Re: Just be Dianosed Today - Do not like doc's Treatment plan
From: EndoWoman (anonymous@obgyn.net)
Thu Jan 16 10:30:01 2003
I agree this is very important.
May I have permission from the author to repost this on other endo
forums?
Thanks.
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.
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