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MS services and the Risk-sharing Scheme

Policy and campaigning

Nicola Russell, Director of Services, MS Trust

Way Ahead 2009;13(4):3

When one looks at MS services today it is hard to imagine that only 12 years ago there were few MS specialist centres, only about 35 MS specialist nurses, virtually no specialist therapists and only one drug licensed for the treatment of MS, which in most parts of the UK the NHS was refusing to fund.

Following campaigning by the MS Trust and other organisations, hard work and a vision by a number of very committed health professionals, the situation is dramatically different today. In addition to the vision within the NHS, the pharmaceutical companies (Biogen Idec, Bayer Schering, Merck Serono and Teva Aventis) and the Department of Health have made a significant financial commitment to the truly innovative Risk-sharing Scheme.

The Risk-sharing Scheme was launched in 2002 and was the first such scheme in the UK. The rules of the scheme are laid down within a Health Service Circular[1] and it is legally binding in all four countries of the United Kingdom. The results of the first analysis have recently been accepted for publication by the British Medical Journal and are expected to feature in the journal in October.

For clarity, the Risk-sharing Scheme entitled everyone who complied with the Association of British Neurologist's prescribing criteria to receive one of the four drugs (Avonex, Betaferon, Copaxone and Rebif) on the NHS. For the products to be available the companies reduced their prices to the NHS, and a cohort of the patients prescribed the products is being monitored for a 10-year period. The decision on which product was prescribed remained with the clinician.

How has the Risk-sharing Scheme influenced MS management in the UK?

  • Approximately 14,000 patients have now received disease modifying treatment in the UK. This is 14% of the MS population - still significantly lower than Europe where 25-30% are treated and America where 50% of the MS population is treated with the disease modifying drug therapies.
  • 5,583 patients were recruited to the research cohort of the Risk-sharing Scheme.
  • 70 centres have patients being monitored within the scheme.
  • There are now approximately 220 specialist nurses in the UK, although a further 80 are still required to ensure sensible manageable caseloads.
  • There are approximately 180 specialist therapists working directly with people with MS.
  • The improved services have had a positive impact on all people with MS not just those eligible for disease modifying therapy.
  • Within the cohort of patients being monitored, a significant percentage improved as assessed by the Expanded Disability Status Scale (EDSS) at year 2.
  • Approximately 5,000 people with MS are still being monitored annually. Each clinical centre has access to their own data, and the overall cohort is likely to prove valuable in further expanding our knowledge of MS.
  • Several compounds are currently at phase III development with a real prospect of new therapies with new methods of delivery on the horizon.

The Risk-sharing Scheme is a ten year study and the published data will highlight some critical issues that are now being addressed by the Scientific Advisory Group. For example, the natural history dataset used in the NICE economic model did not allow people to improve in EDSS terms, and it is now clear that this is wrong. A new comparator dataset is being sought for the four year assessment. In addition, the confirmation rules used have been shown to be flawed and this will also be rectified at the next analysis.

The Risk-sharing Scheme was, as its title suggests, a risk at the outset. Today we can see what it has delivered to MS services, to all people with MS, and for future MS research.

A diagnosis of MS is still not what one would choose but it is a better place to be in 2009 than it was back in the dark ages of 1997. Services are still not good in some parts of the UK but I hope that this article, showing the rapid change that is possible in a comparatively short space of time, will inspire all health professionals to continue to strive to improve the situation for young people being given a diagnosis that will be with them for the rest of their life.

References

  1. Department of Health.
    Cost effective provision of disease modifying therapies for people with multiple sclerosis: Health Service Circular 2002/004.
    London:Department of Health; 2002.

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