Select Committee on Health Appendices to the Minutes of Evidence


Supplementary memorandum by the Multiple Sclerosis Society (NC 56A)

The latest position

  NICE announced on Friday 25 January that appeals against its negative decision on use of disease-modifying MS drugs were not upheld. The NICE appeals mechanism is now exhausted and the only further recourse for appellants is the High Court.

  NICE's guidance to the NHS—that the drugs should only be prescribed on the NHS to those currently receiving them—will be issued on Monday 4 February. At or around that time the Department of Health is expected to announce a scheme which will combine prescription of the drugs with monitoring of their long-term cost effectiveness.

  The scheme builds on a proposal the Society put to Alan Milburn in the summer, after it became clear NICE was likely to recommend people should be denied access to these drugs. All those meeting the clinical criteria for use of the drugs would be included in the scheme. While on the drugs their progress would be monitored and the long term-cost effectiveness of the drugs assessed. If the products did not live up to manufacturers long-term expectations, their price would be reduced according to a pre-agreed formula.

What the MS Society thinks

  The proposed scheme is a positive development, welcome after years of post-code prescribing. We hope that a strong push from Ministers will ensure full implementation locally.

  While we welcome the Department's proposal, we regret that NICE itself has not been able to show the imagination necessary to resolve this issue. NICE has effectively said that because it cannot be sure about the long-term cost-effectiveness of the drugs people with MS should not receive them. The Department, by contrast, has said that the drugs should be prescribed in a manner which will allow this long-term cost-effectiveness to be properly assessed. The Department's approach turns on its head NICE's presumption of guilt until innocence is proven.

  We have been concerned for some time that NICE has used measures of cost-effectiveness which are inappropriate for a fluctuating life-long condition like MS and believe the Institute's final decision to be flawed. We also believe that NICE's appeal mechanism is unlawful as its Appeal Panel has neither the qualities of independence or impartiality that are required of a public body exercising an appeals function.

28 January 2001

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