Leading MS organisations are seeking support to gain approval for ocrelizumab (Ocrevus) to treat all primary progressive MS (PPMS). It is already approved for use against early PPMS.
Both of the UK’s MS Society and MS Trust are campaigning to get the medication approved for wider use by the country’s National Health Service (NHS). And they are seeking the support of patients, carers, and health professionals in their efforts to influence the National Institute for Health and Care Excellence (NICE).
NICE is currently assessing ocrelizumab for PPMS to decide whether it should be prescribed by the NHS in England and Wales.
The MS Society said: “We’ll be telling NICE why people with both primary progressive and relapsing MS should be able to access ocrelizumab through the NHS.
“We want to hear from people who’d like to take ocrelizumab, to support our submission to NICE.
Tell what it’s like to live with PPMS
“Do you have relapsing MS and think you’d benefit from taking it? Or, if you have primary progressive MS, can you help us tell NICE what it’s like to live with, and why the first treatment option matters to you?”
To give the society your views, you are asked to send an email here.
The MS Trust says it will be explaining to NICE why it thinks ocrelizumab should be made available on the NHS.
The trust also appealed for support. It said: “To help us make a strong case, we want to hear your experiences of living with PPMS, your views on current NHS care for PPMS and your thoughts on ocrelizumab.
“We’d like to hear from you if:
• you have primary progressive MS
• you have a different type of MS, but would like to add your views
• you are a partner / friend / relative / carer of someone with PPMS
• you are a health professional providing care for people with PPMS
“Tell us what you think by completing this short questionnaire by 14 February.”
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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.
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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.
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I’ve seen no benefit. I have definitely declined.
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