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Dismay over rejection of MS pill trialled in Norwich

PUBLISHED: 06:30 05 August 2011

Amanda Cook, who says taking fingolimod for her MS, has completely changed her life.

Amanda Cook, who says taking fingolimod for her MS, has completely changed her life.

© ARCHANT NORFOLK 2011

A mother-of-two who has been taking the first pill to treat multiple sclerosis has told of her "dread" of being without the drug, after it was initially rejected by the medicines watchdog.

"I dread the thought of it not being available to me and this decision makes me sad and cross that it won’t be generally available to anyone else."

MS patient Amanda Cook

In draft guidance, the National Institute for Health and Clinical Excellence (Nice) has rejected the drug fingolimod, which has been trialled in Norwich, recommending it is not made freely available to NHS patients in England.

Nice rejected the drug due to “uncertainties” over its effectiveness, a lack of appropriate data and concerns over cost-effectiveness.

But the decision has disappointed health campaigners, who say it will leave some MS patients with no effective treatment choice.

Amanda Cook has been taking fingolimod since 2008 as part of a trial at the Norfolk and Norwich University Hospital, which treats 1,800 patients with MS.

Fingolimod

Fingolimod, also called Gilenya, is the first oral treatment for MS.

It is licensed as a “second line” treatment for patients who have failed on other medication and for patients whose condition is not being controlled by injections of beta interferon or glatiramer acetate.

It fills a gap between initial treatment and monthly infusions of natalisumab.

The 45-year-old, who lives off Dodds Road, Attleborough, and works as a deputy sister at the hospital, has not had a relapse since she started taking the drug.

She said: “I’m hugely disappointed. It has worked so well for me and in the three years I have been taking it I think I have only had three or four days off from work.

“Before that I must have had about a year off sick in just four years.”

She experienced bad side effects from the standard injectable treatment, which left her feeling like she had flu.

Ms Cook is still getting the drug for free, because she took part in the trial, but this is due to come to an end in December 2012.

If it has not been approved by Nice by then, her consultant will have to make an individual funding request to NHS Norfolk.

Treating one patient with fingolimod for a year is estimated to cost £19,665.

She said: “I dread the thought of it not being available to me and this decision makes me sad and cross that it won’t be generally available to anyone else.

“I just feel it would probably pay for itself because it would help people avoid taking time off sick or having to claim off the state as they are unable to work.”

Nice said it was unclear how much the drug would help the specific group of people for whom it was licensed - adults with relapsing-remitting multiple sclerosis (RRMS) who experienced at least one relapse a year despite being treated with beta interferon drugs.

Another group of patients suitable for the drug were those with rapidly evolving severe RRMS, who experience two or more disabling relapses regardless of their treatment.

Professor Carole Longson, director of the health technology evaluation centre at Nice, said: “Unfortunately our independent committee wasn’t given sufficient evidence to show that fingolimod could reduce relapses considerably better than the other treatments currently being used.

“Based on the available clinical evidence and economic analysis, our independent committee concluded that fingolimod would not be effective good use of NHS resources.”

Dr Martin Lee, consultant neurologist at the N&N, said: “Just as a very significant advance in MS care was to become available the rug has been pulled away. All the results show the treatment works well and is very well tolerated. Unfortunately, it appears that cost, as usual, is the big issue. We can only hope that this situation changes upon review before a final decision is made later in the year.”

Simon Gillespie, chief executive of the MS Society, said: “This is disappointing news for people with MS and it will leave some people with no effective treatment option.

“Access to MS treatments in the UK is very poor - in fact people with MS would be better off living almost anywhere else in Europe, and this decision will only deepen that inequality.

“We’re concerned at how this decision has been reached and now strongly encourage Nice and Novartis to work together to look at how the treatment can be better re-considered and evaluated.”

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