Regulator defends hepatitis charity criticised on BBC show

The Charity Commission says the Hepatitis C Trust has done nothing wrong in accepting grant funding from a US company that makes a treatment it campaigned for

Charity Commission
Charity Commission

The Charity Commission has defended a health charity that attempted to force the NHS to buy more of a treatment for hepatitis C, having accepted funding from the US company that makes it.

BBC 2’s Victoria Derbyshire show this morning said that the Hepatitis C Trust had taken almost £200,000 of grant funding from Gilead Sciences since 2014.

But the charity denied there was a link between its campaign and the funding it received from the company, and said it had always acted in the interests of patients.

The trust’s latest accounts say it has received £197,825 in restricted and unrestricted grant funding since 2014 from the drug company, which manufactures Sovaldi, a new treatment for hepatitis C.

For the year ending 31 March 2016, when Gilead gave the charity £107,825, the trust had overall grant income of £676,400 and a total income of £946,130.

Last year the trust attempted to bring a judicial review of an NHS decision to cap the number of people who could receive a range of new treatments for hepatitis C, including Sovaldi, at 10,000 a year, because of cost concerns.

The trust argued that the treatments should be more widely available, but the application for a judicial review was unsuccessful.

The Charity Commission said today it had already spoken to the charity after concerns were raised in October 2016.

"The commission was satisfied that the charity’s trustees had demonstrated independent decision-making and has no current regulatory concerns regarding this matter," a commission spokesman said.

A spokesman for the charity said that any inference its campaign for increased access to treatments was the result of funding was "utterly false".

He said: "Like many other small and under-resourced charities in the UK, and in the absence of statutory funding, we accept funding from a variety of sources, including the pharmaceutical industry. This is something that we have never sought to conceal and is clearly stated in our publicly available accounts. This funding helps us to carry out our work of supporting and representing the 215,000 people in the UK living with hepatitis C, but it in no way influences our work."

He said the trust was "not influenced by the pharmaceutical industry nor are we influenced by any other external organisations".

He said it was a patient-run organisation that was "influenced wholly by the people that we represent and who we speak for, and this will always remain the case".

The spokesman said the charity’s actions around the judicial review were beyond reproach, and it resented any implication otherwise.

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