Michael Matherson MSP, Minister for Public Health told us that Scotland is a world leader in tacking Hepatitis C and reiterated the aim of the Scottish Government to eliminate Hepatitis C in Scotland. The Sexual Health and Blood Borne Viruses Framework will be updated in 2015 so he was keen to start talking to patient now about what we’d like to see.
Dr John F Dillon gave a presentation on which new treatments would be available. He explained that they have a higher success rate and offer the potential of treatment without interferon. However, he stressed that to seriously reduce the amount of cirrhosis in Scotland the number of people treated every year has to continue to rise. He felt that this could lead to difficult choices as the new treatments could be four times as expensive as current treatment.
Charles Gore, from the Hepatitis C Trust, made a passionate plea for patient activism. He felt that what is good or public health and what is good for individual patients isn’t always the same thing. He said that it was “Our [patients] job to make sure that we get the best drugs. There mustn’t be two tiers of people; those that get the best treatment and others who have to go through interferon first.” He also acknowledged the important role of people with Haemophilia in Hepatitis C activism in Scotland.
In the workshops we asked about some of the issues that were raised in evidence to the Penrose Inquiry. In relation to immune fatigue (the idea that being repeatedly exposed to a virus might reduce the immune system’s ability to respond to it, even with treatment) we were told that the new treatments work by preventing the virus from replicating so are not affected by a patient’s immune system. In relation to infection with more than one genotype, we were told that some of the new treatments are performing well trials for a wide range of genotypes. We also raised the importance of extra hepatic manifestations (when Hepatitis C causes problems outside the liver). Charles Gore, agreed that this was a very important area but urged people not to assume all their symptoms were caused by Hepatitis C in case this meant they missed signs of another condition.
Most importantly, the conference heard the personal experiences of lots of people who have battled Hepatitis C. A strong theme from the patients was the importance of follow up services after treatment, even if it had been successful.
There was a lot of support for the idea of holding the conference again. If this happens we will let everyone know so that more people can benefit from being involved.