Pubdate: Wed, 08 Oct 2014
Source: Guardian, The (UK)
Copyright: 2014 Guardian News and Media Limited
Contact:  http://www.guardian.co.uk/guardian/
Details: http://www.mapinc.org/media/175
Author: Sarah Boseley, Health editor
Page: 12

CANNABIS DRUG FOR MS 'TOO COSTLY' FOR ENGLAND BUT NOT WALES

A drug derived from cannabis, which many with multiple sclerosis say 
helps ease their symptoms, has been ruled too expensive to be used by 
the NHS in England even though it is approved for Wales.

In new guidelines for the diagnosis and treatment of people with the 
disabling disease, the National Institute for Health and Care 
Excellence (Nice) says the price set by the manufacturer of Sativex 
(nabiximols) is too high for the benefit it gives patients. But the 
decision opens up the sort of "postcode lottery" that Nice was set up 
to end, with MS patients in Wales able to use the drug on the NHS 
while those in England either have to buy it themselves or go 
without. Some will use the illegal drug instead.

A second drug, Fampyra (fampridine), designed to improve people's 
ability to walk, has been rejected by both England and Wales. Neither 
drug is routinely available in Scotland.

"The substantial cost of Sativex and fampridine compared to the 
modest benefit does not justify their use; there are better ways to 
improve care for people with MS," said Dr Paul Cooper, a consultant 
neurologist who chaired the guideline development group.

In a Guardian podcast, he suggested Wales had been "a little naive" 
in their assessment of Sativex: "They have taken information from the 
drug company at face value without seeing the original data and 
they've used dosages and potential benefits that we would not agree with."

But the MS Society's chief executive, Michelle Mitchell, said the 
rejection of the two drugs by Nice was disappointing. "Surely we 
should be striving for the most innovative treatment and care to be 
made available to people with MS, not limiting options even further," she said.

The charity published a survey of nearly 4,000 people with MS that 
found 82% of those taking Sativex considered it essential or a high 
priority. The main reasons people gave for not taking Sativex were 
that it was not available where they lived  prior to Nice's 
decisions, the NHS makes local decisions about funding the drug  or 
that they would have to pay privately.

"I experience very painful spasms around my ribs, the MS hug, and 
tightness in my arms and legs. I've been told that Sativex could give 
me some relief but it seems so out of reach," said Shona Garrett, 38, 
from Lowestoft, who was diagnosed two years ago and is on a waiting 
list for the drug in her area.

She and her husband had discussed paying for the drug privately, but 
they had been told it would cost UKP500 a month, which is more than 
they can afford.

About 100,000 people in the UK have MS. It tends to hit younger 
people and can lead to serious long-term disability.

The guideline says people with suspected disease should be referred 
promptly to a consultant neurologist for diagnosis, have a single 
expert to speak to about their care, and be encouraged and helped to exercise.
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MAP posted-by: Jay Bergstrom