The Hepatitis C Trust responds to BBC report
The Hepatitis C Trust was established in 2001 by people living with hepatitis C who found that there was no organisation to represent their interests, and who wanted to ensure that their voice was heard. In the years since, this has remained our one guiding principle. We exist exclusively for people living with hepatitis C and their families, and everything that we do is focused on providing a concerted patient voice.
Our work is not easy. People with hepatitis C experience significant stigma, and are disproportionately drawn from some of the most disadvantaged and marginalised groups in our society. The people we work on behalf of are often unable to speak out for themselves, so we are driven by the belief that they must be represented. We are patients speaking out for other patients.
It is because of this that we wish to respond to a BBC report this morning that focused on funding that we have received from the pharmaceutical industry. In common with many small and under-resourced charities, and in the absence of statutory funding, we accept financial assistance from a variety of sources, including the pharmaceutical industry. This funding, which we have never sought to conceal, helps charities like ours to carry out our work every day.
It helps us to respond to the 4,500 calls we received to our helpline last year; it helps us to work with frontline drug services and prisons to make sure vulnerable people can access hepatitis C care; it helps us to speak with key decision-makers in the highest echelons of power, and it helps us to raise awareness of the virus among the tens of thousands of people who remain undiagnosed. What it does not do is affect our guiding principles, and what it does not do is influence our work.
Last year we sought a judicial review of NHS England’s decision to limit the number of people who are able to access NICE-approved hepatitis C treatments. This rationing was an unprecedented move by NHS England that, in our opinion, singled out a particularly disadvantaged group and deprived many of them of drugs to which NICE said they were entitled; drugs which cure a virus that causes liver cancer and kills 700,000 people around the world every year. We chose to pursue this action purely and solely because people with hepatitis C deserve access to these treatments. As a patient organisation, how could we not have fought for the rights of people with hepatitis C?
We would also like to make clear that, contrary to how the case was portrayed in the report, our legal action was based on seeking access to a number of new hepatitis C drugs, not just the drug manufactured by Gilead Sciences.
To reiterate, we are not influenced by the pharmaceutical industry nor are we influenced by any other external organisations. We are influenced wholly by the people that we represent and who we speak for, and this will always remain the case.