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 I’d 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, I’d had hep C for over 30 years. The virus actually works very slowly, over decades. The word ‘hepatitis’ means inflammation of the liver, and that’s 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 it’s 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 didn’t take it too seriously. I am only just starting to experience symptoms now, and they’re 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 don’t know that this virus exists, or what its impact is. It’s not taken seriously.
That’s 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 it’s just not being diagnosed and dealt with in an effective way. Nine out of ten of us who have hep C simply don’t know we’ve got it. The government in this country doesn’t seem to have had a very vigorous response. If you look at somewhere like France, half the people with the virus have already been diagnosed. But in this country we’re way behind; only one in ten people with hep C have been diagnosed.
Well, I’ve always been a bit of a ‘whistle blower’ and I’m 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 hep C, a serious condition, which can have a massive impact on people’s quality of life and which can ultimately kill them. I’m not sure what that says about governmental priorities, but I do know it means that people aren’t getting tested, diagnosed and treated for this virus. We don’t even have a proper study of the level of infection here in the UK, but the Hepatitis C Trust estimates it’s up to half a million people. And everyone with hep C deserves proper care and treatment if they want it.
It’s especially important that people like me, who are over 50 and had a blood transfusion before 1991 (when the NHS started to test donated blood for the hep C virus), come forward for testing. I think the government should be telling people in that situation that they are at risk. People could have had the virus for decades and it’s 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 a 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. It’s passed on through blood-to-blood contact – your blood or broken skin needs to come into contact with someone else’s blood. It doesn’t seem to be passed on through sex very easily (though this can happen) but it can be transmitted through unsterilised equipment such as syringes and needles. Or, as in my case, through blood transfusion received before 1991.
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 per cent 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 I’ve 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, I’ve 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. I’ll 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. I’ve always felt that ‘activism is my rent for living on this planet’ and I’ve 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 …
The Hepatitis C Trust
The Hepatitis C Trust is at www.hepcuk.info. This article first appeared on the trust’s website.
If you would like to support The Hepatitis C Trust, your donation will be used directly to save lives. Hepatitis C is a potentially life-threatening illness that can cause cirrhosis, liver failure and cancer, yet fewer than one in six people with hepatitis C have been diagnosed. That means that hundreds of thousands of people must be alerted to get tested before it is too late.