May 6, 2003
More than 1,000 people with multiple sclerosis have still not been assessed for treatment with beta interferons or glatiramer acetate a year to the day after an innovative prescribing scheme for the disease-modifying drugs was introduced by the Department of Health.
Mike O'Donovan, chief executive of the Multiple Sclerosis Society, said, "Though the scheme is working well in many parts of the UK, people in a number of areas have not yet been given a date for assessment let alone begun treatment. So the notorious postcode lottery lives on. It now seems very unlikely the Department's target of clearing the backlog of qualifying patients by November will be met."
Assessment centres where the scheme has been running into trouble include those in Ipswich, Leeds, North Staffordshire, Southend, Swansea, Truro and one in London.
Independent research for the MS Society suggests that nearly one in five of 7,500 to 9,000 people estimated to be eligible for the drugs, under Association of British Neurologists guidelines, are still waiting for an assessment date. A survey by ORL found 40% of respondents in England and Wales were receiving treatment and another 16% had been assessed and were waiting to start. Problems are widespread with 55% reporting difficulty getting an initial assessment and 72% frustrated with the process of getting the drugs.
Earlier this year, another ORL survey for the Society, among officials responsible for the scheme, showed that in some areas sufficient funds had yet to be allocated. Lack of appropriately trained staff was also hampering progress in some places.
Said Mr O'Donovan, "Ministers have repeatedly made clear their commitment to the scheme but continuing delays in certain places must be urgently resolved. Many people have been waiting for treatment for several years and are deeply worried that their symptoms may progress too far for them to qualify. To make matters even worse, they see others already on the drugs benefiting from fewer and less severe MS attacks."
The Department's 'risk-sharing' scheme is studying the long-term cost-effectiveness
of the MS drugs. Prices paid by the NHS depend on whether the treatments
meet agreed patient benefit targets.
Copyright © 2003, Multiple Sclerosis Society