Multiple sclerosis specialists have urged the UK cost watchdog not to block two “potentially life-changing” drugs that alleviate the symptoms of the disease.

In a letter to the Daily Telegraph, the head of the MS Society, Michelle Mitchell, and seven leading neurologists and pain management experts, have attacked the National Institute of Health and Care Excellence over the stance it is taking on Biogen Idec’s Fampyra, a prolonged-release tablet formulation of fampridine to improve walking in adults and GW Pharmaceuticals’ cannabis-based spasticity treatment Sativex (nabiximols).

In the letter, they claim that 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”. They add that “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”.

Patients not consulted

The MS Society says it is unhappy that the new NICE clinical guideline for MS (the first in 11 years) has been drafted “behind closed doors”. Chief executive Michelle Mitchell told the Telegraph “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”.

In a statement sent to PharmaTimes, Mark Baker, director of the centre for clinical practice at NICE, noted that the agency has opened a consultation on its draft recommendations and “this gives organisations and groups, such as the MS Society, the opportunity to comment on the content and wording of the guideline”.

He added that “a detailed analysis of the evidence of costs and benefits” of Fampyra and Sativex “led us to conclude that neither should be recommended by NICE as they do not currently represent cost effectiveness for the NHS”. NICE estimates that the cost of Sativex is around £50,000 per QALY gained and fampridine is just over £160,000 per QALY gained.

Prof Baker concluded by saying that “should NICE become aware of further evidence to affect this assessment during the consultation period, the draft guideline may be revised”.