Give people with PPMS the treatment they need, MS Society campaign #SpeakupforMS

Blocking of a drug as a treatment for primary progressive multiple sclerosis (PPMS), making it unavailable for use by the UK’s National Health Service (NHS), is being challenged by the country’s MS Society.

And it has coupled its opposition with a call to arms – inviting everyone to #SpeakupforMS.


Holly (Pic: MS Society).

Holly, from the society’s campaigns community, lives with PPMS. She says: “The first licensed treatment for my condition has been denied approval to be available on the NHS in England and Wales.

#SpeakupforMS“Ocrelizumab (Ocrevus) has proven it can reduce the risk of disability getting worse for people like me with early primary progressive MS.

“But the National Institute for Health and Care Excellence (NICE) has rejected it because it says its (the drug’s) costs are too high for its benefits.

Need to #SpeakupforMS

“We need to speak up together.

“We need to tell Roche, NICE and NHS England: give people with primary progressive MS access to ocrelizumab.”

You can add your voice to the campaign today by signing the MS Society’s petition here

#SpeakupforMSHolly continues: “We‘ve been waiting a lifetime for an effective treatment for primary progressive MS. This decision is crucial.

“Right now, this is just for approval in England and Wales, but any delay in making ocrelizumab available could have knock-on effects across the UK.”

According to the society, every year around 600 people are diagnosed with primary progressive MS in the UK. 

Holly asks for your suppport.

She says: “Join us and #SpeakUpforMS.”

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* * * * * 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 for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

New MS drug approval delayed by three months


People with MS who have been looking forward to the long-awaited US Food and Drug Administration (FDA) approval of the MS drug Ocrevus (ocrelizumab) are disappointed now it has been delayed. This is because, although a decision had been promised for late December 2016, an 11th-hour decision means the approval hearing has now been put back to late March 2017. I can understand that disappointment.

Manufacturer Genentech, said: “The extension is the result of the submission of additional data by Genentech regarding the commercial manufacturing process of Ocrevus, which required additional time for FDA review. The extension is not related to the efficacy or safety of Ocrevus.”ocrelizumab

Across the Atlantic, ocrelizumab is currently being reviewed for licensing in Europe as a treatment for both primary progressive and relapsing MS. Its long-term safety profile will need to be investigated, in further trials and in the real world. A decision by the European Medicines Agency (EMA) is expected in late 2017.

The full results of the latest ocrelizumab US trials have been published in the New England Journal of Medicine. These results have previously been presented at conferences, but this is the first time they have been published in a peer-reviewed journal, which is the gold standard in academic research.

Both the UK’s MS Society and MS Trust welcomed publication of the trial data prior to the FDA delay being announced.

MS Society head of clinical trials Dr Aisling McMahon said: “This (trial data) is really big news for people with the primary progressive form of multiple sclerosis. It’s the first time a treatment has shown the potential to reduce disability progression for this type of MS, which offers a lot of hope for the future.

“MS can be challenging and unpredictable and the 15,000 people in the UK living with primary progressive MS currently have no treatments available to slow the worsening of their condition. Before this treatment is available on the NHS it needs to be licensed by the European Medicines Agency and assessed for cost-effectiveness.”

MS Trust chief executive Pam Macfarlane said: “This is very encouraging news for people with PPMS. There has never been a positive result in a phase III trial of this kind and it is cause for greater hope that there is a treatment that could have an effect on disability.  We look forward to hearing more detail about the trial and whether the positive effects on disability can be sustained over the longer term.”

If ocrelizumab is licensed in Europe, the UK’s National Institute and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) will then decide whether to make it available on the National Health Service (NHS).

This decision will be based on how cost effective the treatment is. NICE will look at both the price and how much it can help people. Ocrelizumab is also being considered for licensing by the US Food and Drug Administration in the USA.

• Ocrelizumab is being developed for both relapsing and primary progressive MS. This research is notable for being the first large scale study to report a reduction in disability progression in primary progressive MS. 160 of the 487 people in the ocrelizumab group had confirmed progression at 12 weeks, compared to 96 of the 244 people in the placebo group. In relapsing remitting MS, ocrelizumab reduced the number of relapses by 50 percent compared to interferon beta 1a (Rebif).

strap-new is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Drug ´breakthrough´ for primary progressive MS

roche logo

Everyone living with primary progressive multiple sclerosis should be excited by the fact a drug being developed for treatment of that particular type of MS has been given ´breakthrough´ designation by the USA´s Food and Drug Administration (FDA).

The special status means that the drug, called ocrelizumab, could be approved more quickly following positive phase three trial results.

Breakthrough Therapy Designation exists to speed up the development and review of medicines intended to treat serious or life-threatening diseases. Fast tracking the approval process helps to ensure people have access through the US drug approval pathway as soon as possible.

The timing of any final approval is not yet known but once the FDA grants ocrelizumab a licence this means it will be available for doctors to prescribe in the US. Though the UK is part of a separate licensing process in Europe this is still a significant step forward.

The ´breakthrough designation has been granted based on top line results presented by pharmaceutical company Roche.

Ocrelizumab is the very first treatment to have shown positive results in a phase three clinical trial for people with primary progressive MS.

Treatment with ocrelizumab led to a reduction in the progression of clinical disability by 24% compared to placebo. This reduction was sustained for at least 12 weeks and was measured by the Expanded Disability Status Scale (EDSS).

In relapsing remitting MS, ocrelizumab reduced the number of relapses, by 46% in one trial and 47% in another when compared to Rebif.