The MS Trust is hugely disappointed that NICE is unable to recommend ocrelizumab as an NHS treatment for early primary progressive MS.
NICE acknowledges that primary progressive MS (PPMS) can have a substantial impact on the lives of people with the condition and their families. They also recognise that clinical trials have shown that ocrelizumab (Ocrevus) can slow the worsening of disability in early, active PPMS, allowing people to continue working and remain independent for longer.
However, NICE considers that the benefits gained from ocrelizumab treatment do not represent value for money to the NHS, when compared to the cost of routine NHS treatment that NICE considers to be provided for people with PPMS. The manufacturer’s proposal to provide ocrelizumab to the NHS at a reduced price for PPMS has also been rejected. This announcement confirms NICE’s original decision announced in June.
As this is a final decision, the NICE appraisal process provides very limited opportunity to persuade NICE to change their verdict, but the MS Trust will continue to campaign for equitable, effective and efficient care for everyone living with MS.
The MS Trust has contributed throughout the consultation. Before preparing our submission to NICE, we conducted a survey to gather the views of those affected by PPMS. We received nearly 500 responses from people with PPMS, their families and specialist MS health professionals. We are very grateful to everyone who contributed their experiences of living with PPMS.
There are currently no approved treatments for PPMS and people with this form of MS experience disability significantly quicker than those with other forms. The lack of treatments that can modify their disease often forces them to rely on wheelchairs and mobility aids sooner, impacting on their independence. People do everything they can to minimise the impact PPMS has on their lives, but what they really want is access to treatment which will slow down the progression of their disease. They risk becoming the forgotten people with MS and it is critical that NICE overturn the decision for ocrelizumab as soon as possible.
People with PPMS have been desperately waiting years for a treatment that can slow the progression of their disease, they should not be deprived of the hope that a disease modifying drug offers now that there is a licensed treatment.
- Jo Sopala, Director of Health Professional Programmes, MS Trust
The introduction of disease modifying drugs for relapsing remitting MS has been the catalyst for significant improvements in MS services for people with relapsing MS. A survey conducted by the MS Trust in 2016 found that on average, people with progressive MS are seeing MS specialists much less often than people with relapsing MS. The introduction of a treatment for PPMS might also have generated a greater focus on services for progressive MS and a more proactive approach to managing PPMS which would ultimately have benefited a much wider group of people with PPMS than just those who would have been eligible for ocrelizumab.
Consultant neurologist Dr Martin Duddy on NICE'S decision to reject ocrelizumab for early primary progressive MS in England and Wales.
MS in the Media
17 May 2019
- Statin has potential as SPMS drug
- EastEnders MS storyline
My Vespa adventure for the MS Trust
13 May 2019
For his next fundraising adventure, our supporter Nick Jolly will be riding 2,500 miles to Hungary on his Vespa scooter. He tells us about the inspiration behind his challenge.
"When you lose something, it makes you appreciate what you have"
13 May 2019
Danielle MacGillivray stars in our new film, Danielle. Here she tells us about her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.