who's eligible for MS drugs?
by Jenny Bryan
People with multiple sclerosis (MS) may have to wait up to 18 months before they can get beta interferon or glatiramer acetate – the two drugs made available on the NHS under a special government treatment scheme. This is because around 30,000 people with MS will need to be assessed in order to identify the 10,000 who are likely to benefit from treatment.
© Getty
The MS Society and the manufacturers of beta interferon and glatiramer acetate will together provide around £800,000 to pay for 20-25 specialist nursing posts to help fast track the assessments. But neurological services in the UK are already overstretched by current workloads, with outpatient waiting times over six months in many areas. This may mean that, despite extra funding, some MS patients will find that they are no longer eligible for treatment by the time they are assessed because their disease has progressed too far.
who will be assessed?
Under the new scheme, people with the relapsing-remitting and secondary progressive forms of MS will be considered for beta interferon and glatiramer acetate treatment since these forms of the disease have been shown to respond to the drugs.
In relapsing-remitting MS, symptoms such as muscle weakness or visual disturbance lasting for a few days are followed by a complete or partial recovery over a few weeks, with no progression between attacks.
Relapsing-remitting disease may develop into secondary progressive disease in which there is progressive deterioration and increasing disability with few if any remissions.
The third main form of MS is primary progressive disease in which symptoms get steadily worse, with progressive disability and no real recovery between attacks. This form of MS is not included in the government scheme as there is little evidence that it responds to beta interferon or glatiramer acetate.
who's eligible?
Having relapsing-remitting or secondary progressive MS does not guarantee treatment. The DoH scheme requires that people with these forms of the disease are then assessed according to guidelines from the Association of British Neurologists (ABN).
People with relapsing-remitting MS must:
- be able to walk independently for 100 metres
- have had at least two relapses in the last two years
- be 18 years or over.
People with secondary progressive MS must:
- be able to walk 10 metres with or without assistance
- have had at least two disabling relapses in the last two years
- have had minimal increase in disability due to slow progression over the last two years
- be 18 years or over.
how treatment may help
In relapsing-remitting MS, beta interferon and glatiramer acetate reduce the annual relapse rate by about a third and slow the progressive disability associated with the disease.
In secondary progressive MS, beta interferon again reduces annual relapses by about a third and delays disability. Studies haven't been carried out with glatiramer acetate, though it can be prescribed for this form of MS under the government scheme.
why has it taken so long to get treatment?
The first brand of beta interferon came onto the market in 1996 (Betaferon), closely followed by Avonex in 1997 and Rebif in 1998, and the battle to get all health authorities to pay for them has been going on nearly ever since. Glatiramer acetate (Copaxone) received a licence in 2000 and joined the fight. Last year, the National Institute for Clinical Excellence (NICE) ruled that both drugs were too expensive for the NHS but did advise the government to find some way to make them available.
The new government scheme, which will monitor the effectiveness of beta interferon and glatiramer acetate in people with MS over the next 10 years, is the answer. Initially, the NHS will pay full price for the drugs. But, if the monitoring system shows that they do not meet required levels of cost effectiveness, companies will have to reduce their prices.
stopping treatment
Some people do not benefit from beta interferon or glatiramer acetate despite being eligible for treatment. The Association of British Neurologists recommends that neurologists discuss stopping treatment with their patients if:
- they have two disabling relapses within a 12-month period
- there is secondary progression and clear signs of increasing disability over a six-month period
- they lose the ability to walk with or without assistance, persisting for at least six months.
A few people have to stop treatment because of side effects of treatment (eg: flu-like symptoms, skin reactions or liver problems with beta interferon; and skin reactions, chest pain or breathing difficulties with glatiramer acetate), but both drugs are generally well tolerated.
Clearly, having to stop treatment is disappointing for people with MS and their families and it is important to discuss how this will be decided before starting treatment, so that everyone understands what has been agreed.
help and info
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organisations
MS Society
372 Edgware Road
Staples Corner
London NW2 6ND
Tel: 020 8438 0700
Helpline: 0808 800 8000 (Mon-Fri 9am-9pm)
Information line on DoH/MS drugs scheme: 020 8438 0862 (Mon-Fri 9am-5pm)
E-mail: webinfoenquiries@mssociety.org.uk
Website: www.mssociety.org.uk
The UK's largest charity for people affected by MS. The Society funds MS research, campaigns on behalf of people affected by MS, runs respite care and holiday homes, provides grants, and education and training on MS. Produces numerous publications and runs a freephone specialist helpline, providing information and support to people with MS, their family, friends and carers.
The Multiple Sclerosis Resource Centre (MSRC)
7 Peartree Business Centre
Peartree Road
Stanway
Colchester CO3 0JN
Support Line: 0800 783 0518 (Mon-Fri 8.30am-5pm and anwerphone)
MS Counselling Service: 0800 783 0518 (24 hours)
Tel: 01206 505444 (Mon-Fri 8.30am-5pm)
Website: www.msrc.co.uk
Provides information and support to anyone affected by MS, including those with a diagnosis or expecting one, family, friends, employers, work colleagues and professionals.
Multiple Sclerosis Trust (MS Trust)
Spirella Building
Bridge Road
Letchworth SG6 4ET
Tel: 01462 476700 (Mon-Fri 9am-5.30pm)
E-mail: info@mstrust.org.uk
Website: www.mstrust.org.uk
Independent UK charity for people with multiple sclerosis, their families and friends, and for all health professionals. Offers practical information about MS, education for nurses and other health professionals, and research which is practical and relevant to people who live with MS.
websites
Association of British Neurologists (ABN)
www.theabn.org
Represents clinical and academic neurologists in the UK. The document Guidelines for the Use of Beta Interferons and Glatiramer Acetate in Multiple Sclerosis, published January 2001, is available to download at www.theabn.org/downloads/msdoc.pdf
MS Therapy Centres' website
www.ms-selfhelp.org
Contains details of every regional MS therapy centre in the UK. Features an extensive range of information and advice regarding multiple sclerosis, including what it is, signs and symptoms, and where to get help, plus articles on oxygen therapy, physiotherapy, and dietary advice.
Multiple Sclerosis International Federation
www.ifmss.org.uk
Established in 1967 as an international body linking the activities of national MS societies around the world. Helps the MS societies in their tasks of providing information and resources for those affected by MS and raising funds for research to find treatment and a cure for MS.
reading
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The Multiple Sclerosis Diet Book: A Low-fat Diet for the Treatment of MS by Roy Laver Swank and Barbara Brewer Dugan (Bantam Doubleday Dell Publishing Group, 1987) |
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Multiple Sclerosis by Judy Graham (HarperCollins, 1998) |
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Multiple Sclerosis at Your Fingertips by Ian Robinson, Stuart Neilson, Frank Clifford Rose (Class Publishing, 1999) |
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Multiple Sclerosis: The Facts by Bryan Matthews and Margaret Rice-Oxley (Oxford University Press, 2001) |
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(March 2002, resources updated January 2005)
