From the President

GAVIN FINKELSTEIN

Gavin Finkelstein is President, Haemophilia Foundation Australia

Hepatitis C is once again in the news. The UK government announced a public inquiry into contaminated blood and blood products in 2017 and more recently that a retiring High Court judge would develop terms of reference and chair the UK inquiry due to commence in May 2018.  In the UK, there have been several schemes that provide financial support to people who acquired blood borne viruses through the UK blood supply. In Australia there was a Senate Inquiry into Hepatitis C and the Blood Supply in 2004. There were legal settlements for people in Australia who contracted HIV through their treatments for haemophilia but other than one scheme in the ACT, there has been no financial support for people who acquired hepatitis C through their treatments.

We described the burden of hepatitis C on our community members in Double Whammy (2007) and Getting it Right (2009), the publications that reported the results of our needs assessment in 2006-9. That burden has remained intense in the years that have followed, and for many people in our community the burden of both hepatitis C and a bleeding disorder has been overwhelming. 

You will see what HFA has done in relation to hepatitis C over the years on our website. HFA made a decision to seek government support for an ex gratia recompense scheme in 2010. People living with health issues related to hepatitis C needed assurance that they could provide for some of their financial needs, especially if their illness progressed.  We proposed a scheme that would provide financial support to people who continued to suffer from the impact of hepatitis C and in some cases for their families. Although sometimes met with sympathy we failed to get government support for such a scheme. We turned our attention to making sure funding for the new direct acting antiviral (DAA) treatment would be available, when these drugs were so promising after the limited success of earlier treatments.  We were pleased these drugs were funded, and we are advised by HTCs and hepatitis clinics that many people with bleeding disorders have now had treatment. We are currently trying to establish how many people have not had treatment or do not know they have hepatitis C and/or their treatment needs. 

Many people tell us they have had treatment success with DAAs – and are cured! I am one of these, and after several failed treatments over the years I am amazed by the simplicity of DAAs. 

However, hepatitis C leaves an ongoing legacy for some in our community. Some people have been cured of hepatitis C but find they have marked liver cirrhosis and will continue to need monitoring for their liver health into the future. Some have told us that with advanced liver disease from their hepatitis C and the loss of income over their lifetime from symptoms of hep C on top of their haemophilia, they are still struggling to get by, even though they have now been cured. The burden of living with a bleeding disorder and a blood borne virus remains challenging and we are keen to understand the impact on our community and what their needs are. 

We are also soon to investigate the needs of older people in our community more generally. We want to understand more about older people in our community, and how they are coping with the burden of long term outcomes of a bleeding disorder. For many, the legacy of hepatitis C is bound up with this, but for everyone living with long term joint damage and pain, and the consequences of financial instability and other social and psychological difficulties, there is another set of complexities to face as they age. We will make sure everyone has a chance to make comments and contribute to this work.