- Posted May 15, 2011 by
This iReport is part of an assignment:
Mark your points of interest
- DES Info: A DES journey for a DES Granddaughter
- My Battle with Ovarian Cancer
- A DES Journey from a DES Granddaughter.. pain and loss..The DES Tragedy Continues
- DES Info: There has not been anything comparable to the impact of prenatal DES Exposure ~ The DES Tragedy
- 1971 New England Journal of Medicine ~ DES Article
DES Tragedy: 40 years later
DES Info has organized two *free* and exciting events, back-to-back.
*** On Tuesday, May 17, 2011 – “Nightside with Dan Rea“ will feature a DES segment during the 10 p.m. (US eastern time) slot.
Please call the show on May 17 @ 10 p.m. (US eastern time) and ask questions about DES. Dan Rea will be interviewing DES Daughter/Historian Andrea Goldstein and “Get Me Out” author Randi Hutter Epstein, M.D.
Those outside the US can listen to the show live (9 p.m. US eastern time) at the show’s website and call into the show at 00-1-617-254-1030.
Or, if you live in the US, simply call (617) 254-1030 *or* 1-888-929-1030.
Those in Massachusetts can listen to the show live online at its website or on WBZ 1030 (AM radio). Show your support for DES topics being featured by calling in! The more calls, the more likely that DES will be featured again!!
*** On Thursday, May 19, 2011 –Massachusetts General Hospital in Boston, Massachusetts will host a DES Symposium that’s free and open
to the public from 3:00 pm to 5:30 pm in the Ether Dome, Bulfinch Building, followed immediately by a reception from 5:30 pm to 6:30 pm.
The symposium will spotlight the experiences of DES Daughters as well as lessons learned about Embryogenesis, Fertility, and Carcinogenesis from in utero exposures.
The timing and location of this symposium have historical significance, as the DES cancer link was first made at Massachusetts General Hospital on April 22, 1971. In the late 1960s, there was an unprecedented appearance of rare cancer in young women. Clear cell cancer (CCA) – a rare cancer of the vagina – was diagnosed in an age group never before found to develop it. (Normally elderly women developed CCA.) There were eight such cases at Massachusetts General Hospital in Boston alone. One of the mothers raised the question of whether her daughter’s cancer might be connected to DES exposure in utero. Doctors discovered the DES link in 1971 and published their findings in the April 1971 issue of New England Journal of Medicine. News of the cancer cases made national headlines. However, the FDA did not act on this information until public pressure, including Congressional Hearings, forced the FDA to issue a warning about DES in November 1971. The drug was not banned for human use. DES was contraindicated for pregnancy by the FDA in 1972. It wasn’t until September 2000 that the FDA finally withdrew its approval of DES for humans.
Part I (3 – 4 pm) of the May 19, 2011 symposium will feature a DES Daughters’ Panel, moderated by Annekathryn Goodman, MD. The DES Daughters’ Panel will include:
- Andrea Goldstein, RN – DES daughter and DES activist since 1978; recognized throughout the DES community as the historian for the DES issue.
- Caitlin McCarthy – DES Daughter and screenwriter of WONDER DRUG (www.wonderdrugthemovie.com), an award-winning screenplay about the DES drug disaster (currently seeking financing).
- Cheryl Roth – DES daughter who does not want the DES tragedy forgotten. She is interested in ensuring that future generations who may be affected by the ingestion of the drug by grandmothers, great-grandmothers, etc. have knowledgeable physicians to treat them.
Part II (4 – 5:30 pm) will be the Scientific Session, moderated by John Schorge, MD. Speakers and topics will include:
- Michael Greene, MD (Division of Maternal Fetal Medicine) – History of the use of DES in pregnancy.
- Robert Young, MD (Department of Pathology) – Pathologic changes in the female reproductive tract after in utero DES exposure.
- Thomas Toth, MD (Division of Reproductive Endocrinology and Infertility) – The structural changes in the uterus and cervix and implications for fertility after in utero DES exposure.
- Marcela Del Carmen, MD (Division of Gynecologic Oncology) – Clear Cell Carcinoma of the vagina in DES exposed women.
- Annekathryn Goodman, MD (Division of Gynecologic Oncology) –Endocrine disruptors and the potential molecular basis of carcinogenesis DES exposure.
DES (diethylstilbestrol), a toxic and carcinogenic synthetic estrogen, was prescribed to millions of pregnant women for decades: from 1938 until 1971 (and in a small number of cases for several years thereafter) in the United States; and until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World. The currently proven effects of exposure include a rare vaginal cancer in DES Daughters; greater risk for breast cancer in DES Mothers; possible risk for testicular cancer in DES Sons; abnormal reproductive organs; infertility; high-risk pregnancies; and an increased risk for breast cancer in DES Daughters after age 40. There are a number of other suspected effects, including auto-immune disorders, but many of these effects are still awaiting further research.
For decades, drug companies claimed DES prevented miscarriages and problem pregnancies. It was sometimes given as an injection, but primarily it was prescribed in pill form. Never patented, DES was marketed under 200 different names, although the majority of the drug was actually produced by Eli Lilly. DES was sometimes even included in prescription prenatal vitamins.
No controlled studies were ever conducted by the drug companies to determine the effectiveness or safety of DES for use during pregnancy, even after some scientists started questioning its efficacy in the 1950s. As early as 1953, research revealed that DES did not work – that DES actually brought about higher rates of premature birth and infant mortality – yet DES continued to be prescribed to pregnant women for decades.
Researchers are now investigating whether DES health issues are extending into the next generation, the so-called DES Grandchildren. As study results come in, there is growing evidence that this group has been adversely impacted by a drug prescribed to their grandmothers.
To this day, not one drug company has ever apologized or accepted responsibility for the DES tragedy. Nevertheless, they have paid millions in verdicts and out-of-court settlements to DES Daughters and Sons who suffered injuries from their exposure.
On February 22, 2011, US Senator John Kerry (D-MA) and US Senator Scott Brown (R-MA) received a 3-page response from the FDA, per their joint letter about a DES apology. The FDA’s letter did not contain an official apology from the federal government for the DES drug disaster. However, it acknowledged the devastating health consequences of DES, explained FDA initiatives to prevent future drug disasters, and talked about DES as a “tragedy.”
The FDA closed the letter by writing, “We hope that our new tools for identifying, monitoring and mitigating drug risks will prevent other tragedies like those brought out by the widespread use of DES. We are committed to providing the public with timely and accurate drug safety information and we recognize the critical responsibility that the FDA has to protect the safety of the public’s health.”
For more information about DES, please visit: http://desinfo411.wordpress.com.