I went to my GP in 1995 because I suddenly became jaundiced with quite noticeably yellow eyes.
It was good that he thought to test me for the Hepatitis C Virus (HCV) but unfortunately, when he gave me the positive diagnosis, he gave me the impression that this was some mild virus that I just had to learn to live with. His only suggestion was that I not drink too much. As a result I really paid it no attention and didn’t in any way change my life.
Two and a half years later I was seriously ill, with no idea why. One thing I noticed was that drinking alcohol made me feel a lot worse and I stopped. Someone I knew, to whom I had mentioned that I had HCV, gave me an article he had come across. Its opening sentence ran: ‘Hepatitis C is the most prevalent life-threatening disease in Australia.’ Life-threatening? That had never occurred to me. Now I knew why I was feeling so ill. I got myself immediately referred to a hospital. A biopsy showed cirrhosis and my genotype test came back as 1.
While I was having the tests I discovered an NHS clinic within walking distance of where I was living that offered Traditional Chinese Medicine specifically for people with HCV. I started taking herbs and having acupuncture to deal with some of the worst symptoms, like overwhelming fatigue and night sweats.
This was the start of my efforts to take better care of myself and, over the next 4 years, also involved taking supplements, changing my diet and getting fit. My hospital talked to me about treatment but, as a genotype 1 cirrhotic, my chances of responding with the then available non-peg interferon and ribavirin were not good. So, with peg interferon on the horizon I decided to wait and see.
Towards the end of 1999 I found myself, as a result of a series of chance events, talking to three other people about the idea of setting up a national charity for people with HCV. One of the things we had all noticed was how difficult it was to find good information about the subject, particularly UK specific information, and we were astonished that there was no national charity. Once we decided to go ahead, it took us another 10 months to go through the legal and regulatory hoops required to get The Hepatitis C Trust set up. At the time I really hadn’t given much thought to how the charity was going to function; I was just planning to be a trustee, attend a few meetings every year, maybe make a few suggestions about fundraising. So I was very surprised when the other three turned to me and said; “We’re all incredibly busy, so you’re going to have to run it.” Nowhere, at any time, had running a charity ever featured in my life plan. It is not true to say I was the right person in the right place at the right time; I was just the person in that place at that time. It seemed like the only option.
I had by then already committed to spending the first half of 2001 working in Arizona so it wasn’t until I got back that the Trust really started. I had been thinking increasingly about doing treatment and there were a number of ongoing peg interferon and ribavirin trials taking place. Just before I left for the US a friend of mine, a year younger than me, suddenly found his liver decompensating – he started having encephalopathic episodes and then internal bleeds. He needed and got a transplant very fast. I knew I wanted to do treatment as soon as I got back to the UK.
I used my time in Arizona to get as fit as I could, hiking into the mountains whenever I had the opportunity. When I got back I set about getting the Trust off the ground and I got myself enrolled into a trial for cirrhotics. In preparation for that I was re-genotyped. This time it came back 3. It was retested and confirmed but I never received a satisfactory explanation for the original genotyping. I was thrilled because it doubled my chances of success, although my clinician decided that, because of the cirrhosis, I should still do 48 weeks of treatment, even with type 3.
I managed to work all the way through my treatment – it seemed better to have something to take my mind off it – until, 8 months in I developed pancreatitis and type 1 diabetes and had to stop. Luckily, by then, I had been clear for months. I was still undetectable at 6 months post treatment and continue to be clear more than 10 years later. The diabetes is unfortunate but I would much rather inject myself with insulin 5 times a day than be facing a liver transplant.
About three months after the end of treatment I suddenly felt a huge return of energy. I was elated. I thought: ‘Oh wow, so this is what it’s like to be well.’ Unfortunately this did not last but overall I definitely had more energy than I had had before treatment. This was just as well, because running the Trust is a time-consuming job. Right from the start I have tried to do two things – directly address the needs of people living with hepatitis C and, wherever possible, employ people either currently living with hepatitis C or who have had it and cleared it. And right from the start our overarching aim has been simple: to shut down – because we’re no longer needed.
I have to confess that there have been times over the last few years when the job has got particularly difficult or stressful that I have asked myself why, since I don’t have hepatitis C any more, I go on doing this. All it takes is for me to answer a helpline call that’s come through to the office and I know exactly.