A drug derived from cannabis, which many people 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. “I also experience nerve pain like constant pins and needles in my feet, and I’ve heard Sativex could help with this too. No one has offered me any other options.”
She and her husband had discussed paying for the drug privately, but they had been told it would cost £500 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. Among other recommendations are that they should have a single expert to speak to about their care, concerns and treatment options so they are not shuttled about between different doctors and nurses. They should also be encouraged and helped to exercise.
The MS Trust said although it welcomed its publication, “regrettably, we believe that the guideline falls short. Though it contains a number of welcome recommendations, it also contains some significant gaps and omissions. Overall we believe it demonstrates a lack of ambition to provide what people with MS need, that is, a genuinely comprehensive description of best practice in MS care.”
Source: The Guardian © 2014 Guardian News and Media Limited (08/10/14)
A multiple sclerosis patient has complained of a "postcode lottery" in the funding of a drug to help with his symptoms.
Sativex is not considered cost-effective and is not routinely funded by health bodies in England.
Philip Grace, 58, from Great Tey in Essex, has been paying privately to get the drug, which cannot be prescribed by his GP.
He was told it might be funded on the NHS if he lived elsewhere.
"My doctor used the term 'postcode lottery' to describe my situation. I know other people in Essex who take it under NHS prescription," he said.
Diagnosed with MS 13 years ago, Mr Grace said the condition has had a huge impact on his movement.
He said: "Before I started taking Sativex, walking felt like trying to walk through water. It was like my body was fighting itself.
"I would also have really bad spasms during the night, which would mean I couldn't sleep. Nowadays, I still don't have much control over my legs, but my strength is coming back.
Sativex helps with muscle spasms and is used by patients when other treatments are ineffective. It was the first cannabis-based medicine to be licensed in the UK.
In August, the NHS in Wales announced it would fund the medicine, following an appraisal by the All Wales Medicines Strategy Group.
But in draft guidance published by Nice (National Institute for Health and Care Excellence), the drug was not considered to "represent cost-effectiveness".
The Mid Essex Clinical Commissioning Group, which funds health services in Mr Grace's area, said it did not routinely fund Sativex, but patients could be referred for "exceptional funding" by their GPs.
Mr Grace said his referral was made in July, but he is yet to receive a reply.
Source: BBC News © British Broadcasting Corporation 2014 (09/09/14)