Draft NICE guidance would deny up to 5,500 people with MS a valuable extra treatment option that might help delay the onset of severe disability
05 August 2011
Author: MS Trust
MS Trust is disappointed that draft guidance from NICE recommends that fingolimod (licensed under the Novartis owned trade name of Gilenya) should not be made automatically available to people with multiple sclerosis on the NHS.
Fingolimod has already been granted a European license for people with rapidly evolving MS and we believe it should be automatically available on that basis in the UK through the NHS - and not just available to those who can afford it on private prescription.
People with relapsing remitting multiple sclerosis (RRMS) currently have limited treatment options and without treatment face the very real prospect of potentially severe disability at an early age.
Of the estimated 100,0001 people in the UK with MS approximately 20% of them currently receive any type of disease modifying therapies (DMT) to help them manage their condition. DMTs can help make symptoms less severe and relapses less frequent for people with MS allowing them to maintain their quality of life for longer.
In the UK people tend to start this sort of treatment later and at lower intensity than in other developed countries. In the Netherlands 35% of people with MS are receiving DMTs while in Germany it is as high as 50%2.
Making fingolimod automatically available through the NHS would add a valuable additional treatment option for the small3 number of people with RRMS who haven't responded to existing treatments or whose symptoms are getting worse very quickly.
For most of them having access to disease modifying treatments such as fingolimod is their only realistic hope of delaying the onset of severe disability.
We are reviewing the detailed draft guidance from NICE and will respond formally to the consultation process. We remain hopeful that NICE will reconsider its draft guidance.
Pam Macfarlane, Chief Executive of the MS Trust
Fingolimod - A to Z of MS
Tysabri - A to Z of MS
Disease modifying treatments - A to Z of MS
Disease modifying drug therapy book
Disease modifying drug videosNOTES:
1The Department of Health do not collect or publish statistics on the number of people with MS or the type or stage they are at. It is a generally accepted figure that approximately 100,000 people in the UK are diagnosed with MS.
2Source: Journal of Neurology and Neurosurgery 2006; 77: 918-926 Costs and quality of life of patients with multiple sclerosis in Europe. www.jnnp.com
3No authoritative figures exist for this but from our own estimates are based on our day to day work with people with MS and their health professionals. We estimate as many as 5,500 people could potentially benefit from this sort of treatment. We calculate that 10% of the 18,000 people already receiving DMTs might have a highly active form of MS. We also estimate that up to 20%, or another 3,600 people, of those currently receiving DMTs may not respond well to current treatments and need to consider alternatives.