National MS Society FAIL: UPDATE – The NMSS Responds Re-Post from the Wheelchair Kamikaze

National MS Society FAIL: UPDATE – The NMSS Responds

Posted: 10 Feb 2015 07:10 AM PST

First, I’d like to thank all who helped contribute to the online dialogue (some might even call it a brouhaha) spurred by my last post on this blog (click here), which detailed the American National Multiple Sclerosis Society’s repeated refusals to fund the only current ongoing FDA approved stem cell trial being done on MS patients in the nation, at The Tisch Multiple Sclerosis Research Center of New York. Your response has been a personal inspiration to me, and your comments and sharing of the article on social media have definitely been noticed by the powers that be.

Several readers have forwarded me statements they received from the NMSS in regards to phone calls or emails they sent to the Society in response to that Wheelchair Kamikaze post. The body of each example of the Society’s feedback includes identical text, apparently written by the Society’s communications department. Nothing wrong with that, per se, as any large organization needs to fashion a coordinated response to any issue of concern, but I do feel it necessary to make some points about the reply sent out by the NMSS. Here’s the heart of the text sent by the Society to those who inquired about the organization’s repeated lack of funding for the Tisch Center’s ongoing stem cell research efforts:

“Regarding stem cell research, the Society is currently funding 15 research projects exploring various types of stem cells, including cells derived from bone marrow, fat and skin.  We have supported 70 stem cell studies over the past 10 years.  We have also convened international meetings on the potential of stem cells to drive new, effective MS treatments.

The Society’s research funding decisions are determined with advice from internationally renowned scientific experts who review the more than 500 research proposals received each year.  These volunteers bring a broad range of knowledge in different MS specialties, including stem cell research and clinical trials expertise. They help us determine each proposal’s scientific merit and relevance to MS, assess the originality of the proposed project, and evaluate the experience and scientific track record of the applicants. 

The decision to not fund the Tisch MS Center stem cell clinical trial was based on the advice of a review committee comprised of experts with experience in stem cell research and clinical trials as well as perspective from individuals living with MS.  The lead investigator, Dr. Saud Sadiq, received written feedback regarding the scientific evaluation of his proposal and was invited to reapply for funding to address the specific concerns. We are pleased to receive proposals from Dr. Sadiq and to work with him. In fact, the Society has collaborated with his research team on an innovative pilot project to understand one of the biological pathways in MS. 

There is exciting progress being made through innovative research related to the potential of many types of stem cells for both slowing MS disease activity and for repairing damage to the nervous system. With the urgent need for more effective treatment for MS, especially progressive forms of the disease, we believe that the potential of all types of cell therapies must be explored.  

Additional information about Society funded stem cell studies and stem cells research underway internationally can be found on our website http://www.nationalmssociety.org/Research/Research-We-Fund/Restoring-What-s-Been-Lost/Repairing-Damaged-Tissues/Stem-Cells-in-MS

Although my own professional expertise on any of the matters outlined above is infinitesimally small compared to that of the internationally renowned scientific experts who decide which research efforts the NMSS will fund, I’ll take the liberty of commenting from my position of expertise as a patient being forced to slowly watch himself disappear courtesy a horrendous brain and body eating disease. I’ve also been a patient at the MS clinic that works hand-in-hand with the Tisch Center since 2004, and being the pain in the ass that I am I’ve become quite familiar to and with many of the doctors and researchers involved.

I’ll start my comments on the statement put out by the NMSS with a short, general critique of the Society : Too Much Pharma!

Now, I know that this criticism may sound simplistic, hyperbolic, and even a bit trite at this point, but the influence of Big Pharma on all aspects of medical research has been terribly corrosive, and not because the pharmaceutical companies are staffed by evil ogres intent on hiding cures from a nettlesome population of sick people. No, I honestly believe that the vast majority of pharmaceutical company employees are good people doing their jobs to the best of their abilities, and therein lies the crux of the problem.

The job of pharmaceutical company executives, who helm what are almost all publicly traded enterprises, is to make as much money as possible to keep their companies’ stock prices on an ever increasing upward trajectory. This creates a confounding conflict of interest; treating chronic diseases in perpetuity with hyper expensive drugs has become a very successful business model; curing them, on the other hand, kills that business model. Combine this dynamic with the fact that we’ve handed almost all of our mid and late stage medical research over to the pharmaceutical companies, and you have a research model that is dysfunctional to its core, and one which leads many to suspect that the pharmaceutical companies would use a variety of tactics to delay or suppress any potential treatments – like, say, stem cells – that might damage their core business model.

The NMSS has consistently stated that less than 5% of their donations come from Pharma. I’m not sure if this figure includes all of the advertising dollars the pharmaceutical companies spend on NMSS publications and events, but even if it does, it’s too much. I am always astounded by the massive amount of advertising contained in the NMSS’s primary publication, the slick quarterly magazine Momentum, which serves as the face of the organization that serves as the face of multiple sclerosis for most of the general population of America. It’s hardly a stretch to say that every other page contains a Madison Avenue type advertisement for one MS drug or another, the total effect of which makes it easy to perceive the NMSS as a mere extension of the pharmaceutical companies.

If indeed Pharma monies make up less than 5% of the Society’s yearly take, my best advice to them would be to divest themselves completely of these monies. The shortfall would in large part, I’m sure, be quickly made up by donations from people who have long held back from giving because of their perception of the NMSS being locked in Big Pharma’s embrace. The Society could continue educating patients about MS disease modifying drugs, and do so without even the slightest hint of being under the sway of the companies who manufacture them.

In contrast, the International Multiple Sclerosis Management Practice (IMSMP), the MS clinic associated with The Tisch Center, doesn’t even allow pharmaceutical company representatives through the front door. The doctors who work there are not allowed to take any pharmaceutical company largess, and the clinic is one of the few medical facilities I’ve ever visited that doesn’t have the name of one pharmaceutical product or another emblazoned on every pen, sticky note, and wall decoration in the place. You’ll find none of these things at the IMSMP, precisely because the physician who runs the facility, Dr. Saud Sadiq, is fiercely independent and refuses to let the influence of Big Pharma, no matter how subtle, cloud the judgments of the staff who works there.

It is true, as the statement put out by the NMSS asserts, that the society has funded research into stem cell therapy in the past, and is currently funding 15 stem cell trials in the US. The problem is, as best I can tell, all of those studies are early-stage studies being conducted in test tubes or on animals, and even if successful the benefits of these trials will not reach MS patients for at least a decade or more.

The study being conducted by the Tisch Center is a human trial, using living, breathing MS patients to test a technologically advanced stem cell therapy which, if successful, could revolutionize the treatment of multiple sclerosis in a relatively few number of years, not decades. The Tisch Center spent over 10 years doing test tube and animal research before getting their FDA approval, so that work has already been successfully completed. Again, this trial is the only FDA approved stem cell study currently being conducted on MS patients. The only other such trial that I know of was completed by the Cleveland Clinic last year.

The NMSS writes that their decision whether to fund a project depends on “each proposal’s scientific merit and relevance to MS”, assessment “of the originality of the proposed project”, and evaluation “of the experience and scientific track record of the applicants”. I spoke to one of my friends who works at the NMSS’s headquarters in Denver, but due to confidentiality agreements between the Society and grant applicants they could not divulge whatever issues the NMSS may have had with the research being done by the Tisch Center. I can say that the research proved safe enough and showed enough potential coming out of the laboratory to be only the second MS stem cell trial to win FDA approval, and the Tisch center applied for NMSS grants on three separate occasions, each application addressing the issues the Society had with the last. I’m not sure what “individuals living with MS” the NMSS consulted with, but from where I sit (since I can barely stand) the research is most certainly relevant to MS.

Furthermore, the Tisch trial is using proprietary methods to transform raw stem cells into a type of stem cell specific to the central nervous system, a technique far more sophisticated than any previously used in human stem cell trials, and far more refined than the stem cell treatments being offered, at substantial cost, to patients by most offshore clinics. I’d say that accomplishment should tick the “originality” box on the list of NMSS requirements.

As for the “experience and scientific track record of the applicants”, if I were to list the research published by scientists at The Tisch Center in only the last five years, this post might just break the Internet. Okay, maybe that’s an exaggeration, but you can check out just some of the research being done by the Center on their website (click here).

The Society’s response to inquiries about their repeated rejections of the Tisch Center’s research proposals further states that “The lead investigator, Dr. Saud Sadiq, received written feedback regarding the scientific evaluation of his proposal and was invited to reapply for funding to address the specific concerns.” This is quite true. What is also quite true is that Dr. Sadiq submitted not one, not two, but three proposals to the NMSS, attempting each time to address their concerns, to no avail.

The first proposal was submitted before the trial received FDA approval, and one of the primary stated reasons for the NMSS’s rejection of that proposal was the fact that the trial wasn’t FDA approved. After the trial received FDA approval, another proposal was made, which was again rejected. Undaunted, and in need of funding to continue this vital research, the Tisch Center submitted a third proposal, which the researchers involved believed addressed the concerns expressed by the Society’s most recent rejection. The third proposal was again rejected.

I’m not privy to the precise concerns expressed by the Society that were used to back up their rejection of the third and final grant proposal submitted by the Tisch Center. However, I do know that the trial did win an extremely rare FDA approval, is using state-of-the-art technology and techniques, is testing methodology that if successful will expand the boundaries of the science, and is being conducted by world-class researchers at a world-class facility in the heart of the biggest city in the nation.

Any safety concerns that the NMSS’s experts may have had should have been alleviated by the FDA approval, and unless those experts included soothsayers and seers I’m not entirely sure how they could determine the odds of success for a trial the likes of which has never before been attempted. I may be admittedly biased, but I find it hard to imagine that the Society’s concerns were so dire that three rounds of proposals couldn’t result in a solution. Especially since, even as you read this, hundreds if not thousands of MS patients are flocking to medical tourism sites offering unproven stem cell treatments at facilities of widely varying quality at a cost of many tens of thousands of dollars out-of-pocket.

The NMSS further states that it is funding one pilot project currently underway at the Tisch Center, and this is true. The trial in question was funded back in 2011 to the tune of $44,000, which may seem like a substantial amount of money to the average Joe, but in the world of medical research is fairly negligible (keep in mind that the NMSS receives approximately $100 million worth of donations every year). I spoke with the head of fundraising at the Tisch Center, who told me that the NMSS may have funded another Tisch Center study back in 2005, but she’d have to dig through her files to confirm that. I told her not to bother.

So, there you have it, the National Multiple Sclerosis Society’s response to inquiries as to why they refused to fund a trial that, in my humble opinion, has at least as much potential to change the lives of MS patients as any currently ongoing study, and my reaction to that response. Perhaps I’m partial since I am a patient of Dr. Sadiq’s, but my passion on the subject comes more from the desperation I feel as a human being whose body is being consumed by a relentlessly vicious disease, and not from my allegiance to any medical professional or facility. I promise.

I would urge those who feel similar passion to have their voices heard. 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 also ask that all opinions expressed or inquiries made be done so in as civil a manner as possible, as to a person the NMSS staffers I know personally are truly good people who are fully dedicated to the cause. It’s just the institution they work for that may be misguided…