The MS Trust is delighted that Ocrevus (ocrelizumab) has been approved by NICE for NHS treatment of early, inflammatory primary progressive MS.
- have had symptoms of primary progressive MS for 15 years or less and
- are able to walk 20 metres or more, with or without walking aids (up to EDSS 6.5) and
- have evidence of MS activity on MRI scans
This reverses an earlier decision by NICE to reject Ocrevus for PPMS. The final publication of this decision was paused to allow time for further discussions to take place between NICE, NHS England and drug manufacturer Roche.
This is very welcome news. We commend the willingness of all three parties to find a solution which enables people with early, inflammatory primary progressive MS to access a treatment which will allow them to continue working and remain independent for longer.
But we know this is just the start. More treatments for progressive MS are still desperately needed, and we will continue to fight to ensure everyone with MS can access the treatments they need.
– David Martin, Chief Executive Officer, MS Trust
I can’t tell you how exciting it is to have the first drug to treat PPMS, Ocrevus, approved for use within the NHS. I know there are of course strict constraints governing the people Ocrevus can be prescribed for which come from the research evidence of who can benefit, but I’m desperately hoping I am one of them. Control of my deterioration will give me optimism about a future I hadn’t dared dream about.
– Yvonne Pettigrew, diagnosed with primary progressive MS
This decision applies initially to England, but Roche is working with the NHS in Wales and Northern Ireland and the Scottish Medicines Consortium to make Ocrevus available throughout the UK.
As the first approved NHS treatment for progressive MS, this is a landmark decision, which has been brought about by the collective effort and dedication of the whole MS community. The MS Trust has contributed throughout the NICE appraisal. 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, which clearly demonstrate the challenges of living with PPMS.
Following an approval from NICE, the NHS in England will have three months in which to prepare for prescribing the drug. After that it is expected that the NHS will fund the treatment if a doctor feels it is appropriate.
New clinical trial announced for Ocrevus in primary progressive MS
ORATORIO-HAND is a new clinical trial to test the effect of Ocrevus on hand and arm function. The study will recruit 1000 people with more advanced disability, including those who need to use a wheelchair and are up to 65 years old. Detailed planning for the study is still underway but it is anticipated that recruitment will start later this year, with study centres worldwide, including the UK.
Ocrevus is the first treatment to be approved for NHS treatment of primary progressive MS. People with this form of MS experience disability more rapidly than those with other types. Clinical trials have shown that Ocrevus can slow the worsening of disability in early, inflammatory PPMS, with the potential to delay the need for a wheelchair by seven years.
Ocrevus is taken as an intravenous infusion (drip). The first dose is given as two separate infusions, two weeks apart. Further doses are given as one infusion every six months. The most common side effects include infusion-related reactions such as headache, rashes, fever and nausea. Other side effects include infections such as coughs, colds, chest infections and herpes virus infections (such as cold sores or shingles).
Does a sense of humour help when you're living with MS?
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Nigel Bartram was diagnosed with multiple sclerosis 13 years ago. In his new book MS A Funny Thing (well s😊metimes), he looks at some of the more comedic elements of living with a chronic illness.
Updated NICE multiple sclerosis guideline contains some good news and some bad news
22/06/2022 - 00:00
There are some positive points in the revised 2022 guideline but the MS Trust is disappointed that NICE has been unable to recommend Fampyra.
Connors letter to MS
21/06/2022 - 00:00
In 2022, Connor will be taking part in the Great North Run to support the MS Trust. Here, Connor writes a letter to MS, openly sharing his thoughts on the condition his sister was diagnosed with at the age of 14.
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