Haemophilia Foundation
New South Wales
Skip to content
Normal contrast
High contrast
MENU
Search for:
Contact Us
Donate
Home
News
About Us
Who We Are
Our Committee & Staff
Working with HFA
Contact Us
About Bleeding Disorders
Fast Facts
FAQs
View All FAQs
Haemophilia
Von Willebrand Disease
Women with Bleeding Disorders
Haemophilia and carrying the gene
Haemophilia testing in women and girls
VWD in females
The Female Factors
Personal stories
Other women's resources
Youth with Bleeding Disorders
Other Bleeding Disorders
Factor I Deficiency
Factor II Deficiency
Factor V Deficiency
Combined Factor V and Factor VIII Deficiency
Factor VII Deficiency
Factor X Deficiency
Factor XI Deficiency
Factor XIII Deficiency
Inherited platelet function disorders
Acquired haemophilia
Gene Therapy
Hepatitis C & HIV
Hepatitis C
HFA hepatitis C strategy
Double Whammy Report
Getting It Right evaluation
Hep C Resources
Hep C Treatments
Hep C Personal Stories
Terry's Story 2010
Ben's Story 2010
Les's Story 2009
Telling others about hep C
World Hepatitis Day
HIV
HIV and Bleeding Disorders
Living with HIV
40 years of HIV - where to next?
Living with a Bleeding Disorder
Personal Stories
HFA YouTube Channel
Newly Diagnosed
Parents and Families
Ben – a father’s perspective
Mindi Palm - Living like a Swede
Growing up with a bleeding disorder
Youth
Tim - young person with haemophilia
Alan - telling others
Shauna - sharing her life experience living with a bleeding disorder
Women
Sharron - A woman with haemophilia, carrier, mother of a son with haemophilia, dad has haemophilia
Living with haemophilia
Living with VWD
Susie – living with type 1 von Willebrand disorder
Shauna Adams – managing type 3 VWD
Connection & Peer Support
Connecting to others
Overcoming Challenges
Sharing Knowledge
Family & Community Camps
Getting Older
Mike - older person with haemophilia
Hepatitis C
Anth's treatment story
Simon's treatment story
Len's treatment story
Paul's treatment story
David's treatment story
Women can have hep C too - Mary Jane's story
Finally cured of hep C - Gavin's story
Share your story
Disclosure
Travel
Getting Older Info Hub
Safety and Supply
Support & Services
HFNSW Family Camp
State & Territory Foundations
Treatment Services
Useful Contacts & Other Links
ABDR & MyABDR
ABDR
What is MyABDR
Why use MyABDR?
MyABDR Updates
Privacy Consent
Background
Have Your Say
MyABDR Feedback
Kids
Colouring in fun!
Livewire
Youth
Factored In - youth website
Youth News
Livewire
Colouring in fun!
Publications
Bleeding Disorders
Factor Matters Newsletter
Information Resources
Bleeding Disorders
Haemophilia
Newly Diagnosed
Haemophilia booklet
Gene therapy
Mild Haemophilia fact sheet
Living with Mild Haemophilia Guide
Simple guide to haemophilia testing in women and girls
Comprehensive haemophilia testing in women
Acquired haemophilia
Sport
Von Willebrand Disease
Women with Bleeding Disorders
Young women
Sport and exercise for young women
Snapshot of bleeding disorders in females
Simple guide to haemophilia testing in women and girls
Comprehensive haemophilia testing in women
Finding out you carry the gene
Telling others
Young People
Getting older
For health professionals
Getting Older Info Hub
Hepatitis C
Hep C Fact Sheets
Personal Stories
For health professionals
Sport and Exercise
On the move with haemophilia
Welcome to On the Move with Haemophilia
About haemophilia
Exercise and haemophilia
Exercise and sports
Factors to consider
Warm ups and cool downs
Protection
Managing bleeds and injuries
Recovery and rehabilitation
Tips for parents, teachers, coaches and friends
For Health Professionals
Nursing
Getting Older
Hepatitis C
National Haemophilia Journal
Get Involved
Donate Now
Fundraising
Memberships
Members Contact Details Updates Form
Volunteer
Events
Past Events
News
Share Your Story
Surveys
Annual Family Camp Survey
HFNSW Member Survey
Finally cured of hep C - Gavin's story
Gavin Finkelstein is President of Haemophilia Foundation Australia (HFA) and Haemophilia Foundation Western Australia (HFWA). He has severe haemophilia A. He talked to HFA about living with hepatitis C, treatment and being cured. Our thanks to Gavin for sharing his personal story.
For Gavin, growing up with severe haemophilia had meant living with joint bleeds. His generation became adults before the arrival of prophylaxis treatment to prevent bleeds and Gavin had relied on plasma-derived clotting factor concentrates to manage his bleeding episodes whenever they occurred. The regular bleeds resulted in arthritis and other joint and muscle damage.
‘As they say, pain was my constant companion, but not my friend.’
What he didn’t realise at the time was that another unfriendly traveller had also hitched a ride on his treatment products – hepatitis C virus, which had infected blood products like clotting factor concentrates through blood donations. By 1993 Australia had introduced new safety measures to prevent transmission of hepatitis C in blood products, but in the years before then Gavin had already been exposed to hepatitis C through his treatments many times.
Some years earlier Gavin had been told he had non-A non-B hepatitis – the name for hepatitis C before there was a test - but little was known about it at that stage. When his diagnosis with hepatitis C was confirmed in 1993, it had a very different impact on him.
‘At first I freaked out,’
he said.
‘After living through the HIV epidemic, I thought I was going to die. I was very worried about transmission and passing it on to others. I broke off my relationship and was fearful about going into other relationships. It had a very negative effect on my motivation and my career.’
EARLY TREATMENTS
Early hepatitis C treatment with interferon injections and ribavirin tablets was prolonged and arduous, with difficult side-effects.
‘I had 72 weeks of treatment in 2001-2, which was horrific. I was working the whole time, but it turned my mind to mush. I was forgetful, I was grumpy, I had no energy. It affected my home life as well as my work. Then I relapsed 6 weeks after the treatment finished, which was pretty demoralising.’
With the ongoing impact of hepatitis C symptoms – fatigue, brain fog, lack of energy and motivation – and his increasing arthritis and joint problems with haemophilia, Gavin took early retirement from his job in the public service but continued his volunteer roles with HFWA and HFA.
In 2009 he tried the pegylated interferon and ribavirin treatment again, but his treatment was stopped after 6 weeks when tests showed it wasn’t working.
TREATMENT AND CURE
In 2016 the new direct acting antiviral (DAA) treatments for hepatitis C became available in Australia. They were described as ‘revolutionary’ – and in Gavin’s opinion, lived up to their promise.
‘I had one of the new treatments, Harvoni, and it was a doddle. One tablet a day for 12 weeks and minimal side-effects. And I was cured – it was fantastic. It was the best thing I ever did. Now I feel fine and my liver test results are good too.’
Checking liver test results to make sure his liver had recovered was an important step. This testing took place as a standard requirement when Gavin joined a clinical trial for a new haemophilia treatment, but he encouraged others to ask about testing if they didn’t know what their liver test results were after being cured.
‘Don’t wait’ was the message he had for others considering treatment for hepatitis C.
‘Don’t even think about it. Go for it – get it done. These new treatments have such positive results and there is hardly any impact on your life to undergo the course of treatment. There are several different treatments, so your doctor will be able to find one that suits your individual health and lifestyle.
‘If you are worried about having hep C treatment, ask your haemophilia team or your hepatitis clinic to put you in touch with someone who has had the new therapies so they can have a chat with you about what it’s like. These days you don’t need to think about the implications for your work or home life because it’s so easy to take and there are hardly any side-effects. And when you are cured it puts you in good stead to deal with the rest of your life with haemophilia.’
Date last reviewed: 27 July 2021