[BobbyB]

Patient groups special: Swallowing the best advice?
28 October 2006
NewScientist.com news service
Jessica Marshall
Peter Aldhous


link
http://www.newscientist.com/channel/...st-advice.html

[glenntaj]

--the fact that Neuropathy Association would not reveal how much of its funding comes from pharma companies--the line is "The public relations consultant for the Neuropathy Association told New Scientist that the information was 'proprietary', and wouldn't discuss the group's guidelines on receiving donations".

As someone who's been active in the Neuropathy Association for a long time, and has been critical of its management and even its web presence--it's no accident that more people post on this site's, and on Braintalk's, peripheral neuropathy boards than have ever posted at Association (their board is hard to navigate)--you can be sure they'll be getting a call from me, followed by an e-mail, followed by a letter. In these days of hidden agendas, it's vitally important that a non-profit advocacy organization come clean as regards its income sources, and operate in the sunlight.

[loisba]

Very interesting article, BobbyB!! Where DO you find this stuff!
Keep up the good work.
Hugs,

[patientsfirst]

When I learned that the Neuropathy Association is finding excuses not to reveal its funding sources, I just had to chime in.

[DocJohn]

Glenn, if the Neuropathy Assoc. did reveal how much of its funding came from big pharma, let's say 75% just for the sake of argument, how would that affect your perception of this organization?

Let's also assume that if they didn't have that 75%, they wouldn't exist any longer...

I agree 100% -- nonprofits and other associations should definitely be transparent and disclose their funding sources. But I find that once they do so, then the next argument becomes, "Well, how can we be less dependent upon those funding sources?"

I've been involved in organizations where they basically faced the same proposition -- scale back operations as other funding sources dry up, such as gov't and nonprofit grants, or expand operations with money that comes from big pharma with no direct strings attached (of course there are the indirect strings!).

John

[glenntaj]

--and many others--it's been the hush-hush secrecy surrounding the fact that these are funding sources, almost as if there is some sort of string that needs to be hidden.

This secrecy has been on both the public and private levels; the info is not readily available to any member of the Neuropathy Association, and the Board of Directors and staff will not readily reveal it. You've got to go digging--and once that happens, it will always look as if there's something to hide.

I've got nothing against BEING funded by profit-making companies, if one is a non-profit--just something against not ADMITTING one is funded thusly. I have considerable non-profit experience myself, and one of the cornerstones of proper non-profit conduct (not always followed, of course), is that you freely cop to where your funding comes from--and where it goes. Anything else violates the non-profit trust, leads to the appearance of conflict of interest, and, in the end, probably erodes future fundraising ability anyway!

[Chemar]

I agree Glenn......it is the secrecy that disturbs me too!

[DocJohn]

Yeah, that is odd. Not sure why any non-profit would be afraid of disclosing their funding sources. That would seem to be one of the foundations you would need in order to bring in more money...

[mrsD]

controversy has been going on with ADD and CHADD since the late '80s.

example:
http://www.adhd-report.com/adhd/10_ritalin_CHADD_2.html
and
http://www.adhd-report.com/adhd/11_ritalin_CHADD_3.html

I had at one time documentation about a researcher who was censored by
CHADD --- It is lost in the "crash" of '06. I forgot his name, however. If I find
it later (I have to leave now) I'll post it here. He was censored because his studies showed results contrary to the funding $$.

Shire also contributes to the printing of CHADD booklets, and puts them in
doctor's offices. Of course they say "provided by Shire" on them.
Shire makes Adderall.

When attention to other modes of approach are neglected, in favor of the very drugs produced by the funder..one has to wonder.

For example, Dr. Latov's new neuropathy book glosses over nutritional support for neuropathy--but he does say B12 is worth taking. Then he quotes the WRONG dosage... 500mg instead of 500mcg TWICE in the book. That subject gets about 2 paragraphs in a whole book. (sad since nutritional support really works for many people). Very informed I guess he is. However, he did not misspell any drug names in the book! When we see this bias, constantly, and often kept secret, it is aggravating, and angering.

Found it:
http://www.ahrp.org/infomail/04/12/03.php

Pelham, who is currently listed by CHADD as a member of its professional advisory board, came face to face with what he says are the group's glaring conflicts of interest. In 2002, after he received the CHADD Hall of Fame Award, he was subsequently interviewed for Attention!, the organization's magazine. In the interview, Pelham said, among other things, that stimulant drugs have serious limitations when employed alone and at high doses. He also pointed out that psychosocial treatments should be the treatment of first choice in ADHD, with adjunctive medication when necessary. But eight months later, after CHADD's board of directors tried to quash the article, CHADD published Pelham's interview - but with large swaths cut out, particularly his comments about the limitations of the stimulants.

There is quite a bit MORE at the ahrp site above!

And for those here who do not know our history--- my son was on Ritalin for 5 years...and by a twist of fate, responded
to essential fatty acids, and some simple support vitamins to the extent he no longer needed the Ritalin. He did much better
after the Ritalin in school and in general, and this was over 10 yrs ago. Since then I have devoted much of my private and
professional time researching to find the truth and validity of natural interventions to prevent illness.

[The Crystal Cave]

Thank you for opening the topic for discussion, Glenn. I too get uneasy when an organization is not forthright with funding information. There is always the temptation to adjust perspectives and redefine positions based on the influence of funding sources, and when we don't know what those sources are, we can't check further to decide for ourselves if the support comes with strings.

mrsd, thank you for your note. I've long realized that in too many cases, having pharmaceutical companies as closet sugar daddies is like accepting the services of a fox to design a better chickecn coop.

Have a safe weekend, everybody.

TCC