Access to disease modifying drugs
The MS Trust believes that people with multiple sclerosis in the UK should have access to all licensed drugs on the NHS, and we campaign to ensure this is a reality.
Background
'Disease modifying drugs' is an umbrella term used for the drugs now available that can have an effect on the underlying course of MS in people who experience relapses.
The drugs are:
- Avonex (interferon beta-1a)
- Betaferon (interferon beta-1b)
- Copaxone (glatiramer acetate)
- Extavia(interferon beta-1b)
- Rebif (interferon beta-1a)
- Tysabri (natalizumab)
Avonex, Betaferon, Copaxione and Rebif were launched in the 1990s. Tysabri was made available in 2007 and Extavia in 2009.
In the late 1990s, usage of the beta interferons and galtiramer acetate was patchy. They were much cited as an example of postcode prescribing, and it was no surprise when the Department of Health asked NICE (the National Institute for Health and Clinical Excellence) to assess the drugs and rule on whether they should be available on the NHS. The process took three years and the MS Trust was prominent in the campaign to encourage NICE allow people with MS access to the drugs.
The Risk-sharing Scheme
In February 2002, NICE ruled that whilst the beta interferons and glatiramer actetate were effective in reducing the number of relapses and in reducing the severity of those relapses, it was unclear whether they were cost-effective. NICE therefore suggested that the Department of Health should look into ways that these drugs could be available to people with MS on the NHS in a cost-effective manner.
As a result, in May 2002, the Department of Health issued Health Service Circular 2002/004 which launched the Risk-sharing Scheme. The Risk-sharing Scheme ensures that these four disease modifying drugs are available on the NHS to everyone with MS who meets the prescribing guidelines drawn up by the Association of British Neurologists.
- More information on the Risk-sharing Scheme
- Read Health Service Circular 2002/004 on the Department of Health website
- ABN guidelines - revised November 2009 (pdf 160kb)
Whilst Health Service Circular 2002/004 ensures availability of the beta interferons and glatiramer acetate on the NHS, an important element of the Scheme is the long-term monitoring of approximately 5,000 people with MS to assess the cost effectiveness of these drugs over a period of 10 years in routine clinical practice. The MS Trust has a specific role in this research element to ensure that it is properly run and to manage the contract with the research provider.
Health Services Circular 2002/04 remains in force, and this gives anyone in England who meets the prescribing guidelines the legal right to receive treatment. In November 2006 the Department of Health contacted all Strategic Health Authorities in England to remind them of their obligation to people who meet the prescription criteria. The devolved administrations in Scotland, Wales and Northern Ireland have also signed up to the principles enshrined in the Risk-sharing Scheme.
A briefing note was sent to PCTs and Hospital Trusts outlining their statutory duty under directions made under the NHS Act 1977 to fund treatment for eligible patients, including those who are not subject to routine monitoring.
Analysis of date within the Scheme is planned to occur every two years. The first analysis was published in the BMJ in December 2009. The four year analysis is currently being prepared.
Tysabri (natalizumab)
Tysabri (natalizumab) is available for people with highly active relapsing remitting disease and in 2007 received a positive NICE guidance. It is now available in most of the prescribing centres across the UK. If you have any problems in being prescribed Tysabri, contact the MS Trust.
How to get the disease modifying drugs
The disease modifying drugs are only prescribed by neurologists in prescribing centres
If you are eligible for treatment and are having problems being assessed or in being prescribed treatment, please contact the MS Trust.
