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Addressing the impact of hepatitis C on the bleeding disorders community is a priority for HFA. In the last few months hepatitis C has also taken a high profile on the national government agenda as well.
In December 2014 the Australian Government House of Representatives Standing Committee on Health commenced an inquiry into hepatitis C in Australia.
The Inquiry is looking at particular issues, including:
The Australian Government heard witnesses on hep C, including HFA, at the recent Public Inquiry Hearings.
Public Hearings for the Inquiry took place in January 2015. HFA had the opportunity to present evidence at the Melbourne Hearing on 21 January 2015 and Gavin Finkelstein, HFA President, told his personal story of living with hepatitis C. You can read the transcripts of the Hearings at www.tinyurl.com/inquiryhearings.
The Inquiry is continuing to gather evidence and HFA made a written submission to the Inquiry on the issues for the bleeding disorders community in February 2015 (submission number 83 – download submissions here). Some community members also made individual submissions.
We hope this Inquiry will be a catalyst for real and positive change for Australians with hepatitis C, and particularly people with bleeding disorders – and their partners, families and carers, who are very much affected by it.
For more information on the Inquiry, go to www.aph.gov.au/hepatitisC.
In March 2015 the Pharmaceutical Benefits Advisory Committee (PBAC) will be meeting to consider whether to recommend adding several new hepatitis C treatments to the Pharmaceutical Benefits Scheme (PBS):
Asunaprevir (Sunvepra®) – for the treatment of chronic hepatitis C genotype 1b
Daclatasvir (Daklinza®) – for the treatment of chronic hepatitis C
Ledipasvir with sofosbuvir (Harvoni®) – for the treatment of chronic hepatitis C genotype 1 in adults
Ribavirin (Ibavyr®) – for the treatment of chronic hepatitis C (genotype 2 or 3) in combination with sofosbuvir in patients 18 years or older who have compensated liver disease
Sofosbuvir (Sovaldi®) – for the treatment of hepatitis C viral infection
Listing these new treatments on the PBS would provide equitable and affordable access to Australians.
You may recall that sofosbuvir went before PBAC in July 2014 but was rejected on the basis of its high cost and limited information about cost-effectiveness. It is now being resubmitted with more information.
These new treatments have been described as “game changers”. They are part of the new wave of Direct Acting Antiviral (DAA) drugs that are far more effective against hepatitis C than the previous treatments. Most of these treatments are already available in other countries.
In clinical trials they have had very high success rates – over 90% for some – with few side-effects, and shorter treatment courses. Some need to be taken in combination with other medications (eg, interferon, ribavirin, ledipasvir) to be effective. Some will be available in interferon or ribavirin-free combinations. Some have had encouraging results even with people who previously had unsuccessful treatment or who have advanced liver disease. Ledipasvir with sofosbuvir was trialled in a small study of people with bleeding disorders and hepatitis C genotype 1 in New Zealand, with excellent success rates, few side-effects and no safety concerns (1).
HFA provided community comments to PBAC about these treatments in February 2015.
You may have seen the HFA hepatitis C survey earlier this year. This was an important way for HFA to gather the personal stories of community members affected by hepatitis C to submit as evidence for the HFA PBAC comments and for the Public hearing and submission to the Inquiry.
Thanks to anyone who completed the HFA hep C survey. Your words were very powerful and they were extremely valuable for our evidence!
Advancing liver disease and limited treatment options is a critical problem for some of our community members with hepatitis C. Treatment to cure their hepatitis C is crucial – and urgently required.
HFA is pursuing every avenue possible around access to these new treatments for affected community members.
In November 2014 we sought expert advice from the Australian Haemophilia Centre Directors’ Organisation and from hepatitis specialists to clarify the current situation for affected people with bleeding disorders nationally – their need for treatment, potential benefits and issues relating to current and upcoming treatments. Collaborative work on this is ongoing.
HFA has provided written and oral submissions to government on these new treatments and will be following up with more representation to government.
If you have hepatitis C and a bleeding disorder, remember that you would need to have your liver health assessed before you could be considered for treatment:
Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples.
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