All about Lupron – what you don’t know can harm you

LUPRON VICTIMS HUB

LINKS

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12-12-19 ... CALL TO ACTION for Lupron Victims - see 'Media page'.

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Petitions to US Agencies, US Congress, and Massachusetts (MA) Health Care Committee to Investigate Lupron:

1994 Request to Senator Kennedy to investigate lupron (made by Lynne Millican)

1997 Request to MA Health Care Committee for a moratorium on and investigation into lupron (made by Lynne Millican [see last page])

1999 Request to all Senators for a Congressional Hearing to Investigate lupron (made by Lynne Millican)

2002 Request to HELP Committee to investigate lupron (made by Lynne Millican [see page 7])

2003 Request to Congress to Investigate lupron (made by Lynne Millican [see page 44])

July 2019 'Call to Action' petition to US Surgeon General Adams regarding "the harmful hormonal and irreversible surgical interventions that are being performed on gender-nonconforming children without one single long-term study". (Petition made by the Kelsely Coalition, petition closed July 2019, and was presented to US Surgeon General Adams.)

10-23-19: Texas Rep. Chip Roy writes letters to Attorney General Barr and Directors of ONDCP and NIH calling for research on gender dysphoria 'treatment'.

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2008: The National Women's Health Network (NWHN) "believes that the [FDA] agency should review the safety and efficacy of Lupron® for both its approved and off-label uses. ... a registry should be established to monitor the drug’s effect on women, as well as on any children exposed to Lupron® ... In order to halt this drug from causing damage to even one more woman's health, a concerted effort of women, physicians, health officials, researchers and media is needed. The decision to raise public awareness so that other women could be spared the physical, emotional and financial burdens Lupron causes would truly be in the interest of women’s health around the country. The people who are considering taking Lupron are the ones who have the right to know that they are risking a lifetime of symptoms that may cost them their jobs, spouses, savings and quality of life." (emphasis mine)

2012: 'Our Bodies Our Selves' (OBOS) prepares 'Educate Congress - Fact Sheet': "One drug commonly used to suppress ovarian function before multiple egg extraction, Lupron (leuprolide acetate), has not been approved by the FDA for this use. There are many anecdotal reports of harm to women, but without requiring long-term monitoring, there is no way to track these reports systematically. There is also important emerging data about the health of babies and children born as a result of ART [assisted reproductive technology] procedures. This data needs to be tracked better as well."

1999 FDA Review of Lupron's safety

See 'Media page' for stories in media (TV, print, internet) on Lupron's risks and adverse effects.

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Lupron Surveys:

1993 through 2000: National Lupron Victims Network (NLVN) had collected 10,000+ surveys from men, women, and children, and had vowed to make the survey results public. By the year 2000, the NLVN had 'disappeared', and survey results never published. (See NLVN page for further info.)

1994: HERS Foundation conducted a questionnaire "dealing with the use of Lupron/leuprolide for the treatment of fibroids, endometriosis and other gyn conditions". Per Nora Coffey, the information was quantified but never published.

2013: Chandler Marrs, PhD, Lucine Biotechnology, 'Hormones Matter' (HormonesMatter.com) is conducting a 'Lupron Side Effects Survey' . See Lupron Side Effects Survey Results: Part One (09-01-16).

Feb. 2019: Multi-drug (including Lupron/GnRHas) "Post-Drug Syndrome Survey" launched and ongoing. See "Welcome" page for Lupron / GnRHa victims. See also Survey administrators' description of the Survey, with FAQs , as well as some background info on survey as provided in LVH's note to email contacts

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Online U.S. Lupron Petitions:

Lupron i-Petition (started by Emily Page-Steacy, 2004)

Petition2Congress to investigate lupron (started by Louise Griffiths, 2009)

Petition2Congress regarding label changes and to Ban lupron (started by Annika St. Germain, 2011)

Change.org Petition seeks to "lift the gag on unpublished lupron research" (started by Susan Clark, April 2016). For clarification purposes - it should be noted that the data from the endometriosis clinical trials have been published in several medical journals. However Dr. Redwine's independent analysis of these endo clinical trials' data (which was conducted in his then-capacity as the expert medical witness in 'Klein v. TAP, Abbott') revealed that the data recorded within these endo trials does not support the conclusions published in the journals and submitted to FDA for Lupron's 1990 endo approval. The data within the endo clinical trials is under court seal, which prevents Dr. Redwine's ability to publicize his startling and alarming independent analysis. It is the court seal which is the gag, and this court seal needs to be lifted, which would then allow Dr. Redwine to publicize his independent analysis as well as opening up this data for further validating analyses by others. ... In addition, pages related to this petition link state in May 2016 that "a new group of over 80 individuals banded together during the past week to obtain legal venue for class action against the manufacturer of Lupron, via Dr. Levin." Hopefully these individuals will be successful in obtaining a class action, however it should be noted that on 07-11-16 Dr. Alan Levin MD, JD verified that he "has nothing to do with this class action." These issues notwithstanding, I would urge signers of this petition to make clear in their comments that the court seal on the endo clinical trials must be lifted to allow Dr. Redwine's analysis to be publicized and to allow further independant analysis of these trials.

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Petition to European Medicines Evaluation Agency:

Enantone (Lupron) Victims ask for safety study by EMEA (made by Elena Pasca, 2010) - no longer online.

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French website: Victims of Enantone (Lupron), Decapeptyl

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Lupron reviews, stories, posts, comments:

BadDrug.net

Lawyers and Settlements - see comments

AskAPatient.com Lupron stories

Medication.com Lupron stories

PatientsVille.com Lupron stories

RxList.com Lupron stories

DrugRatingz.com - lupron has "poor overall rating"

Erin Brockovich has rec'd many hundreds of enquiries about lupron, but it appears she has removed her 'Lupron Side Effects' page., which had contained hundreds of stories and photos. (Archived page here.)

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Lupron Support / Message/Groups - stories:

Drugs.com - Lupron Support Group

Yahoo Lupron Victims Group

FaceBook - there are a number of Lupron groups on FaceBook

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Other Related Petitions:

2011: Petition for Human Egg Extraction Health Registry & for Warnings on Ads Seeking Egg Donors

Petition: All Trials Regestered / All Results Reported

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Research for any conflicts of interest:

Dollars for Docs - Has your doctor received Lupron (or other drug or device) money?

09-30-14: 'Detailing Financial Links of Doctors and Drug Makers' ... Pharmaceutical and device makers paid doctors roughly $380 million in speaking and consulting fees, with some doctors reaping over half a million dollars each, during a five-month period last year." Beginning on 9-30-14, all drug and device manufacturers whose product is covered under Medicare/Medicaid has to report any money provided to physicians or institutions (i.e., consulting fees, speaking fees, royalties, meals, travel reimbursement, etc.). Search database here. See also CMS homepage here. Currently, database contains only data for 5 months (August through December 2013).

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Rate your Doctor(s) at Vitals.com.

Rate your drug(s): Patient Safety Project, Share Your Story - http://www.safepatientproject.org/share_your_story.html

Learn more about your doctor(s) at www.healthgrades.com and/or www.rateMDs.com.

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Take Justice Back

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Search AERS (Adverse Event Reporting System) database

Search Canada Vigilance Adverse Reaction Online Database

Search Australia Database of Adverse Event Notifications.

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Find/email your Senator