News
Open Door - May 2011 page 3
Fingolimod licensed
European regulators have approved fingolimod (Gilenya) as a second line disease modifying treatment for relapsing remitting MS. Taken as a daily capsule, fingolimod has been approved for use with people who continue to have relapses or find their relapse rate has increased despite a year's treatment with one of the first line drugs (Avonex, Betaferon, Copaxone, Extavia, Rebif). It can also be used for people with rapidly evolving severe relapsing remitting MS, defined as two or more relapses a year. NICE will publish its decision on whether fingolimod should be funded by the NHS before the end of the year.
Welfare changes
The Welfare Reform Bill began its progress through Parliament in February.
Among the proposals are:
- The combination of employment related benefits into the single Universal Credit
- Reforms of Disability Living Allowance (DLA), which is to be replaced with the Personal Independence Payment (PIP)
- Reform of the Employment and Support Allowance (ESA)
The MS Trust has written to the Prime Minister to express our concerns that the changes should encourage independence and not just be a means to save money. We also share the concerns of many people with MS that the assessments for the reformed benefits will need to be sophisticated enough to cope with a fluctuating condition such as MS.
Natalizumab risk warning
The MHRA - the drug safety agency - has issued an updated warning about the higher risks of PML, a serious brain infection, in people taking natalizumab (Tysabri) who have had previous immunosuppressant therapy, such as mitoxantrone or azathioprine. This is in addition to a previous warning that risk of PML increases in people who have been treated for more than two years.
Natalizumab has been prescribed to almost 80,000 people worldwide. As of March, 102 people have been affected by PML of whom 21 have died. As yet there have been no cases of PML in the UK.
Mobility aid market study
The Office of Fair Trading (OFT) is undertaking a study of the mobility aids market, which as well as wheelchairs and scooters also includes items such as stair lifts, bath aids and specialist seating.
The study asks:
- Are consumers able to find appropriate information when buying equipment?
- Are consumers being treated fairly by suppliers?
- Is competition in the wheelchair market helping consumers?
In replying to the consultation, the Therapists in MS group, in collaboration with the MS Trust, point out that unbiased professional advice is available from occupational therapists (OTs). However, they acknowledge barriers to this support as many people are never referred to an OT. The response expresses concerns that waiting lists or delays caused by limited resources often mean that people are not able to receive professional advice when they need it and instead rely on information from suppliers or from friends or family.
NHS wheelchair clinics exist throughout the country but also often have long waiting lists for assessments. Standard wheelchairs are often not suitable for people with MS and the level of information about buying and using a wheelchair available to people on the NHS voucher scheme is inconsistent.
The OFT aim to publish the market study in September 2011.
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Disclaimer
Open Door articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.