The Risk Sharing Scheme - what does it mean for me?

What is the Risk Sharing Scheme?

The Risk Sharing Scheme (RSS) is a patient access scheme for treatments. It was set up in 2002 in response to a National Institute for Health and Care Excellence (NICE) decision that two licensed MS medicines were not cost effective and should not be made available on the NHS.

Following lobbying by the MS community, a compromise was reached: certain disease modifying treatments (DMTs) for MS would be made available on the NHS, if they met criteria set out by the Association of British Neurologists (ABN). 

How does it help people access medicines?

When the RSS started, the Department of Health and pharmaceutical companies agreed to provide funding for the DMTs and the infrastructure needed to administer them. The treatments could then be made available to people with MS who met the ABN criteria.

The cost and benefits of those treatments would then be monitored over a ten year period, and this would inform their price.

The RSS origionally included the four DMTs which had already been licensed in 2002:

Since then two new variations of beta interferons have been made available via the scheme (Plegridy and Extavia), as well as a new dosage of Copaxone.  

The ongoing effectiveness of the treatments have been clinically monitored in a proportion of people on the RSS, which involves over 5,000 people with MS.

Latest results

After the first interim analysis of the scheme in 2009 highlighted issues with the way in which the analysis was conducted resulting in ambiguous results, the year six data was analysed utilising new methodology. Published in 2015 in the Lancet, the results found the treatments on the scheme were cost effective over the long term. With the treatments slowing disease progression be between 24-40% compared to natural course of history.

What are the benefits of the RSS?

The RSS has led to significant investment in MS healthcare, particularly in MS specialist nurses. This was part of the agreement with the Department of Health, to cover potentially significant nursing costs in helping people come to terms with, and administer, regular injections.

The RSS has meant more people have been able to access the DMTs, and more neurologists now specialise in MS. The Department of Health is also legally bound, under the regulations of the RSS, to provide funding for the included DMTs.

The future of the RSS

The final results of the scheme were expected to be published in 2016, but we're still waiting for the data. NICE have also carried out a Multiple Technology Appraisal (MTA) of all the treatments on the Scheme. The MTA examined the clinical and cost effectiveness and will help make a final decision on whether these treatments will continue to be available on the NHS. We've been providing evidence about the importance of these treatments to NICE throughout.

We are currently discussing the future of the RSS with the Department of Health and our position is clear: the RSS has provided significant benefits to people with MS, and those benefits must continue and strengthen.

What do we still need to do?

Even though the RSS is in place and has helped strengthen MS services, it hasn't been able to ensure everyone with MS can access the right treatment at the right time. We know 43% of people with relapsing remitting MS in the UK who could be eligible for DMTs are not taking them. We also know access to DMTs and specialists varies across the UK.

We're working to end the inequalities of MS services – making sure the RSS's benefits extend beyond its lifetime is just one element.

MS nurse posts need to be retained and maintained, new treatments need to be given the go ahead, and people with MS need to be empowered and fully informed about the decisions they make. 

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More people have been able to access the DMTs covered under the RSS, and more neurologists now specialise in MS

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