News - May 2007
Open Door - May 2007 page 6
NICE propose no to Tysabri
On 30 March, NICE gave its preliminary verdict that "Natalizumab is not recommended for the treatment of highly active relapsing/ remitting MS".
The MS Trust was represented at the Appraisal Committee meeting by two people with personal experience of the benefits of Tysabri and has since lodged a formal complaint about the way in which they were prevented from giving evidence. We are also considering our response to the recommendation.
MS Trust Chief Executive Christine Jones said, "We are angry at the lack of understanding of MS and its impact both on the individual and on their family. We will continue to work hard to explain to NICE the reality of life with MS."
How you can help
If you have any views on this topic or any experience with Tysabri we would like to hear from you. You may also wish to contact your MP about this further example of lack of commitment to NHS funding for MS.
Read, order or download the MS Trust's Tysabri factsheet
Growing variations in the NHS
At the MS Trust we are increasingly concerned by recent examples of inequality in health services around the UK.
From 1 April, prescriptions charges were abolished in Wales. On the same date, in the rest of the UK, the prescription charge rose by 20p to £6.85. This imbalance is also demonstrated by the different pay deals awarded to nurses in the NHS. In Scotland the 2.5% pay rise recommended by the Independent Pay Review Body was awarded in full from 1 April. In England, the award was split so that nurses received 1.5% in April with a further 1% rise to come in November.
The MS Trust is concerned that regional differences will eventually have an impact on the range and level of services available to people with MS in different parts of the UK and we will campaign to maintain a national health service.
New guidelines for disease modifying drugs
In March, the Association of British Neurologists (ABN) published their revised guidelines for prescribing the disease modifying drugs - beta interferon and glatiramer acetate.
Since the previous guidelines were published in 2001, research has suggested that treatment is more effective if started soon after diagnosis. As a result, the ABN says the drugs should be available to people with relapsing/remitting MS who have had one disabling relapse in the last year, rather than the previous two in two years.
In secondary progressive MS, treatment is appropriate when relapses are the main cause of increasing disability.
The guidelines mean more people will be eligible for the drugs but it is not clear whether funding will be available in all areas. If you are prescribed these drugs but are having difficulty with NHS funding or if you are told there is a waiting list in your area, contact the MS Trust on 01462 476700 or info@mstrust.org.uk
Join the Open Door mailing list to receive your own copy through the post (UK addresses only) or by email.
