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News and Opinions about MS, Health & Disability

HSCT Plus Six Months: Daily Walks and a New MRI

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Is big pharma company profiteering at the expense of MS patients? Surely it cannot be true!

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Close similarities between Ocrevus (ocreluzimab), currently nearing approval as a treatment for MS, and Rituxan (rituximab) are causing criticism of drug manufacturer Genentech. It faces allegations of profiteering at the expense of MS patients.

The US patent for Rituximab, which has never been approved as an MS treatment, expired last year and Genentech needed to stop investment in it and, instead, put money into a ‘new’ medication. This turns out to be ocrelizumab, a drug that is humanized while rituximab was chimeric.

One of the voices raised in criticism belongs to Scott Dunaway, who has MS. He is furious and blames big pharma. In an email to me he said: “Do you realize, that rituximab and ocrelizumab are identical? Other than one is based on human protein and one is based on a mouse protein.

“Rituximab has the same effect on someone with primary progressive multiple sclerosis as ocrelizumab.

“One thing that’s not talked about very much, is rituximab may have fewer side effects than ocrelizumab. Now wouldn’t that be sad?  Unfortunately for any concerned, I fall in the category of one of the last bastions of chronically progressive diseases left, where there may be as many as 50 to a 100 thousand in the United States and Canada that could live for decades, albeit a hideous existence, worth billions once a FDA drug is approved.

“Unfortunately, this still earned me no urgent treatment. We all have to wait in line with the rest of the progressives until ocrelizumab is approved. Why is this? Why aren’t all primary progressive multiple sclerosis patients prescribed rituximab until ocrelizumab is FDA approved?

“I’m sure there is a very logical answer for this very illogical conundrum – “$”. I could never do their job. Guilt would haunt me constantly. Did it ever occur to you, or what I mean to say is, does it ever occur to Big Pharma that we may know several people taking rituximab for several different diseases, even off script. And yet I cannot have it because I have primary progressive multiple sclerosis?”

In fact, the drugs are not the same but they are very close cousins that appear to work in the same way.

What is strange is that, if the two share the same effectiveness, why on earth was rituximab not put forward as a multiple sclerosis treatment years before the patent ran out? I’d really hate for those suggesting that money was really the cause, to be right.

They couldn’t be……could they?

A response from Genentech, on this issue, would be welcomed.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

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From Russia with Test Results for HSCT

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Regular readers of this column will know that I am convinced about the efficacy, reliability, and safety of Hematopoietic Stem Cell Transplantation (HSCT) as a treatment for MS. In fact, a few weeks ago, you learned through this column that my decision was made; HSCT was for me.
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Hey, that’s me in my new wheelchair in the HSCT centre in Moscow, with Dr Fedorenko and assistant Anastasia.

Dates were agreed, flights were booked, special assistance was arranged, and coach travel from my home to the airport was organized.Knowing that there are other health conditions that might make the treatment impossible, or ill-advised, I spoke with Dr. Denis Fedorenko, head of HSCT therapy in Moscow, by phone and asked his opinion. He asked me to travel to Russia so he could oversee four days of tests before making a final assessment.

But that was not enough. I had to obtain a visa from the Russian Embassy before traveling; and as a British citizen living in Spain, that was no easy matter. But, eventually, it was granted and I was set to travel.

The plane touched down at Moscow’s Sheremetyevo International Airport close to 5.15 a.m. on Monday of last week, where a hospital car and driver were waiting. Learning that this was my first time in Russia, he whisked me on a diversion into the city itself, showing me Red Square, the Kremlin, and the Bolshoi Ballet. “And that,” he said, indicating a nondescript office block, “used to be the headquarters of the KGB.”

I didn’t ask about its current use.

Pre-HSCT tests

That day was the start of the most exhaustive and exhausting series of medical checks in my entire life. They included MRI scans of my brain and spine, as well as my chest and abdomen, and ultrasound scans of the veins in my legs.

Decision day was Thursday, when Dr. Fedorenko came to my room with all the results. The key findings were:

  • I have progressive MS, but all lesions in both my brain and spine are inactive
  • My prognosis, according to Dr. Fedorenko, is that the MS is unlikely to progress and, if it does, it will only do so slowly
  • My heart (I already knew had an irregular heartbeat, or atrial fibrillation) is totally OK on one side and, overall, pumps 10 percent less blood than it should
  • My lungs operate at 90 percent capacity
  • My vitamin D level is below the usual scale

Based on the fact that my MS is inactive and that chemotherapy could pose a threat to my heart, Dr. Fedorenko took the totally understandable decision that HSCT is not for me.

“In your case, with the MS not progressing, the benefits of the treatment do not outweigh the risks to your heart,” he said.

In short, as MS progression is currently stalled with inactive lesions, for which I am grateful and in a happy place, I don’t need HSCT.

This article, written by me, first appeared on Multiple Sclerosis New Today.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

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New treatments may be available faster

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People living in the UK could get faster access, through the country’s National Health Service (NHS), to what are described as ‘innovative’ new treatments following recommendations set out this week in the government’s Accelerated Access Review report, led by an independent chairman Sir Hugh Taylor.. This could include treatments for MS.

The move does not include existing medications, but is restricted to new, potential treatments that aren’t available yet but have shown promising results.

It is hoped that this could include treatments for multiple sclerosis but, in truth, no-one seems to know yet

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Accelerated Access Review chairman Sir Hugh Taylor.

Under the new proposals, everyday people in patient representative groups will help choose which drugs should be included. They’ll work alongside health bodies and drug companies in a new partnership.

To choose treatments, together these groups will look at a range of criteria. This includes deciding which drugs are ‘transformative’ – meaning they have the potential to make the biggest impact.

Chosen treatments would then get greater support to make sure they are available sooner through the NHS.

It’s not yet clear whether or not future MS treatments will be chosen. It seems that is likely to depend on two things:

  • whether there are future MS treatments in the pipeline that could make a big impact on people’s health;
  • the final scope of any changes introduced after the Government has considered these proposals.

These proposals are groundbreaking for both the NHS and patients alike. At the moment, to get new NHS treatments approved involves research, licensing and analysis of cost and clinical effectiveness than can take several years.

The UK’s MS Society was actively involved in the government’s Accelerated Access Review, and mate its contribution to the consultation earlier this year.

It highlighted the important contribution that people with MS make to every stage of the research it funds and welcomes the fact that the final report recommending that people using NHS services should be involved in making decisions every step of the way.

The society’s Interim Assistant Director of Research Dr Emma Gray said: “We are pleased to see the integral part that people being treated in the NHS will play in these proposals. And we welcome a new pathway to speed up the access to transformative treatments.

“It’s currently unclear whether future MS treatments will benefit from this proposed pathway, but we will be following the progress of these recommendations.”d is a keen advocate on mobility and accessibility issues.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

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Wheelchairs: Love to Have, Hate to Need

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Wheelchairs, scooters and I have a love/hate relationship. Not hate the actual chair, just the need to use one, hate the fact that my mobility is so badly affected by multiple sclerosis that walking, with a walking aid, any further than 10 to 15 yards is impossible without sitting down.

From that, you will probably realise the reason that various ways of getting around have played a part in my life in the last few years and will continue doing so.

Let’s start with scooters. There have been a couple. I remember using one for the first time, the feeling of independence was incredible. The first one bought from a mobility aids store was supposedly a mini sized model. It was certainly the smallest one on display but it was heavy and was difficult to lift into a car.

I next bought a smaller model that easily came apart to pack into a car but its batteries just weren’t up to the job, so that one was a second failure.

Next it was time to give wheelchairs a chance. I’ve had two manual ‘self-propelled’ chairs but as MS means I have very little strength on my left side, if trying to propel myself, the chair goes in left handed circles; forget a straight line. That meant my wife Lisa had to push me and, while that never bothered her, it meant that my independence was curtailed.

j-silver10jMy doctor back in the UK recommended that I have a motorized chair ad, in due course, it was available. It was supposedly foldable but to achieve that two heavy and bulky batteries had to be disconnected and removed and lots more. In fact, to collapse that chair took about 40 minutes with a similar time to put it together again. Simply impossible without meeting the expense of getting a vehicle especially adapted to carry it without collapsing the chair.

More recently, though, I have bought one of the lightweight, foldable wheelchairs being widely advertised online by Better Products for Disabled People. Here, pictured above, is the wheelchair I bought,

Finally, I have found the perfect match for my needs. It folds and unfolds in matters of seconds. It is compact enough when folded to go in the back of our car along with the weekly shopping and is light enough, just, for my wife to lift into and out of the car.

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Hey, that’s me in my new wheelchair in the HSCT centre in Moscow, with Dr Fedorenko and assistant Anastasia.

It has two sleek batteries that slide into the chair frame and is brilliant in use. It is easy to control, has the tightest of turning circles, in fact it can turn around in its own length, and can travel so far without recharging.

A couple of weeks ago, I took the chair with me to Moscow. As I was travelling alone, it made my life easy. Whether it was negotiating city streets, a bus station, hours in an airport waiting for the time for my flight, or travelling through the Moscow hospital’s maze of corridors, the new wheelchair coped and, eventually getting home, it still had more than half its charge. And no, I didn’t recharge it while away from home.

All in all, in my opinion, the BPDP wheelchair is the very best for my needs.

To see if it would suit you, just contact BPDP through its website or talk to Shaun Atkinson on Facebook.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

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Hormones and Diet Help Relieve Woman’s MS-Related Fatigue

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A woman who says her life was made miserable by fatigue caused by multiple sclerosis, claims she is on the road to recovery because she has taken control of her body and is using a combination of hormones and diet.

Instead of relying on conventional treatment, she is praising hormone treatment and a new diet for making life worth living again. “I was listening to doctors, but not now,” she told me.

Lisa, whose last name I am withholding, lives in a town in upstate New York. She was a nurse before she was forced to retire because of MS and received a number of different therapies before striking out on her own.

“I was given Tysabri, which is very strong and has a risk of progressive multifocal leukoencephalopathy (PML). I have also taken Avonex (interferon beta-1a). In fact, I ‘ve been on several disease-modifying therapies over the years. I consider I have paid my dues in that arena,” she said.

hormones“It was my experience as a nurse that led me to notice that as women with the disease became pregnant, their symptoms lessened as their hormones increased naturally. Pregnant women don’t have relapses,” she said.

“It seemed too much of a coincidence, so I thought it had to be tried. I had estriol, an estrogen, as a lotion that is absorbed through skin, while progesterone is tablet,” she said.

Taking part in life

But that’s not all, diet also has been involved.

“I have started eating an anti-inflammatory diet, no red meat, dairy products, or gluten — and all that seems to be working, too,” said Lisa.

So what did it used to be like? Lisa explained that she used to have to lie on the couch for 11 hours each day. “I had to lie virtually flat because the fatigue was so bad, but now I am sitting up and taking part in life,” she told me.

I asked Lisa about the symptoms she had experienced before her trying hormones and diet. “The fatigue was phenomenal. Just rolling over was a major exertion. Walking to the bathroom resulted in extreme fatigue, and I used to literally crawl out of the shower,” she said.

Now that Lisa is so much better, she has some strong words for MS researchers.

“Not enough attention is being given to this form of treatment; it just goes to big pharma to make more money,” she said.

But she had some conciliatory words for those who do feel existing medicines help them. “If medicine works for you great,” said Lisa, “but they’re not for everyone.”

This article, written by me, first appeared in Multiple Sclerosis News Today.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

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One quarter of MSers suffer employer discrimination

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A damning report looking at workplace discrimination states that 24% of people with MS say their employer has treated them badly as a result of their condition, while 20% say their colleagues have.

And, of the people who say they have faced mistreatment from their employer, a staggering 91% say their employers knew they had MS. Similarly, 85% who faced mistreatment from their work colleagues say their colleagues were aware of their MS.

discriminationThe report, published yesterday, is from the UK’s Multiple Sclerosis Society’s survey in which, it says, people shared many distressing experiences of mistreatment. These included facing offensive and humiliating comments, feeling bullied and being accused of looking too well to have an illness or disability.

According to the MS Society’s website, people also say they have lost out on promotions, been forced out of work unfairly and had requests for reasonable working adjustments denied.

It continues:

Andy had been working for a small business for five years when he found out he had MS. The relapse that led to his diagnosis left him with severe mobility and cognitive problems and he was signed off work for several months. At the time, his employer was fantastic and reassured him that his job was secure.

When he returned to work, the atmosphere had completely changed: “They offered me a new contract with fewer hours, no sick pay and on a three-month rolling basis. There was no way I could accept it. I was then asked to attend an occupational health assessment. But I found the assessor had no understanding of MS and hadn’t even seen my medical notes. I was then fired on the grounds of ill health.

“I was devastated. I felt like the decision had been made before the assessment – they thought I couldn’t do my job properly because of my diagnosis. I knew this was wrong, so I took legal action.

“It was a hard battle, but after three years I won my case for unfair dismissal and disability discrimination. Since then, I’ve successfully launched my own digital marketing consultancy.”

MS Society chief executive Michelle Mitchell said: “Our survey clearly shows the need for a shift in attitudes to better support people with long-term conditions and disabilities to stay in work. It’s disturbing to hear so many accounts of people being bullied and mistreated at work because of their condition, especially as people with MS are protected against discrimination under equality law.

“We know that some people with MS absolutely won’t be able to work because of their condition, but for those who can, simple adjustments and supportive employers can make a huge difference. We want to see more positive workplace cultures that value the important contributions that people with MS can make.”

Discrimination of any form is both illegal and ugly. Whether it is based on disability, age, race, religion, gender or any other cause, it has no place in reasonable society and needs stamping out. The laws are there to protect us, Like Andy, we need to use them.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

 

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Charity vilified as it lends manager to government

Unbelievable, grossly inconsiderate and just plain barmy.

Why UK mental health charity Mind would agree to the one-year secondment of one of its senior managers to the government’s tainted Department of Work and Pensions is as incomprehensible as it is stupid.

It has been reported that the charity’s policy and campaigns manager Tom Pollard will be working with DWP on secondment as a senior policy adviser.

And, as a slap in the face for all people with disabilities, including those with multiple sclerosis, he will be working on areas such as the government’s upcoming green paper on employment support for disabled people, the Work Capability Assessment (WCA) and support in jobcentres.

The news has been met with derision and fury along with calls for MIND chief executive Paul Farmer to resign.

Disability activists say the charity has betrayed al people with disabilities by failing to speak out strongly enough on behalf of benefit claimants who have been harmed, or even died, as a result of DWP’s much-criticised WCA “fitness for work” test.

The Mental Health Resistance Network (MHRN) is also angry about Mind’s decision to quit a long-running court case to force government ministers to make the WCA safer. Denise McKenna, co-founder of MHRN, said Mind was “a disgrace”, and had only pulled out of involvement with the court case because it wanted to secure back-to-work contracts from DWP.

She said: “MHRN won’t be leaving things at this, we want change at the very top of national Mind and will be demanding Farmer’s resignation. He was rewarded with a CBE for colluding with the Tories.”

According to the Disability News Service, Ms McKenna wrote to Farmer after hearing of Pollard’s secondment, telling him: “On looking at your strategy for the next five years we see that there is no mention of the devastating welfare reforms that are destroying the lives of many people with mental health problems.

“Are we to take it that you are blissfully unaware of the misery and devastation being visited upon people who live with mental distress?”

She added: “MHRN cannot accept the role that Mind is playing in helping the government push through policies that are deeply damaging to the people you claim to represent.

“We do not recognise you as an ally of people who live with mental health problems and would like to hear what plans you have to redeem yourself in our eyes.”

Vicki Nash, head of policy and campaigns for Mind, said Pollard would be “advising on the most appropriate and effective ways to support and engage with people with mental health problems across a range of policy issues”, and that his “longstanding work on these issues gives him the expertise to advise the DWP”.

She said: “We have long been calling for greater mental health expertise within the department.

“This is a great opportunity to help ensure that these policies are as supportive and effective as possible for people with mental health problems.”

She said that Mind was “politically-neutral” and claimed that it had “continued to push the DWP to reform the WCA through meetings with MPs and civil servants” and through campaign and media work.”

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

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MS medications: Improve access

A call is being made for a change to improve access to medications to treat multiple sclerosis.

American National MS Society president and CEO Cyndi Zagieboylo said: “It is time for change. People with chronic illnesses need to have confidence that they’ll be able to get the life-changing medication they need.”

The Society’s latest initiative aims to make the availability of MS medications affordable, simple and transparent and spotlights Abigail Bostwick, 36, who was diagnosed with multiple sclerosis in 2013.

She says she never thought it would hit her as hard as it has — not physically — but financially but added: “Our savings quickly drained. We’ve sold a lot of our things. We live paycheck to paycheck.”

accessLike many people living with MS, Bostwick has struggled to afford her MS medications and navigate the complicated system of prescription medication insurance coverage, says the society.

In a report on its website, it continues:

People with MS report high and rapidly escalating medication prices, increasing out-of-pocket costs, confusing and inconsistent formularies (lists of medications covered by an insurance plan), and complex approval processes that stand in the way of getting the treatments they need.  These challenges can cause delays in starting a medication or changing medications when a treatment is no longer working.

Delays may result in new MS activity (risking disease progression without recovery) and cause even more stress and anxiety about the future for people already living with the complex challenges and unpredictability of MS.

In 2004, the average annual cost for MS medications was $16,000; today it is $78,000 — that’s an increase of nearly 400 percent!

The society’s “Make MS Medications Accessible” initiative is calling on leadership from everyone involved — pharmaceutical companies, insurance providers, pharmacy benefit managers, specialty pharmacies, healthcare providers, policy makers, people with MS and others — to work together to focus on getting people with MS the medications they need to live their best lives.

“Medications can only change lives if people can access them. Medications — and the process for getting them — must be affordable, simple and transparent. No single stakeholder has all the solutions; we can only find the solutions together,” said Zagieboylo.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

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New drugs to face affordability test

Proposed changes to the UK’s drug approval process should be the subject of an honest debate according the country’s Multiple Sclerosis Society.

The changes will mean the National Health Service (NHS) in England will assess how much it can afford to pay for new drugs.

Under the plan, new drugs that are expected to cost the NHS more than £20 million a year would be subject to a ‘budget impact test’.

If drugs are considered to be cost effective by the National Institute for Health and Care Excellence (NICE)  but expensive for NHS England’s budget, they could face delays or restrictions on being introduced. To me, this seems to turning the clock back on health care by several years.

Pic: MS Society.

Pic: MS Society.

Based on what is so far known about the plans now, the MS Society believe it’s unlikely that existing MS treatments available on the NHS would be affected by these changes. However, it wants to make sure that any new MS treatments aren’t rationed or restricted due to their cost.

On the society’s website, it says that an affordability test would be a big change in the way new treatments are assessed. It continues: “Currently, new drugs are tested for value for money. This means the potential benefits of a new drug are considered in relation to its cost. How much the NHS can afford to pay for the drug is not tested.”

The society’s assistant director of external affairs Ian Fannon at the said: “People with MS need access to effective treatments as quickly as possible – this is essential to managing the condition, slowing progression and improving quality of life. Not only does this prevent avoidable harm, it reduces cost for the NHS in the long term.

“We do understand the NHS is under financial pressure but the case for increasing investment in the NHS grows stronger by the day. Ever tightening rationing could have serious consequences for those who could benefit from new treatments. We need an honest debate about this.

“Equally, this poses a challenge to the pharmaceutical industry to ensure the price they offer the NHS for their drugs is fair and reasonable.

“We need to examine the details of these proposals more closely and will be responding in full to the consultation.”

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

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