Good news about hep C treatment for people with haemophilia

Results presented at an international conference have given hope of a cure for those people in Australia with bleeding disorders who also live with hepatitis C. For people living with long-term infection with hepatitis C, the results of clinical trials of hepatitis C treatment presented at the European Association for the Study of the Liver (EASL) Congress in Copenhagen at the end of April 2009 give welcome news of higher cure rates. This is even for those with genotype 1, the commonest strain of hepatitis C among people with bleeding disorders in Australia, but also the hardest to treat.

"Many people with haemophilia in Australia acquired hepatitis C from the blood products they used for treatment in the days before testing was available for the virus," explains Gavin Finkelstein, Haemophilia Foundation Australia President. "That means they’ve been living with hepatitis C for 20-30 years, with symptoms such as fatigue, nausea and liver pain – and that’s on top of the joint damage and other effects of repeated bleeds from the haemophilia itself."

"We think I was actually infected way back in 1978, when I started treatment with a plasma concentrate pooled from many donors," says Kevin Fisher, who has haemophilia, "but I didn’t find out until 1990 after hepatitis C testing became available. Back then I was told by a specialist that I probably only had 20 years ahead of me because there was no treatment at that stage. I had a responsible job in a major Australian company and the hep C symptoms made it hard to do my work – I had to give up my social life and looking after things at home and slept all weekend, just so that I could go back into work on Monday."

"The concern for those who have this liver infection is the possibility of serious liver damage or liver failure over time – including those with bleeding disorders who have long-term infection, which can increase the risk of liver damage," explains Associate Professor Stuart Roberts, Director, Gastroenterology and Hepatology at The Alfred hospital in Melbourne.

"The good news is that the results of treatment continue to improve – and successful treatment can prevent liver failure." "You know, I’d got used to the idea that I was only going to live a short life, which was confirmed for me when I tried hepatitis C treatment in the early 90s. It had some difficult side effects and didn’t help," says Kevin Fisher. "But last year I decided to have the latest therapy and although it had side effects too, it’s been successful and I’ve cleared the hepatitis C virus. I’d given up hope but now I feel better than I have for years. My wife and I have just had our first real holiday in several years and it’s been great."

According to the results of the large Australian led, international CHARIOT clinical trial presented at the European Association for the Study of the Liver Congress in Copenhagen at the end of April 2009, people with genotype 1 hepatitis C who receive treatment when they have minimal, or no liver damage, have double the chance of a cure, compared to those treated in the later stages of liver disease.

The study included more than 700 Australians with hepatitis C and 33 Australian hospitals. "These cure rates are a lot higher than we thought – up to 7 out of 10 people with genotype 1 may be cured if treatment starts before liver scarring or damage has occurred," says Stuart Roberts, who was the lead investigator. And it’s far from hopeless for people who already have some liver damage or who previously relapsed after treatment.

Some, like Kevin, have recently had successful treatment or retreatment with the current standard treatment. The same international conference also reported on the new hepatitis C treatments in the pipeline. A combination treatment of a new drug telaprevir with pegylated interferon and ribavirin is currently being trialled in Australia. At the conference, researchers presented data on the US/European arm studying people with genotype 1 hepatitis C treated with this triple therapy.

The study found that up to 76% people who had previously relapsed achieved a cure with this treatment. "This new treatment combination shows great promise for people with bleeding disorders who relapsed following previous treatment," says Stuart Roberts.

If the clinical trials continue to show successful results the treatment should be available in Australian clinics some time after 2010. "There could be over a thousand people with bleeding disorders in Australia who acquired hepatitis C via blood products contaminated with hepatitis C," claims Gavin Finkelstein.

"Some of them have already cleared hepatitis C naturally or through treatment. But for the many others who haven’t been so fortunate, we encourage them to come forward, have their liver health reviewed and talk to their hepatitis specialist about their options for hep C treatment – we know it won’t help everyone, but it’s worth knowing where you stand. Life is tough enough with haemophilia without having to battle with hep C as well."

For more information, see the HFA media release on this news item: 15 May 2009 – Good news about hep C treatment for people with haemophilia

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