Non-Profit MS Charity Ethics

[willysnout1]

In the meantime, thought, the NMSS has made attempts to discredit both LDN and Prokarin. It's effect on LDN will be far less successful because the drug has gained so much attention and is used by so many people. But not until some clinical trials are done will there be scientific proof to silence the NMSS.

As I've said before, the proof will be in the pudding. If I were a senior NMSS official, I'd be careful not to dismiss things too quickly.

[finn]

Sorry, time to leave the board.

-finn

[HarryZ]

Finn,

That's encouraging news to read about how the MP group is really trying to look at some different avenues when it comes to MS research.

It's too bad that the NMSS with all their influence didn't have the same attitude...especially toward something like LDN. Instead they have used their resources to try and condemn the drug as opposed to encouraging the research that it so desperately needs.

Harry

[Arron]

I must admit that i got quite nervous seeing this thread brought back up... thanks for keeping it on track The MP seems like a worthwhile organization focused on results, not glory.

[finn]

Sorry, time to leave the board.

-finn

[HarryZ]

Finn,

I agree with you that to study unprofitable - yet potentially effective - drugs like LDN in clinical trials would be something that national MS societies ought to support, but in current situation (ABCRs are rather widely used and Antegren is coming) to make it happen would need tremendous outside pressure or somebody inside those organizations who really believes in making things differently, and is also influential enough to change the way things are done. I'm afraid that at the moment there is a lack of both here in Finland, how about in the States?

The situation is even more so in the US and to a lesser extent in Canada. "Big money" rules the entire research industry over here although there are some small pockets of research by dedicated scientists that operate outside this dominant arena. There is a group of docs, researchers and specialized MS nurses called The Consortium that pays little or no attention to the "established group" and they may do some LDN trials by the end of the year.

These smaller groups work quite independently from one another as well so you will likely see duplication more often than not.

Harry

[art]

I just had it pointed out to me that this thread started out with a few calls for me to weigh in. I just missed the whole thing. Perhaps a little late, but here goes anyway:

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

While I can't speak for other nonprofits, but the law for "unrestricted educational grants", which is what most grants to nonprofits are from pharma, states that they can not come with *any* strings attached. The money is the nonprofit's to use as they see fit. No recourse by law is available. Now, on the other hand, if there is a verbal agreement or "suggestion" on how the money is to be used and you don't, well, you probably won't get any more. So there is always a way around it.

The Boston Cure Project takes a sort of opposite approach to thisisms - rather than attempting not to be biased, we attempt to include as many biases as we can. Our goal is to not have a single bias - thus when we solicit sponsorships from pharma (which we do one time per year for our annual event so that we don't have to charge the participants for attending), we make a huge effort to get as many involved as we can.

We're currently running a bit Biogen heavy, which is due to their proximity to us in part, but mostly because they are the most willing to step up to the plate to help when we ask. We point this out to other pharma companies, but they haven't been as forthcoming. This is starting to change. But overall, the money we get from pharma is a tiny portion of our funds. We raise the vast majority of our money from individuals.

As to, members of our organization benefiting financially from participating - well, we have 4 employees who are paid market or below salaries. I am one of them. I'm making about 20% of what I was at my last job and I intend to slowly increase this salary periodically until it is closer to a market level for my new position. We also occaisionally hire contractors for project work.

Investments in companies? We don't do it. If we get a stock gift, we sell it immediately. We can't see speculating with the funds we receive as contributions at this stage of the game. Having a big endowment is a standard in the nonprofit world, and one of the biggest harms I believe. It takes much of the urgency out of the mission. A safety cushion of a few months is one thing, but a year+?

I personally don't hold stock in any of the companies we receive sponsorship from, but we don't have a policy against it. None of us would be capable of purchasing a significant amount anyway.

We have a standard conflict of interest policy in place, as requested by the IRS to receive our tax exempt status, and I would imagine most nonprofits have one in place also. We have our financials audited yearly and the results are posted to our web site.

We respond to all questions about our activities to the extent the law permits.

I personally don't feel like the pharma companies control any of the nonprofits - I know they certainly don't feel they do. They complain to me about the bad treatment they get from other organzations quite frequently.

I think the big threat in pharma is on the marketing side. Particularly in extensive support of researchers. Pharma can get a grant out to a researcher much more quickly than the NIH or NMSS. This is very appealing if you are a researcher trying to get funded. It's hard to bite the hand that feeds you. Researchers do it, but it's just human nature to not be to harsh to someone helping you out.

I've met quite a few pharma employed researchers, and none of them have seemed anything but dedicated to the task of cracking this problem. I'm sure there are some bad apples in there (as in any group of people), but I've been fairly impressed with the dedication I've witnessed.

I came into all of this with a very negative view of pharma. I bought into the conspiracy theories. Now, I'm pretty confident there isn't a conspiracy to worry about (btw, all this is just MS pharma, haven't ventured outside of it). A great book on the dirt of the Pharma industry is "The Big Fix" by Katharine Greider if you want to learn about the seamy underbelly.

The thing that helped me be less angry with pharma was realizing that their job is NOT to cure the disease. They are largely distributors. Once a cure is available, they will make sure it gets manufactured, marketed, and on your pharmacy shelf. That's what they do. That's where the profit is. And doing it fast is a huge bonus. Once you realize that, as a for-profit company, they are duty bound to provide value (usually = profit) to their shareholders, it all starts to make sense.

In my opinion we should be looking to them to fulfill their primary function, not cure the disease (although currently, much of the research work gets done by industry, not acedemia) and trying to put in place organizations that are not profit motivated that have the cure as the motivation. I'm putting my money, and my life, where my mouth is and trying to do just that.

OK, that was a ridiculous ramble that may or may not have addressed a bunch of points on the thread. Hope I didn't step on anyone's toes too much and will try to reply more promptly if anyone has further questions or comments.