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Norfolk contaminated blood victim calls for fairer drug pricing

PUBLISHED: 16:17 27 July 2018 | UPDATED: 16:17 27 July 2018

Michelle Tolley was a victim in the contaminated blood scandal. 
PHOTO BY SIMON FINLAY

Michelle Tolley was a victim in the contaminated blood scandal. PHOTO BY SIMON FINLAY

A victim of the contaminated blood scandal, who was forced to wait to receive the highly-priced hepatitis C treatment she needed has joined a campaign to lower medicine prices.

Michelle Tolley, a former supermarket employee and mother-of-four from Sparham was diagnosed with hepatitis C in November 2015.

The 53-year-old unknowingly contracted it 29 years earlier through unscreened blood transfusions.

But by the point it was diagnosed Mrs Tolley had developed liver cirrhosis and needed treatment.

However, just before the medication was ordered, the funding was withdrawn.

The high price of the drug Mrs Tolley needed meant it had been rationed since it was first made available on the NHS in 2015.

Mrs Tolley said: “I was furious. Having waited 29 years and suffering untold health problems, I was now being told that I couldn’t access treatment and they did now know how long I would have to wait. I was so distraught that I spoke to my local radio station and kicked up a fuss.

“Finally I was offered a cure. But it took almost 10 months to finally receive treatment for hepatitis C. Even though I contracted the virus from a contaminated blood transfusion, I still had to fight for treatment. I think it is disgraceful that pharmaceutical companies are allowed to monopolise the price of drugs so that treatment is rationed and patients have to wait.”

This delayed access to life-saving treatment was repeated across the UK as the NHS rationed medicines in response to the price.

And campaign group Just Treatment is bringing together stories of those who have had to wait or been denied access to hepatitis C drugs - such as Gilead’s sofosbuvir based treatments - as part of a new campaign to demand tougher government action on current and future drug pricing.

Mrs Tolley said: “Although I was grateful to be treated I felt guilty that others in similar situations were being forced to wait. Why are we put in that situation?

“We’re urging anyone who has been in a similar position to come forward and speak to us about their experience so that we can challenge the decisions that were made.”

• To get in touch email organise@justtreatment.org or visit www.surveymonkey.co.uk/r/ZSHXLN6

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