Getting disease-modifying drugs in the U.K.

Thanks in large part to advocacy by the MS Society of Great Britain--including J.K. Rowling's impassioned voice--disease-modifying drugs may now be prescribed by the National Health Service (NHS) under a new plan agreed upon by the Department of Health, the National Assembly for Wales, the Scottish Executive Health Department, and the Northern Ireland Department of Health.

There will be long-term monitoring of the drugs and an innovative pricing arrangement by their manufacturers. If the monitoring shows the drugs do not meet the manufacturers' expectations, the NHS will pay the manufacturer less for them. This is described as "risk sharing" between the NHS and the drug companies.

In some ways, the plan is like a trial. However, there are significant ways in which it is different. First, trials usually include a placebo group, which does not receive the drugs, and involve relatively small numbers of people. Under this plan, the drugs will be free to all people with MS whose neurologists believe might benefit from them, and the number is not restricted. It is estimated that 10,000 people may be eligible. Second, people will only come off the drugs if they prove ineffective.

It may take 18 months to assess everyone meeting the criteria (which were set by the Association of British Neurologists, and mirror the criteria in the National MS Society's Consensus Statement of 1998). People with MS and their neurologists will together decide which drug is most suitable and agree on arrangements for further monitoring--probably once or twice a year. MS nurses will be closely involved, with the MS Society committed to working with NHS to increase their number through partnership funding.

The British government has also issued new guidance for English local councils on charging for home-care services, designed to make the system fairer, especially in the methods used to determine people's ability to pay. This affects English councils only. Other members of the United Kingdom will make independent decisions.

Debbie Reeves is the editor of MSMatters in the U.K. [MSMatters continues to run letters citing long delays in obtaining services, such as waiting five months to see a neurologist. The need for individual and collective advocacy continues on both sides of the Atlantic.--Editor]