This Is MS Multiple Sclerosis Community: Knowledge & Support

I wonder about ethics policies at the NMSS and other MS non-profits. One issue that concerns me in particular is the relationship with pharmaceutical companies. Specifically, I wonder about restrictions that might come with grants by drug companies, and I wonder about investments by such charities as well as personal investments by the executives and officers of MS charities.

At the moment, we have the ABCR drugs that have been approved. It appears that Antegren is coming sometime next year, and there are others in the pipeline. These are very expensive and highly profitable drugs, and this begs the question of whether the NMSS might be induced at the organizational level to overlook effective treatments that are cheaper.

It would be worthwhile to know what ethical policies are in place at the NMSS to forestall this possibility. The same would hold true for other multiple sclerosis organizations.

A related issue is investment. Let's imagine that NMSS is insulated from drug company pressure in a direct sense, but that the organization has invested money in drug companies. Wouldn't that pose a conflict of interest? What about officers and/or senior executives holding stock in the companies that make MS drugs? This could give them incentives to make decisions unfavorable to competitors of the companies whose shares they own.

Similarly, are the NMSS's people (and those in other MS charities) restricted from putting personal money into start-up drug companies? Let's imagine that you're an executive of a charity and in the course of your work you come into contact with what you think is a promising approach. Startup companies typically offer very attractive terms to ground-floor investors, but if someone in an MS charity got such terms it would raise ethical issues.

For one thing, the individual would have every incentive to promote the approach taken by the promising startup, perhaps to the detriment of competitors. The startup company would have every incentive to tell other prospective investors that "Mr. So-and-So of (name the MS charity) is an early investor," thereby conferring a legitimacy not enjoyed by the competition.

Similar issues arise as every stage of the early financing process. Often, the boards of directors of young companies will grant "friends and family shares" to people they know. Could someone at NMSS or another MS charity accept such shares? Similarly, young companies often invite outsiders onto their boards of directors, or on to so-called "advisory" panels. These positions often come with free or very cheap shares.

And there would be the question of who really owns these early opportunities, given that the officer of the MS charity got them by virtue of work he was doing in the charity's name. Shouldn't the charity get the opportunity, not the officer? And if the charity would turn it down because of conflicts of interest, then why not the officer as well?

I'm interested in how other people think of these issues. In particular, I'd like to know how Art, of the Boston Cure Project, regards them. And how about Boston Cure Project? You were a high-tech executive and the press clippings on Boston Cure Project talk about its "entreprenurial" nature, and you've been engaged in a comprehensive survey of the research on MS, financed by donations to the non-profit organization that you run. Is the "Cure Map" the only product, or are you also accumulating a personal investment map? If so, are there others who will share the information and how are they designated?

What are your organization's politices on ethics and conflict of interest in the areas I've mentioned? Art, do you know how the NMSS handles these issues?

Willy,

I've got to hand it to ya........you know how to word things!

Of course, we could probably find out the answers to some of your questions by doing our own research. We do this exact same type of research where I work in order to ascertain corporate relationships and intertwined "interests", political implications, etc., in order to.......well, frankly, in order to be a "leg up" if and when we need to "take on" a corporation (as it pertains to the labor movement), if they decide to take an adversarial stance against us over an alliance with us.

My question is, though: IS there some type of suspicion that the NMSS SHOULD be looked into? Truthfully, I'm personally totally unaware of the need to do so. But I can't claim to be on the inside of any "loop", either, so what do I know anyway? I truly have no leaning either way.

How's THAT for fence sitting? (Sad, but true in this case.)

Deb

Deb, there's a cohort of MSers who have a beef with the national office of the NMSS. I occasionally read bitter comments, usually consisting of ad hominems without real analysis or detail. The general theme of such comments seems to be that the NMSS is too orthodox in its research funding and therefore too close to drug companies; that it doesn't spend enough of its budget on research; that it pays its executives too much money.

I don't share these views. For one thing, the local chapters that I've dealt with are fantastic so I tend to be biased in favor of the whole organization. Secondly, their fundraising and administrative costs are some of the lowest by percentage in the charitable field.

Thirdly, I think the orthodoxy stuff is a mixture of frustration at MS having no cure; agitation on the part of the alternative medicine crowd; and suspicion of the NMSS simply because they're the 20-ton gorilla of MS charities in terms of money collected and spent. Finally, I don't share the view that the NMSS pays its people too much money. Charities need permanent employees, and those people cost money.

My questions about ethics are rather pointed. But that's a byproduct of my writing style, which is very direct and therefore can come across as angry when I don't intend it to. My questions are not a veiled attack on the NMSS or anyone else. They're simply questions. I really wish Art would weigh in, because I think he had the experience and perspective as someone who runs an MS non-profit of his own.

Hi, Willy!!! How are ya??

Oh! Ok! I see! (And my comment about how you word things was actually a true compliment.)

Yes, I don't have anything against the NMSS, either. (Or is it no, I don't have...)

Actually, even though not asked, my personal thought would be that the NMSS would be really dumb to get themselves tangled up in ANYTHING that might shed a bad or unethical light on them. And I don't think they're that crazy.....but I'm not basing that on any facts, of course. Looking at it from a pure "good business" standpoint, though, that would be dumb for them to allow a bunch of shadiness (if you will) to permeate the organization. They are non-profit.......so where's the profit? Plus, we MSers are a pretty sharp bunch.

I've always found them to be personally helpful, too.

And as you know, I like Coetzee. hehehe.... Something (gut feeling?) tells me you'd have a hard time getting HIM to get involved in anything that "fishy", or to leap before he looked. This is all just conjecture on my part, though.

Where is Art anyway?

Deb

Sorry, time to leave the board.

-finn

Boston Cure Project's website gives no information about whether it or any of its employees or contributors have or will be allowed to derive financial benefit from that organization's activities. I'd like to hear from Art about this, plus whatever he might have to say about similar issues within the NMSS.

Oh really? Then what about all the research on aspirin and anti-oxidant vitamins in recent years? And, by the way, who here has said that a hi-end niche drug is always better?


"Proven ... to be potentially effective." What the hell does that mean?


You can buy aspirin for a penny a tablet in the United States, but that didn't keep the research from showing its benefit for prevention of heart attack and stroke. Similar for Vitamin C, Vitamin E and beta carotene. If there's a conspiracy against cheap OTC solutions, then why were these things studied, proven effective, and widely publicized?


It would appear that even the Canadians can be corrupted?


Let's see what they come up with. Anyone can write a high-toned website, but the proof's in the pudding.

Sorry, time to leave the board.

-finn

Ha, took me a while but I think I can just about get the jist of that.
Pilkunnussija -not in the polite sense?


Felly

Sorry, time to leave the board.

-finn

Hyvää huomenta Finn,

Not really, thats why it took me a while to work it out - the 'you are a big xxx' I have been to Finland a couple of times and lived in Sweden for a year, even though the languages are not very similar there are some basics with Swedish and German that help.

Finnish is apparently the most ominopoetic language in the world. I seem to remember you have zillions of nouns.

Felly

Sorry, time to leave the board.

-finn

Finn,

I am proud of my use of diacritics but I think your English is better than my Finnish anyday. In fact your English is better in its depth, construction and understanding than that of many English speakers.

And, I agree with the diagnosis -Pilkunnussija

Sanasta sana tulevi, kipinästä maa kytevi

kiitos

Felly

Oh boy, this is a true misunderstanding. When I wrote, "What the hell does that mean," it was not a comment on your English. In fact, your English is so good that in spite of your having identified yourself as Finnish I haven't been thinking of you as a non-English speaker. I've spent a lot of time in Europe and have been welcomed with real warmth and grace. I would never ridicule someone's English in the way you might have thought I was doing. I'm sorry if this was the impression I left, and wish to say that I honestly didn't mean to offend you.

My remark concerned the substance being "proven to be potentially effective." That's a meaningless concept in English. If something is "potentially" effective it means it still might not be effective. Therefore, what can "proof" of "potential" effectiveness mean? The answer: Nothing.

As for the word "pilkunnussija" as it might apply to me, I will start by admitting that I am very far out on a limb here. I went to Google for a translation, and it came back "anal retentive." In English, if this were used in a vulgar sense it would mean one thing, but if it were used in a non-vulgar sense it would simply imply "detail-oriented to a fault."

If you're implying the latter, I proudly plead guilty. I'm very big on the details. It makes me someone who can be very frustrating to argue against, but also a tenacious ally once I have been convinced. As for the rest of the Finnish being bantered about here, I can't follow it.

Sorry, time to leave the board.

-finn