Published on 16 Apr 2014

Drug boost for severe hepatitis C sufferers

Channel 4 News has learned that the NHS has agreed to the fast track funding of a new drug for 500 patients with such severe hepatitis C that they are likely to die or need a liver transplant within the year.

The drug called Sofosbuvir is one of a group of new treatments for hepatitis C which have been hailed as “game changers”  because they have a 90 to 95 per cent cure rate, can prevent the need for transplant and have almost no side effects.

Until now, there have been few options for people with the advanced effects of hepatitis C except liver transplant.  The current drug regime, using interferon, with other drugs such as ribavirin, cannot always be tolerated by those with the more serious form of the disease.  Even for those who can take it,  the regime has serious side-effects and is not, more crucially, a cure.

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Hepatitis C primarily affects the liver and is spread through blood.  An estimated 216,000 people in the UK have been confirmed as infected but it is also thought that more than half the total number of cases have not been diagnosed.

Sofosbuvir was awarded a European licence at the end of last year and is now available under certain conditions in France and Germany.

Channel 4 News has learned that in January, the Hepatitis C Trust applied to NHS England, as the funding body, to pay for the drug as a matter of urgency for the most desperately patients as quickly as possible.

Without this agreement, the patients would have had to wait for the National Institute for Health And Care Excellence (Nice) to assess it and that is not likely to be completed until October.

On 11 March, the Clinical Priorities Advisory Group, which advises NHS England on specialist or rare conditions, said that the drug should be funded for the 500 patients. But it was not until today that NHS England agreed that this would happen.

A spokesman for NHS England said that there had been no unnecessary delays and that they had always said the assessment would not be completed until May.

But the Hepatitis C Trust and some clinicians we have spoken to are concerned that it has taken from January until now for the process to be completed.

Charles Gore, the trust’s chief executive, said it has been frustrating knowing that there is a drug that can not only treat but cure the condition and yet was not being made available.

While  Mark Thursz, professor of hepatology at Imperial College and chair of the Hepatitis C Coalition,  said that for many of these patients delays of days or weeks could make a serious difference to these chronically ill patient.

He welcomed today’s decision and said that he hoped they would be able to begin the first treatments within a week.

The drug is expensive – £35,000 for a 12 week course.  But when compared with the need for a liver transplant, followed by a  lifetime of drugs, it becomes highly cost-effective.

NHS England has approved £18.7m for the treatments and although it is intitally for the 500 most ill patients, this can be extended as more patients come forward.

Nils Nordal, a Middle Eastern historian (pictured above), spoke to us before we learned that the funding had been agreed.

Mr Nordal, who lives with his wife and three children in Oxford, was diagnosed with hepatitis C in August last year.  It is thought he contracted the disease while studying Arabic in Egypt 20years ago.

He said he’d had dental treatment which was “bloody”.  Mr Nordal’s condition is deteriorating rapidly. Every week he has to have seven or eight litres of fluid drained from his stomach, he is desperately fatigued and in pain.

Later this month he is due to be assessed for a liver transplant.  Yet his consultants have said that they believe Sofosbuvir could not only save his life, it could perhaps reverse some of the liver damage and even, with luck, prevent the need for the transplant.

Mr Nordal is now waiting to hear if he is one of the 500 who will receive the drug.

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3 reader comments

  1. David Stevenson says:

    David s I’m from scotland I have same problem and I’m age at only 42yrs old. I been on ribavarin and the other drug “but” with it coming back after76 wks a ok then 77wks it was back again as Wich I was down and feeling very badly I’m not at the point of needing a transplant but now hearing of this new drug sofosbuvir and I’m really hoping that I can get the chance too get on this 12 week coarse and getting back my life and hopefully a love life too Wich I’ve not had since13 yrs ago.so this sounds a gret drug and hope it can be given too people looking to better there life’s . As I’m now as good as a hermit don’t go no were and most of its down to this badly disease of hep c so hope governments in England ,scotland and any other places in Great Britain don’t play with life’s as this is the most and best news yet even at that price . The drug companies sell them cheaper to gov by the more they buy the more the price comes down . I can only hope there is some decent MP s who don’t try hold back because of how much the cost could be so I hope everyone that need this treatment get it without eny fuss in the near future d.s

  2. Mary Brown says:

    As mother-in-law of Nils Nordal, I wish to express my thanks for the compassionate and informative report presented by Channel 4.

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