Final results from the MS Risk Sharing Scheme (RSS) published

23 September 2018

The MS Trust has praised the pioneering work of the MS Risk Sharing Scheme (RSS) as the final results from the scheme are published in the Journal of Neurology, Neurosurgery and Psychiatry today (September 24).

“The RSS was a truly innovative scheme and continues to deliver real benefits for people with MS,” commented David Martin, Chief Executive of the MS Trust. “Not only has the scheme enabled over 18,000 people with MS to access disease modifying treatments (DMTs), but it has also been the catalyst for the development of MS services, completely transforming the landscape for the 110,000 people living with MS across the UK.

“As administrator of the scheme, we are proud to have contributed to what has been achieved, but we won’t be resting on our laurels. People with MS still face many challenges and we will continue to fight to ensure everyone has access to the best possible treatments and MS services, now and in the future.”

The MS Risk Sharing Scheme was a unique partnership – the first of its kind in the UK – which enabled people with MS to access the original four disease modifying therapies (Avonex, Betaferon, Copaxone and Rebif) on the NHS.

It was established in 2002 following an assessment by the then National Institute for Clinical Excellence (NICE) of the four DMTs. It concluded that, while clinically effective, these drugs were not cost effective and therefore should not be made available on the NHS.  

It has completely transformed the landscape for the 110,000 people living with MS across the UK

The Department of Health, working with the four drug manufacturers and other key bodies from the MS community, including the MS Trust, set up the scheme to ensure the DMTs could be prescribed to people with MS who met the criteria for treatment while the long-term cost efficiency was assessed. Over 5,000 of these people were included in a monitoring study to evaluate the cost effectiveness of the drugs over a 10-year period.

The final results from the scheme, published today, show that the DMTs are cost effective and clinically effective in reducing the progression of the disease in people with relapsing remitting multiple sclerosis. These long-term findings have the potential to genuinely inform and change the way in which MS is treated.

The RSS has also had a huge impact on the growth and development of MS services across the UK. The number of MS nurses has risen from 80 to over 240, there has been a significant increase in the number of physiotherapists, occupational therapists and neurologists specialising in MS, and over 70 specialist MS centres have been set up across the UK. In addition, the RSS has funded education for all MS specialist health professionals.

Dr Martin Duddy, consultant neurologist at the RVI in Newcastle, commented: "People tend to focus on the financial side of the RSS. But the wall of funding that came from the Department of Health and the drug companies provided our entire infrastructure."