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.

#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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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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 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.

MS drug Ocrevus could be barred from health service

Ocrevus may have taken the worldwide multiple sclerosis community by storm but it seems set for a rocky ride in the United Kingdom. It’s quite possible that it will not be available through the country’s National Health Service (NHS).

ocrelizumabAlthough the drug1, known by the non-brand name, ocrelizumab, was licensed by the European Medicines Agency (EMA) in January as an MS treatment, that is not the end of the story. It was licensed to treat both people with relapsing and early primary progressive MS.

However, before a treatment is allowed to be available through the NHS in England and Wales2, it has to be evaluated by the National Institute for Health and Care Excellence (NICE). Disappointingly, it has provisionally decided NOT to recommend ocrelizumab for people with relapsing MS on the NHS.

Fortunately, this is not its final decision. You can let them know what you think through the NICE website before Wednesday April 25, so there is no time to lose. NICE is due to reach its final decision in May.

Should we blame pharmaceutical company Roche for the mess? Well, maybe. NICE has said the evidence submitted by Roche is not enough to show it’s more clinically and cost effective than other treatment options for relapsing MS.

Turn decision around

MS Society director of external affairs Genevieve Edwards said: “Naturally we’re very disappointed by the NICE guidance. But the decision isn’t set in stone, and we’ll be speaking to NICE and the drug manufacturers to make sure we get the right outcome for everyone living with MS.

“Over 100,000 people have MS in the UK, and we’re working hard to make sure they can all access more and better treatments. We’ve been here before and turned it around.”

The review of ocrelizumab as a treatment for primary progressive MS is taking place separately and is not affected by any decision regarding the relapsing form of the disease.

Edwards said: “For us and thousands of others, ocrelizumab also offers immense hope in progressive MS. We’re yet to know what NICE recommends here, and will be continuing our efforts to make sure everyone who could benefit can access the drug. There are still people with MS who don’t have any options for treatment, and addressing this is our absolute priority.”

Anyone who is already receiving Ocrevus through the NHS, should not panic. NICE said its recommendation is not intended to affect treatment that was started before this guidance was published.

“People having treatment outside this recommendation may continue without change to the funding arrangements in place for them before this guidance was published, until they and their NHS clinician consider it appropriate to stop,” it said.

Notes:

1 Ocrelizumab is an intravenous infusion taken every six months. It was licensed to treat both people with relapsing and early primary progressive MS by the European Medicines Agency (EMA) in January this year.

2 The Department of Health in Northern Ireland is expected to make a decision on ocrelizumab for relapsing MS soon. Its decisions are usually based on those made by NICE. The Scottish Medicines Consortium (SMC) is currently carrying out a separate appraisal for people in Scotland.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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 for your general knowledge only. It 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. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

MS researchers find new switch for myelin repair

Researchers have found a brain molecule that promises to have a vital role in the repair of the myelin sheath. This is damaged in people with multiple sclerosis.

The molecule was found by a research team at the MS Society Edinburgh Centre for MS Research, in the UK. It amounts to a switch that can promote myelin repair in the brain and spinal cord.

myelin

Dr Veronique Miron of the Edinburgh Centre for MS Research (pic: MS Society).

Dr Veronique Miron headed a team that previously showed that a protein called activin-A is important in remyelination. However, at that time, despite their efforts, it was not clear how it worked.

This time, their new research has found the exact switch in cells that it triggers. Studies in mice showed that when this switch, or receptor, is turned on by the activin-A protein. According to their report, which was published in the journal Acta Neuropathologica, it increases the number of myelin-making cells. As a result, it boosts myelin repair.

The Edinburgh team used tissue from the MS Society Tissue Bank to look for the ‘receptor’, called Acvr2a, in MS brain lesions.

They found that In tissue from people with progressive MS, levels of Acvr2a were higher in areas where myelin repair was active. Conversely, where myelin repair was not taking place in MS lesions, levels of the receptor were lower.

Search for new treatment

Next, scientists will look to identify drugs able to target Acvr2a to promote myelin repair. These could then be developed into treatments for people with MS.

Senior author Dr Veronique Miron said: “When we first discovered this protein activin-A, we didn’t know exactly what role it played in remyelination. We now know it binds to a specific receptor, which then causes cells to carry out myelin repair.

Dr Susan Kohlhaas, MS Society director of research (pic: MS Society).

This is a really exciting discovery because we can now focus our efforts on developing drugs that target the receptor. If we can do that, we can encourage cells to make new myelin after damage has been done in MS.”

MS director of research Dr Susan Kohlhaas said: “We’re thrilled to be supporting Dr Miron’s ground-breaking work. Many of the 100,000 people living with MS in the UK still don’t have any treatment options. Finding new targets like this receptor mean we’ll be able to develop more effective treatments and stop MS faster.”

While this discovery is important to everyone with MS, it’s particularly exciting for anyone who, like me, has a form of progressive MS.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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 for your general knowledge only. It 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. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Medicinal cannabis legalisation could help treat many diseases

Disease and patient-orientated organisation the MS Society is leading support for a move to legalise medicinal cannabis in the UK.

The House of Commons is soon to consider the Legalisation of Cannabis (Medicinal Purposes) Bill 2017-19. It is a Private Member’s Bill sponsored by Paul Flynn, Labour MP for Newport West.

cannabis

Paul Flynn MP.

The Bill is due to have its second reading debate in two weeks, on Friday 23 February 23. It received its first reading on October 10 last year

In summary. the Bill would allow the production, supply, possession and use of cannabis and cannabis resin for medicinal purposes; and for connected purposes.

I believe such a move should be welcomed.This is because it would stand to benefit many more people than those with MS. It could potentially help relieve the symptoms of chronic pain, spasticity, and a host of other medical conditions and diseases.

Writing in the UK’s Pharmaceutical Journal, Flynn said: “During my 30 years in parliament I have campaigned against the harm caused by the antidepressant paroxetine and the nonsteroidal anti-inflammatory drug rofecoxib; and I now chair a campaign opposed to the growing menace of opioid misuse. But cannabis is a drug that evidence suggests could provide unique relief for many who suffer from the cruel disease MS. The law should not criminalise patients seeking relief from pain and spasm.”

Cannabis can help where other treatments fail

The MS Society is one of the organisations keen to support the Bill. The society’s campaign team says: “For some people with MS, there’s no effective legal treatment for pain and muscle spasms. But many find that cannabis for medicinal use can help when other treatments haven’t. 

cannabis“Right now, cannabis for medicinal use is illegal. We want the UK Government to make it available to people who could benefit.  

“When we asked last year, 72% of people with MS agreed that cannabis should be legalised for medicinal purposes.

“A Bill tabled by Newport West MP Paul Flynn on the legalisation of cannabis for medicinal use is scheduled to be discussed in the House of Commons this month on this issue. We need the UK Government to take action.”

The society is also urging its members and supporters to get behind the Bill and take action. It says:

“Please Tweet your MP and ask them to write to the Minister. You’ll be helping to show the UK Government how much support there is for this issue. If you don’t have Twitter, please email your MP instead.

“With your help, we can get closer towards a change in the law.”

Medical Marijuana Inc says medicinal cannabis has “potential as a viable treatment option for helping to manage chronic pain, nausea and spasms, and for providing healing effects for those with serious conditions like multiple sclerosis, arthritis, inflammatory bowel disease, HIV/AIDS, diabetes, cancer and spinal cord injuries.”

Its website lists 45 conditions for which, it says, “medical marijuana is now a treatment.”

The sooner that the UK government legalises medicinal cannabis the better.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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.

MS bodies look for NICE support for PPMS treatment

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.

ocrelizumabBoth 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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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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.

Cuts proposed to MS treatment options

It cannot be right, it really can’t! People with multiple sclerosis are facing being denied access to five previously approved disease modifying therapies (DMTs). This shocking development would affect people who are newly diagnosed or those wishing to change to a different drug.

The proposal to cut the number of treatment options comes in the form of a draft recommendation from the UK’s National Institute for Health and Care Excellence (NICE). Its preliminary proposal would affect people with MS in England and Wales who receives treatment via the country’s National Health Service (NHS).

NICE’s role is to provide national guidance and advice to improve health and social care.

A consultation period on the proposed recommendation ends this Wednesday, January 24, so very little time remains for patients, doctors, caregivers and others can make their views known. To add your comment, click on this link.

NICE is to meet again on March 6 to review comments received, and discussions it has had with the drugs’ manufacturers, before it makes its final recommendation.

treatment optionsThe good news is that, under the preliminary proposal, anyone with MS who is already on one of these treatments would be able to continue to take them.

NICE’s draft recommendation, if confirmed, would mean the cheapest drug Extavia (interferon beta-1b) would continue to be available on the NHS for new patients. But five others would no longer be treatment options because of costs.

The five medications that NICE is proposing to make unavailable to people who are newly diagnosed, or want to change their treatments, are:

  • Avonex (interferon beta-1a)
  • Betaferon (interferon beta-1b)
  • Copaxone (glatiramer acetate)
  • Plegridy (peginterferon beta-1a)
  • Rebif (interferon beta-1a)

NICE says it has made the draft recommendation because it believes that while all the treatment options have a similar clinical effect, only Extavia is cost-effective.

Treatment options: a step backwards

Both the MS Society and MS Trust are ranged against the proposal.

MS Society director of external affairs Genevieve Edwards says the society doesn’t want to see patient choice limited in this way.

She said: “While people with MS already receiving these treatments can be assured they won’t have to come off them, we’re worried about what this proposal means for the future of patient choice. We have made so much progress on treatment options for people with MS, and it would be a significant step backwards if people with MS were now left with less choice and potentially no effective option.

“We want the companies who make these drugs to keep negotiating and come to a deal with NICE and NHS England so patients don’t lose out. Everyone with MS should be able to get fair and equal access to the right treatments at the right time.”

A statement from the MS Trust says it is very disappointed in the initial decision.

It says: We do not believe that NICE’s recommendations are in the best interests of people with MS or the NHS.  We strongly believe that all current treatments should remain available as treatment options for all eligible patients.

“NICE has acknowledged that all six drugs are equally effective at reducing the number of relapses and slowing down disability progression. The decision to approve Extavia and not the other five drugs all comes down to cost – Extavia is the cheapest option.

“These recommendations would take away choice from people with MS.  In our view, the recommendations do not take account of:

  • the differences in how treatments are administered
  • the diverse lifestyles of people with MS, and how different treatments suit different people
  • the differing tolerances of individuals to the side effects of the drugs”

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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.

 

Healthy eating can improve MS symptoms, but societies won’t endorse any one diet

Multiple sclerosis organisations around the world back the idea that eating a healthy diet can help people with the disease. But they are refusing, correctly in my view, to get behind any one diet.

dietA new study, published in Neurology, says that eating a healthy diet may be linked with reduced disability and fewer MS symptoms. Such a diet would include fruits, vegetables, and whole grains.

I have never attributed any importance to people saying that diet cured them of MS. In fact, it’s nothing short of hogwash. But that’s not to say that diet cannot help, just that it is not a cure by itself.

There are a number of dietary plans for which claims are sometimes made, and about which strong views are held. These include the Swank and Overcoming MS diets. Supporters of Swank, for example, believe it can reduce the frequency of flare-ups and lessen the severity of symptoms.

However, the US’s National MS Society and the UK’s MS Society say there is not enough evidence to recommend any one diet.

The authors of the new study, led by Kathryn C. Fitzgerald, acknowledges that there is a lack of evidence on the potential influence that diet may have on MS symptoms.

Fitzgerald works in the Department of Neurology, Johns Hopkins School of Medicine in Baltimore, Maryland, USA. She says: “People with MS often ask if there is anything they can do to delay or avoid disability. Many people want to know if their diet can play a role, but there have been few studies investigating this.”

Severe disability 20% less likely

To examine the role that diet may play in MS, Fitzgerald’s team looked at questionnaires completed by 6,989 people with MS as part of the North American Research Committee registry.

The team found that people in the group with the most healthy diet were 20% less likely to have more severe physical disability than people in the group with the least healthy diet.

Fitzgerald adds: “While this study does not determine whether a healthy lifestyle reduces MS symptoms or whether having severe symptoms makes it harder for people to engage in a healthy lifestyle, it provides evidence for the link between the two.”

The authors acknowledged that the study has two limitations:

·         First, participants were mostly older white people who had been diagnosed with MS for an average of 20 years. So, although people with all types of MS were included, the findings might not apply to everyone with the disease.

·         Second, the study’s design does not provide an insight into whether healthy diets might influence MS symptoms in the future.

What can a diet do for someone with MS? In my opinion, about the same as it can do for someone without the disease; a balanced diet helps to achieve and maintain a healthy level of fitness. But it is not a cure and never can be; don’t let anyone tell you otherwise.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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.