Some Unsolicited Advice for the National Multiple Sclerosis Society

The fall issue of the National Multiple Sclerosis Society's magazine Momentum includes an article entitled "Safe Travels through the Internet", in which I'm quoted quite extensively (click here for article). I'm very thankful to be included in the article, along with fellow bloggers Lisa Emrich (click here) and Trevis Gleason (click here), and was quite surprised when I was approached and asked to be interviewed. I think the writer did a terrific job on the piece, which is extremely informative and should be very helpful, especially for those just getting introduced to the online MS universe. The entire magazine is a quite good, and is definitely recommended reading.

After Momentum came out last week, I received several e-mails expressing surprise that I would participate in a magazine put out by the NMSS, the inference being that since I'm a proponent of CCSVI, and have written extensively about my largely unenthusiastic views of Big Pharma and their MS products, that I should shun any association with a group that many perceive as the enemy, and one which numerous patients view as simply a shill for mainstream MS interests and the big pharmaceutical companies.

It struck me that this is a huge problem for the NMSS, and for the MS population. The fact that a significant percentage of MS patients view the largest and most visible nonprofit MS advocacy group as an adversary is a disconnect that both those struggling with the disease and the organization that is supposed to be dedicated to fighting the malady can ill afford.

The NMSS (and their sister Canadian organization) have long been targets for many in the MS online community. That enmity has reached new heights in the last six months, however, after the organizations' admittedly slow, clumsy, and misguided initial handling of the CCSVI issue. Even after the Canadian and US MS societies dedicated $2.4 million to CCSVI research, dissatisfaction with the organizations grew, largely because the research that was funded is more academic than practical, as no treatment studies received vital financial grants. This brought online gripes against the societies to new levels, with accusations flying that the studies funded were at best simply delaying tactics, and at worst intentionally designed to disprove the CCSVI hypothesis for the benefit of the MS societies’ Big Pharma masters.

Of course, the NMSS does much more than fund MS research. The society runs a host of valuable programs that benefit the MS community on both the local and national level, among them support groups for both patients and caregivers, government advocacy, MS education, financial assistance, scholarships for those living with MS or their children, employment resources, and help with procuring assistive devices. As for the research the society does support, a quick perusal of the NMSS website reveals that the society funds many innovative and cutting-edge projects (click here), most of which would otherwise get no funding at all.

Still, a large portion of the MS population regards the society as a monolithic entity, an instrument only interested in maintaining the MS status quo, enriching the society itself, and pushing the use of the hugely profitable immunosuppressive and immunomodulating drugs currently offered by the big pharmaceutical companies.

Since I started this blog 18 months ago, I've gotten to know several employees of the National Multiple Sclerosis Society. It may surprise some readers that these folks are not firebreathing ogres with glowing eyes, forked tongues, and pointy tails, but compassionate human beings who fervently care about ridding the world of Multiple Sclerosis and helping patients stricken with the disease.

With all of the above in mind, I thought I'd offer a few suggestions to the NMSS in an effort to help build a bridge between the organization and those who find it highly suspect.

My first suggestion is a radical one, but one that I think would almost instantly restore credibility to the NMSS as an organization wholly devoted to finding a cure for Multiple Sclerosis. The society should simply stop taking any funding from the pharmaceutical companies that market MS drugs. I've been told that donations from pharmaceutical companies represent less than 5% of the financial support received by the NMSS, and if this is true, rejecting this funding shouldn't be a crippling blow to the society's bottom line.

Additionally, I believe that if this audacious step was taken, much of the revenues lost would be made up by an increase in donations by patients and their loved ones who currently hold the society in complete disregard. Online, patients regularly talk about asking everyone they know not to make donations on their behalf to the National Multiple Sclerosis Society. By making the bold move of rejecting pharmaceutical money, the society would quickly win back many of the patients who are, under current circumstances, now lost to it forever.

Thumbing through the most recent edition of Momentum, the quarterly NMSS magazine, I counted 13 pages of advertisements paid for by the pharmaceutical companies, in a magazine comprised of a total of 70 pages. In fact, Pharma ads were practically the only advertisements in the magazine (there were also a few from medical device manufacturers). Given these numbers, and the fact that for many individuals Momentum is their major point of contact with the NMSS, it isn't difficult to see how the magazine's readers might get the impression that the NMSS takes its marching orders from Big Pharma.

I'm sure that the higher-ups at the NMSS can't be blind to the fact that taking money from companies that make billions annually marketing obscenely expensive drugs that ameliorate MS symptoms but do nothing to address the still unknown cause of the disease appears to be a conflict of interest for an organization whose stated vision is "A World Free of MS". Such a world would send many of the companies that market MS drugs quickly into bankruptcy court. Multiple Sclerosis has become the goose that laid the golden egg for these corporations, entities whose mandate it is to constantly drive profit, and that by law are beholden to their stockholders, not to the patients who consume their products.

My second suggestion would be to let us see some of the real-life human beings that staff the organization's national and local offices. Those that I've had contact with are empathetic, caring human beings, and many of them have had their lives impacted significantly by friends and family who suffer from MS. The society desperately needs to shed its monolithic image, to show the MS community in a very real way that it is not made up of faceless automatons, but by concerned people who, as one told me, would gladly give up their jobs if a cure for MS could be found.

The NMSS needs to humanize itself, and a strong dose of the personal touch is needed. A starting point might be to feature the profiles of select society employees on the NMSS website and in Momentum Magazine. Much more good would be served by devoting a few pages of the magazine to profiling real life, sympathetic NMSS employees than to advertisements for Avonex, Rebif, or Copaxone.

Lastly, I would ask the NMSS to play nicely with the other much smaller MS nonprofit organizations that dot the MS landscape. I understand that the competition for funding is fierce, especially given our current economic climate. But the NMSS has developed a somewhat cutthroat reputation among the nonprofits that compete with it, all of whom share the goal of ridding the world of MS. The NMSS is the de facto face of Multiple Sclerosis to the public at large; it's the only MS organization most of the population has ever heard of. Certainly there is room for smaller, more specialized organizations to have a place at the funding trough. This isn't a zero-sum game. As a matter of fact, it's not a game at all. People's lives are at stake, and by working with smaller organizations, rather than against them, a cure for this beast called MS will surely come about sooner. As was said during the civil rights movement, keep your eyes on the prize.

I hope these suggestions are taken in the spirit in which they are given. The lack of faith in the NMSS by the very population it advocates for is reaching the crisis stage in some corners. Direct action is needed, and despite the misgivings and suspicions held by some MSers about the National Multiple Sclerosis Society, the society can be at the forefront of affecting real change, by heartily rejecting the status qou and showing the community an energetic new face. The NMSS must redefine itself to the MS community, to the mutual benefit of both…