National Multiple Sclerosis Society Invests Over $21 Million to Fund New MS Research

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The National Multiple Sclerosis Society has dedicated over $21 million to fund 78 new multiple sclerosis (MS) research studies as part of a broad research plan designed to address MS, re-establish  lost functioning caused by the disease in patients, and ultimately end the disease forever.

This recent round of investment into MS research is the newest in the Society’s ongoing efforts to continue to advance toward improved treatments and an eventual cure for MS — part of a planned asset allocation of over $53 million in 2015 alone to sponsor more than 380 new and ongoing MS investigations worldwide. The National Multiple Sclerosis Society is committed to pursuing encouraging research with a focus on areas such as progressive MS, repair of the nervous system, gene/environmental MS risk factors, and lifestyle and well-being.

“These new grants are part of a comprehensive strategy to accelerate research that will propel the knowledge to end MS and identify everyday solutions that change the lives of people with MS,” said Cynthia Zagieboylo, president and CEO of the National MS Society in a news release.

One of the novel pioneering research projects is a research study being conducted at Baylor College of Medicine that is investigating a protein thought to be involved in the repair of myelin and substitution of lost nerve cells — two actions that may help improve progressive MS’ disease course. Another project is underway at University of Glasgow, investigating whether adult stem cells from the nose can be a potential target for the repair of nervous system tissue. Finally, another National MS Society-funded investigation at Harvard’s Brigham and Women’s Hospital is examining if certain brain circuits are involved in fatigue, a common and disabling MS symptom. In addition, three new commercial collaborations are driving the development of therapies to target progressive MS.

To identify the best investigation with the highest therapeutic potential, the National MS Society consults with over 130 world leading researchers who offer their time to assess hundreds of research proposals every year. This demanding assessment process ensures that the MS Society funding fuels investigations that deliver results in the shortest amount of time possible.

It is important to note that there are FDA-approved treatments that can be effective in the disease course of patients with the more common MS types; however, none of these therapies have been found to stop or reverse disease progression and to restore normal function.This new funding from the National MS Society hopes to contribute to new solutions for MS patients with unmet medical needs in the future.

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  1. D. Condotta says:

    I think that myelin repair/replacement should be a primary focus. Is it not the breakdown and scaring of myelin that is the problem that causes all of OUR problems?

  2. Lori Batchelor says:

    “It is important to note that there are FDA-approved treatments that can be effective in the disease course of patients with the more common MS types; however, none of these therapies have been found to stop or reverse disease progression and to restore normal function.”–nice to see this admitted in writing! The drugs don’t work–just keep the MS Societies in business, ’cause that’s what it is, BUSINESS!

  3. Michelle says:

    Why hasn’t the NMSS backed the only FDA approved stem cell study being done at the Tisch MS Research Center in NYC? They have been turned down numerous times after submitting everything required. Maybe incentives there is no money to be made by the drug companies.

    • Shirley says:

      Not just loss of money but, how would these CEOs and neurologists from these MS a Societies across the world keep their extremely well paid, cushy jobs? To have a job and waste hundreds of millions based on an unproven “autoimmune theory”. They obviously know exactly what they are doing in ignoring anything that just may help the patient. If it works … sweep it under that proverbial carpet.

    • Edward Krawiecki says:

      Agreed. I learned early on in having this disease that only treatments-not a cure-make money. Sad, but true. However, I see now that stem cell therapy cannot be ignored. It’s getting tremendous attention and the will and drive of those who need it is starting to outweigh the greed of pharmaceuticals.

    • Beth Broun says:

      From Wheel Chair Kamikaze blog:
      National MS Society Decision Makers Take Big Bucks from Big Pharma

      As I detailed in two recent Wheelchair Kamikaze essays, the American National Multiple Sclerosis Society has repeatedly rejected grant proposals to help fund the only FDA approved human MS stem cell trial currently being conducted in the US, which is now underway at the Tisch Multiple Sclerosis Research Center of New York (click here and here). These two previous posts resulted in a flood of email and phone calls to the powers that be at the NMSS (thank you, dear readers), who responded by saying that the Society makes decisions regarding which research projects to fund based on the recommendations of committees populated by a wide range of internationally renowned experts. This got me thinking, just who are these experts and what elements might go into their decision-making process? Inspired by a comment left by WK reader Jennifer Ziegler, I decided to do some digging.

      One of the provisions of the ever controversial Affordable Care Act (otherwise known as Obamacare) is the creation of a website that allows the general public to search a database of pharmaceutical company payments to physicians, called the Open Payments Data website (click here). For those who may be blissfully unaware – and as outrageous as it may seem to those who are aware – it’s common practice in this country for pharmaceutical companies to line the pockets of the physicians who prescribe their products by way of cash payments given out largely as consulting and speaking fees. Mind you, for the most part these payments are perfectly legal, but it does make one wonder just how objective even the most well-meaning physician can be when making decisions that involve choosing between the products of the drug manufacturers whose money they accept versus those of their benefactor’s competitors. This ethical quagmire is often described quite politely as a potential “conflict of interest”.

      The NMSS helpfully provides lists of the “Scientific Peer Reviewers” who advise the Society on decisions regarding which research projects are worthy of support (click here). Plugging the names of these peer reviewers into the Open Payments Data website reveals what I think is some enlightening information. First, though, please let me illustrate just how much money the pharmaceutical companies that sell MS drugs pay to physicians in efforts to promote their wares. On a drug by drug basis, the following list details the amount of money that made its way from pharmaceutical company coffers into the pockets of MS doctors in the five months spanning August-December 2013. Naturally, the list excludes drugs that have been approved since 2013. I gleaned this info from the Pro Publica website (click here), which provides detailed numbers derived from the database compiled by Open Payments Data:

      · Aubagio $3.4M

      · Avonex $775.8K

      · Betaseron $510.8K

      · Copaxone $4M

      · Gilenya $682.2K

      · Rebif $856.6K

      · Tecfidera $2.2M

      · Tysabri $1.4M

      · TOTAL $13,825,400

      Your eyes are not deceiving you, the pharmaceutical companies paid MS doctors who prescribe their drugs $13,825,400 during the last five months of 2013 alone. Again, this is all publicly disclosed data, and such payments are perfectly legal. Call me crazy, but I can think of only one non-expletive that can adequately describe that number: Yikes!

      Now, moving on to the NMSS and its peer reviewers; the National Multiple Sclerosis Society utilizes nine standing committees to review research grant proposals for MS research. As previously noted these committees are comprised not only of physicians, but also PhD researchers as well as lay experts in various related fields. It should be noted that the Open Payments Data website contains only information on pharmaceutical payments to licensed physicians, so while the PhD researchers who sit on these committees might occasionally benefit from pharmaceutical company largesse, such payments wouldn’t show up in the database. It should also be emphasized that the physicians on the following list are not evil people; far from it, they are simply professionals legally taking part in an insanely dysfunctional medical system. I’m sure that those who actively treat patients care deeply about those patients. I’ve even had the occasion to meet one or two of these doctors, who I would without hesitation describe as quite brilliant. Still, the pernicious influence of pharmaceutical company money can’t be discounted, even if it works only on a subconscious level.

      The two committees I chose to investigate are those that include licensed MDs and which seemed most likely to play a role in making decisions on human stem cell trials. Here then, a list of MD peer reviewers who sit on NMSS advisory committees who accepted pharmaceutical payments from August through December 2013, and the amount of money they received. These totals exclude any funds paid for medical research efforts:

      MDs On The NMSS “Research Programs Advisory Committee” Who Received Pharma Money

      · Dr. Bruce Cohen, Northwestern University Medical School – $224.87

      · Dr. Anne Cross, Washington University – $4311.28

      · Dr. Stephen Hauser, UCSF – $4184.86

      · Dr. Mary Hughes, Neuroscience Associates – $13.62

      · Dr. Aaron Miller, Mount Sinai School of Medicine – $26,855.11

      · Dr. Michael Racke, Ohio State University Medical Center – $5733.86

      MDs on the NMSS “Clinical and Translational Research Committee” Who Received Pharma Money

      · Dr. Laura Balcer, University of Pennsylvania – $2281.36

      · Dr. Bruce Cree, UCSF – $74,965.41

      · Dr. Philip Dejager, Brigham and Woman’s Hospital – $15,294.97

      · Dr. Edward Fox, MS Clinic of Central Texas – $76,760.44

      · Dr. Omar Khan, Wayne State University – $112,964.52

      · Dr. Andrew Pachner, UMDNH-New Jersey Medical School – $29,995.44

      Yes, in the mere five months covered by the records of the Open Payments database one of the NMSS research committee physicians received over $112,000 from pharmaceutical companies, two received over $74,000 each, and two more received over $25,000 each. When considering these numbers, ask yourself whether you would trust the recommendations of a film critic who was found to be receiving generous payments from some of the movie studios which produced the films he was reviewing? Would you allow that critic to decide which scripts should be greenlighted and made into movies if you knew that some of those scripts might in some way damage the profit-making abilities of the studios from which he was receiving payments? Me neither.

      I’ve often railed that the NMSS should immediately stop accepting funding in any form from the pharmaceutical companies, if only to avoid even the slightest hint that those funds might influence the Society’s actions. I’m confident the goodwill generated by the Society taking such a public stand would far outweigh any financial hit they might incur, and in fact would be priceless. After looking into the pharmaceutical monies received by physicians who serve with the NMSS in research decision-making capacities, I find myself aghast at my discoveries. Even if the doctors involved are nothing but well-intentioned, as I’m sure they are, I would think it impossible that the tens or even hundreds of thousands of dollars they receive from pharmaceutical companies would have no influence on their decision-making process, perhaps even only on a subconscious level. If these payments didn’t result in tangible benefits for the pharmaceutical companies making them, they wouldn’t be made. Large corporations are not in the habit of handing out millions of dollars a year for no good reason. This may be good business, but it makes for bad medicine.

      I urge the NMSS to immediately institute a policy forbidding physicians who sit on any of their decision-making committees from accepting pharmaceutical monies for any reason. The confluence of the interests of for-profit corporations with the clinical practice of medicine and medical research cannot be anything but corrosive. These practices will only stop when we as patients and those who love us rise up and demand action. It’s horrendous enough to be stricken with a dreadfully heinous disease intent on robbing those it attacks of their very humanity; to find oneself simultaneously caught in the misguided, tangled mess that is the modern medical industrial complex can crush the soul. It’s time for those of us stricken with MS to make our voices heard, to make a stand and demand that the largest MS advocacy organization in the world take the initially painful but ultimately crucial steps towards living up to their mandate; to not preserve the status quo but instead eradicate once and for all the fetid scourge of multiple sclerosis, a mission I fear impossible when done in concert with corporate entities whose own legal mandate is to turn illness into industry.

      The contact number for the National Multiple Sclerosis Society is 800-344-4867. A list of the NMSS senior leadership team, including email links, can be found by (clicking here). I would ask that all opinions expressed or inquiries made be done so in as civil a manner as possible, making pains to avoid personal attacks. The goal is not to antagonize, but to foment change that would benefit both the National Multiple Sclerosis Society and the patients it is meant to serve.

      I leave you with the following brilliant piece of video from the HBO TV program Last Week Tonight, featuring John Oliver. This incisive and hilarious segment illustrates better than I ever could just how insane is the current state of Big Pharma/physician relationships. Please, please watch, learn, and enjoy…

      Posted at 11:39 PM
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      Labels: big Pharma, Big Pharma money, medical research, money, MS, MS activism, MS advocacy, multiple sclerosis, National Multiple Sclerosis Society, NMSS

      • Shirley says:

        Great piece written by ” Wheel Chair Kamikazie”. As are all his blogs. But, the MS organizations are under Big Pharmas thumb. I certainly would not be as kind writing this blog. I just hope many can read between his lines.
        Why do you think they ignore ground breaking treatments? Wake up people … There is no money in a cure or even relief. Keeping MS victims medicated is their only way to keep their jobs and their QoL. Certainly not ours. Greed and not giving a crap is how they roll.

  4. Terri says:

    How about looking at funding the only FDA approved stem cell trial in the US (why Glasgow??) by the Tisch center in NYC? Maybe there’s no money to be made in a cure?? I seriously question the NMSS claim to want to find a cure.
    Who cares what brain circuits are involved in fatigue?? Ask any MS’er what the most important thing is to them. It’s certainly NOT what causes fatique. Just fix it!!!

  5. Arthur says:

    I’m not sure how many of you may have noticed the publication of an article in 2010 about a study at Lund University in Sweden, detailing the experimental use of a number of gut microbiomes that appeared to reverse EAE in mice.

    As it happens, the article is freely available;

    I had a surprising recent experience in which a friend’s wife had suffered a gut disorder that was a bit of a nightmare for her. For personal reasons she was not inclined to discuss it with a physician. It occurred to me to give her a powerful probiotic called “UltraProbio” to try. Her husband thought she wouldn’t take it, but she surprised him by doing so, and she was very surprised because in a few days… it worked, ending a lengthy problem for her, and turning her into a walking advertisement for such an approach.

    Sooooo, when I read about the Lund University study, I wondered, since probiotics are an over-the-counter item, whether anyone had thought to offer a “probiotic” that contained the three bacteria strains mentioned in the Lund research. What could be the harm of trying? Probably none, but no one seems interested, and three strains are described in the research report as follows;

    “After a primary screening, three Lactobacillus strains, L. paracasei DSM 13434, L. plantarum DSM 15312 and DSM 15313 that reduced inflammation in CNS and autoreactive T cell responses were chosen”. Sounds simple, right? But when I went out looking for the three compounds, there was no record of them, except in the research article. That naming system, ending in “DSM —– ” did not tally with the bacterial strains listed on any marketed “probiotics”. What gives? I have not a clue, since this is not my field of study, but in the five years since the Lund University study, there seems to have been surprisingly little further investigation of the approach. Even though, there have been repeated suggestions over the last decades that some environmental trigger could help explain MS.

    But of course, how could a pharmaceutical company make money off of selling a combination of gut bacteria? How could they patent it and turn it into a “maintenance medication”? Very, very problematic, and Big Pharma is a huge industry these days. One that is focused on expensive “maintenance medications”, thanks very much. They don’t really want such a simple solution to MS, if it can be found, to become known.

    So my question is, is anyone reading this able to figure out what the heck these three bacterial strains are? And is there any probiotic company that would be willing to market such capsules?

    Just asking…

    • Patricia says:

      It is really a disgrace how the real needs of people with MS are not being met. Especially the people who have reached the progressive phase. I have problems with my gut but does the so called “MS CENTER” have a GI physician who specializes in people with MS? No. They don’t even draw blood at my ms center. I have to go somewhere else. Same if u need PT, OT, ophthalmologist, psychological help, social work. We all have special needs the ones of us that are in the progressive stage. How do I get this help if I’m not poor enough but do struggle to pay my bills but can’t afford to hire someone who could help at home? As for the MS society like I read in a prior post they are a business in my opinion. I have found they don’t do very much. I tried to find a support meeting, there are none close by & I do not live in a rural area. Any meeting that I have attended? They are not run by a nurse or doctor or psychologist but by a person who has MS. All of the money made by the pharmaceutical companies? I don’t know where it goes certainly not to the very people who are making this money for them by taking these medications putting themselves at risk. The center I go to wanted me to start gilenya when I first went to them. They said I’d have to stay there for 6 hours to be monitored because it could cause a serious drop in heart rate. Where would they do this monitoring of me? Why in the waiting room of course. That’s where you would monitor someone on a new drug that could have a serious bad heart reaction? They said someone would come out to waiting room & take my blood pressure & heart rate every hour! No thank you I said. A couple of months later I read someone had a heart attack & died when they went home after taking this medication at another ms center. Now I believe patients have to be on a heart monitor when first taking the drug for the first 6 hours. They didn’t know they should have done this in the first place? Of course they had to know especially the doctors prescribing. Why didn’t they? My guess is $$$.

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