Posted: 14-Feb-2007 << BACK
I was diagnosed with hepatitis C or hep C in 2005. I had no idea that I had this virus. I was having routine blood tests when it showed up. It turned out that Id contracted it through infected blood, given to me as a transfusion during the birth of my youngest daughter, Sam, in 1971.
So by the time I was diagnosed, Id had hep C for over thirty years. The virus actually works very slowly, over decades. The word hepatitis means inflammation of the liver, and thats what happens the liver gets inflamed and scarred and you can get cirrhosis and liver cancer.
In fact I do have cirrhosis. I could still have a good few years even decades of life left but its hard to say. I could be facing liver cancer tomorrow. What I can say is that having hep C means that I live with a sharp sense of my own mortality which in many ways makes life more vivid and immediate. It makes me even more determined to just get on with things.
But when I was first diagnosed, I didnt take it too seriously. I am only just starting to experience symptoms now, and theyre quite mild. I knew that I had it and I felt fine, and I also knew the impact of the virus could be very gradual. I think I was also affected by the general air of indifference that hangs over hepatitis C. Most people just dont know that this virus exists, or what its impact is. Its not taken seriously.
Thats partly the reason I want to speak out about the fact that I have hep C. It has been called a silent killer because you can go for years with no symptoms. It is also a silent killer because its just not being diagnosed and dealt with in an effective way. Nine out of ten of us who have hep C simply dont know theyve got it. The Government in this country doesnt seem to have had a very vigorous response to hep C. If you look at somewhere like France, half the people with the virus have already been diagnosed. But in this country were way behind; only 1 in 10 people with Hepatitis C have been diagnosed.
Well Ive always been a bit of a whistle blower and Im not going to stop now. I want to blow the whistle on the fact that hep C must be taken seriously as a public health challenge and must get the attention and resources that it needs.
I am astounded that the Government has spent 40 million on telling the public about the switchover to Digital TV but only 3 million on raising awareness of hepatitis C, a serious condition which can have a massive impact on peoples quality of life and which can ultimately kill them. Im not sure what that says about governmental priorities, but I do know it means that people arent getting tested, diagnosed and treated for this virus. We dont even have a proper study of the level of infection here in the UK, but The Hepatitis C Trust estimates its up to half a million people. And everyone with hep C deserves proper care and treatment if they want it.
Its especially important that people like me, who are over fifty and who had a blood transfusion before 1991, come forward for testing. I think the Government should be telling people in that situation that they are at risk. People who got hep C through blood transfusion before 1991 could have had the virus for decades and its so important to get tested. It means you can either rule out the virus or start to take control of your health and get treatment. Either way, you can only benefit.
The other priority and the other reason to start speaking out about hep C is to prevent its transmission. We need a hell of lot more resources in awareness raising, and in challenging the stupid stigma that surrounds hep C this is just the same as the way that stigma prevented people with HIV from getting a fair deal.
The fact is, hepatitis C can affect anyone. Its passed on through blood-to-blood contact your blood or broken skin needs to come into contact with someone elses blood. It doesnt seem to be passed on through sex very easily, (though this can happen) but it can be transmitted through unsterilised equipment like syringes and needles. Or as in my case, through blood transfusion before 1991 (when the NHS started to test donated blood for the hep C virus).
The other reason to start making a bigger noise about hep C is that there are some promising treatments conventional and alternative medicines seem to work for different people and up to 50% of people who get interferon treatment get rid of the virus. We need to be focusing on effective treatments and making sure people get access to them.
One of the most positive things for me since being diagnosed is seeing the way in which many people with hep C are taking control of their health and their treatment. A group of people with hep C started The Hepatitis C Trust in 2001, and Ive just become a patron of the Trust. Their website was the first place I went when I was diagnosed. They are doing brilliant work in trying to break the silence surrounding hep C, to make sure that people with hep C get the services and treatment they need, and to link people up to local support groups.
Through them, Ive been meeting other people with hep C, and having a bond and common experience with other people in the same boat is really helpful to me. Ill be adding my voice to the work of The Hepatitis C Trust and to the voices of other people affected by hep C - in the period ahead.
In a way, campaigning with The Hepatitis C Trust is business as usual for me. Ive always felt that activism is my rent for living on this planet and Ive always wanted to celebrate and protect the human body. In a way, speaking out about my hep C is just carrying on what I helped to start at The Body Shop. Life has just taken a more interesting turn
