ENDO Messages for January, 2003: Re: Just be Dianosed Today

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

From: Lynne (anonymous@obgyn.net)
Sat Jan 18 06:36:27 2003

Messages sorted by: [ date ][ thread ][ subject ][ author ]
Next message: anonymous@obgyn.net: "Re: Sad News , Please say a Prayer"
Previous message: anonymous: "Re: lupron may be toxic"
In reply to: anonymous: "Re: Just be Dianosed Today - Do not like doc's Treatment plan"
Next in thread: anonymous: "Re: Just be Dianosed Today - Do not like doc's Treatment plan"
Reply: anonymous: "Re: Just be Dianosed Today - Do not like doc's Treatment plan"

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.

--------------- I'd like to share a note that I mailed to the EA and Mary Lou Ballweg on

-- --------------- April 20, 2000 (this 4/20/00 note was sent via regular mail, email, and also was posted on the internet support newsgroup "alt.support.endometriosis" (which is not the AOL board, as I mistatkenly stated in my letter). I never received a response from the EA or Mary Lou Ballweg.

I'd like to add that in the mid-1990's I obtained many of the EA's financial disclosure reports (the Annual Reports submitted to the MA. Attorney General, as required by law for 'public charities'). Of note is that these early Annual Reports (i.e., 1992) detailed the amounts of money that TAP (and others) gave to the EA. The next time I requested these Annual Reports - "things" had changed. Only the total amounts of money donations to the EA were listed - no identification was made as to where these sums of money originated from.

Do RICO statutes apply here? It would appear that what we are dealing with here is racketeering and racketeurs of the lowest order -and they need to be stopped.

Best wishes, Lynne

------------------------------- Endometriosis Association International Headquarters ------------------------------- Mary Lou Ballweg ------------------------------- 8585 North 76th Place Milwaukee, WI. 53223

Dear Ms. Ballweg and Endometriosis Association:

As you may or may not be aware, I am currently involved in filing an application for leave to file an appeal to the Supreme Judicial Court of Massachusetts regarding "treatment" by my healthcare providers. This matter involves, among others, lack of informed consent and human experimentation involving the "hazardous" agent Lupron (designation of hazardous being made by the National Institutes of Health and Occupational Safety and Health Administration).

On a public AOL board, alt.support.endometriosis, the following statements were posted on April 18, 2000 by author jksmac@aol.com:

"Lynne ... the EA [Endometriosis Association] doesn't have any official stance on Lupron. We have never recommended any treatment as people respond to each in so many different ways. This is not to say that we are not aware of the complaints of serious complications that some people have reported. We are aware and of course we are very concerned. Feel free to call and share your concerns. ... to speak to this point about the EA accepting money from TAP, I for the life of me cannot understand why so much time and energy is spent getting on the EA's case about this. The EA does not recommend that anybody take Lupron. That is fact pure and simple. ... No one is pushing Lupron. It's time to move on to more constructive matters at hand like finding a cure for endo (that takes a lot of money) and helping women cope with this disease (support and education take money too). ... You might not agree with the EA taking a neutral stance on Lupron (at the moment) but there are many many women who have been helped by taking this drug. Is the risk too high? Personally, I think maybe so, but you would also have a huge fight on your hands if you tried to take Lupron away ... Janet (jksmac@aol.com)."

I am hoping that you'll take a moment, or perhaps a few moments, to evaluate, or re-evaluate, as the case may be - and to help me and many many others as well.

Having personal knowledge of the extent of adverse, lingering, reactions to lupron not only to myself but to so many others, I am seeking a statement from the Endometriosis Association to clarify the above statements, and to request a supportive testimonial from you regarding the awareness that the EA has regarding "complaints of serious complications that some people have reported."

"Neutral[ity] ... at the moment", I would presume, would yield a supportive statement regarding the extent of complaints and illness the EA has been made aware from women following exposure to lupron, identification of the lack of informed consent involved, as well as the names of physicians who are addressing the care these lupron victims need (medically and legally), and the names of attorneys who are providing legal advocacy and representation. Since no one appears to have any luck with the latter two, I don't expect you to perform miracles here - but can hope so none the less! But I certainly would expect that you would be able to provide testimonial to the following:

- lack of informed consent involved with lupron, specifically to its hazardous nature and the alleged mechanisms of action

- a summarization of the complaints the EA has received from members (or non-members!) regarding post-lupron illness, including the date of initial awareness of EA of post-lupron problems

- a summarization of the advice the EA offers to women complaining about their experience and health, and specifically addressing where these women can go for medical care for their lupron-related (rather than endo-related) problems

- whether you or the EA have knowledge of any other litigation involving lupron (either represented by counsel or pro se)

- whether you or the EA have knowledge of any studies being conducted *on* victims of lupron to evaluate the post-lupron effects (and if so, who is conducting these studies)

- whether any MD that the EA associates with (past or present) ever voice(d) any concern about the serious health problems women complain about during and following lupron (i.e. including, but not limited to, neurological difficulties, memory loss, immune system abnormalities, cardiac arrhythmias, death)

- if any MD that the EA associates with (past or present) *has* voiced any concern, whether that individual or group has *ever* testified on behalf of a lupron plaintiff

- and if any MD that the EA associates with (past or present) has voiced any concern about the serious health problems women complain about during and following lupron, would this MD be willing to testify in any current or future litigation? (As I write there are several ongoing, besides mine).

If the EA can provide any further information or direction regarding where victims of lupron can go to in an attempt to access medicolegal advocacy following the use of lupron, I would be very appreciative. All lupron victims would be very appreciative.

I'm going to forward my public post regarding this issue, to provide further illustration of this matter for you, and I would ask that you note I have a deadline of 4/29/00 (therefore I will also publicly post on alt.support.endo and request someone aware of your email addy can forward asap) in which I should receive any comments for my lawsuit. I hope that you are able to assist me to bring attention to the plight of lupron victims, and are able to forward a timely response to me (email would be fine if time becomes an issue for you [as it is for me!]) for inclusion to the court.

I do wish to make it clear that the answers to the above questions have significance and importance beyond any timeliness for my court deadline or court decision in my situation, and so, if you or anyone at the EA are unable and/or unwilling to help me now and by April 29, 2000, I confess that I no doubt will ask these same questions again after ‘my' deadline.

Thank you for your neutrality, and for any supportive testimonial to the court that you might be able to provide, now or in the future.

Sincerely, Lynne Millican, R.N., B.S.N., Paralegal

Next message: anonymous@obgyn.net: "Re: Sad News , Please say a Prayer"
Previous message: anonymous: "Re: lupron may be toxic"
In reply to: anonymous: "Re: Just be Dianosed Today - Do not like doc's Treatment plan"
Next in thread: anonymous: "Re: Just be Dianosed Today - Do not like doc's Treatment plan"
Reply: anonymous: "Re: Just be Dianosed Today - Do not like doc's Treatment plan"

Women's Insurance Checklist from Auto Insurance Quote

use when must restrict search to only the endometriosis forum...
Enter search keywords:
	Returns per screen: Require all keywords: