18 Nov 2014

NHS asks Nice to delay ground-breaking hepatitis C drug

It is a drug that cures hepatitis C in 90 per cent of cases and was considered ground-breaking when it came on to the market.

Manufactured by Gilead, Sofosbuvir was licenced for use late last year. And in April this year, NHS England took the unusual step of setting up a special access scheme so patients with less than a year to live were able to be treated without waiting for the National Insitute for Health and Care Excellence (Nice) to evaluate whether it should become routinely available on the NHS.

But it is expensive – £35,000 for a 12 week course. So now NHS England is balking at the potential cost. In fact so much so, this programme has learned that they have asked Nice to delay implementation.

This, liver specialists say, will put patients’ lives at risk. Estimates are that every month’s delay could lead to 40 people with hepatitis C developing preventable cancer, and 30 patients progressing to a severe form of cirrhosis.

Nice is due to finish its final assessment in January. It is usual for them to give the NHS three months to find the money or put staff – if needed – in place. NHS England is thought to have asked them to delay this by six months.

It is already in the public domain that NHS England fears that it could end up cost £1bn if it was provided to 20,000 patients. A leaked letter to the Health Service Journal described this as prohibitive.

Professor  William Rosenberg, a consultant hepatologist at the Royal Free Hospital in London, said this was wrong on two counts.

“Not everybody is going to come forward. In the UK we have only detected half of the cases of hepatitis C in the country and we have treated way less than half of those. So we are not going to get a deluge of patients coming forward.

“Secondly, under the early access scheme, NHS England has worked very effectively with the 15 centres delivering this care to, in effect, ration therapy to the patients with the greatest need. We could continue to do that.

“I feel absolutely distraught for the patients who can see that these treatments are available throughout the world and are provided on the continent. You just go across the Channel, ​patients could get access to these treatments. They’re life-saving, and yet they cannot get them in this country,” he said.

The argument regularly put forward by doctors is that while it may have a hefty price tag, it is a drug that cures. That means no treatment for liver cancer, or liver transplants which can cost £100,000 alone.

And as the Hepatitis C Trust says, that also mean lives not lost and people who can go back to work and pay taxes.

“What this does is prevent the need for a huge amount of expense later on by treating and curing now,” Charles Gore, the trust’s chief executive, said.

Tonight NHS England said it would now continue to make the drug available for patients with liver failure until the Nice assessment. But it would not comment on what happens beyond that.

Follow @vsmacdonald on Twitter

Tweets by @vsmacdonald