More MS news articles for Aug 2001

Medicines body ‘failing patients’

http://www.scotlandonsunday.com/politics.cfm?id=SS01029877&feed=N

12th August, 2001
By Camillo Fracassini Health Correspondent

A quango set up to evaluate medicines for use in Scotland has spent £2m in its first year "rubber stamping" two existing reports from England.

As a result of lack of progress by the Health Technology Board for Scotland (HTBS), patients - including those suffering from multiple sclerosis - are having to wait months for decisions on new treatments.

Patients’ charities, politicians and health experts last night launched a scathing attack on HTBS, calling for it to be scrapped or radically overhauled.

The quango was set up over a year ago to tackle the problem of ‘postcode prescribing’, where different health boards arrive at their own decisions - frequently based on cost - on whether to prescribe new medicines. But since then it has only produced two "comments" on guidance produced by its English counterpart, the National Institute for Clinical Excellence (NICE).

Last night, Shona Robison, the deputy shadow health minister, said she was alarmed by the quango’s lack of progress.

"Questions have to be asked about what the technology board has been doing for the last year," she said.

"It was supposed to do four assessments a year and it now appears that it has not made an independent ruling on anything. It is time for it to step up a gear and deliver something for the money that has been invested in it.

"The Scottish public should be given value for money by a body which carries out its own research rather than just rubber stamping English assessments."

A senior medical source, who asked not to be identified, said the HTBS’s time was running out. "The talk is that the health technology board will have a very short life span and there are already plans afoot to replace it with something else," the source said.

"What has it done so far? Absolutely nothing. If it is just going to hold a mirror up to NICE’s decisions it is a very expensive exercise indeed for Scottish taxpayers. We need an autonomous body, not one that is just someone else’s puppet."

Most controversially, HTBS has refused to make a ruling on the drug beta interferon, deciding to wait for NICE to reach a decision.

Beta interferon is one of the only drugs shown to treat the symptoms of MS, but is expensive, costing up to £10,000 for each patient a year.

Mark Hazelwood, director of the MS Society Scotland, said: "The delay in making a decision on beta interferon is not acceptable for up to 2,000 people with MS in Scotland who know there is a drug out there that might help them but to which they are being denied access."

One of those waiting for a decision on the drug is Marlene Ferenth, a MS patient who has been told by doctors that beta interferon could help slow the progress of the disease.

But because the 47-year-old lives in Edinburgh her health board will not authorise its use.

By the time the HTBS finally makes a decision on the cost-effectiveness of the drug, her illness may be too advanced for the medicine to make any difference.

"I know it’s not a magic cure for MS but I may never even get access to a medicine that might help me," explains Ferenth, who already has trouble with mobility.

"Now I’m faced with the daunting prospect of bring up my 10-year-old daughter on my own with MS. I would like to be able to hold down a full-time job but I’m now having to look at the possibility of taking early retirement because I’m really struggling.

"You don’t know how fast this illness progresses. Another year and I may not qualify for beta interferon anymore."

Last night, HTBS denied it had been dragging its heels and said it was working on three independent assessments on diabetes, cancer screening and alcohol dependence.

A spokeswoman said: "We do understand people’s frustration but, particularly in the case of beta interferon, to have uncoupled from NICE would have meant a further delay.

"We are working hard on independent health technology assessments for Scotland and commenting on NICE’s work is an additional role we’ve taken on, not part of our original remit."