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Re: Just be Dianosed Today - Do not like doc's Treatment plan

From: International (anonymous@obgyn.net)
Mon Jan 20 15:26:43 2003

At Thu, 16 Jan 2003, anonymous wrote: >
>>>At Thu, 16 Jan 2003, Anonymo wrote:
>
>TAP is a sponsor of the Endometriosis Association??
>If this is so, it would be VERY VERY VERY disturbing.
>Can you please tell me where I can verify this? It's not that I think
>you're making this up, but this would be such shocking and upsetting
>news that I need some proof before believing it. I don't see it
>mentioned on the EA website. I know TAP is NOT NOT NOT a sponsor of the
>Endometriosis Research Center, though. The ERC has actually been very
>critical of the use of Lupron, and regularly posts articles on their
>website that TAP would not like to see there.>>
>
>This is a GOOD discussion - and a tough one, which will probably be shut
>down by the politically correct censors here. But women need to know
>where their beloved organizations are getting their money from.
>
>TAP is most certainly one of the EA's strongest sources of income (aside
>from their members, who have to pay to get even so much as a sheet of
>info from them, practically). While many supporters of the EA claim
>that this is a "good thing," because "at least their money is going to
>Endo," it is downright unethical in the eyes of many others, especially
>those women who have been negatively effected by Lupron. How does an
>organization claiming to help women take money from the one of very
>sources of harm in those women's lives?? The answer is very simple -
>they shouldn't.
>
>Taking the money and then saying in the next breath, "we don't endorse
>Lupron" is also absurd. If you don't believe in a product or a company
>or what that company or product is doing to your members, you don't take
>their money. Period. Taking their "donations" and "gifts" simply sends
>the message that it's ok to take TAP's money, despite how many women out
>there in the Endo community are suffering from negative effects of
>Lupron, just because it's going to educational or research or media
>programs.
>
>The EA is sponsored by many other pharmaceutical companies also, but
>none as controversial or with as much community impact as TAP/Lupron.
>Interestingly enough, most (if not all?) of the EA's "scientific
>advisors" are or have been funded by TAP as well, and many are on the
>"panel of experts" someone else spoke of, that was recently lauding the
>use of Lupron as a diagnostic measure at a recent conference. What kind
>of message does this send??? [[[Of course, we are talking about the same
>organization which proclaims their non-animal testing position, yet
>proudly tells the world about their dioxin research (in which primates
>were used); and the same organization which has very, very close ties to
>a certain set of brothers who were found to be guilty of publishing
>fraudulent study data in a high ranking journal. Talk about speaking
>out of both sides of one's mouth!]]]
>
>I have personally contacted the EA repeatedly to comment on their
>position regarding TAP/Lupron, but have never even received the courtesy
>of an acknowledgement, let alone an answer. I know their supporters
>will jump into the fray here, screaming about how it's important to
>conduct their work, so why should it matter where the money comes from -
>but it really isn't that simple. We're talking about ethics and
>morality here.
>
>Naturally, I posed these same questions to the ERC, another non profit
>organization vigorously supported by many women. I did get a response
>from them (finally) when I asked for their position, and they told me
>that the ERC "has not, does not, and will never take donations from TAP
>Pharmaceuticals," based on their own and their member's "strong feelings
>about the company's practices" and the "lack of efficacy combined with
>long term negative effects the drug holds for many women and teens." At
>least they have some concern for the women they serve. However, they
>did take a large grant from Amgen Praecis Corporation 2 yrs. ago and
>receive funding (aka "gifts") from other companies. When I asked them
>to comment about the claims written on the NLVN's page about them, they
>again vehemently denied any involvement with TAP. The "study" talked
>about by the NLVN was a clinical trial advertisement, of which they have
>many posted on their site as a courtesy to the readers. They did not
>get paid for it. I can accept that. As for one of their staff being
>paid by AstraZeneca, another GnRH maker, they again denied the claim,
>stating that the staff member was in fact employed right here by
>OBGYN.net. However, the position she held at OBGYN.net was funded by
>AstraZeneca, so you do the math.
>
>Some examples of direct sponsorship from TAP to the EA:
>
>"Through a grant from TAP, the Endometriosis Association (EA)
>established Endometriosis Screening Month in October 2001."
>http://www.tap.com/patients
>
>"Group Leaders Meeting: EASe President, Lee Shu Lay, was one of 45 group
>leaders from the USA, Canada, Brazil and Germany to meet in Milwaukee,
>USA from February 17th to 18th. This was made possible through a
>generous grant from TAP Pharmaceuticals." [2002]
>http://sg.geocities.com/easespore/endosource/newsjuly2001.html
>
>"This year's competition was made possible by an unrestricted
>educational grant from TAP Pharmaceutical Products."
>http://www.endometriosisassn.org/media.html
>
>The NLVN released the following information on their site:
>
>"The following statements appeared in Endometriosis Association
>newsletters:
>
>The Endo Association in their 1998 newsletter Volume 19 #1-2 stated, "We
>also are immensely appreciative of our corporate donors: TAP
>Pharmaceutical (makers of Lupron) [a GnRH-a], for $30,000, unrestricted
>grant.
>
>An Endo Association newsletter, (1998, Vol. 19, #1-2), revealed that
>the Endo Association received over $114,000 from the 3 manufacturers of
>GnRH analogs during that year. During the year 1997-1998 (1999, Vol.
>19, #5-6), "membership" was $220,285. The amount of money the Endo
>Association received from the 3 manufacturers of GnRH analogs was
>significant.
>
>The Endo Association in their 1997 newsletter Volume 18 #1 stated, "We
>also greatly appreciate the following companies which provided
>contributions to the Association. Thank you so much to:
>
>TAP Pharmaceutical (makers of Lupron) [a GnRH-a], for $20,000.
>
>The Endo Association in their 1995 newsletter Volume 16 #1 stated, "We
>also want to express our great appreciation to our corporate donors.
>Your support is very important to us! Thank you so much to:
>
>TAP PHARMACEUTICALS (makers of Lupron) [a GnRH-a], for $23,000 in
>support of all the printing for the 15th Anniversary Conference and for
>meals for the speakers.
>
>The Endo Association in their 1996 newsletter Volume 17 #5-6 stated, "In
>the fall of 1995, the winners were announced for the EA Journalism
>Awards for outstanding reporting on endo. Winners were awarded $1000
>each for stories on endo written from July 1994 to July 1995. Sponsored
>by the EA and funded by TAP Pharmaceuticals [makers of the GnRH-a
>Lupron] the contest was designed to encourage accurate reporting on
>endo."
>
>The Endo Association in their 1996 newsletter Volume 17 #1 stated,
>"Journalism Award Winners. We're happy to announce the winners of the
>Endometriosis Association Journalism Awards for outstanding reporting on
>the disease." "Each of the winners received $1000. Thank you to all
>those who entered and to all the journalists who have worked to get
>accurate information about endometriosis into the public eye. We
>especially appreciate TAP Pharmaceuticals,whose support made the award
>program possible."
>
>The Endo Association in their 1995 newsletter Volume 16 #2 stated,
>"Thank you to our judges for the Endometriosis Association Journalism
>Awards contest (sponsored by TAP Pharmaceuticals [makers of the GnRH-a
>Lupron])..."
>
>The Endo Association in their 1996 newsletter Volume 17 #1 stated,
>"Central New York Support Group leaders [x] and [x] thank Tap
>Pharmaceuticals [makers of the GnRH-a Lupron] and local rep [x], [x],
>for their 1995 donation earmarked for the group's mailings and
>newletter."
>
>The Endo Association in their 1995 newsletter Volume 16 #2 stated,
>"Congratulations to our Munich, Germany Support Group for its very
>successful first conference in September!" "Conference organizers [x]
>and [x] would like to especially thank representatives from Zeneca Gmbh,
>Organon GmbH, and Takeda Pharma [TAP is a joint venture between Takeda
>Pharma and Abbott Pharmaceuticals] GmbH for their help and sponsorship."
>
>The Endo Association in their 1995 newsletter Volume 16 #1 stated, "The
>Honolulu Support Group held their fist day-long conference during
>Endometriosis Awareness Week in March. The group leaders, [x] and [x],
>worked hard to arrange sponsorship from local pharmaceutical reps around
>Oahu (including TAP)..."
>
>The Endo Association in their 1999 newsletter Volume 20 #1 stated,
>"Thanks to Takeda Pharma GmbH, Germany for sponsoring the printing and
>distribution of the EA's revised German brochure, and Schering AG,
>Germany, whose donation enabled us to be represented at the European
>Society for Human Reproduction and Embryology (ESHRE) meeting in
>France."
>
>"The Endo Association in their 1999 newsletter Volume 19 #5-6 stated,
>"Thanks to Takeda Pharma GmbH, Germany, and Laboratoires Takeda, France,
>for making it possible for the Association to be represented at the
>'Fifth International Symposium on GnRH Analogs' in Geneva."
>
>TV Infomercial
>In 1998 there was a 15 minute infomercial on national cable television
>promoting GnRH analogs. For approximately 15 minutes the infomercial
>"plugged" GnRH analogs even for unapproved uses. The only statement
>made regarding side-effects was "If side effects should occur we can
>treat that as well." The infomercial was made possible through an
>educational grant from TAP Pharmaceuticals, Inc. (the manufacturer of
>Lupron) [a GnRh-a]. At the end of the ad there was a full screen
>showing the 800# for the Endometriosis Association."
>
>There was a post right on this forum at
>http://forums.obgyn.net/endo/ENDO.9807/0711.html, in which a
>conversation between 2 people reads:
>
>"<<I want you to know that this forum endo@obgyn.net, The Endometriosis
>Quilt and the Endometriosis Pavilion at OBGYN.net are all paid for by
>OBGYN.net. OBGYN.net's sponsors are all medical device and
>pharmaceutical companies. >>
>
>Let us also not forget that the Endometriosis Association itself
>accepted a grant from TAP Pharmaceutical, the makers of Lupron. Without
>that grant, chances are valuable research the EA conducted with the
>proceeds would have been pushed to the wayside - or worse, put on the
>backburner permanently for lack of funding. True enough, there are
>indeed many evils in the world, but it's unfair to assume that because
>someone wears the hat of Pharmaceutical rep (or any other profession for
>that matter!) that they are in the same class as the ones who deserve a
>bad rap. Don't let one bad apple spoil the bunch!"
>
>Again, you will note one person's anger at the fact that her sources for
>support are funded by the sources of her angst; you will also note the
>standard, politically correct party line reply to her.
>
>Until the organizations start validating the concerns of the women they
>serve over the companies which fund them, all of their work is tainted,
>no matter how you look at it. There is such a thing as ethics, which
>many jaded professionals and organizations seem to have forgotten. I
>make no apologies for participating in this discussion and posting the
>above PUBLIC information - it's high time all the "dirty little secrets"
>came out.

--
The following is Mary Lou Ballweg's response to Jessica in New York, who also had questions on this subject:


"Thank you so much for your email.  I'm happy that you have found us – we are a group of women with endometriosis and their families, and physicians and scientists all around the world.  Check out our books, literature, website, and newsletters and you will quickly see that our information reflects our own research programs, including the world's largest research registry, a magnificent program at Vanderbilt University School of Medicine, and the work that we do with NIH, our Advisors, and groups around the world.  Our work definitely does not reflect TAP Pharmaceuticals!


Your question is a good one.  From our very beginning in 1980, we have always followed a policy of independence and work very hard to maintain that policy.  In fact, we are more independent of commercial interest than any doctor (who, after all, has to promote his or her own business) or any other entity.


We do receive unrestricted grants from a number of pharmaceuticals.  TAP gave us $35,000 unrestricted last year, which represents only two percent of our budget.  We do not allow them or anyone else to dictate any of our policies or even change as much as a word of our brochures.  In addition, TAP provides some in-kind support for our "Killer Cramps?" diagnostic campaign (go to our website and you will see this scientifically-validated test we developed to help women and girls who are not yet diagnosed), consisting of printing and help with distribution to doctors' offices of plaques, flyers, and materials related to that campaign.  I think you would agree, particularly since we control that campaign, that it would be a sad loss to the many women and girls who are not yet diagnosed to not accept help of that kind which in no way obligates us or compromises us.


Thank you for writing.  We hope that you will be part of our mission to conquer this painful and frustrating disease.


Cordially,
Mary Lou Ballweg
President/Executive Director
Endometriosis Association


MLB:eak"



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