My name is Clare Groves and I am 49 years old. I contracted the hepatitis C virus sometime in the nineties, though I was unaware of it at the time. I didn't get tested until 2008 when I was living in Spain. I was put on the old treatments for hep c - Interferon and Ribivirin - in 2010. I knew that there were several new treatments in the pipeline but there was no clear timeline of when they’d become available to the public, so the old drugs were my only treatment option. The treatment did not work.
In late 2012 I returned to live in London. I contacted the Hepatitis C Trust and attended a patient conference. This gave me insight, knowledge and empowerment; which I used to lobby my specialist at the hospital. I learnt that a new treatment called Harvoni (sofosbuvir and ledipasvir) marketed by Gilead was available, I learnt about the NICE Guidelines and I learnt that it was okay to ask for this treatment.
But the high cost of the medicines meant I had to wait three years to be treated. During that time my physical health and my mental health deteriorated. I consider myself to be fortunate that I was able to fight tooth and nail for treatment - a treatment that was successful.
I believe everyone should receive the treatment they need without the consideration of cost. Nobody should be made to feel undeserving of a treatment.
As citizens and service users we should stand up and take more responsibility for the NHS. The government should be held accountable for how they manage funding and how they use that funding to pay for treatments. I feel that if we did this, that in turn would lead to more bargaining power to use with the pharmaceutical companies over the cost of treatments. We can and should hold the pharmaceutical companies to account for putting profit before people.