Until this year hepatitis C was a largely ignored and stigmatised disease in the UK even though it affects between 250,000 and 500,000 people, principally because it had always lacked a high-profile champion. Despite our best efforts we at The Hepatitis C Trust had been unable to find anyone to take on this role and I think some of us had begun to think it might never happen. If you had asked us to describe our ideal champion we would have said: someone who had contracted hepatitis C in a way that could have happened to anyone; preferably a woman; highly articulate with a great sense of humour; very high-profile and very well-respected; well-connected with great communications skills. Then out of the blue – truly like the answer to a prayer – Anita called to ask what she could do to help.
Her decision to announce publicly that she had hepatitis C was very brave. When I later read her one of many emails saying exactly that, her response was (typically) ‘Oh, nonsense.’ But it was indeed brave to put a very personal and life-threatening condition like hepatitis C-induced cirrhosis into the public arena. Of course it was essential to her that she had the support of her family before she went ahead.
Anita was very busy at the time so finding a whole day completely free for press interviews was a challenge. In the end the only possible date was Valentine’s Day. Anita wanted to break the news on radio, a medium she really liked, and Woman’s Hour was the obvious choice. At the same time the news went up on her website and a press release was sent out. Immediately, requests for interviews poured in. Anita never stopped, doing TV news interviews for all the main channels, print interviews for all the national dailies and several magazines and radio interviews for some 20 radio stations. The result over the next 24 hours was blanket coverage. Suddenly hepatitis C was big news for the first time. Even Anita seemed a bit surprised by the amount of coverage and how sympathetic it was. And her story is such a perfect illustration of the problems of undiagnosed hepatitis C that it carries clearly the message that anyone at risk should get tested.
Over the next 10 days our helpline was besieged with calls, many of them from women in their 50s and 60s who, like Anita, had had blood transfusions during childbirth. They had listened to her speak on a subject they would otherwise have ignored, thinking that it was not a disease that would affect them. Indeed it later transpired that many of them who we advised to get tested did in fact have hepatitis C and there is no question for some of them that Anita saved their lives
It did not stop there. Over the next months Anita continued to give interviews, always mentioning hepatitis C and always name-checking the Trust. She was ready to talk to anyone, give speeches anywhere that would give us media exposure. At least once she rearranged a very important meeting to do something for us. And, of course, all the news of her death carried mention of her work for hepatitis C, keeping the disease in the public consciousness.
She was full of ideas of ways to get the message out and we spoke frequently. She was publicly critical of the way the Government had handled awareness raising and yet offered them the use of her image to help them. In March she wrote to all 785 MEPs at the European Parliament asking them to adopt a Written Declaration on hepatitis C. Such was her profile that 470 of them did, the largest number to sign a Written Declaration since 1999. Another of her ideas was to hold a hepatitis C testing day and a pilot is happening in Nottingham at Boots today as part of World Hepatitis Awareness Day on October 1st. This seems like just one fitting tribute to her, highlighting the way that the retail industry can be a force for good. She was also acutely aware of the need to reiterate the message again and again and knew that only a continuing long-term campaign could work.
Nonetheless, what she achieved in just 6 months in raising the profile of hepatitis C is far more than we had been able to do in the last 6 years. More than that, she changed people’s perception of the disease. The public has now come to realise that this is not just a drug user’s disease that happens to ‘other people.’ In the last few months many people have contacted the Trust to tell us that they are now so much more comfortable admitting they have hepatitis C since Anita’s public announcement. For people with this illness that is an extraordinarily precious gift.
For Anita doing brave things clearly came naturally. If it was the right thing to do, she did it. It amazed her that no other high profile person in the UK had publicly talked about having hepatitis C. She had hoped that others would follow her example and was really disappointed when this did not happen. Perhaps her death will act as a catalyst…
Awareness raising was not all she did. The Roddick Foundation supported us financially, notably sponsoring a conference in April whose purpose was to show the NHS in England how to improve services for people with hepatitis C. What is less well known is that Anita claimed the payments due to her under the terms of the Skipton Fund as a result of contracting her hepatitis C through the NHS and she did this solely so she could donate it to us to support our work.
To top it off Anita also became a patron of the Trust. Having found such a wonderful champion and supporter it seems so shocking to lose her so soon. We had a whole programme of work together planned out. This included 2 speeches from Anita in Brussels today, one of them in the EU Parliament, again as part of World Hepatitis Awareness Day. Yet this is not the end of her work with us. With the agreement and support of her family, I will be reading these 2 speeches on Anita’s behalf and so her work goes on. And this is what really matters – that we carry on what she started. However much we may feel robbed of someone so important to us, we feel immeasurably more grateful for what she accomplished in so short a time and what she has set in motion.
October 1st 2007
