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Our battle for access to beta interferon


Updated 7 December 2003

People with MS across the UK spent 1999-2002 campaigning for access to the MS modifying drug beta interferon.

The National Institute of Clinical Excellence (NICE), a Government Health Advisory Committee, had recommended the drug not be available to people with MS on the National Health Service (NHS). NICE had recommended that BI was 'not cost effective', and should not be made freely available to people with MS.

On 4 February 2002, following intensive lobbying, the Government finally accepted the MS Society's proposal that BI would be made available on the NHS as part of a 'clinical trial' (BBCi 04/02/02: Thousands to get MS drugs).

The Government agreed to pay for the treatment of those whose relapses lessen as a direct consequence of beta interferon. The cost of the drugs to those who experience no clear benefit are to be met by the pharmaceutical manufacturers and the MS Society.

The clinical trial is known as the 'Risk-sharing Scheme'.


About the Risk-sharing Scheme


A number of prescribing centres have been established across Great Britain. To be referred to a prescribing centre you need to visit your usual neurologist. If they do not work in one of the prescribing centres they will refer you on.

If you have been assessed and found to comply with the criteria for receiving one of the drug therapies and still have no prescription, contact Nicola Russell at the MS Trust at nicola.russell@mstrust.org.uk and tell Nicola about your situation.


Treatment criteria defined by the Association of British Neurologists (ABN) in January 2001:

a) Relapsing-remitting MS (to qualify for beta-interferon and glatiramer acetate)

  • able to walk at least 100 metres unaided
  • at least two relapses in the last two years
  • 18 years of age or older
  • no contraindications

b) Secondary-progressive MS (to qualify for beta-interferon)

  • able to walk at least 10 metres with or without assistance
  • at least two relapses in last two years
  • any increase in disability due to slow progression over the last two years has been minimal
  • 18 years of age or older
  • no contraindications
If you have been offered one of the disease-modifying drugs by your neurologist you may find the MS Decisions web site help. It contains lots of information about each of the drugs and may help you to choose the best one for you.

NICE guidelines for MS

The NICE MS Guidelines were finally published in November 2003.

The six key recommendations are:

  • Diagnosis without delays
  • Access to specialist services
  • Seamless services
  • Responsive services
  • Through assessment
  • Self-referral

The MS Trust has produced a factsheet giving some background to the development of the guidelines and containing the six key recommendations. The factsheet is free. Tor request a copy email info@mstrust.org.uk.



Key prescribing centres for beta interferon:

  • England
    • Basildon - Basildon Hospital
    • Bath - Royal United Hospital
    • Birmingham - Queen Elizabeth Hospital
    • Bristol - Frenchay Hospital
    • Bromley - Bromley Hospital
    • Cambridge - Addenbrookes Hospital
    • Canterbury - Kent & Canterbury Hospital
    • Chelmsford - Broomfield General Hospital
    • Coventry - Walsgrave Hospital
    • Exeter - Mardon House
    • Gloucester - Gloucestershire Royal Hospital
    • Harlow - Princess Alexandra Hospital
    • High Wycombe - Amersham Hospital
    • Hull - Hull Royal Infirmary
    • Ipswich - Ipswich Hospital
    • Leeds - St James' University Hospital
    • Leicester - Leicester Royal Infirmary
    • Lewisham - University Hospital Lewisham
    • Lincoln - Lincoln County Hospital
    • Liverpool - The Walton Centre
    • London
      • Atkinson Morleys Hospital
      • Central Middlesex Hospital
      • Charing Cross Hospital
      • Chelsea & Westminster
      • Guy's Hospital
      • Kings College Hospital
      • National Institute for Neuology & Neurosurgery
      • Royal Free Hospital
      • Royal London Hospital
      • St Thomas's Hospital
    • Manchester - Hope Hospital
    • Middlesborough - Middlesborough General Hospital
    • Newcastle upon Tyne - Royal Victoria Infirmary
    • Norwich - Norfolk & Norwich Hospitals
    • Nottingham - Queens Medical Centre
    • Oxford - Radcliffe Infirmary
    • Plymouth - Derriford Hospital
    • Poole - Poole Hospital
    • Preston - Royal Preston Hospital
    • Reading - Battle Hospital
    • Romford - Oldchurch Hospital
    • Sheffield - Royal Hallamshire Hospital
    • Southampton - Southampton General Hospital
    • Southend - Southend Hospital NHS Trust
    • Stoke on Trent - North Staffordshire Royal Infirmary
    • Sunderland - Sunderland Royal Infirmary
    • Taunton - Taunton & Somerset Hospital
    • Telford - Princess Royal Hospital
    • Truro - Royal Cornwall Hospital
    • Tunbridge Wells - Kent & Sussex Hospital
    • Wakefield - Pinderfields General Hospital
    • Woolwich - Queen Elizabeth Hospital
    • York - York District Hospital
  • Wales
    • Cardiff - University Hospital of Wales
    • Swansea - Morriston Hospital
  • Scotland
    • Aberdeen - Aberdeen Hospital
    • Dundee - Ninewells Hospital
    • Edinburgh - Western General Hospital
    • Falkirk - Falkirk & District Royal Infirmary
    • Glasgow - Southern General Hospital
    • Irvine - Ayrshire Central Hospital
  • Northern Ireland
    • Belfast - Royal Victoria Hospital


A look back: why the campaign started

31 October 2001: NICE admits plans to ban beta interferon

Government health standards body the National Institute for Clinical Excellence (NICE) has recommended that MS drugs beta interferon and glatiramer acetate should not be available to people with MS on the United Kingdom's National Health Service.

MS Society acting chief executive, Ken Walker, said, “It is now two and a half tortuous years since the NICE appraisal began. Throughout that time, we have expressed serious concerns about the way in which it has been conducted. In particular, we have repeatedly argued that the measures of cost-effectiveness NICE has used are inappropriate for a fluctuating life-long condition like MS".

People with MS and those who care about us are outraged.

Many members of Jooly's Joint in countries around the world are using these drugs and report huge improvements in their health. There is no drug that can cure MS, but beta interferon and glatiramer acetate are clinically proven to reduce the number of relapses and to slow the progression of MS in some people with some forms of the disease.

These drugs are expensive. However, when quality of life is improved we are able to keep on working, keep on looking after our families, keep making valuable contributions to society. The recommendation from NICE will mean many of us will face a bleak future.

People with MS are angry because NICE refuses to listen to us.

People with MS are angry because we have not been properly consulted.

People with MS are angry because we feel that decisions about our individual health care should be made by ourselves and our doctors, not politicians.

NICE says: "On the balance of their clinical and cost effectiveness neither beta interferon nor glatiramer acetate is recommended for the treatment of Multiple Sclerosis (MS) in the NHS in England and Wales."

People with MS do not agree. 90% of UK neurologists do not agree. The MS Society does not agree. People with MS have been very severely let down by the present Labour Government.

The MS Society says: 'How much longer must their agony go on as month by month more people with MS become too disabled to qualify? Surely it is time for Secretary of State Alan Milburn to step in to resolve a situation which has made a shameful mockery of the Government's pledge to end the lottery of care?'

Please support us.

"That [NICE] announcement was one of the few that has made me genuinely angry since becoming a Member of Parliament."
Steve Webb, MP for Northavon

The follwing letter from Jooly's Joint member Catherine Jones was published in The Mirror:

"I'm living proof that beta interferon helps MS patients. I've been prescribed beta for 5 years and I'm gutted that NICE recommends the NHS withdraws its use. Before beta I spent 2 weeks in hospital every 6 months - at great cost to the NHS. With beta I've not been in at all. I'm not cured but the difference is unbelievable."


More background information


Competition

Congratulations to Jackie who came up with
the best alternative name for NICE:
'Now I Can Expire'



Gagged by NICE



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