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Compassionate access to new hepatitis C drugs an "emergency" for European patients
Keith Alcorn, 2013-04-30 17:30:00
European governments must move quickly to ensure that compassionate use arrangements are put into place to allow access to new hepatitis C drugs for people with cirrhosis, advocates and doctors said at the 48th International Liver Congress (EASL 2013) in Amsterdam last week.
However, clear differences in opinion emerged between patients and doctors regarding who should make decisions about acceptable levels of risk to patients during a symposium on compassionate use organised by the European Liver Patients Association.
Dr Daniele Prati, speaking on behalf of the European Association for the Study of the Liver (EASL), said that EASL welcomed compassionate access programmes for people with hepatitis C who would otherwise experience progression of disease, such as decompensated cirrhosis, provided that the risk-benefit ratio is positive.
But patient advocates speaking at the symposium asserted that patients should have the right to make informed choices about the risks and benefits of new drugs – even where information is lacking.
“We don’t know why we can’t take these risks, it is our lives”, said Ivan Gardini, Vice-President of the European Liver Patients Association. Mr Gardini fought to obtain boceprevir after being excluded from clinical trials and a compassionate use programme in 2011, due to a very high platelet count. He had been diagnosed with cholestatic and aggressive hepatitis C recurrence following a liver transplant in 2009, and had a life expectancy of two to three years. Following a course of triple therapy he remains HCV-free, 36 weeks after completing treatment, but says he is too cautious to declare himself cured – yet.
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