Protests at watchdog's rejection of MS drug

Sufferers of multiple sclerosis reacted angrily after a government advisory body ruled yesterday that NHS patients should not be given access to beta interferon, a drug that helps to treat the symptoms of the wasting disease.

MPs and drug companies accused the National Institute for Clinical Excellence (Nice) of failing to look at the full costs of multiple sclerosis after it decided not to uphold appeals for the drug to be given free to thousands of patients.

Although beta interferon is relatively expensive, costing between £7,000 and £10,000 per patient per year, it is publicly funded elsewhere in Europe.

The Government tried to soften the blow by disclosing that it was in talks with drug companies on finding a less costly way of making it available to patients. "After a period of time, an assessment would be made of whether the drug was working," the Department of Health said. "If it was, payments would continue. If not, payments to manufacturers would be reduced on a sliding scale."

Nice, the independent body set up to appraise whether to release a drug through the NHS, has spent two and a half years considering whether to make beta interferon available. About 2,000 MS patients in Britain are taking the drug, but experts believe some 10,000 could benefit.

Paul Burstow, the vice-chairman of the all-party parliamentary group on MS, said: "Nice has failed to look at the full costs of MS to the individual, their family and the wider community. Long-term care for MS sufferers costs more than the drug."

Patients' groups said the decision was "deeply flawed", and that allowing the NHS to use beta interferon would save money in the long run by stopping patients relapsing.

The MS Society criticised Nice's way of measuring cost effectiveness and said there was an urgent need for it to review its methods. Ken Walker, acting chief executive of the society, said: "It is now two and a half tortuous years since the Nice appraisal began. Throughout that time, we have expressed serious concerns about the way in which it has been conducted."

Yesterday Nice issued a statement that its appeal panel had decided that "on the balance of clinical and cost effectiveness", neither beta interferon nor another MS drug, glatiramer acetate, was recommended for NHS treatment in England and Wales.

The advisory body, which includes doctors and academics, added that patients now taking the drugs should be allowed to continue therapy.

Drugs companies said it was wrong to deny patients on the NHS treatment that is publicly funded in every other European country. Dr Martin Toal, medical director of Biogen, which manufactures beta interferon, said: "Since August 1999, when the Nice process started, most NHS patients with MS have been deprived of access to proven and effective treatments for their disease. Many of these MS patients will now have progressed in their disease past the point where beta interferon can help them."

Last night, the Association of the British Pharmaceutical Industry (ABPI) called on the Health Secretary to use his powers to reject Nice's recommendation. Its director general, Dr Trevor Jones, said: "These medicines have already proved to the Government that they work, and to deprive patients of their clinical benefit is an affront to people with MS."

"They are being used to help many patients with MS in Europe and the US. It is a dreadful admission that, here in the UK, we are effectively saying to patients that we don't care about their quality of life."

Michelle Rudd, an MS sufferer from Stourport in Worcestershire, said: "I am terribly disappointed ... I wake up every day wondering which parts of my body are going to be working and live in fear of my next relapse.

"This week, I was measured for my first wheelchair. Beta interferon slows down relapses and I'm sure I wouldn't be in a wheelchair if I could start taking it."

The MS Society said there was an urgent need for change "before treatments for other lifelong conditions fall foul of Nice's deeply flawed measures of cost-effectiveness". The society has set up a special information line for inquiries on 020 8438 0862. It is open between 9am and 5pm, Monday to Friday.