Department of Health Risk-sharing Scheme: six years on and some
Tracy Nicholson, MS Trust
Dr Mike Boggild, Walton Centre, Liverpool
Open Door - February 2009 page 2
It's now some 13 years since the first disease modifying therapy (DMT) was launched in the UK. With the passage of time there's a tendency to forget the struggle that it was to get these drugs routinely prescribed within the NHS. What really opened the door was the review published by the National Institute for Health and Clinical Excellence (NICE) in early 2002. Although NICE concluded that the four drugs (Avonex, Betaferon, Copaxone and Rebif) did not appear to be a cost-effective use of NHS resources, they acknowledged their apparent clinical benefits. NICE recommended that the Department of Health, National Assembly for Wales and the drug manufacturers consider how the drugs could be made available in a cost-effective way. The result was the Risk-sharing Scheme (RSS).
The Scheme allows people across the whole of the UK, who meet the 2001 Association of British Neurologists criteria for treatment, to be prescribed the drugs and includes a long-term monitoring study. The study aim is to evaluate the costeffectiveness of the drugs over ten years and answer questions about these therapies which NICE had identified in its appraisal.
Between 2002 and 2005 over 5000 people consented to be followed up, the largest such study of MS therapies being undertaken anywhere in the world. This was over 80% of people prescribed the drugs in that period and therefore truly representative of their routine use in clinical practice.
Although recruitment to the monitoring study closed in April 2005, the four drugs remain available on the NHS via 70 prescribing centres, as is Tysabri, subject of positive NICE guidance in 2007. The Scheme has also been the catalyst for unprecedented growth in MS services, with the number of MS nurses increasing from around 80 to over 200. This has benefits for all people with MS, irrespective of whether or not they are on drug therapy.
The people recruited to the monitoring study continue to be followed up. The anonymously collected data will improve understanding not only of the long-term impact of the drugs but also of a range of other questions about MS. This data is also accessible to other researchers hoping to understand more about the disease course of MS and how people respond to individual therapies.
Some of you reading this article will be part of the monitoring study and the researchers would like to express their thanks for your contribution to this influential project. Over the course of such a long-term study your situation may change, however it is important to remember that whether you remain on drug treatment or not, the information that you contribute is valuable. The more people the study loses the more difficult it will be to interpret the results.
If you have problems getting to appointments, let your neurologist or MS nurse know as they may be able to make alternative arrangements. If you are planning to move to a different area, again let your MS nurse know as they will be able to advise you of your nearest specialist centre and arrange for transfer of your care.
Since 2002, more than 10,000 people across the UK have gained access to treatment for their MS. The interest and support of those people who have been involved in the Scheme has paved the way for developments in MS services that will benefit people with MS in the future and help to better understand and treat this unpredictable condition.
- If you are unsure where your nearest centre is:
- Visit the MS Trust's map of MS specialist services
- Contact the MS Trust Information Team
- Contact the MS Society on 0808 800 8000
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Open Door articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.