Tuesday, December 16, 2008

British government admits only one in 10 people with MS receiving new drug treatment

From The Guardian in the UK:

Only around one in 10 of those who are eligible for a new drug to treat multiple sclerosis are getting it, even though it was approved a year ago for use in the NHS, the Guardian has been told.

Natalizumab, which goes by the brand name Tysabri, is the first drug that the National Institute for Clinical Excellence has approved for multiple sclerosis.

MS is a disease of the central nervous system which can progress from tingling and numbness of the limbs to blindness and paralysis. There is no cure, but the drug slows the progression of the disease in some of the most severe cases.

But in an answer to a parliamentary question put by the Liberal Democrat MP Paul Burstow, the government said between 100 and 300 people were getting the drug as of March this year, out of a possible 2,000 who could benefit from it.

"It is incredibly difficult to understand how, more than a year on from the Nice positive decision, treatment can still be withheld from eligible patients," said Dr Jayne Spink, director of policy and research at the MS Society.

Some delays may be due to the need to give the drug as an hour-long intravenous infusion, which means there must be a suitable place available.

Two women in West Yorkshire are still waiting to get Tysabri. Penny Copley, 42, was offered it by her consultant in July last year, but has not begun treatment. "It has been tested and proven and put on the register by Nice. What's the point of Nice doing that if the hospitals are not on board?" she said. Having multiple sclerosis "is not like the common cold", she said. "It's something I have got for life and I'm trying to better my life."

She and Ruth Penrose, 43, are members of an MS support group called Pins and Needles and are aware that some hospitals are offering Tysabri while their own, Pinderfields General hospital in Wakefield, has so far failed to treat them.

Primary care trusts have three months to implement Nice guidance, which would have run out in November last year, said Ms Penrose. "Nothing was done about it until Penny and I decided to write a letter to the PCT," she said. "Then they said they would implement Tysabri as soon as they had found a safe and sustainable environment."

The Department of Health said the choice of treatment was up to the clinician and patient. "The government has made it clear that the local NHS is required to provide funding for treatments and drugs recommended by Nice within three months of the Nice technology appraisal guidance being published," a spokesman said.