bag and 

infusion supplies) 

• Blankets or sleeping bags 

• Pet supplies 

• Toilet paper and large rubbish bags for your emergency toilet 

• Face and dust masks 

Make sure you check your 

first aid kit regularly. 

Food and water for at least three days 

• Non-perishable food (canned or dried food) 

• Bottled water 

(at last three litres per person, per day for drinking) 

• Plan how to get water for washing/cooking 

• A primus or gas barbeque to cook on 

• A can opener 

• Check/replace food/water every 12 months 

Supplies for babies and small children 

• Food, formula and drink 

• Change of clothing and nappies 

• Toys or favourite activity 

Place your Emergency Kit somewhere that is easy to get 

to and make sure everyone in your house knows 

where it is kept. If you keep some of your 

Emergency Kit items in the house for 

everyday use, make sure you know 

where to find them quickly when an 

emergency occurs. 

Caring for the sick, vulnerable 

and pets 

If you, or someone in your family 

has a disability, make arrangements 

now for help in an emergency. 

Remember to include your pets in your 

disaster planning. 

Storing water 

Having a supply of water is essential and you need to store 

water for an emergency. You need three litres of drinking water 

for each person per day. You also need about one litre of water 

for each of the following: 

• washing food and cooking for each meal 

• washing dishes after a meal 

• washing yourself (one litre per day for each person) 

Hot water cylinders and toilet cisterns are sources of water. 

Check that your hot water cylinder and header tank are secured 

and avoid putting chemical cleaners in the cistern. Keep a supply 

of household bleach, for disinfecting. 

Drinking water 

To store enough drinking water for three days, prepare six large 

plastic soft drink bottles of water for each person, including 

children. Add some extra for pets. 

For more information, resources and lists visit the Ministry of 

Civil Defence’s website www.getthru.govt.nz 


HFNZ Exercise Competition Update 

The HFNZ Exercise Competition is all about getting out 

there and getting moving. We now have over 60 people 

registered and are showing that having a bleeding disorder 

does not need to be a hurdle to being active. 

Well done everyone! 

The 3rd quarter winner is Paul Dagger of Paraparaumu! Paul 

has increased his physical activity by an amazing 147 % since 

the start of the competition. He said the increase is partially 

due to him adding a weight circuit to his fitness routine and 

deciding to climb the six flights of stairs up to his office several 

times a day instead of taking the lift. Paul was also fortunate 

enough to take off to Rarotonga on a recent holiday, but instead 

of spending the week relaxing in the sun he managed to put in 

17 hours of walking around the beautiful Cook Island. 

Paul attributes his commitment to getting fitter to a general 

improvement in his endurance and he no longer experiences 

the joint niggles that were giving him a few problems in the 

beginning. He has found that his recovery time has also increased 

On 13th September, 7-year-old Luke Eliffe had his Port-o-cath 

taken out at Christchurch Hospital. Here he shares the story he 

wrote on the experience. 

Congratulations Luke! 


dramatically. His advice is that “You have to keep going and give 

new things a try. Ultimately, let your body tell you what you can 

and cannot do - and enjoy it!” 

Paul has won a white and silver 30GB iPod donated by Baxter 

Healthcare. Very styly! Hopefully that should keep him motivated 

to keep up the good work. 

We are heading into the final stretch so keep up the good work! 

Prizes up for grabs include: 

• The most consistent individual 

• The most improved team 

• The Elizabeth Cup Berry Cup for most active region 

Remember everyone can participate - it’s not too late to join and 

help out your region. Registrations are for individual or teams 

of 4. Anyone can register as individuals. Teams must have at 

least one person with bleeding disorder. Contact your outreach 

work who will supply you with an exercise log and the details. For 

every 15 minutes of activity you gain 5 points. 

Region People Results at Results at Results at Total Points 

Registered end of May end of August of November 

Northern 14 5037 4274 4765 14 076 

Midland 13 5297 578 2210 8 085 

Central 25 7397 8932 8200 24 529 

Southern 12 1494 815 10 252 12 561 

Good-bye Port Pie! 

Luke Proudly showing his 

recently removed port. 

In Remembrance…Renée Paper 

Renée Paper, America’s foremost advocate for von 

Willebrand’s disorder (VWD) patients, passed away on 

8 November 2007, at age 49, after complications from 

a tracheostomy. As recently as Saturday, November 4, 

2007, she was being honoured the Special Award for 

Activism on Behalf of Women with Bleeding Disorders 

at the National Hemophilia Foundation’s (NHF) Annual 

Meeting, which she had been unable to attend for 

health reasons. 

Renée was inspired to co-write A Guide to Living with von 

Willebrand Disease with Laureen A Kelley after her long 

journey with VWD that eventually led to a hysterectomy and the 

contraction of hepatitis C. Following her surgery, she made it her 

personal mission to learn everything about VWD and help others 

who share her diagnosis. 

Growing up in Southern California, she was quite shocked 

when she first moved to Nevada to realise there was basically 

no comprehensive care for patients with bleeding disorders in 

that state. She decided to change that situation for herself and 

any other person going through the same difficulties. A certified 

critical care nurse with over 20 years of experience in emergency 

nursing, Renee became the founder and former Executive Director 

of the Hemophilia Foundation of Nevada. 

Renée diligently and persistently took the steps necessary to 

bring about the foundation in Nevada in 1990 and the eventual 

opening of the first federally funded Hemophilia Treatment Centre 

of Las Vegas. This was a dream come true, for Renee and every 

other person affected in the state. The foundation continues to 

Helen Spencer with Renée during 

her 2000 trip to New Zealand. 

proudly works with the treatment centre as a team to ensure the 

needs are met for their bleeding disorder community. 

Renée was also involved with several national organisations. 

She was a member of the NHF Women and Bleeding Disorders 

Task Force and the Blood Safety Working Group. From 1993- 

94 she co-chaired the NHF subcommittee that wrote the NHF 

Bill of Patient Rights and Responsibilities. In 1994, she helped 

found the Citizens for the Right to Know, a network of nearly 

80 organizations representing patients with chronic health 

conditions, ensuring that they had accurate information on 

insurance coverage and benefits. She served on state and federal 

advisory boards for the Maternal and Child Health Bureau, an 

agency of the U.S. Department of Health and Human Services. 

In 1998, she received the National Hemophilia Foundation’s Dick 

James Lifetime Achievement Award for her efforts to improve the 

care for people with bleeding disorders worldwide. 

Renée lectured throughout the world on issues related to blood 

disorders, blood safety, patient rights, patient advocacy and 

negotiating the cost of care. She stressed empowerment through 

education to her audiences. In 2000, she paid a visit to New 

Zealand, speaking on “Women and von Willebrand Disease” in 

Christchurch and Hamilton. 

Renée Paper changed the quality and care of life for people 

with bleeding disorders living in the state of Nevada, and raised 

awareness of VWD and women’s bleeding issues across the 

globe. Thank you, Renée. 


Branch Reports 

Midland 

Midland held its Global 

Feast Dinner on 29 

September 2007 in 

Tirau. We had a group of about 18 from 

all parts of our area and all enjoyed the 

evening. The dairy farmers were brought to 

task about why the housewives amongst 

us were having to pay more for their butter, 

but were assured by the dairy farmers that 

this had nothing to do with their increased 

pay out from Fonterra. It was also pointed 

out that dairy farmers had to pay the same 

amount for the butter from New World 

as the housewives. It was another good 

opportunity for members of Midland to get 

together and enjoy each others’ company. 

Midland Branch Members also celebrated 

their Christmas Family Event early this 

year on the 11th of November 2007. With 

27 Adults and 26 Children attending we 

had fantastic weather and a day full of fun 

and enjoyment. 

Midland’s 

Christmas Picnic. 


Midland choose a lovely 

setting for their picnic. 

Our day started about 11:00am at Te 

Amorangi Museum where our families 

enjoyed rides on mini trains around the 

complex, as well as investigating the 

building and getting a feel for how things 

were for farmers and industrial workers of 

yester-year. The farmers amongst us were 

thankful that it’s not still the same. 

For lunch we left the Te Amorangi Museum 

and ventured down the road to the 

waterfront at Hannah’s Bay. Adults and 

youths enjoyed ball games (and getting 

them stuck in the trees), and there were 

various groups of conversations and 

laughter as families gathered over platters 

of Subway sandwiches, fresh fruit and fizz 

or orange juice drinks. Lunch was topped 

off with a delicious chocolate mudcake 

(purchased from Indigo Café, where we 

had a great adult café evening earlier in 

the year.). 

The weather held out for us till after 

lunch, when we had a few speeches and 

Christmas gifts were handed out. 

Once again, many thanks to the Midland 

Branch Committee. Their commitment, 

support and hard work throughout the year 

have been just fabulous. Looking forward 

to more of the same next year. 

Helen, a huge thanks to you also. Your 

outreach work always goes way beyond 

the call of duty. Please know that we are 

very aware how much dedication you put 

into your work. It is always very much 

appreciated. 

Wishing you all a very happy and fun filled 

merry and joyful Christmas and New Year. 

Midland take a ride together. Happy holidays everyone! 

News in brief News in brief News in brief 

WFH Announces Appointment of Interim 

CEO/ Executive Director 

On 24 September, the World Federation of Hemophilia (WFH) 

announced the appointment of Claudia Black to the position of 

Interim Chief Executive Officer / Executive Director. Ms. Black 

replaces Miklos Fulop who held the position since April 2003. 

WFH was grateful to Mr. Fulop for the contributions that he 

made to the bleeding disorders community during his tenure. 

“Mr. Fulop oversaw the inauguration of their new strategic plan. 

The plan unifies our objectives to achieve its collective vision of 

treatment for all,” stated Mark Skinner, WFH President speaking 

on behalf of the WFH Executive Committee. 

Ms. Black joined the WFH in 1996. In 1999, she was named 

Director of Programs. In this role, she was responsible for 

the WFH country development programs including the Global 

Alliance for Progress project, Twinning, International Hemophilia 

Training Centre (IHTC) Fellowships, International External Quality 

Assessment Scheme (IEQAS), humanitarian aid, and training 

programs for our national organizations. In 2006, she assumed 

the additional role of Deputy Executive Director at which time 

she took on management of the WFH Medical Advisory Board 

and multidisciplinary committees. 

Ms. Black has more than 20 years experience in the field of 

international development, working with various organizations. 

HFNZ congratulates Ms. Black on her appointment. 


ADVATE available in New Zealand 

ADVATE [Antihemophilic Factor (Recombinant), Plasma/ 

Albumin-Free Method], a new purified recombinant FVIII product 

manufactured by Baxter Healthcare is now available in New 

Zealand. ADVATE is made 

without the use of bloodbased 

or animal-based 

additives anywhere in the 

processing. 

Approved by Medsafe 

earlier in the year, 

Pharmac has now given 

approval that all patients 

on RECOMBINATE will 

be able to upgrade to 

ADVATE. These patients will receive a letter from their clinician 

with further details. 

Should you have any questions about ADVATE contact your 

Outreach Worker or clinician. 

All acquitted in Canadian tainted 

blood trial 

On 1 October, an Ontario Superior Court judge acquitted all 

of the defendants in the tainted blood trial of all charges and 

in an extremely rare finding in a criminal court in Canada, she 

effectively declared them innocent. 

“The burden of proof in a criminal case is proof beyond a 

reasonable doubt. To acquit the accused on this basis, however, 

would be to damn with faint praise,” said Justice Mary Lou 

Benotto. “The allegations of criminal conduct on the part of 

these men and this corporation were not only unsupported by 

the evidence, they were disproved,” she concluded. 

The ruling was a stunning loss for the Crown and the Royal 

Canadian Mounted Police, after a nearly 20-month-long trial and 

five-year police investigation that resulted in charges against 

three former Canadian health officials, a U.S. pharmaceutical 

company and one of its former executives. Each were facing four 

charges of criminal negligence and one count of commission of 

a common nuisance related to the HIV infection of four people 

in B.C. and Alberta who received the Armour HT-Factorate blood 

clotting product in 1986 and 1987. Only one of the victims is 

still alive. Armour Pharmaceuticals Co. was also charged with 

violating the Food and Drugs Act. 

The Crown alleged that the defendants were aware of the potential 

risks from the product and did not take the necessary steps to 

protect hemophiliacs before the HT Factorate was recalled by 

Armour in December 1987. 

As the judge read out the acquittals there were audible sighs 

of disbelief from representatives of the Canadian Hemophilia 

Society in the courtroom. 

“We are shocked,” said John Plater of the Canadian Hemophilia 

Society. “We don’t know how she could say their conduct was 

professional or reasonable. She really thought they did a good 

job,” said Plater. He referred to Benotto’s decision as “ludicrous” 

and urged the Crown to appeal. 

Benotto described the tainted blood infections as a tragedy, 

although she rejected the Crown theory that the defendants 

did not act properly in assessing health risks for people with 

haemophilia receiving the blood products. 

One of the defendants, Dr Michael Rodell, former vice-president 

of Armour, said after the verdict that the ruling supports his 

actions more than 20 years ago. “We went with the information 

we had at our disposal at the time. We instituted programs to 

minimize - we couldn’t eliminate - the risks,” he said. 

More than 1,000 people were infected with HIV from tainted 

blood in Canada in the 1980s and as many as 20,000 others 

contracted hepatitis C. 

Source: National Post, 1 October 2007 

Data Released on Menorrhagia in 

Adolescent Patients 

A team from the Mary M. Gooley Hemophilia Center/Lipson Blood 

and Cancer Center in Rochester, New York, recently published 

the results of a study to determine the incidence of haemostasis 

disorders among adolescent girls referred for unusually heavy and 

prolonged menstrual bleeding (menorrhagia). After conducting 

a retrospective, medical record review of 61 consecutive 

adolescent women with menorrhagia, aged 11-19, researchers 

found that 22 (36%) were diagnosed with von Willebrand disease 

(vWD), four (7%) with a platelet function disorder (PFD) and one 

patient with both. 

Overall, more than 40% of patients referred to the center had 

an underlying haemostasis disorder, further confirming the 

prevalence of these conditions nationwide and the need for 

more/additional screening among this population. “Our results 

confirm the previously published data highlighting the importance 

of evaluating adolescents with heavy menstrual bleeding for an 

underlying bleeding disorder,” explained study authors. 

continued > 



The review also detailed symptoms of early bleeding in the 25 vWD 

and PFD patients. A menorrhagic first period was experienced by 

11 (44%); nose bleeds, also known as “epistaxis,” occurred in 

six (24%); easy bruising in eight (32%); bleeding of the gums in 

seven (28%); and excessive bleeding with procedures in three 

(12%) patients. Records indicated that the preliminary referrals 

of these adolescents were made most often by paediatricians 

and gynaecologists, in 11 women respectively. Two patients 

were referred to the center by their dentist and one by her family 

physician. 

In light of the incidence of disorders such as vWD, the authors 

reiterated that haemophilia treatment centers (HTCs) must 

continue to play a decisive role in testing adolescent patients 

with menorrhagia. They also included a caveat - that an HTC 

evaluation must be followed with/by a determination of the best 

possible treatment. “Identification of these patients, however, 

is only the ‘first’ step in the care of these patients,” said study 

authors. To that end, the Mary M. Gooley Center as well as other 

HTCs are actively studying “optimal management” of this patient 

population. 

The study, “The Prevalence of Disorders of Haemostasis in 

Adolescents with Menorrhagia Referred to a Haemophilia 

Treatment Centre,” was published in the September 2007 issue 

of Haemophilia - copies of the paper are available by request to 

your Outreach Worker or info@haemophilia.org.nz. 

Source: Women’s Health Weekly, October 11, 2007 

Toi te Taiao: The Bioethics Council asks 

“Who gets born?” 

Toi te Taiao: the Bioethics Council is taking the Pre-Birth Testing 

debate into the public domain with a new interactive website. 

Pre-Birth Testing touches the lives of many New Zealanders, 

men, women and children. “How safe are pre-birth tests and 

what do they tell us?” are only two of the many questions that 

arise. “Who decides?” and, more importantly, “Who gets born?” 

are questions for everyone. 

Toi te Taiao: the Bioethics Council is encouraging as many people 

as possible to take part in this discussion. You do not need to be 

a research expert in this field - very few people are. You may wish 

to share a personal story or to discuss a particular issue which 

is important to you. You may simply want to see what others 

have written. The important thing is - you can be involved. 

The new website makes it easy for you to find out about prebirth 

testing, share your stories and ideas, and work through 

the issue with others. The online discussion will be running from 

November through until mid December 2007. 

Pre-birth testing is not a “black and white” issue. There are 

no “right” or “wrong” options. However, there are a variety of 

approaches to consider. During this online deliberation, you 

will be asked to consider 4 approaches to pre-birth testing that 

were developed by New Zealanders during a public issue framing 

exercise. The Choice Book which resulted from the pubic framing 

exercises settled on four approaches: 


1. “My Choice, My Right” 

2. “Life is a Gift” 

3. “Tangata Whenua” 

4. “It’s about information, knowledge and public involvement” 

Within these general approaches, issues such as Saviour 

Siblings, Pre-implantation Genetic Diagnosis (PGD) and the 

rights of people with disabilities to be born are raised. You will 

have the opportunity to explore these issues further in online 

conversations with people from diverse backgrounds. Together, 

you will work towards collective recommendations for actions 

that will help shape the government’s direction and policies on 

this issue. 

Visit: http://nzbioethics.dialoguecircles.com/ for more 

information. 

A Dream come True 

The fantastic folk over at the 

Make-A-Wish Foundation have 

been making children’s dreams 

come true for 20 years now, 

and Samuel Clark recently 

benefited from a sprinkling of 

the Foundation’s fairy dust. 

Nine-year-old Sam, who has 

haemophilia and Crohn’s 

disease, had his wish for a 

laptop computer granted this 

past August. His mother Ngaire 

Roe had made a request a 

month earlier through Starship 

children’s hospital, where Sam 

had spent quite a lot of time in 

this past year. 

Make-A-Wish always likes to enhance each wish they make a 

reality. Because Samuel, a Whenuapai resident, is a motorsport 

fanatic his laptop was delivered by New Zealand drifting champion 

‘Mad Mike’ Whiddett. It came as a complete surprise to Sam 

when Mad Mike turned up on the day, and in true Mad Mike 

style, he fronted with a custom printed T-shirt for Sam and even 

offered to give a slide ride in his FURSTY Mazda at a upcoming 

test day. 

Sam was speechless as he opened his other gifts - a printer, 

DVDs and a full painting kit. His shyness didn’t last and he was 

soon asking Mad Mike to take him drifting and telling him stories 

about pouring detergent on his lawn and drifting his tractor. 

Ms Roe says he was ‘beside himself’ with excitement when he 

found out he was going to get his wish. 

“The kids at school said to him: ‘You’re so lucky to get a 

computer’ and he said: ‘Yes, but I would rather have not been 

sick at all and not got one’.” 

“I can’t thank Make A Wish and people who regularly donate 

blood enough,” Ms Roe told the local newspaper 

Benefits of HFNZ Membership 

Being a member 

means great chances 

to get together. 

For some of you it has probably been 

a long time since you first became of 

member of HFNZ, for others you may 

be fairly new to our little community. 

As such, we thought we would take 

the time to review the types of 

membership to HFNZ and the benefits 

of being a member. 

Types of Membership 

Individual Membership - $20.00 per year, 

including GST 

Any New Zealand citizens with haemophilia, 

or the child, parent or guardian, sibling, or 

spouse, of the person with haemophilia, 

von Willebrand’s disorder or another 

inherited bleeding disorder may apply 

as an Individual Member. An individual 

member is entitled to vote during Annual 

General Meetings and Special Meetings. 

Family Membership - $25.00 per year, 

including GST 

Two or more people from a family affected 

with haemophilia, von Willebrand’s disorder 

or another inherited bleeding disorder 

may apply together as Family Members. 

Up to two adults who are part of a Family 

Membership may vote during Annual 

General Meetings or Special Meetings. 

You must be an individual or family member 

to sit on Regional Committees or National 

Council. 

Associate Membership - $25.00 per 

year, including GST 

Any individual, society, association, or 

other body of persons, whether corporate 

or non-corporate which is a non-profitable, 

charitable or welfare organisation, whose 

objects are similar to the objects of HFNZ 

or who work in any way 

for the benefit of people 

with disabilities, may 

apply to be admitted as 

an Associate Member. 

Associate Members are 

not entitled to vote. 

Corporate Membership 

- $50.00 per year, 

including GST 

Any society, association, 

or company or other 

body whether Corporate 

or Non-Corporate who is 

interested in the work and 

activities of HFNZ and 

desires to be associated 

with it, may apply to be admitted as a 

Corporate Member. Corporate Members 

are not entitled to vote. 

Friend of HFNZ - $20.00 per year, 

including GST 

Any person, who is interested in the work 

and activities of HFNZ and desires to be 

associated with it, may apply to the HFNZ 

National Council to be admitted as a Friend. 

A Friend of HFNZ is not entitled to vote. 

Memberships are renewable yearly. 

Members must be financial members for 

the current year in order to vote at the 

AGM and access many of the services. You 

should receive an invoice early each year 

to remind you to renew your membership. 

Benefits of Membership 

The mission of HFNZ is to promote 

excellence in haemophilia care, education, 

advocacy and support. 

HFNZ are here to support people with 

haemophilia and other inherited bleeding 

disorders, their families and relevant 

health care workers through a broad range 

of services: 

Outreach 

HFNZ has three Haemophilia Outreach 

Workers, Helen Spencer (Northern & 

Midland), Drew MacKenzie (Central) and 

Colleen McKay (Southern) who offer 

support and service across New Zealand. 

Our Haemophilia Outreach Workers works 

to support and educate members, provide 

information regarding treatment, lifestyle 

risks and the need for acceptance of 

personal responsibility for care. They can 

also play a special role in the support of 

newly diagnosed families. Haemophilia 

Outreach Workers try to visit each person 

with haemophilia at least once a year, 

with supplementary visits and calls for 

special needs such as hospital inpatients, 

extended periods away from work or 

school, or when confined to home. 

Chances are these are the first people you 

will meet when haemophilia becomes a 

reality in your life and you probably already 

have regular contact with them. However, 

if you do not feel free to contact them with 

any questions or concerns you may have 

regarding your or your child’s bleeding 

disorder. They are here to help. 

Education & Information 

HFNZ have a range of publications and 

brochures available to help you learn 

about and cope with living with an inherited 

bleeding disorder. Topics include: 

• Parenting and Haemophilia 

• Teacher Resources 

• Children’s Resources 

• Treatment Options 

• Hepatitis C 

• Arthritis 

• Psychosocial Issues 

• Physical Activity Resources 

• Von Willebrand’s Disorder 

• Women and Bleeding Disorders 

• Clinical Resources 

These publications are free to HFNZ 

members. Call or email your Outreach 

Worker about the topics that interest you, 

or alternatively you can visit our National 

Office in Christchurch to browse our 

library. 

Programmes 

HFNZ runs a programme of events for 

specific groups of people within the 

bleeding disorder community. Contact your 

local Haemophilia Outreach Worker for 

more information. 

Workshops: 

• Family Camps - Held bi-annually, Newly 

Diagnosed Families Camps bring 

together young families affected by 

haemophilia from all over New Zealand. 

Parents gain strength through knowledge 

and understanding, and look to each 

other for friendship and support. 


Benefits of HFNZ Membership 

The next National Newly Diagnosed 

Family Camp will be held in Kaiapoi (near 

Christchurch) in January 2008. 

Regions often also hold family camps 

of their own yearly or bi-annually. They 

provide a great opportunity to meet 

people sharing the same experience 

across a wide range of ages and who 

live in your region. 

• Teen Camps - An educational and 

recreational weekend camp for boys 

with bleeding disorders aged 10-14 

years. Held every other year, it gives 

boys opportunities to interact and forged 

further friendships. Boys who attend 

Teen camp often return home with an 

increased sense of self-confidence, a 

new-found sense of community, and, for 

many, the ability to self-infuse. The next 

Teen Camp will be held in 2009. 

• Youth Camp - The next step after 

Teen Camp, Youth Camp is a weekend 

programme for youth with bleeding 

disorders aged 15-24 years. Young 

adults affected with a bleeding disorder 

must navigate even more carefully than 

most through certain rites of passage, 

such as learning to drive a car and 

choosing a career. The next Youth Camp 

will be held in April 2008. 

• Young Women’s Workshop Weekend 

- Bring together young women who 

carry the gene for a genetic disorder or 

themselves are affected by one. Together 

they learn, talk - and have a lot of fun. 

The result is greater understanding and 

ability to deal with the physical and 

emotional implication of their disorder. 

Held bi-annually, the next YWWW takes 

place February 2008. 

• Men’s Workshop Weekend - Men’s 

Workshop Weekends bring together men 

with bleeding disorders for a weekend 

retreat of education and recreation. The 

aim is to relax, spend time together and 

to develop a sense of community while 

taking part in a number of activities and 

educational sessions. The next one is 

planned for November 2008. 

Other programmes 

• Swimming/ Fitness Programme - HFNZ 

provides our members with funding for 

swimming lessons and access to local 

pools. Swimming is one of the best ways 

for people with haemophilia to build up 

fitness, endurance and strength. With 

a little effort, people with haemophilia 

can help their bodies cope in a safe 


HFNZ supports swimming programmes for people 

with bleeding disorders of all ages. 

and productive way. All HFNZ members 

with bleeding disorders are eligible for 

the Swimming Programme. Instead of 

swimming, members with moderate or 

severe bleeding disorders may choose to 

have funding towards a gym membership 

to help build those strong muscles or tai 

chi lessons. 

• Supportive Shoe Programme - Due to 

repeated internal bleeds, the joints 

of people with haemophilia are very 

vulnerable to long-term damage. As 

such, proper ankle support is essential. 

To help with this issue, HFNZ offers 

assistance to our members with 

moderate and severe haemophilia in the 

form of shoe vouches. 

Regional Activities 

Each of the four regions has their own 

Committee that organises a variety of social 

and education events for individuals and 

families in their regions. These can range 

from Men’s Breakfast, to Coffee Nights, to 

full family camps. Contact your Outreach 

Worker, local Chairperson or Secretary for 

more information. 

Quarterly Newsletter, 

Bloodline 

Chances are if you are 

reading this you already 

receive Bloodline. We 

feel this best way for 

HFNZ to communicate 

with all our members and 

other interested parties. 

Advocacy 

Advocacy is the act of arguing on behalf of a 

particular issue, idea or person. Advocacy 

is a very successful way of resolving 

complaints. HFNZ can help you represent 

your interests in a medical or social 

setting. An example of a large advocacy 

project has been the ongoing campaign for 

recompense for people infected Hepatitis 

C from tainted blood. 

Educational grant trust 

The Alan Coster Educational Endowment 

Trust aims to promote and encourage 

education and vocational training for 

persons with Haemophilia or inherited 

bleeding disorders in New Zealand. 

To qualify for a grant applicants will: 

• Have haemophilia or an inherited related 

bleeding disorder and be a member or 

parents/caregivers be members of the 

HFNZ. 

• Show a commitment to participation in 

education and/or vocational training and 

to achieve personal goals. 

• Have the support of two relevant 

referees (one of which must support the 

actual application. The other can be a 

character reference). 

• Provide financial information of the 

costs of the project and related ongoing 

expenses. 

• If under the age of 18, have the support 

of parents or care givers. 

• Provide a report on the use of the grant 

within one year of receiving it. 

• Agree to accept a grant or assistance 

subject to terms and conditions* as 

determined by the trustees. 

Visit www.haemophilia.org.nz for more information on 

bleeding disorders, HFNZ news and past issues of Bloodline 


Saturday Afternoon Sessions 

Presidential Summit - Deon York and Gavin Finkelstein 

sessions covering a wide range of subjects. The discussions and 

issues raised from the sessions, where we were, where we are 

now and where we are heading. They also thanked and praised 

the speakers and all of the efforts of the organisers to make this 

conference the success that it was. 

Now to borrow a couple of paragraphs from Deon’s closing 

remarks. 

“Overall, this conference really demonstrates that we are getting 

better at asking the right questions. But, as is often the case with 

rare disorders, studies are often underpowered and therefore 

cannot be conclusive. We have the questions, we now need the 

numbers to produce more studies that can answer many of the 

valid questions. Collaboration between the medical and patient 

community both nationally and internationally is the way forward 

here. 

The unique nature of these conferences being a true mix of health 

professionals and patients makes the prospect of achieving this 

far more viable.” 

In conclusion, my closing remarks as a first time conference 

delegate were that I initially felt out of my depth, especially with 

a couple of the sessions, but I still came away with an increased 

awareness, knowledge and understanding. If this is the case 

with all the delegates from each conference that they attend, 

no matter what role they have in the haemophilia world be it 

researcher, scientist, physician, nurse, carer, patient, family or 

friend, our ability as a group to ask the questions and to move on 

to an improved quality of life will be in good hands. 

19 CONFERENCE SUPPLEMENT, December 2007 

Discussion Panel- Dr Chris Barnes, Dr Kathelijn Fischer, 

Deon York and Prof Albert Farrugia 

Colleen McKay and Drew MacKenzie 

Sunday 

Although the Conference was officially over, Sunday morning 

provided a few more opportunities for sharing and learning 

before all the delegates jetted back home. 

Men’s Breakfast 

By Grant Hook 

During the Men’s Breakfast, we were fortunate to have two 

speakers: Brendan Eagan, Physiotherapist Royal Children’s 

Hospital, Melbourne and Jack Finn, New Zealand Adventurer! 

Brendan spoke on Physiotherapy and Haemophilia as he 

specialises in youth and encourages activities which create 

independence and health. 

A new product which promotes a quicker recovery time after 

exercise is the clothing “skins”. See www.skins.net . 

Skins are body-moulded, gradient compression tights and tops 

which combine sports and medical science, patented design and 

the best in smart fabric technology. Delivering improved blood 

flow and circulation, Skins are scientifically proven to enhance 

your power, endurance and recovery. Ongoing testing of elite 

athletes have proven that Skins give marked improvements in 

reducing the build-up of lactic acid immediately after periods of 

sustained exercise (2 hr and 15 min up to 37%), and allows for 

more rapid return to normal levels (up to 38% at 20 minutes). 

You experience less fatigue, minimise soreness and recover 

faster. 

Skins are scientifically engineered to provide support and muscle 

alignment to the smart-fabric covered area of your body. Skins 

can change the way that you train and play as well as speed your 

recovery. You will feel fresher after heavy bouts of exercise and 

delayed onset muscle soreness (DOMS) which usually occurs 48 

to 72 hours after training or heavy exercise will be minimised. 

When DOMS occurs children are less likely to commit to a regular 

cycle of exercise so it is very important that children understand 

what is happening and how to deal with it. 

As with many children who live with disabilities, parents can 

become overprotective. Encouraging boys to start self treating 

early creates early independence allowing for a more natural 

transition to becoming a young adult. Brendan encourages 

independence in all aspects of care. 

Jack Finn gave a very inspirational talk on his trip to circumnavigate 

the Auckland Islands by kayak, a remote and very harsh 

environment. Jack has mild haemophilia with 9% factor. It was 

very interesting to hear of the support and planning needed to 

achieve his goal. Jack is a very committed person who seeks to 

publicise haemophilia and encourage people with haemophilia to 

set and strive to achieve their goals. 

Jack is giving this presentation throughout the HFNZ regions so 

take advantage of the opportunity to see his presentation and 

meet him! 

Women’s Breakfast 

By Chantal Lauzon 

The women delegates at the conference had a chance to relax 

together during a special breakfast on the Sunday morning. 

Despite the exclusion of the males, the rugby results were still 

the hot topic of discussion at our table. 

Mary-Lou Minty then presented an interesting and colourful 

photo diary of her and her husband Len’s travels to Ghana. The 

couple have twice gone to Ghana to work on a project to provide 

a water well to an orphanage. During each trip they spent several 

months in barren facilities of the charity orphanage which takes 

in street kids and helps provide a safe place for them to grow 

and learn. 

Mary-Lou spoke of how they taught classes, including the basics 

of English, and helped some of the older children prepare for 

exams to attend higher learning. She detailed the humble 

and ramshackle conditions these children live in, but also the 

warmth of all they met and the dynamic woman who founded and 

runs the orphanage. Len has haemophilia and she spoke of the 

challenges the isolated location would have posed in the case of 

a bleed, which they were fortunate not to experience during their 

time there. They continue to fundraise for the orphanage through 

a bakery booth at a market in Canberra and have been able 

to provide the orphanage with a new classroom, a paved play 

field, books and partial scholarships for some of the students 

to further their education. The experience and the improvements 

they have achieved have given her and Len a new inspiration in 

life. 

Workshop: Building stronger 

haemophilia organisations 

Following the breakfasts, a workshop was held for staff and 

council members of the various haemophilia organisations 

present at the conference. Among the varied speakers, two 

kiwis stood out. Steve Waring spoke about how KiwiFirst raises 

awareness and funds for haemophilia in New Zealand. Our Youth 

Delegate, T.A. Stirling also spoke about getting youth involved 

and his vision for a national youth group in New Zealand. 

December 2007, CONFERENCE SUPPLEMENT 20


Hemi Thomas, Chantal Lauzon, 

Lorraine Bishop-Porter and Jack Finn. 

blood products with reliable information to improve the provision 

of health care. By comparing the data collected for the ABDR 

with that of other countries, it is possible to highlight differences 

in international practices and to offer a facility to demonstrate 

improvements in clinical outcomes and quality of life for people 

with bleeding disorders in Australia. 

There are unresolved issues in haemophilia and VWD, such as 

predicting future Factor VIII requirements, optimal management 

of immune tolerisation, Hep C and HIV, joint health and inhibitor 

development to name a few. The ADBR covers all 15 Haemophilia 

Treatment Centres throughout Australia, and the information 

being collected will provide an opportunity for meaningful data 

analysis to assist in resolving such issues. 

The Breakdown of the ADBR register as at 2007. 

Haemophilia A 1406 

Haemophilia B 346 

Carrier HA or HA 256 

Other Factor Deficiency 209 

Platelet Disorder 90 

Acquired inhibitor 26 

VWD 1269 

TOTAL 3602 

The National Blood Authority four years on 

The National Blood Authority was established in 2003 to 

improve and enhance the management of Australian blood and 

blood products. It is responsible for the procurement of and 

tendering for blood products for Australia, negotiates contracts 

and ensures that there is a national approach to supply which 

ensures certainty of supply to patients. 

Having a nationally managed process enables accurate data 

to be gathered on the use of plasma-derived product versus 


recombinant, and the increase of factor generally, with the ability 

to break this information down to each state. There was an 

immediate and obvious benefit to the public when, 12 months 

ago, it became apparent based on previously-obtained data that 

there would be a shortage of plasma-derived factor VIII. The NBA 

were able to work with AHCDO to mange this problem. Part of the 

solution was a unique contractual arrangement for the supply of 

an imported product in the event that it was required. 

The National Blood Authority has put in place a Contingency 

Plan which covers fresh, plasma and recombinant products. 

It provides a national framework for a rapid and co-ordinated 

response in the event of a health crisis. 

The NBA is also working closely with AHCDO to improve the data 

in the ABDR. The intention is to build a system which will enable 

clinicians to better manage the care of people with bleeding 

disorders, support research into bleeding disorders and also 

support the services offered by the Australian Haemophilia 

Foundation. It will also enable the government to better manage 

the product supply. 

For the future the NBA is looking for opportunities to improve 

clinical treatments through the introduction of new products and 

technologies. Some things which are on the horizon are a pure 

VWF product, the development by NovoNordisk of GlycoPEGlyated 

Factor VIIa to prolong half-life and Bayer’s Phase II clinical trial 

HFNZ President and CEO 

discussing important 

foundation affairs. 

for long acting Kogenate. 

Steve Waring, Jack Finn and 

Hemi Thomas enjoying the 

Gala Dinner. 

Blood products for the treatment of haemophilia: 

priorities for government 

Rod Saunders of the Blood and Organ Donation Strategy Section, 

a government department, gave a presentation on the key issues 

and priorities for state governments and the Commonwealth 

(their Federal) Government in particular, with a focus on the 

provision of plasma-derived and recombinant products for the 

treatment of clotting factor deficiencies. 

The objectives of the Australian National Blood Agreement were 

to provide an adequate, safe, secure and affordable supply of 

blood products, blood related products and services and to 

promote the safe, high quality management of these products 

and services. 

A Plasma Fractionation Review has been carried out by a 

ministerial committee headed by Phillip Flood, which reported 

back in December 2006. The Review was able to assess the 

forecasted increasing demand for plasma-derived products 

(Factor VIII, Factor IX, IVIg and Albumin) and give consideration to 

how this increasing demand could be met. The possibility of offshore 

fractionation has been considered but for the time-being 

the status quo (fractionation being carried out in Australia) will 

continue. 

Safety of haemophilia products - keeping ahead 

through regulation 

The final presenter of this session was Professor Albert Farrugia, 

of the Therapeutics Goods Administration, who is clearly wellknown 

amongst members of the Foundation and the medical 

profession. He opened with some comments on what “safety” is 

- the control of risk, rather than the removal of risk because the 

latter is not possible. Patients may be better safeguarded than 

they were fifteen years ago, but the environment in which blood 

is collected is still as unsafe as ever. 

He continued by giving some examples of blood safety measures 

which have been introduced, only to find that there are deleterious 

outcomes - HCV antibody testing resulted in the transmission of 

HCV by IVIg; the heat treatment of FVIII resulted in some people 


developing FVIII antibodies. 

The chronic recipients of blood plasma products are exposed to 

the whole of the blood supply. This can happen in time frames 

which are not covered through current surveillance mechanisms. 

Therefore, Professor Farrugia stated, the possible exposure by 

these patients to new pathogens requires constant vigilance. 

The “safety tripod” is made up of three pillars: selection, testing 

and reduction. The safety tripod for plasma safety has four 

reduction processes. Professor’s point was that the reduction 

of the blood plasma collected has a far greater influence on the 

safety of the end product than the selection or the testing. 

All overseas derived products approved for the Australian market 

by the TGA have a prion (and anti viral) profile which is at least 

equivalent to that of the Australian product. 

Professor Farrugia finished by summarising the issue of plasma 

safety as follows: 

• Plasma derivatives are amongst the mostly highly regulated 

therapeutic goods. 

• Regulatory and industry measures have led to a high level of 

safety in plasma derivatives marketed in the developed world. 

• These measures are all in place for the products marketed in 

Australia, regardless of their source. 

• Issues of safety and efficacy of plasma products will continue 

to engage the regulator. 

Finally, Professor Farrugia acknowledged the work done by the 

National Blood Authority in working with the TGA to improve the 

safety of the blood supply. 

Plenary 4: Conference Closing 

- What about the future? 

By Maree & Shane Fraser 

Dr Scott Dunkley, Royal Prince Alfred Hospital, NSW, chaired 

the session where a panel consisting of: Dr Chris Barnes, Royal 

Children’s Hospital, VIC; Dr Katherlijn Fischer, Department of 

Haematology, UMCU, Utrecht; Prof Albert Farrugia, Therapeutic 

Goods Administration; and Deon York, HFNZ; answered and 

discussed questions from the audience. 

Discussions on products, supplies, perceptions of supply, safety 

of products, costs involved were discussed openly and answered 

by the audience and members of the panel. 

A wonderful closing forum to a great conference! 

Closing Remarks 

By Wayne Hunter 

Reporting on the closing remarks from Rob Christie (VP World 

Federation of Haemophilia), Gavin Finkelstein (HFA President) 

and our very own HFNZ President Deon York, I thought would be 

a piece of cake and even easier when I managed to get a hold 

of Deon’s notes! But, when it came time to put pen to paper it 

wasn’t so easy. Do I just report on what they said or touch on 

each subject that they referred to in their closing remarks? So 

it’s about what they said. All three referred to several of the 



Darryl Pollock, Diana Bell and Drew MacKenzie 

at Conference welcome night. 

This session was informative and of great interest to the 

Australian counterparts! 

For more information please go to www.haemophilia.org.nz 

Attitudes towards and beliefs about genetic testing 

in the haemophilia community - Dilinie Herbert, Monash 

Centre for Ethics in Medicine and Society, VIC 

(Co-Authors: Prof Alison Street, Dr Samantha Thomas, 

Dr Chris Barnes, Ms Julie Boal and Prof Paul Komesaroff) 

Dilinie spoke about how she is currently in her first year of a 

PHD, and that she originally learnt about haemophilia in high 

school. The objectives of her study included consideration of: 

• Haemophilia is not only a disorder of blood clotting factor 

• Genetic testing is a big deal in the haemophilia community 

• The community context is important 

She pointed out that genetic testing is not new and that it is a 

method to screen, select and identify he genetic mutation that 

causes the disorder. 

She spoke of the different ways to perform genetic testing such 

as carrier testing, pre-implantation genetic diagnosis and prenatal 

testing. Attitudes around genetic testing have been studied in 

greater detail for other conditions such as Huntington’s disease, 

cystic fibrosis, deafness and breast cancer. 

The aims of the study were: 

• Clarify the social and ethical implications of genetic testing in 

the haemophilia community 

• Assess the knowledge, attitudes, beliefs and needs of this 

community with respect to genetic testing 

• Identify issues and problems that may arise as a result of 

the introduction of genetic testing into the haemophilia 

community 

The study was qualitative and descriptive. Interviews were 

conducted with 39 participants who were either males with 

haemophilia, female carriers or family members. The results 

have been grouped under four themes: 

• Experiences relating to having a condition of genetic origin 


• Experiences relating to haemophilia itself, including its effects 

and treatments 

• Issues relating to genetic counselling and testing 

• Outcomes and implications of genetic counselling 

The conclusions were that there is strong support in the 

community for genetic testing and proposed uses of testing are 

very variable. Also it was apparent that issues with respect to 

genetic counselling need to be addressed. 

This is a fascinating topic that has relevance for many people in 

the community and the next phase of the study intends following 

people through the genetic counselling and genetic testing 

processes. 

For a more in-depth look at this interesting study you should 

go to www.haemophilia.org.au or email: Dilinie.Herbert@med. 

monash.edu.au 

A retrospective study of the utility of the 1-deamino-8-D-arginine 

vasopressin (DDAVP) trial in the management of patients with 

von Willebrand disorder - Dr Jake Shortt, the Alfred, VIC 

(Co-Authors: Stephen S Opat, Malgorzata B Gorniak, Heather A 

Aumann, Margaret F Collecutt & A/P Allison Street) 

This presentation was aimed more at the medical community 

than the lay person, so I have included the background, methods 

and conclusions from the presentation. The study was however 

very interesting and well presented. For the full study details 

including protocols and results please go to www.haemophilia. 

org.au 

Background: 

• DDAVP secures effective haemostasis in a proportion of vWD 

patients undergoing haemostatic challenges 

• The response to DDAVP is heterogeneous 

• A therapeutic trail of DDAVP is recommended for vWD patients 

prior to invasive procedures 

129 patients were included in a retrospective audit of all DDAVP 

trials for vWD at Alfred Hospital between 1990 and 2006. 

Specific inclusion and exclusion criteria were used. 

Conclusions: 

• A DDAVP efficacy trial is not indicated in severe type 1 vWD 

or type 2A vWD; mild type 1 vWD or an isolated low Ricof 

(although assessment of tolerability is still advised) 

Catriona Gordon and Stephanie Coulman. 

• Testing at 24 hours is indicated for patients with a CR at 1 

hour, to identify the occasional suboptimal responder 

• Measurement of FV111 levels is not required 

• Implementing this testing strategy would reduce the number of 

DDAVP trials performed by 20% 

Micheal Ho, Deon York and Grant Hook 

at the Remembrance Service. 

Blood, toil and tears: clinical and psychosocial 

outcomes over 25 years in patients with 

haemophilia infected with HIV - Dr Mark Polizzotto 

The background to this research is that during the 1980’s 

many patients with haemophilia were infected with HIV through 

contaminated plasma-derived clotting factors. The aim was 

to look at the clinical outcomes in Victorian patients with 

haemophilia and HIV over the 25 years since the first identified 

transmission of HIV. The results were presented in detail in those 

who remained alive in January 2006, and discussion held on the 

introduction of novel antiviral therapies such as enfuvirtide. 

The review ultimately demonstrated the profound impact of HIV 

on the group, the remarkable impact of antiretroviral therapy and 

the personal resilience of group participants. 

Interesting information on the population chosen, mortality, 

progression of illnesses and psychosocial outcomes of survivors 

can be found on the Australian website: www.haemophilia.org. 

au. 

Also covered in the study were the clinical outcomes, therapeutic 

challenges and the potential of new classes of antiretroviral 

agents offering the prospects of improving outcomes for people 

living with HIV. 

Closely linked to this session is the following which is the first 

reported use of enfuvirtide in patients with haemophilia and HIV 

and may give hope to some patients. 


The safety and efficacy of enfuvirtide therapy for HIV 

infection in patients with haemophilia 

- Dr Mark Polizzotto 

Dr Mark Polizzotto introduces enfuvirtide (T20), the first of a 

new class of antiretroviral drugs. The research documents the 

experience with enfuvirtide in patients with HIV and severe 

haemophilia A. Four patients were treated having received 

extensive targeted education on injection rotation and meticulous 

technique. 

The drug was generally well tolerated with minor skin reactions. 

No increase in bleeding episodes was apparent. 

In conclusion, enfuvirtide as part of optimised antiretroviral 

therapy can be an effective, well tolerated treatment option for 

complex patients. 

An in-depth analysis of enfuvirtide patient characteristics, 

tolerability and efficacy can be also found on the site www. 

haemophilia.org.au 

Men’s Health - it’s blokes’ business 

By Daryl Bell 

The complications of living with bleeding disorders… 

We all know about that! In this topic three speakers covered a 

large scope of issues from arthritis to depression. 

Living with a bleeding disorder can often lead to other 

complications, and knowing how to deal with these complications 

if, and when they arise is helpful. 

Knowing how to adapt our lives so the impact of the other things 

that arise from having a bleeding disorder is minimised, or dealt 

with appropriately, is an important lesson everyone learns in 

their own time. 

Planning and managing best practice 

care and treatment 

By Catriona Gordon 

There were four presentations given in this session. 

Using data for good clinical outcomes 

Dr Ross Baker from the Royal Perth Hospital discussed the 

reasons why the Australian Haemophila Centres Directors 

Organisation (AHCDO) established the Australian Bleeding 

Disorder Registry (ABDR). Bleeding disorders are uncommon 

and consequently it has been difficult to get good data from a 

study of people taken from even a relatively large population 

base, such as New South Wales. Good data is influential when 

policy decisions are made, and a regular ongoing record of 

members of the register can monitor trends in care and inform 

the haemophilia community. 

There are real benefits in having accurate information about the 

number of and type of people affected by a bleeding disorder 

in the country. The ABDR provides the haemophilia community, 

haemophilia health providers, government and suppliers of 


Saturday Morning Sessions 

Susan discussed the following potential problems at birth in 

detail: 

1. Intracranial haemorrhage 

2. Subgaleal haemorrhage 

3. Bleeding from blood vessel trauma 

4. Bleeding from circumcision 

5. Bleeding from umbilicus 

6. Other 

The recommendations for management of possible and known 

carriers of haemophilia A & B are as follows: 

• Consider pre-conceptual genetic counselling 

• Genetic counselling to discuss antenatal diagnosis and gene 

mutation analysis 

• Referral to an adult haemotologist 

• Factor 8 levels to be measured at booking,28 & 36 weeks, 

during labour and prior to any invasive procedures 

• Arrange for provision of recombinant factor for the mother if 

necessary 

• Ideally, carriers be delivered in centres with access to an 

“adult” haemotologist, a high risk obstetric unit and neonatal 

unit, a “paediatric” haemotologist, a specialised anaesthetist, 

a blood bank with Factor, and a laboratory to measure factor 

levels. 

Susan stressed that regardless of where delivery occurs; 

communication between the entire health professional team 

involved is important and a delivery plan should be established 

in advance. Although the safest method of delivery for an at-risk 

babe is controversial, there is an over-riding principle - deliver 

by the least traumatic method!!! Carrier mums with factor levels 

less than 50% should be kept in hospital for 3 days as they are 

at increased risk of postpartum bleeds (more than 500 ml) 

Some of the recommendations for the management of a baby 

born to a possible or known carrier of haemophilia are as 

follows: 

• No foetal scalp electrodes to be used or foetal blood sampling 

performed 

• Cord blood to be collected 

• Consider venepuncture to confirm initial result 

• Give vitamin K to prevent Haemorrhagic Disease of the 

Newborn 

• Circumcision not to be performed until status determined 

Giving a dose of Factor8/9 at birth to all boys born to known 

carriers has been advocated by some but is not widely practised. 

There is a possible increased risk of inhibitor development from 

early exposure to factor 8. 

Giving a dose is recommended if the baby had a traumatic birth, 

there is an obvious bleeding problem, the baby is very ill at birth, 

or intracranial haemorrhage (ICH) is suspected. Imaging of the 

head should occur if the babe is symptomatic of ICH, had a 

traumatic delivery or is premature. 


We thank Susan for this very informative talk on a topic that 

nearly everyone in the room has had or will have personal 

interest in. 

Menorrhagia: best care and practice 

- Dr Julia Phillips, Wellington Hospital 

Menorrhagia (excessive or prolonged cyclical menstrual blood 

loss), is a major health problem that often goes unrecognised by 

patients and doctors alike. It affects 5-10 per cent of all women 

at some time in their life. It is the cause of a reduced quality of 

life, iron deficiency, gynaecological surgery, lost work time and 

increased health costs. 

The definition of “heavy” is: over 80 ml blood loss per cycle; 

blood loss for more than 7 days; or heavy menstrual loss that 

has an adverse effect on daily life. 

Julia explained the different ways of measuring blood use and 

posed the question - is 80 ml a useful criteria when more than 

half the women referred with menorrhagia had less than 80 ml 

loss. 

Congenital bleeding disorders are found in up to 20 per cent of 

women suffering menorrhagia. The most common of these is 

von Willebrands disorder, in which approximately 90 per cent of 

women are affected by heavy menstrual bleeding. 

Non-surgical treatment options for women with menorrhagia 

include: intranasal DDAVP (desmopressin), antifribrinolytics 

(tranexamic acid), COCP (combined oral contraceptive pill), 21day 

POP (progesterone-only pill) and the mirena intrauterine 

system. Surgical treatment options are endometrial ablation 

and the totally invasive hysterectomy. Both of the latter cause 

infertility. 

Julia concluded by saying both the definition and recognition of 

menorrhagia could be improved; it is important to consider age, 

childbearing status, and preference in terms of efficacy, sideeffects 

and need for contraception in selecting treatment options; 

and this condition is ideally managed by a multidisciplinary team 

including a gynaecologist and haemotologist, in a comprehensive 

care centre. 

Lorraine Bishop - Porter and Robyn Coleman from the Southern Region. 


Scientific and psychosocial snapshots - 

new initiatives and progress 

By Sandra Poff 

I felt very privileged to attend the Conference held in Canberra. 

I attended as a delegate of the Southern Branch and as the 

mother of a two and a half year old with severe haemophilia. 

I attended five sessions on the Saturday including “Scientific and 

Psychosocial snapshots - new initiatives and progress”. 

The measurement of physical activity in boys with 

severe haemophilia 

- Brendan Egan, Royal Children’s Hospital, VIC 

(Co-Authors: Dr Chris Barnes, Dr Bev Eldridge and 

Dr Rory Wolfe) 

Brendan Egan reported on a study he had conducted with 

colleagues. It involved a study of 17 boys with severe haemophilia 

wearing a device called a PAL-1 for 4 consecutive days which 

measured uptime (time spent in an upright position). 

None had inhibitors present, all bar two were on prophylaxis 

and only 11 were actually monitored for the full 4 days (monitor 

failed to record/kept resetting itself in some instances). One 

presumption made was that the activity levels of all boys were 

comparable. No consideration was given to individuals who had 

target joints or other such issues. 

Historically, evidence has indicated that boys with haemophilia 

are not as fit and active as their peers and in some cases 

overweight. This could be a consequence of the idea that 

physical activity in boys with haemophilia was discouraged 15 

years ago or also as a result of many lost days for exercise 

due to reoccurring bleeds in some children. Today, however, 

the benefits of exercise, particularly weight bearing exercise is 

promoted in all circles. 

One of the conclusions reached from this interesting study was 

that boys with severe haemophilia are as active as their nonbleeding 

disorder peers. 

The intent is for an updated version of the PAL-1 to be employed for 

studies that will also be able to measure intensity of exercise. 

Workshop for young women and bleeding disorders 

- Colleen McKay, Haemophilia Foundation of New Zealand, 

Outreach Worker for the Southern Branch 

In her role as Outreach Worker for the Southern Branch of the 

Haemophilia Foundation, Colleen was keen to promote and 

discuss issues for young women with bleeding disorders. She 

organised a workshop weekend (Young Women’s Weekend 

Workshop, YWWW) for women from the ages 13-30 that have 

von Willebrand Disorder or who carry the haemophilia gene. 22 

women attended, 18 who carry the haemophilia gene, 4 with von 

Willebrand Disorder and 3 with both. 

The three main objectives of the workshop were: 

• To provide participants with information and education, thus 

empowering participants to make informed choices for their 

health care now, as well as preparing them for the future 

Australia and New Zealand Social Workers Group - can you spot yours? 

• To provide the opportunity for participants to work through the 

issues associated with their condition 

• To develop a sense of community within the group, so that 

participants and other young women could form a support 

network to help them to encourage each other as they overcome 

the barriers created by their bleeding disorders 

The workshop consisted of information and education on: 

• Genetics, the basics of von Willebrand Disorder and 

haemophilia 

• Reproductive choices for women - Dr Mark Smith 

• von Willebrand Disorder - Ally Inder discussed the types, 

differences, signs/symptoms and how to understand laboratory 

test results 

• Bleeds, treatments, products and protocols 

• Dentists - how to keep a healthy mouth/information pertinent 

for those with bleeding disorders 

• Natural options that may help symptoms 

Excellent facilitated discussion groups where held and attended 

by the women on lifestyle issues such as “Disclosure” - who to 

tell, when, how; and “Quality of Life” - where to find information/ 

help about reproductive decisions 

The programme was interspersed with a recreational programme 

that included a movie, a competitive quiz night, karaoke, 

aquacise, laser strike, bead making and pampering sessions. 

Also a contact list for those attending was circulated for that 

invaluable peer support. 

Participants were asked to evaluate the workshop as this was 

the first time such a weekend had been held for women with 

bleeding disorders. 

All education sessions ranked highly and special interest 

appeared to be in the one on reproductive choices, vWD and the 

facilitated discussion groups. 



Key issues in haemophilia 2 

By Rachel Collins 

Individualisation of prophylactic treatment of severe 

haemophilia: when to start and when to stop 

According to Dr Kathelijn Fisher who works in the Department of 

Haematology, UMCU, Utrecht in the Netherlands, the number of 

people with haemophilia starting prophylactic treatment is on the 

increase. The initiation of prophylaxis has gone from a starting 

age of 14.7 years in the 1980’s to 4.4 years of age in 2000. 

The goal of prophylactic treatment is to prevent bleeds, damage, 

loss of function and pain in the joints. This helps preserve quality 

of life and improves the person with haemophilia’s ability to be 

able to work in the future. 

In the Netherlands, the prophylactic regime is tailored according 

to the individuals bleeding pattern and a score developed using 

different tools. They look at the number of bleeds a child has 

had and take X-rays to assess the main joints (ankles, elbows, 

shoulders, and knees) for damage. 

It has been found that delaying the start of prophylaxis increases 

the risk of joint damage at 20 years of age by 8% per year of delay. 

It has also been found that by starting prophylaxis by the third 

joint bleed decreases the incidence of arthropathy (haemophilic 

arthritis). 

Pre-implantation genetic diagnosis and assisted 

reproduction techniques in haemophilia 

Dr Penelope Foster from Melbourne who works in the field of invitro 

fertilisation (IVF) at the Royal Women’s Hospital - Melbourne, 

explained to us the diagnosis and benefits of pre-implantation 

genetic diagnosis or PGD for short. 

PGD allows for the selection of unaffected embryos to be reimplanted 

in to the mother to prevent the haemophilia a gene 

from being passed on. It has a reliable success rate of 97%, but 

as with everything there is always the chance of misdiagnosis of 

2% and does not guarantee that your child will not be affected 

by a different disorder. 

The technique of PGD is a standard cycle of IVF treatment, 

which basically means administering high doses of hormones to 

increase the number of egg follicles that the mother releases. 

The release of the eggs is controlled by an oral contraceptive 

to prevent the mother from releasing the eggs too early. This 

helps the IVF doctors to be able to book the mother in to have 

the eggs removed at the right time as they can only do a few of 

these procedures a day and do not want to miss the window of 

opportunity to harvest the eggs. Once the eggs are removed, 

they are fertilised by the father’s sperm and incubated for 3 

days. At 3 days, the embryo (fertilised egg) has divided multiple 

times and they are now able to remove 1-2 cells to test. 

There are different techniques that can be used for diagnosis 

depending on the situation. For example, in the case of a fatherto-be 

with haemophilia, there is ‘Sex Selection’. Sex Selection 

is where they use a specific dye that will only attach to the X or 

Y chromosomes. As the haemophilia gene is carried on the X 

chromosome, they would only re-implant the male embryos (Y 


from father and X from mother) as the female embryos would 

carry the haemophilia gene on the X chromosome from their 

father. If the mother was a known carrier, PGD could select for 

the female embryos to ensure no sons affected with haemophilia 

are born, however females could still be carriers. 

For people who carry the gene for haemophilia A, specific gene 

detection is also available. Embryos as tested specifically for the 

haemophilia A gene. All those not affected, males and females, 

can then be replanted. 

Complications of ageing 

By Michael Ho 

Recent advances in treatment have reduced the gap in life 

expectancy between a person with severe haemophilia and the 

general population. However, people with haemophilia (PWH) still 

have to live with the issues of arthropathy, hepatitis C, CJD and 

HIV. Studies also show some correlation between haemophilia 

and other complications of aging … 

• Renal disease - increased incidents in PWH. 

• Cardio-vascular disease - lower mortality rate with coronary 

in PWH 

• Diabetes - not related to PWH 

• Cancer - not related to PWH 

• Hypertension - increased incidents in PWH 

• Prostatic Disorders 

• Degenerative joint diseases - hip, knee, ankles, 

elbow and spine 

• Osteoporosis is loosely related to PWH 

• Balance impairment 

• Pain relief and drug addiction 

Studies suggest that PWH do have moderate levels of balance 

dysfunctions. Osteoarthritis of the lower limbs is linked with 

reduced balance and increased chance of falling, causing trauma 

and fractures. As people with severe haemophilia A have higher 

incidence of osteoporosis, it is worthwhile undergoing bone 

density screening. For problems with ankles causing outward 

deformity, shock absorbing orthotics, vitamin D, calcium and 

intravenous injection can help provide relief. 

Pain is also a big issue with aging PWH. Instead of constantly 

increasing the dosage or strength of pain relief medications, 

can try: 

• Non addictive analgesics 

• Transcutaneous nerve stimulation (TENS) 

• Relaxation therapy, hypnosis 

• Pain Management Programs 

• Liaison Psychiatry 

In conclusion, if you have haemophilia: 

• You’re likely to live a long time 

• You’re in charge of your physical, mental & emotional health 

• You need to be moderate 

• Don’t Smoke 

By Ron and Judith Dudson 

Impact of Hepatitis C 

Hepatitis C and Young People - Vicki Jermyn 

Young people with hepatitis C are rarely symptomatic and 

may feel completely healthy. Signs and symptoms of hepatitis 

C are fatigue and depression, nausea, poor appetite, poor 

concentration, muscle and joint pains, as well as enlarged 

liver, spleen, jaundice. Symptomatic young people should be 

encouraged to have treatment to prevent cirrhosis and future 

complications. However the side effects and injections can 

sometimes lead to a compliance problem in younger people. 

The psychosocial aspects of self-care, education and safety 

and the community concerns of disclosure, discrimination and 

exclusion were also discussed. Lifestyle issues are equally 

important for this age group in terms of diet, exercise, alternative 

therapies. Young people also face the pressures associated 

with sexual activity and drinking culture, when abstinence is 

recommended. 

Hepatitis C related stigma and discrimination - 

origins, impacts and responses - Helen Tyrell 

Helen spoke on the stigma associated with Hep C and how 

people with Hep C were discriminated against Hep C is not a 

socially accepted disease as it is seen to be associated with 

drug use and abuse. 

Hep C is viewed as a sentence rather than being a medically 

acquired disease. She spoke of stories of people with Hep C 

and how that after disclosing that they had Hep C they had been 

discriminated against. 

She recommended a good web site to look at: 

www.hepatitisaustralia.org 

Experiences of the bleeding disorders community 

with hepatitis C - Suzanne O’Callaghan, HFA 

Haemophilia Foundation of Australia recently undertook a national 

needs assessment in order to develop its national hepatitis C 

strategy. Highlights from the focus groups were presented. 

The full report is available on the HFA website. 

Belinda Burnnet acted 

as chair of the Women's 

Wisdom session. 


Women’s Wisdom 

By Robyn Thomas 

This session was well attended by an appreciative audience of 

women and a few brave men. 

“Mothers, partners, carers, people with bleeding 

disorders and carriers of the haemophilia gene” 

- Belinda Burnett, HFNZ 

We were privileged to travel through 19 years of Belinda’s 

personal story as she outlined snippets of being the mother of a 

girl with haemophilia - a rare circumstance. 

Belinda now shudders to remember the days when she did not 

have her current knowledge. She stressed that KNOWLEDGE IS 

POWER!!!! 

Belinda left us with the following wise words 

“The most common way people give up their power is by thinking 

they don’t have any” - Alice Walker 

“Although the world is full of suffering it is also full of the 

overcoming of it” - Helen Keller 

Management of Delivery in Carriers and 

Management of the Newborn - Dr Susan Russell 

Susan’s talk presented us with statistics, detailed procedures 

and gave recommendations for all situations encountered in 

childbirth for carriers. 

Carriers: 

• delivery and neonatal period (1st 28 days after birth) is a high 

rise time for both baby and carrier mum 

• in 1/3 of cases there is no family history 

• 35% of carriers agree to prenatal testing 

• 31% of carriers with a family history are not aware of their 

carrier status at delivery and so may have instrumental 

deliveries. 

• knowledge of carrier status impacts on method of delivery and 

management of baby 

• Factor 8 levels in carriers rise during pregnancy 

• carriers of haemophilia A & B are potentially at increased risk 

of bleeding with invasive procedures and post-partum bleeds 

if their factor level is less than 50% 

Babies with Haemophilia: 

• 15 - 33% of newborns with inherited bleeding disorders present 

with bleeding in the neonatal period 

• the majority of newborns with haemophilia are diagnosed after 

a bleed 

• a diagnosis is often delayed especially if there is no family 

history (average 6 months) 

• the greatest risk is to babies where there is no family history 


Friday Afternoon Sessions 

Fitness in Children 

By Stephanie Coulman 

Fitness and physical activity in children with 

haemophilia - Dr Carolyn Broderick, University of New 

South Wales 

The past three decades have seen a dramatic change in the 

advice given to children suffering from haemophilia. Prior to the 

1970s children were strongly advised to avoid sports for fear it 

may lead to bleeds into joints and muscles. Today prophylaxis 

has enabled such children to return to sport. Recently it has 

been suggested that regular physical activity may reduce the risk 

of bleeding because stronger muscles are better able to protect 

the joints. Current studies at the University of NSW are looking 

at four questions: 

1. Are children with haemophilia less fit than their healthy 

peers? 

2. Does a structured programme of 3 months duration improve 

fitness and quality of life in children with haemophilia? 

3. Is there an increase in the risk of bleeding? 

4. Does regular exercise modify the risk of bleeding? 

Why children with haemophilia should exercise: 

• To improve fitness 

• To reduce obesity 

• For better bone health 

• To reduce bleeding episodes 

• To improve quality of health. 

There is not much evidence to prove the latter two reasons 

but Dr Broderick said what we know to date is encouraging. A 

1984 study showed a reduced aerobic fitness in 11 boys with 

haemophilia compared to their peers. By 2006 another study 

showed no significant difference in aerobic capacity in 13 boys 

with severe haemophilia A on prophylaxis. 

The Children’s Hospital Westmead is currently doing three 

studies. 

1) Forty three boys with haemophilia aged between 6 - 16 years 

are compared to 2760 healthy boys from NSW. Of those 83% 

have haemophilia A, 10% haemophilia B, 7% von Willebrands, 

63% are severe and 83% are on prophylaxis. 

Results: 

Body mass index (BMI), aerobic fitness, endurance and strength 

found no significant difference in all age groups apart from the 

15-16 year-old age group which performed better than their 

peers. 

2) Another current intervention study is looking to determine 

the effect of exercise on quality of life and aerobic fitness and 

strength in children with haemophilia. Outside the scope is the 

effect of exercise on bleeding episodes because the study would 

need 500 children to get good results and this is not possible. 

Seventy children with haemophilia have been given an initial fitness 

assessment and then randomised in two groups. One group is 

being given the usual treatment of education, reassurance and 

treatment of bleeds. The other group is undertaking twice weekly 


aerobic sessions for 12 weeks. Both groups will be reassessed 

at three months. 

3) 84 boys with haemophilia are being followed for one year and 

all the bleeds are reported and the type of activity that caused 

them. The report aims to determine the risk of bleeding with 

specific sporting activities. 

In summary exercise may increase bone mass density and 

decrease bleeding episodes and should become part of the 

routine management of haemophilia. 

Strategies to promote healthy participation - 

overcoming the barriers 

- Wendy Poulsen and Salena Griffin 

In children with haemophilia there are additional concerns when 

thinking about healthy participation such as: 

• Bleeding episodes 

• Pre-existing joint damage 

• Presence of inhibitors 

The www.hemophiliagalaxy website recommends three categories 

of sports 

• Category 1: Safe and recommended 

• Category 1.5: Safe to moderate risk 

• Category 2: Moderate risk 

• Category 2.5: Moderate to dangerous risk 

• Category 3: Dangerous risk 

The choice of a particular sport is an individual matter. However 

some common factors influence choice: enjoyment, capability, 

previous experience and the attitude of others. Many people, 

whether with a bleeding disorder or not, find barriers to exercise 

(I’m not fit enough, I don’t have time etc). 

Involve children from an early age with their own treatment so 

they can be of assistance when time is short. Learn the early 

signs of a bleed and always have your factor readily available. 

Treating bleeds early is critical. Waiting too long or not treating 

can lead to long-term damage. 

Control or concern? A balanced style will allow a child to be an 

active participant in all aspects and decision-making in their 

treatment. 

In summary, strategies to promote healthy participation: 

• Good education by haemophilia staff regarding the types of 

sports and the related risks 

• Acknowledging the individual’s limitations 

• Parental support and role modelling 

• Prophylaxis timing to sporting activity 

• Use safety equipment 

• Develop a plan of what to do if injured. 

Auckland Islands sea kayak adventure 

“Bloody can do it” 

- Jack Finn 

Jack Finn, from West Auckland, gave a visual presentation of his 

Auckland Islands Expedition with plenty of video and still footage 

Jack Finn recounts 

his journey to an 

eager audience. 

of the nature he and his valiant crew encountered. The Auckland 

Islands are sub-Antarctic and are located 400kms south of New 

Zealand. The trip was two years in the planning and the rough 

trip from Bluff to the Islands took 2 ½ days to sail. Jack’s crew 

was the Tiama vessel’s skipper, haemophilia nurse Mary Brasser 

and Jack’s mother. 

Jack, a full-time sea kayak guide, was well experienced to begin 

his challenge of circumnavigating the Auckland Islands by kayak. 

As Jack kayaked along the “broccoli” canopy of the East Coast 

he and the crew got close and personal with the many varied 

locals: huge crabs, shags, albatross, cute waddling yellow-eyed 

penguins, southern right whales and defensive (and smelly) sea 

lions. 

“However good old haemophilia came along and bit me in the 

bum!” says Jack who suffered from a back muscle bleed part 

way through the expedition and had to abandon hopes of a full 

circumnavigation. 

While obviously disappointed, Jack says he gave his best shot 

and “that’s the main thing.” Bloody Can Do It! 

Plenary 2: “You won’t die from laughing” 

By Frances Thomas 

To lighten things up mid-conference, the organisers gave us 

something different - a session with Patricia Cameron-Hill and 

Dr Shayne Yates, self-declared world experts on stress and 

humour. 

Formerly nurse and doctor, they established a seminar and video 

production company in 1984, finding a new way to make people 

feel better - through laughter and humour. 

We were treated to a side-splitting comedy act with the 

energetic Patricia leading the show, an almost totally silent 

Shayne in support, and a roomful of the willing yet wary keen to 

participate. 

Patricia introduced herself as a nurse whose dream had come 

true - she married a doctor. She immediately asked audience 

members to reveal the professions they had married, and was 

ready with a quip or a one-liner to top their answers. Speaking 

of Shayne she said: “I’m living in the fast lane and I married a 

speed hump.” Her husband sat calmly and she added, “What 

he’s good at is he’s always there.” Balm after the dig. 


Stand up comedy doesn’t always translate well to the page so I’ll 

keep direct reporting to a minimum and try to give some idea of 

the flavour. Their routine was part homage to Barry Humphries, 

with Patricia the acerbic Edna, and Shayne the long-suffering 

Madge. Even some of Patricia’s intonation mimicked Dame Edna 

perfectly… on purpose? or maybe it’s an Australian thing. 

Talking of nationalities neither side of the ditch was spared, 

and the host city of Canberra bore the initial volleys. Someone 

mentioned that one of the other guest speakers had gone for a 

walk. “Probably thinks there’s something to see” said Patricia. 

But they were here to teach as well, the format being show-thentell. 

Patricia put the questions to us. Is there stress in your life? 

How can laughter help? She said it’s good to develop the ability 

to look at life’s problems and not take them too seriously. If we 

have a sense of humour then we can appreciate humour and find 

joy even in adversity. The minute you are amused by something, 

the better you feel, and this is the beginning of well-being. 

Apparently women laugh more often than men, and have a 

stronger sense of humour. Women are most attracted to men 

who can make them laugh - this quality is way ahead of all 

others. 

Patricia gave a list of the benefits of laughter - enhanced memory, 

energy, pain relief, blood flow stimulated, increased breathing, 

help in fighting infection, relaxed muscles, and improved 

concentration. 

People Patricia admired included - 

• Patch Adams who said that “the most revolutionary act we can 

do these days is to be funny in public” 

• Norman Cousins’ work on humour 

• Lance Armstrong’s book “It’s not about the bike.” 

• Gordon Livingstone’s book “Wisdom” 

To help a child who has to make frequent hospital visits and/or 

receive frequent injections and treatments she suggested putting 

together and taking to the hospital a ‘fun case’, full of things that 

can distract the child and bring a smile to the face. 

There are many things that will lift our mood - chocolate, shopping, 

funny TV shows, music, dance, and the way we use our mind. 

Other suggestions included - 

• Get your head right - be passionate about life. 

• Build a repertoire of jokes - collect cartoons and jokes and put 

them in a book, or stick them on the fridge. 

• Develop an attitude of gratitude. 

• Share a joke. 

• Remember you have a reason to be happy - you woke up this 

morning! 

For more information about Patricia and Shayne’s work visit their 

website www.chy.com.au 

Email shayne@docfunny.com to sign up to free Humour every 

Friday by email. 

The day ended with a lovely Remembrance service, held in Nara 

Park across the road from the Hyatt on the edge of the lake, and 

a Gala Dinner where everyone got the chance to let their hair 

down a little. 



Understanding von Willebrand Disorder 

By Shane and Maree Fraser 

Von Willebrand disorder was named after the Finnish doctor Erik 

von Willebrand. He was the first person to describe the disorder 

after observing families living on the Aaland Islands between 

Sweden and Finland who had bleeding problems. It affects both 

men and women. 

Dr Geoff Kershaw, Royal Price Alfred Hospital, NSW, was the 

first speaker and gave a technical talk on Some practical aspects 

of laboratory testing’s for von Willebrand Disorder (VWD). He 

stated that it is the most common inherited bleeding disorder. 

Von Willebrand factor acts as a ‘glue’ to bind platelets. The 

diagnosis of VWD normally requires 3 components; a qualitative 

or quantitative abnormality of von Willebrand factor shown by 

lab test; a personal history of excessive bleeding; and a family 

history of this bleeding tendency. The most commonly performed 

tests are the measurement of von Willebrand factor antigen, 

factor VIII coagulant activity, von Willebrand factor ristocetin cofactor 

activity, and collagen binding activity. Specialised labs can 

also perform FVIII binding assay to help sub-classify VWD. 

Dr Ross Baker, Royal Perth Hospital, WA, spoke on Demystifying 

the classification of VWD and lessons from the Australian clinical 

trials. VWD is predominately a surgical bleeding disorder caused 

by either a deficient or abnormal functioning von Willebrand factor. 

Patients with Type 1 (80%) usually respond to DDVAP whereas 

those with Type 2 (15%) and Type 3 (5%) VWD generally do not. 

Plasma-derived von Willebrand factor concentrate has been 

successfully used to treat patients unresponsive to DDVAP. 

Lorraine Bishop-Porter, gave a wonderful heartfelt personal 

story - 1 + 1 = 3 - A Family experience of VWD - about her 

son Zac who was misdiagnosed with haemophilia at 12 months 

of age. Finally after many medical battles her son was properly 

diagnosed with having Type 3 VWD. Lorraine and her husband 

both have Type 1 VWD but we unaware of this until Zac was 

diagnosed and they were tested. 


Lorraine gave a family 

account of VWD. 

Youth Matters 

By T.A. Stirling 

Building Relationships - Effective Communication 

and telling partners about bleeding disorder and 

blood borne viruses 

- Dr Sarah Martin from the Canberra Hospital, ACT. 

Whether to Tell ,who to tell, how to and when to talk is a personal 

choice that will come in to play throughout life, whether you are 

the bleeder or someone close like family, friends, school or work, 

clinicians, counsellors, or most of all partners, etc.. 

The trouble with talking is that it touches on existing hurts 

sometimes anger, from your own experience of finding out or 

maybe previous people’s responses. Telling carries risks, both: 

• Immediate Risk - loss of dignity, further hurt, loss of control 

• Long term Risk - loss of privacy, loss of career, loss of 

relationships 

“Sometimes it can feel impossible” 

Not talking about it has many effects and sometimes disastrous 

consequences. Not telling can be very lonely, you can become very 

shut off, and have trouble connecting with people. Being locked 

inside can lead to depression and will impact on relationships. 

All this eventually leads to negativity which will not only upset you 

but the well being of all those around you. 

“Love yourself before you love anything else” 

Telling your story is your decision. If you chose to tell, these are 

some of the benefits: 

• Talking about yourself and health as more than a diagnosis 

• Trusting people with an insight as to who you are, beyond what 

you have 

• Opening yourself up can create a sense of ease 

• Opens new doors and creates well being 

Double-sided stories include things that have happened to you 

and the strengths you gained of what you have done to overcome 

pass obstacles. You might already have the tools trust yourself. 

Getting ready to open up 

• Know why you want to tell someone, what do you want or need 

from them 

• Is their stuff you could deal with first? 

• Anticipate their reaction and think about the risks, but don’t 

dwell on them as you might go mad 

• Be ready to share your knowledge, have information for them 

if they need it 

• Get support if you need it 

• Decide where and when to talk, know how you will start the 

conversation 

• Allow plenty of time, try to accept their reaction, it may not go 

as you hoped 

“Expect the worst, Hope for the best” 

Practice with telling your story maybe with a new face who’s not 

so close. They could have more in common than you know. If you 

need more support talk to your family, friends, doctors, nurses, 

or counsellors. 

This next bit is very hard for me. I understand it, but it’s a bit 

harsh. If you need inspiration please refer to April Fool’s Day 

written by Bryce Courtenay. I believe we have a few cases in 

Aotearoa New Zealand and in one case I was over the moon 

- love you bro no names. 

HIV brings specific responsibilities 

• Very IMPORTANT to tell partners before sex - it’s a must, and 

not only that it’s a law 

• Clinicians have a responsibility to patients and public 

• Partner can go to police if concerned 

• Trust and mutual respect depends on honesty. When it comes 

down to it, it really is simple - it’s about being human where 

relationships are built on trust. It has nothing to do with what 

you have - it does however make it harder. It could be good or 

bad though, but how do we know if we don’t try. This is my own 

opinion and the decision is really yours and yours alone, but 

you are not alone in this…… 

Safer sorts of sex 

• Try delaying sex, trying other sorts of sex 

• Hepatitis C - avoid blood exposure or mucosal trauma 

• HIV - condoms a must no matter what. Can seek HIV post 

exposure prophylaxis if something goes wrong (same day 

preferable, though up to 72hrs) 

• Please if you are not sure, the best thing to do is to get to 

know your local sexual health centre or clinic…. 

Better health & fitness 

- Janine Furmedge, Haemophilia nurse Melbourne 

Empowering Families 

• Early education and establishing support networks improve 

psychosocial care 

• Is their clotting factor available? 

• Early issues include strategies for managing painful procedures, 

e.g., adjusting, distracting techniques, music, reading and or 

meditation 

• Early home therapy: home infusion, prevent and treat bleeds 

and easy access to a HTC 

• Preparation for independence- Teaching boys self-infusion as 

early as 8yrs old! 

o Maintaining home therapy 

o Regular review with doctors 

o Isolation get involved with HFNZ 

School camp can be good preparation for independence but a 

great support plan needs to be put in place, including letters 

detailing what needs to be done, the right amount of treatment, 

contact details, etc… By the time of school camp, families should 

have prepared being as independent as can be. If troubled seek 

advice at nearest haemophilia centre. 


Independent Management 

- Brendan Egan, Physiotherapist 

• Treat ASAP (although factor is only one aspect of a bleed). Iron 

deposits can between to accumulate in untreated joint bleeds 

within the first 4 hours, eventually damaging joints 

• R.I.C.E 

o Rest the injury, stay off it or do not use 

o Ice the injury for 15 minutes for every 2 hours for 24 

hours 

o Compression wrap the injury to reduce swelling with a 

compression bandage 

o Elevation raise the injury to reduce swelling 

• P.R.I.C.E is what the New Zealand Institution of Sports and 

Recreation will introduce soon, the letter P will stand for 

Prevention. It’s not as simple as saying “try not to have a bleed” 

(as some are known to be spontaneous), but try to prevent 

joint damage and take preventative measures (prophylaxis, 

choice of activity). Bleeds can be prevented or reduced even in 

people with severe haemophilia. 

• Rehabilitation is very important after a bleed for two reasons. 

The first is that a lengthy bleed could lead to deformities, 

loss of range of movement and opens the door for recurring 

targeted joint bleeds, which will lead to arthritis as early as 

in the teens. Secondly, muscle strength helps the body on so 

many levels; it increases and maintains movement, and it is 

known to reduce pain (and the less pain the more we can 

sidetrack medications and narcotics which absolutely wreck 

the inside of the body). 

Haemophiliac Stages 

• Toddler - tummy and crawling. There are now pads to reduce 

bruising. 

• Child Development - playgrounds. Swings are a great way to 

strengthen legs. Swimming pools are also a great idea or 

anything that lessen weight stress on young joints. 

• Primary School - getting active. Uncontrolled play is important. 

Kids could be encouraged to take up a light sport. Bike riding 

is a winner, but sitting in front of the T.V is not. 

• 12-18 years - structured sporting activities. Keep them 

active, and encourage the increase of muscle, endurance, 

and improved joint stability. They could try school/community 

based activities. 

Why is Sport important? 

• It is physical and social, plus helps maintain proper weight for 

joints 

• Helps reduce bleeds 

• Take in moderation. Don’t look at it as a six month thing or 

plan. The earlier kids get active the better. 

• Seek a plan that meets theirs or your needs combined, 

including input from Doctors, Haemophilia Nurses and 

Physiotherapists. 

• Keep it Personal. Choose a sport that the child likes and will 

probably keep up. 


Friday Morning Sessions 

Colleen McKay presenting her 

very well received talk on the 

impact of bleeding disorders on 

the family. 

Types of Mutations in severe haemophilia A 

In a study of 753 German Patients 

• Intron 22 inversions 45% 

• Non sense mutations 13.5% 

Severe mutations with the absence of Factor VIII resulted in more 

inhibitors whereas less severe mutations meant less inhibitor 

production. The severity of the inhibitor depends on the location 

of the stop gene. 

Types of Mutations in haemophilia B 

A study of 256 patients: 

• Missense mutations 69.5% Mild 

• Non sense mutations 14.4% Severe 

Factor IX 

Factor IX patients have a lower rate of inhibitors compared with 

Factor VIII patients but most are high responders and difficult to 

treat. 

Most occur in large deletions or non sense mutations. Severe 

allergic reactions may occur with the production of inhibitors in 

the Factor IX patient and nephrotic syndrome may appear during 

ITI therapy. 

As you can see, there are numerous factors that contribute to 

the production of inhibitors in the haemophilia patient. 

Role of plasma products in the treatment of 

Haemophilia today - Dr Scott Dunkley 

Inhibitors remain the greatest challenge to haemophilia care 

today. In Australia, the inhibitor rate is 8.5%. The majority of 

people with haemophilia in Australia today use recombinant 

products but in some circumstances, plasma products may 

be a suitable alternative. In some European countries, plasma 

concentrates are offered as an alternative treatment to patients 

with a high risk of inhibitor development. 

Risk Profiling = thinking about which treatment is better for each 

patient to decrease inhibitor risk. 

This depends on a number of factors: 

• Plasma derived versus recombinant 

• Less inhibitors when using prophylaxis versus on demand 

• Von Willebrand factor (VWF) in product could influence 

inhibitor development 


Using plasma or recombinant product for ITI 

There is a much higher success rate using plasma-derived 

product with VWF than recombinant factor. This beneficial role of 

VWF needs to be explored more fully. 

He left us with the following questions: 

• Can we risk profile patients to help guide product choice 

depending on the balance of good and bad risk factors? 

• Can we add plasma VWF or recombinant VWF to recombinant 

Factor VIII to help ITI? 

Treatment of patients with inhibitors and immune 

tolerance - Dr Chris Barnes 

In Australia there are a total of 116 patients with inhibitors, 74 

of these have high level inhibitors. A total of 31 people have 

been tolerised. 

The management of patients with inhibitors have focused on the 

bypassing agents Novo7 and FEIBA. These products are similar 

and are effective in 80-90% of bleeds. 

In non-responder patients, if the bleed is not controlled after 6 

hours, sequential treatments seem to be effective. During major 

and minor surgery, guidelines are available. 

Recent reports have shown successful reduction of bleeding 

events for patients managed using prophylaxis with Novo7 or 

FEIBA. 

In three large ITI studies, 60-80% of patients ultimately respond 

to ITI. Favourable outcomes depend on a number of factors: 

• Low inhibitor prior to ITI 

• Historical low titre 

• Young age 

• Duration from onset of inhibitor until start of ITI 

A small study has been undertaken using Mabthera (an antiCD 

20) which removes mature B cells from the system. This seems 

feasible but whether this is a good idea remains to be seen. 

I want to thank the HFNZ for allowing me to attend the conference 

in Canberra. I really enjoyed my time there and came away having 

learnt more about bleeding disorders. 

Helping families to manage bleeding 

disorders better 

By Diana Bell 

Helping families to better manage bleeding disorders was an 

informative topic relevant to all. We had three speakers, all of 

whom had a different perspective on this. Two of our speakers 

talks centred on the medical perspective and our own outreach 

worker Colleen McKay gave a fantastic talk about the impact of 

bleeding disorders on a family… 

Dr Angela MacKenzie talked about understanding pain - comforting 

and coping strategies. She showed an interesting video clip of 

a mother and the experiences the mother has had with her two 

boys with haemophilia, the ways in which she has dealt with their 

pain, and her coping of it. 

Colleen McKay, spoke of her experience, and that of many 

families when they find out their child has a bleeding disorder. 

The analogy she used for the journey each parent is on is “Life 

in Holland” - you were looking forward to a move to Italy when 

suddenly you are told you’ve landed in Holland, a place that 

you never wanted to go. If you ever have the chance, ask her 

about life in Holland. As a mother of a child with haemophilia 

I found the story was a great way to put it. You are suddenly 

experiencing all these things that you never thought you would, 

and possibly the life journey you expected suddenly changes. 

She reaffirmed that is normal to experience a grief response 

when there is a diagnosis of a chronic illness such as bleeding 

disorder. She then went through the various feelings associated 

with the grief response and ways of coming to terms with your 

new homeland. Adjusting to life in Holland takes one step at a 

time, but strategies for coping include: 

• Get educated 

• Get connected 

• Develop a support system 

• Get organised 

• Communicate 

• Develop a plan for emergency situations 

We then had a talk by Anne Jackson and Sharyn Wishart, 

which focussed on the partnership between parents and health 

professionals, and the improved services and the Haematology/ 

Oncology Unit in their respective hospitals in Australia. 

Hepatitis C treatment and Care 

By Ron & Judith Dudson 

Positively Negative - Neil Boal, HFV 

Neil presented a personal account of his struggle living with 

haemophilia, HIV and hepatitis C and the journey it took him to 

embark on hepatitis C treatment. 

Hepatitis C Treatment and Care: Relevance to haemophilia- 

Professor Geoffrey Farrell, Canberra Hospital ACT 

The risk of cirrhosis after 20 years of HCV infection is 10% among 

those under the age of 30 years, and slightly higher in men than 

women. Host factors that influence fibrosis are excessive alcohol 

consumption (Professor Farrell did suggest that an occasional 

drink was acceptable but abstinence was preferred), obesity, 

type 2 diabetes and co-infections with HBV, HIV, etc. 

Liver biopsies are not as prevalent as before, especially if 

people are keen to have therapy. In people with haemophilia, 

liver biopsies can be managed by the haemophilia treatment 

centre. Approximately 10% of patients relapse at the end of 

current treatment regimes. Patients with genotype 1 & 4 seem 

to need the most treatment, i.e. 48 weeks as opposed to 16 

weeks treatment for genotype 2 and 3. There are new therapies 

in the pipeline but they will not be available for some time. 

It has been established that the main problem in patients having 

treatment is depression and this should be addressed before 

they start. 


Professor Farrell commented that self care is best: 

• avoid excessive alcohol 

• watch your weight, especially fat around the stomach 

• stop smoking 

• get vaccinated for other hepatitis viruses 

He recommended a positive approach to health and lifestyle and 

having the motivation to survive to “old bones”. 

Making decisions and hepatitis C treatment: 

what men are thinking 

- Dr Stephen McNally, La Trobe University, VIC 

Dr McNally presented the findings of a 12-month study of 224 

people in Victoria with hepatitis C, along with the views about 

treatment from general practitioners and specialist physicians. 

Men were more likely than women to be receiving treatment, as 

were participants diagnosed in the past five years. A range of 

psychological and social factors have an impact on the decision 

to have treatment, including the impact on work and family, liver 

status, relationship with their doctor and other problems such 

as depression. 

Both of us felt we got more out of this conference than the one in 

Melbourne - possibly because the lectures were more “laypeople 

friendly” and also the personal experiences that were given. We 

have decided that we are not so odd after all, as others have 

been there too. 

The Conference Venue - the Hyatt Canberra. 


14th Australian & New Zealand Haemophilia Conference 

Programme of Presentations 

Saturday 6 October 

Plenary 3: Key issues in haemophilia 

Chair: Dr John Rowell 

Individualisation of prophylactic treatment of severe haemophilia: when to start and when to stop 

Dr Katherlijn Fischer 

Pre-implantation genetic diagnosis and assisted reproductive technology in haemophilia 

Dr Penelope Foster 

Complications of ageing Impact of Hepatitis C Women’s Wisdom 

Chair: A/Prof Alison Street Chair: Steve Waring Chair: Belinda Burnett 

Vascular disease in haemophilia 

A/Prof Alison Street 

Chronic haemophilic arthropathy 

Prof John York 

Falls and balance - from research to 

practice 

Marcia Fearn & Prof Keith Hill 

Scientific & Psychological 

Snapshots 

Hepatitis C and young people 

Vicki Jermyn 

Hepatitis C related stigma and 

discrimination - origins, impacts and 

responses 

Helen Tyrrell 

Experiences of the bleeding disorders 

community - 

HFA needs assessment 

Suzanne O’Callaghan 

Men’s Health 

Mothers, partners, carers, people 

with bleeding disorders and carriers 

of the haemophilia gene 

Belinda Burnett 

Using genetic counselling services 

& 

Management of delivery in carriers 

& of the newborn 

Dr Susan Russell 

Menorrhagia: best Care and 

practice 

Dr Julia Phillips 

Planning and managing best 

practice care and treatment 

Chair: Dr Scott Dunkley Chair: Peter Mathews Chair: Dr John Rowell 

The measurement of physical activity 

in boys with severe haemophilia 

Brendan Egan 

Workshop for young women and 

bleeding disorders 

Colleen McKay 

Attitudes towards and beliefs about 

genetic testing in the haemophilia 

community. 

Dilinie Herbert 

A retrospective study of the utility 

of DDAVP in the management 

ofpatients with von Willebrand 

disorder 

Dr Jake Shortt 

Blood, toil and tears: clinical and 

psychosocial outcomes over 25 

years in patients with 

haemophilia infected with HIV 

Dr Mark Polizzotto 

The complications of living with 

bleeding disorders 

Peter Mathews 

Managing arthritis 

Helen Cody 

Dealing with Depression 

Dr Paul Denborough 

Plenary 4: Conference Closing….and what about the future? 


Using data for better clinical 

outcomes 

Dr Ross Baker 

The NBA four years on - focus on 

patient needs, achievements and 

future opportunities 

Dr Alison Turner 

Blood products for the treatment 

of haemophilia: priorities for 

government 

Roderick Saunders 

Safety of haemophilia products - 

keeping ahead through regulation 

Prof Albert Farrugia 


Official Welcome and Conference Opening 

By Frances Thomas 

Gavin Finkelstein, president of Haemophilia Foundation of 

Australia, welcomed everyone and explained that the conference 

programme was jointly developed with New Zealand. He thanked 

Dr Scott Dunkley who chaired the Conference Program Committee, 

and the HFA national patron Sir Ninian Stephen. 

Gavin said he hoped the conference would be a chance to catch 

up and meet new friends, as well as hearing about the current 

and emerging issues that affect people with haemophilia. He 

said there would be presentations by international speakers 

on all topics as well as social events to enjoy. HFA is affiliated 

to WFH, and is dedicated to bringing treatment to undeveloped 

countries. 

He introduced Deon York, 

president of Haemophilia 

Foundation of New Zealand. 

Deon spoke about the theme 

of the conference - “Achieving 

success to last a lifetime” 

- pointing out that, with the 

advances in medical care, 

Deon York Opening the Conference. people with haemophilia can 

now expect to live a long life, 

and increasingly with only the normal complications of aging. With 

each advance the concept of “success” changes. What we do 

now lays the foundation for the next generations. He saw safety 

and supply of treatment products continuing as an important 

issue, and he looked forward to everyone working together. 

The official welcome prefaced the opening session so Deon 

finished by introducing Dr Scott Dunkley who was the first plenary 

session chair. 

Plenary 1: Key Issues in Haemophilia 1 

A/Prof Ian Kerridge presented a very interesting talk on 

“Ethnomics”, the study of ethics and economics, and how they 

play into decision regarding haemophilia care. He notes that 

while improvements in care, life expectancy and quality of life 

have created new possibilities, they have also created new 

and complex questions about the appropriate goals, limits and 

organisation of haemophilia services. He raised many confronting 

issues and provided food for thought about how haemophilia can 

and should be managed in an age of high costs and dwindling 

resources. 

Dr Kathelijn Fisher, from the Department of Haematology at 

UMCU, Utrecht travelled all the way from the Netherlands to 

attend. She presented an informative, if technical, talk on the role 

of quality of life measurements in haemophilia assessments. In 

general, people with haemophilia score lower on physical health 

measurements than the general population, but this improves 

with prophylaxis. She concludes that her findings support the 

importance measuring quality of life in patients with bleeding 

disorders for doctors and health policy makers and why it should 

be included in all patient assessments. 

Inhibitor risk profiling - the care and 

management of inhibitors 

By Robyn Coleman 

Living with an inhibitor 

- A personal reflection - Michael Prendergast 

Michael is a 25 year old man living with severe haemophilia 

A, von Willebrand disorder and inhibitors. He spoke about the 

challenges this has brought to his life so far and what the future 

holds for him. Michael’s inhibitor developed after his second 

birthday. This was difficult for him and his family knowing that 

when they infused Factor they knew it was not going to work. At 

school, even with the support of the Outreach Nurse, kids didn’t 

understand why Michael was so sick when he didn’t look sick at all! 

He also lives with joint deterioration, but despite this he works 

as a town planner and enjoys 4 wheel driving. Recently, he has 

travelled overseas for a few months after a lot of organisation 

beforehand regarding factor drops at various cities along the way. 

In the future, Michael looks forward to new treatment advances 

and living life to the fullest. This talk was a real inspiration to me 

to see someone doing all they can despite the odds. 

Predicting Inhibitors - Dr Jamie Price 

Immunoglobulin G (IgG) antibodies to Factor VIII occur in 20-30% 

and Factor IX in 3-5% of people with haemophilia. They occur more 

frequently in severe haemophilia. They occur after 3-11 exposure 

days and may present in transient low and high responder forms 

which are often easy to miss. Immune tolerance induction (ITI) 

therapy is an effective treatment against inhibitors. 

Patient environment Treatment 

Age of 1st infusion 

Immune system challenges 

Infections 

Type of Factor (plasma derived 

or recombinant) 

Mode of administration (on 

demand or prophylaxis) 

Intensity of treatment (much 

over a few days) 

Immunisations Surgery /Injury early in life 

Type of mutation 

Inhibitors 


14th Australia & New Zealand Haemophilia Conference 

Canberra 2007 

From 1-4 October 2007, approximately 200 people 

with bleeding disorders and their families, health 

professionals, decision makers and industry 

representatives had the opportunity to share their 

knowledge at the 14th Australia & New Zealand 

Haemophilia Conference in Canberra. 

The conference allowed for discussions about current 

and future issues for clinical practice and policy affecting 

the treatment, care and education needs of people with 

bleeding disorders. 

New Zealand was well represented at this conference 

with 29 members and staff in attendance, as well as 

several health workers. Seven presenters also hailed 

from New Zealand: Deon York, Belinda Burnett, Colleen 

McKay, Steve Waring, Jack Finn, Lorraine Bishop-Porter, 

T.A. Stirling and Dr Julia Philip from Wellington Hospital. 

All did an extremely impressive job and should be proud 

of the part they played sharing valuable information. 

The theme of this year’s conference was “achieving 

success to last a lifetime”. The lifetime of a person with 

haemophilia or a related bleeding disorder was much 

shorter in the past. We have now reached a stage where, 

thanks to advances in medical care, the life expectancy 

of a person with haemophilia virtually equates with the 

general population. Of course, aging brings additional 

challenges. Mix the ravages of age with the effects of a 

lifelong chronic disorder and interesting points to discuss 

are bound to arise. The conference program reflected 

these issues with sessions that ranged from childhood 

and youth matters right up to the complications that 

aging bring. 

Success was measured differently in the past. What 

success means now in terms of the treatment and 

care of people with haemophilia, advances in medical 

knowledge and clinical research as well as daily clinical 

practice has certainly shifted. 

Success that lasts a lifetime also has a lot to do with the 

foundations that are put down for the next generation. 


This could include many topics: primary prophylaxis, 

overcoming inhibitors, ensuring continual adequate 

safety and supply of factor replacement therapies, 

growing healthy children, and families and communities. 

Together, the bleeding disorder community can work 

towards achieving success that can last a life time. The 

conference aimed to have participants leave feeling reinformed 

and re-invigorated to take on the challenges of 

being a part of this community. 

One challenge facing the NZ delegates is sharing the 

lessons brought home with them with rest of New 

Zealand. The following reports from the HFNZ conference 

delegates cover not only the main points from the 

presentations, but their personal reflections of the 

sessions and events. Nearly all the sessions are covered 

to give readers a greater sense of how wide the scope of 

bleeding disorder care truly is and how many dimensions 

of life it impacts on. 

Special thanks to Wyeth, Roche, Novo Nordisk, Bayer 

Schering Pharma and Pharmac for providing funding for 

some of the presenters and health workers to attend. 

Also thank you to the conference sponsors Baxter 

Healthcare, CSL Limited Bioplasma Division, Wyeth, 

and Novo Nordisk - their exhibition booths were fun and 

informative and all the delegates enjoyed the many and 

varied goodies that were on offer. Many thanks also go 

to Leanne Spencer for her excellent organizational skills 

in getting us all there and Natashia Coco from HFA, the 

main conference organiser, who did an exceptional job 

along with the other HFA staff. 

HFNZ Delegates included: Belinda Burnett, Colleen 

McKay, Drew McKenzie, Helen Spencer, Chantal Lauzon, 

Deon York, Grant Hook, Michael Ho, Steve Waring, T.A. 

Stirling, Martyn Waring, Stephanie Coulman, Diana Bell, 

Daryl Bell, Shane Fraser, Maree Fraser, Rob Dudson, 

Judith Dudson, Catriona Gordon, Lee Majoribanks, Robyn 

Thomas, Hemi Thomas, Frances Thomas, Wayne Hunter, 

Rachel Collins, Jack Finn, Sandra Poff, Robyn Coleman 

and Lorraine Bishop-Porter. 

14th Australian & New Zealand Haemophilia Conference 

Programme of Presentations 

Friday 5 October 

Official Welcome - Gavin Finkelstein (President HFA) & Deon York (President HFNZ) 

Plenary 1: Key issues in haemophilia 1 

Chair: Dr Scott Dunkley 

Ethnomics, identify and agency in haemophilia care - A/Prof Ian Kerridge 

The role of health-related quality of life for outcome assessment in haemophilia - Dr Katherlijn Fischer 

Inhibitor risk profiling - the care and 

management of inhibitors 

Helping families to manage bleeding 

disorders better 

Hepatitis C treatment 

and care 

Chair: A/Prof John Lloyd Chairs: Clare Reeves & Kelly Brady Chair: Dr Michael Pidcock 

Living with an Inhibitor 

- a personal reflection 

Michael Prendergast 

Predicting inhibitors 

Dr Jamie Price 

Role of plasma products in the 

treatment of haemophilia today 

Dr Scott Dunkley 

Treatment of patients with inhibitors 

and immune tolerance 

Dr Chris Barnes 

Understanding von 

Willebrand Disorder 

Chair: Dr Ross Baker 

Some practical aspects of laboratory 

testing for von Willebrand Disorder 

Geoff Kershaw 

Demystifying the classification of von 

Willebrand Disorder and lessons from 

the Australian clinical trials 

Dr Ross Baker 

1 + 1 = 3 - A family experience of von 

Willebrand Disorder 

Lorraine Bishop-Porter 

Plenary 2: You won’t die from Laughing 

Facilitators: Patricia Cameron-Hill and Shayne Yates 

Understanding pain and needle phobia 

- comfort and coping strategies 

Dr Angela Mackenzie 

Impact of bleeding disorders on the 

family - tools for advocating for your 

child and family 

Colleen McKay 

Parents & health professionals in 

partnership - improving services in 

Haematology/Oncology unit at the 

Women’s & Children’s Hospital 

Anne Jackson & Sharyn Wishart 

Positively negative 

Neil Boal 

Hepatitis C treatment and care: 

relevance to haemophilia 

Prof Geoffrey Farrell 

Making decisions about 

hepatitis C treatment: what men 

are thinking 

Dr Stephen McNally 

Youth matters Fitness in children 

Chairs: Maureen Spilsbury & 

Robert McCabe 

Building relationships - effective 

communication and telling partners 

about bleeding disorders/blood borne 

viruses 

Dr Sarah Martin 

Better health and fitness: laying 

the foundation for positive and 

independent managment of 

haemophilia 

Brendan Egan & Janine Furmedge 

Making the move: There is planning 

and there is what actually happens! 

Leonie Mudge 

Room: Canberra Room 

Fitness and physical activity in 

children with haemophilia 

Dr Carolyn Broderick 

Strategies to promote healthy 

participation - overcoming the 

barriers 

Wendy Poulsen and Salena 

Griffin 

Auckland Islands sea kayak 

adventure 

“Bloody Can Do It” 

Jack Finn 


loodlinesupplement

Good-bye Port Pie! - Haemophilia Foundation of New Zealand Inc.

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