Suzanne O'Callaghan is HFA Policy Research and Education Manager
It has been very exciting to hear reports from community members that they are now cured after treatment for hepatitis C with the new Direct Acting Antiviral (DAA) treatments. After so many years of living with HCV and, in some cases, unsuccessful attempts at interferon-based treatment, they are now free of the virus.
In this issue of National Haemophilia Len and Paul share their personal stories about their treatment experience. They speak about how unlike the old interferon treatments this treatment was for them; and what a difference being cured has made to their life.
In February 2017 the Kirby Institute estimated that 25,890 people had initiated hepatitis C treatment with the new DAAs during March to September 2016, which is about 11% of the total number of people living with chronic hepatitis C in Australia. The number of people initiating treatment has decreased every month, from 5070 in March 2016 to 2,500 in September 2016.(1)
Although you would expect to see a big number of people accessing treatment in the first few months after waiting so long for the new treatments, the steady reduction in treatment numbers has surprised and concerned Australian hepatitis clinicians and hepatitis organisations. With such large numbers of Australians with hepatitis C still untreated and smaller numbers coming forward for treatment, it remains a public health problem.
Deciding to delay hepatitis C treatment until symptoms of liver disease occur is a particular concern, and one that has also been raised in the bleeding disorders community:
As you can see in the personal stories of hepatitis C treatment published in National Haemophilia over the last year, people with bleeding disorders and hepatitis C who have cirrhosis have been treated successfully and painlessly for their hepatitis C with the new DAAs. Nevertheless, having the opportunity to cure their hepatitis C before they developed cirrhosis would have been preferable.
David, who told his hepatitis C treatment story in the June 2016 National Haemophilia, explained that he was not diagnosed with hepatitis C until 20 to 30 years after he acquired it, by which time he already had cirrhosis. If he had known earlier, he would have tried treatment much earlier. Others had tried the old interferon treatments but they were unsuccessful and they have spent years worrying about their liver health while waiting for new treatment options. The very high success rates and few or no side-effects of the new treatments has been revolutionary. David’s message about the new treatments is short and to the point: “So if you have hep C, take care of it. Don’t wait!”
HFA is keen to ensure that every Australian with a bleeding disorder and hepatitis C has the opportunity to have treatment as soon as possible. However, we are aware that some people experience barriers preventing them from accessing the new treatments.
If you or someone you know have a problem that is stopping you from accessing hepatitis C treatment, we strongly encourage you to talk to your Haemophilia Treatment Centre or your local Foundation or HFA to see what solutions can be found.
As of 1 January 2017 DAA treatments available on the PBS are:
Some are used in combination with each other. Some combinations are once-daily tablets.
In November 2016 two new combinations went before the Pharmaceutical Benefits Advisory Committee (PBAC) to be approved for the PBS:
PBAC recommended that both Technivie and Epclusa go to the Australian Government Minister for Health, who will consider pricing matters, negotiate with the pharmaceutical companies and make a decision about funding the new medications to go on the PBS.
Increasingly the focus of new treatment development has been on higher cure rates (90-100%), minimal or no side-effects, simple treatment regimens (eg, once-daily tablets), and increasing the range of treatments so that there are treatment options for the variety of genotypes and for those who have had unsuccessful treatment with other DAAs. Clinical trials have considered safety and effectiveness in people with cirrhosis, HIV/HCV co-infection and kidney disease. Some, such as Harvoni and Zepatier, have also been trialled in people with bleeding disorders, showing high cure rates, good safety, few side effects and did not affect bleeding disorder-related bleeding or management of the underlying bleeding disorder.(2,3) More treatments are currently in the pipeline.
The Australian Government has committed to eliminating hepatitis C in Australia by 2026. We would like to achieve this much earlier in the bleeding disorders community. With the range and success of the new treatments available, this is finally looking like a target we can reach.
1.The Kirby Institute, UNSW Sydney. Monitoring hepatitis C treatment uptake in Australia February 2017;6. < http://kirby.unsw.edu.au/research-programs/vhcrp-newsletters >
2. Stedman CA, Hyland RH, Ding X. Once daily ledipasvir/sofosbuvir fixed-dose combination with ribavirin in patients with inherited bleeding disorders and hepatitis C genotype 1 infection. Haemophilia. 2015 Aug 28. doi: 10.1111/hae.12791
3.Hezode C, Colombo M, Spengler U, et al. C-EDGE IBLD: Efficacy and safety of elbasvir/grazoprevir in patients with chronic hepatitis c virus infection and inherited blood disorders. Presentation at The International Liver Congress™, EASL – European Association for the Study of the Liver, Barcelona, Spain, 13-17 April 2016.
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