APPENDIX 11
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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