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News and Opinions about MS, Health & Disability

Registry set up to compare approved MS therapies

I think it’s great that therapies approved as treatments for multiple sclerosis are to be compared for safety and effectiveness. The move is long overdue.

Corrona Multiple Sclerosis Registry, which is to carry out the work, has been set up as a result to an important collaboration. A meeting of minds of the US’s National Multiple Sclerosis Society (NMSS) and Corrona led to the launch of the new registry.

effectivenessThe Corrona company is based in Cambridge, Massachusetts, and conducts observational cohort studies. These offer analytic expertise for clinical data, patient-reported measures and others to compare effectiveness, post-market safety reporting and commercial applications.

USA’s Food and Drug Administration (FDA) approved the first MS disease modifying therapy (DMT) in 1993. Today there are many more.

The registry will collect and analyze outcomes associated with several MS therapies. It has already enrolled its first patient, but plans to recruit 5,000 people with MS.

Effectiveness and safety: Data collection lags behind

Founding president of the Medical Partnerships 4 MS, Daniel Kantor, said in a press release: “MS research in the US lags behind other fields in collecting reliable real-world data to compare the safety and effectiveness of these therapies.”

Corronna says the registry will collect data from patients and their treating neurologists through questionnaires. It will include physician assessments and patient-reported outcomes.

Executive vice president of research at NMSS, Bruce Bebo, said: “Identifying the optimal treatment strategy is critical for people with MS and their healthcare providers. The collaboration with Corrona on the MS registry addresses this challenge. It furthers our goal of ensuring that people with MS have information, tools and resources to live their best lives.”

“Corrona is honored to partner with the National MS Society and US neurologists to create a national MS registry that can help guide treatment decisions for patients based on real-word comparative effectiveness and safety analyses,” said Jeff Greenberg, Corrona’s chief scientific officer.

For more information about the Corrona MS Registry, including enrolment details, you can contact ms@corrona.org or call (508) 408-5398.

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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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MS therapy alemtuzumab is named a ‘rip-off’ drug, report

Pharmaceutical companies sell some MS disease modifying therapies (DMTs) at extortionate prices. Big pharma stands accused of setting prices to rip-off the public, and the UK’s National Health Service (NHS). Who’d have thought it? I am shocked (well, no, not really).

One such drug labelled a rip-off, and used to treat multiple sclerosis, is alemtuzumab. It goes by the brand name of Lemtrada.

rip-offA new report has revealed these facts in its findings. Titled Pills and profits – How drug companies make a killing out of public research, it was published by Global Justice Now.

According to MS-UK’s website:

Alemtuzumab was developed at Cambridge University and purchased by Sanofi Genzyme and was originally approved for the treatment of B-cell chronic Lymphocytic Leukaemia. Cambridge scientists discovered it could also be used to treat MS and it was utilised for this non-licensed purpose at a cost of around £2,500 per treatment course in 2012.

rip-offSanofi Genzyme withdrew the drug from the market and re-launched later as an MS medicine at a far higher price per dose. It now costs £56,000 per treatment course, which is a 2140% price increase.

Drugs used for the treatment of cancer, arthritis and MS are among a number of drugs that are costing the NHS billions each year despite a significant amount of money being used to fund the development of such medicines.

The UK government is the second largest funder country, after the US, for research and development (R&D) in diseases that predominantly affect poor countries. The UK government spent £2.3 billion on health R&D in 2015 alone. Globally, it is estimated that the public pays for two-thirds of all upfront drug R&D costs, with around a third of new medicines originating in public research institutions.

Rip-off of public money

The new report highlights the level of UK public money used to develop new drugs, with two out of five of the NHS’s most expensive drugs discovered using substantial public money. It also calls for greater transparency in drug pricing and on where taxpayer money is being spent, as well as a radical overhaul in the way R&D of new medicines are funded.

The pharmaceutical industry often claims that high prices are a direct result of high research and development costs. However, the process for setting drug prices remains unknown and is shrouded in secrecy.

Heidi Chow of Global Justice Now, one of the co-authors of the report said: “Big pharmaceutical companies are ripping us off by taking over drugs developed with substantial public money and selling the drugs back to the NHS at extortionate prices. This is nothing short of daylight robbery of British taxpayers by some of the most profitable corporations in the world. It’s about time politicians take a stand to ensure that drugs produced from publicly-funded research are affordable for the NHS.

“Across the world, 10 million people are dying needlessly because they can’t access vital medicines. The government must take action to ensure that UK-funded research benefits public health globally rather than lining corporate pockets.”

Strong words indeed but, I would say, undoubtedly justified.

I applaud the researchers and authors of the report, and Global Justice Now for publishing it. This despicable behaviour is nothing short of blatant profiteering. Let’s stop it.  NOW.

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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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U-turn over plans to delay treatment for people who are newly-diagnosed with MS

Multiple sclerosis campaigners, led by the MS Society, are celebrating a significant victory.

They opposed plans to delay access to disease modifying therapies (DMTs) for people newly diagnosed with MS in Northern Ireland. This is a UK area where certain powers, including responsibility for the National Health Service, are devolved from central government.

And, the decision-makers listened.

u-turn

U-turn is a cause to celebrate (Pic: MS Society).

In the face of mounting objections, including a petition, Belfast Health and Social Care Trust (BHSCT) has made a U-turn. It dropped its highly controversial plans.

An MS Society statement says the announcement (to drop the plans) is a victory for the MS community. It says thousands of people came together across the UK to oppose the plans.

It all started in August, when the BHSCT announced plans to delay access to DMTs as part of a range of cost-saving measures.

“The BHSCT holds the budget for the prescribing of all DMTs, so this would have led to delays in accessing DMTs for people across the country,” the MS Society explained.

Since then, 5190 members of the MS community signed the society’s petition asking the BHSCT to reconsider its position.

U-turn prompted by protests

The MS Society went to public meetings to raise concerns It held its own meeting with representatives from all political parties. And, it spoke in the media about how the plans would affect the MS community.

Also, the society submitted a written response to the BHSCT’s consultation on the proposals.

Although the action taken by the society is to be congratulated, and the U-turn is most welcome, the fight goes on. Many other services used by people with MS remain at risk.

For example, also in Northern Ireland, you have to wait too long to see a consultant neurologist. Meanwhile, across the UK, people with MS need to fight for the treatments, care, and support they need. That shouldn’t happen, it is ridiculous. It is plainly wrong. We need another U-turn here

We, people with MS, must stand up to fight for our health, our rights. And I commend the MS Society’s call to action. “It’s so important that, together, we continue to speak up for MS,” it says.

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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.

* * * * *

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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Call to use MS disease modifying therapies earlier

mriGreater use of MRI scanning provided basis for new advice.

Earlier provision of disease modifying therapies (DMTs) is now being advised for treatment of relapsing remitting multiple sclerosis.

This is part of a scientific consensus that changes the way treatment should be provided in the light of evidence that suggests that, rather than waiting to see whether more relapses occur, DMTs should be offered as close as possible to diagnosis, according to the MS Society in the UK

The change of approach is the result of the wider use of MRI scanning. This has provided evidence that when symptoms get better, the damage that MS causes often doesn’t stop. So even when someone with MS is not having a relapse, the disease may carry on attacking their body. This could lead to nerve damage that can’t be put right. Experts used to think that when a person with MS had a ‘relapse’ it meant symptoms appeared and/or quickly got worse and then went away or ‘remitted’. The evidence has changed what is understood about MS and how to treat it. Rather than waiting to see whether more relapses occur, DMTs should be offered as close as possible to diagnosis, before damage to the body has built up.

It is now known that early treatment improves long-term health and wellbeing by slowing down the build-up of irreversible damage and reducing the number of relapses people experience. However, the evidence doesn’t mean that starting treatment later will not have any benefits – it simply means ‘the earlier the better’.

The society says everyone with a relapsing form of MS should speak to their neurologist or MS professional about treatment options and make an active and informed choice about what is right for them.

For those who have a different form of MS, or aren’t sure what kind of MS they have, it’s still important to have an annual review with their neurologist although, in my experience, this is easier said than done. Anyone who doesn’t have a neurologist or MS specialist should visit their GP and request a referral.

The MS Society reached the new consensus with people affected by MS, neurologists, MS nurses, and the MS Trust. A meeting was held to consider the evidence about whether early treatment with DMTs improves long-term outcomes for people with MS. It was strongly agreed that the evidence confirms the importance of treating with DMTs as close to diagnosis as possible.

The recommendation follows the publication of new guidance from the Association of British Neurologists (ABN) and with support from Shift MS and MS Trust.

 

Time to Act – a consensus on early treatment

 

 

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