Rehabilitation services remain important in multiple sclerosisBMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7343.977 (Published 20 April 2002) Cite this as: BMJ 2002;324:977
- Richard Richards (), consultant public health physician
EDITOR—Taylor's enthusiasm for the proposed “sale or return” arrangement for interferon beta seems ill informed.1 Given the variability of multiple sclerosis over time in individual patients, how is the success of treatment to be judged? Using historical controls, such as the Canadian cohort, requires the availability of detailed data to match controls to the current treatment criteria.2
In making these choices, quality adjusted life years and similar utility measures are all we have, flawed as they are. A better debate is over the cut-off level. According to the National Institute for Clinical Excellence, the upper threshold for interventions judged to offer acceptable NHS value is about £30 000 per quality adjusted life year. The institute has provided no justification for this figure, which is high when compared with that of many treatments already in use. The economic output of two residents of the United Kingdom, or the disposable income (over the poverty line) of many more, would be required to deliver each added year of life. This figure could be sustained for a few rarer diseases but would still infringe the “equal resources for equal need” rule of distributive justice.
The pharmaceuticals market is not a free market as it lacks important characteristics: availability of consumer information (on appropriate outcomes), competitive pricing, and a mechanism equivalent to consumer choice (choices on treatments and payment are made by third parties). The National Institute for Clinical Excellence should offer such a mechanism but is weak and further enfeebled by this risk sharing proposal. The Drug and Therapeutics Bulletin performs more robust independent assessments, often contrary to those by the institute. 3 4 The recent examples of riluzole and acetylcholinesterase inhibitors, with their meagre benefits, indicate that the new drugs for neurological diseases are just too expensive.
Drug companies control information and are now more secretive than governments. They put the best gloss on their results, such as reporting relative reduction rather than absolute benefit. Research should be removed from their control through independent third parties choosing researchers because of the quality of their research, not the results. All research should be openly registered, with an estimated date of publication to guarantee openness further. Until that happens all NHS and university staff should be required to register their research projects as part of governance.
Patients with multiple sclerosis do indeed need treatments that work. But these are high quality rehabilitation services (though they are not glamorous or profitable), which should be available to all, including patients who might use the new treatments as well—after all, they will not abolish disability.