The MS Society is campaigning for an end to a scheme that gives multiple sclerosis patients access to drugs that are not recommended by NICE.
The Risk Sharing Scheme, which was to run for ten years, was implemented by the DH in 2002 when NICE decided that certain disease-modifying drugs were not cost-effective. The drugs involved are Biogen Idec’s Avonex, Bayer Schering Pharma’s Betaferon, Teva/sanofi-aventis’ Copaxone and Merck Serono’s Rebif.
However, the MS Society argues that the scheme has been poorly managed and is even affecting patient access to the NICE-approved drug Tysabri.
A review of the scheme was published in the British Medical Journal in December 2009, which highlighted various methodological difficulties.
The MS Society also points out that the scheme is causing confusion over entitlement to Tysabri, that access to the drugs is governed by a post-code lottery and that NICE’s MS guidance is out of date due to awaiting the outcome of the programme.
Simon Gillespie, Chief Executive of the MS Society, said: “This is a deeply frustrating situation. The four drugs involved are not the issue and many have benefitted from taking them. It is the way the scheme has been run that is the problem.
“People with MS and taxpayers deserve much better. Government’s approach towards the treatment of 100,000 people with MS across the UK doesn’t give them, or their families, confidence for the future. We already have evidence that the ineffective operation of the scheme has exacerbated the post code lottery in treatments, for example in prescribing the newer drug Tysabri for people with severe MS.”
James Gray MP, Chair of the All Party Parliamentary Group on MS, represented these feelings in a debate with Health Minister Mike O’Brien MP, concluding: “the scheme is knackered, it cannot be mended and anyone with half a brain would call for its abolition!”
Mike O’Brien responded that it was too early to reach firm conclusions about the cost-effectiveness of the drugs. He added that he would “investigate any concerns that primary care trusts are refusing to fund the use of Tysabri as recommended by NICE” and that “if there is any evidence of postcode prescribing, we will be anxious to see it.”
Simon Gillespie concluded: “Unless the shortcomings of the scheme are addressed rapidly, the introduction of other new therapies for MS is also likely to be delayed. Most people live with their MS for many decades, and it is imperative that people with MS receive the correct treatment at the right time.
“Anything short of this would be a grave injustice to all those with MS, as well as ultimately costing society more for hospital stays and care that could be avoided.”