By Laura Donnelly, Health Editor 7:00AM BST 09 Jun 2014
Tens of thousands of Multiple Sclerosis sufferers could be denied drugs which can stop sufferers “screaming out” in pain, under new NHS recommendations, experts have warned.
Neurologists said the decision by the National Institute of Health and Care Excellence (Nice) to reject two cannabis-based drugs for symptoms of MS could leave thousands of patients suffering “horrendous” pain and immobility.
New draft guidelines on the diagnosis and care of people with MS have rejected two drugs which have been licensed in recent years to help sufferers experiencing spasticity and mobility problems.
In a letter to The Telegraph, the head of the MS Society and seven leading neurologists and pain management experts attacked the decision, criticising the rationing body for making decisions “behind closed doors” without involving those affected.
Experts accused Nice of rejecting the drugs Fampyra and Sativex, without taking proper account of the “life-changing” difference the drugs could make to up to 40,000 MS sufferers who are likely to develop mobility problems or painful spasms.
In the letter, they write: “NICE is proposing to block access to two potentially life changing MS treatments which are licensed and proven to be effective at helping people walk more easily and control painful muscle spasms.
“If this guideline remains unchanged, people will be forced to pay privately, or face the agonising daily frustration of living with painful and debilitating symptoms, knowing there are drugs that may help them, but that they can’t get access to.”
Nice said the drugs were not cost effective, but neurologists questioned their methodology and said officials had vastly over-estimated the doses needed for effective management of symptoms.
Trials have found the drug Fampyra (fampridine) can assist MS sufferers with mobility, while the treatment Sativex (nabiximols) can treat painful muscle spasms.
Both drugs have been licensed for use in the UK since the last guidance was drawn up by Nice on care of MS sufferers, more than a decade ago.
Currently, just one in 50 patients is funded the drugs via the NHS, neurologists said.
Around 100,000 people in the UK suffer from MS, and around 85 per cent will develop mobility problems, while more than one quarter will develop severe spasms.
Neurologists said between one third and half of such cases could benefit from each of the drugs.
They said the cannabis-derived drugs cost between £200 and £350 a month on private prescription.
Michelle Mitchell, chief executive of the MS Society, said the Nice recommendations would come as a “crushing disappointment” for those with few other treatment options.
She said: “We understand that NICE has to make difficult decisions which balance cost to the NHS with the efficacy of a given treatment. But we don’t understand why NICE deliberately excluded organisations that represent people with MS from a process which resulted in a proposal that two relatively affordable drugs with proven efficacy should be not be used in the NHS.”
She said the recommendation meant the few who currently received the drugs could lose access, while many more patients who had lived in hope of a positive decision were likely to become “extremely despondent”.
Dr Willy Notcutt, Consultant in Pain Management at James Paget University Hospital, Norfolk, said the drugs were the only option for some patients suffering “horrendous symptoms”.
He said: “Many people, including doctors, don’t really understand how unpleasant symptoms such as spasms are – for example someone screaming in pain whenever someone tries to wash them”.
He said: “For many of them these treatments are invaluable and make life worth living again.”
The consultant said that he was fearful that the ruling would “push patients towards criminality” and seeking out cannabis to relieve their symptoms.
Professor Mark Baker, director of the centre for clinical practice at Nice, said the consultation gives organisations the chance to comment, and that the guidelines could be revised if further evidence came to light.
He said: “Both fampridine and sativex were considered in the development of the draft guideline. A detailed analysis of the evidence of costs and benefits of these drugs led us to conclude that neither should be recommended by NICE
