DES Cancer Link 40th Anniversary

The DES (Diethylstilbestrol) Drug Disaster, 40 Years Later

Below is a guest post from DES Daughter and WONDER DRUG screenwriter Caitlin McCarthy.

The DES Tragedy Is Far From Over

By Caitlin McCarthy

Caitlin McCarthy cover page Boston Globe image
In the April 18, 2011 issue of The Boston Globe, WONDER DRUG screenwriter Caitlin McCarthy appeared on the cover and in the feature story about DES

April 22, 2011 marks the 40th anniversary of the DES cancer link being made at Boston’s Massachusetts General Hospital.  DES (diethylstilbestrol), a toxic and carcinogenic synthetic estrogen, is considered the world’s first drug disaster. It 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.

I’m a DES Daughter who was born at the tail end of the tragedy in the U.S. My mother was unknowingly prescribed a prenatal vitamin which contained DES. I didn’t discover my DES exposure until 2005, when a doctor made the connection during a colposcopy. How scary is that?

What’s even scarier is that I’m not alone. Around the world, there are thousands – maybe even millions – of people walking around today, totally unaware that they, too, were exposed to DES. All of these people are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.

In an effort to raise awareness about DES, I wrote a feature film screenplay entitled WONDER DRUG. Set in Boston, Massachusetts, WONDER DRUG interweaves the lives of a Big Pharma executive, feminist doctor, and thirtysomething newlywed across different decades. The script has won awards or received nominations in over 20 international film festival screenplay competitions and labs, including selection as an Alfred P. Sloan Foundation script for the prestigious Hamptons Screenwriters Lab, and a live staged reading of select scenes at the 15th Annual Hamptons International Film Festival, sponsored by the Sloan Foundation and starring Steve Guttenberg (THREE MEN AND A BABY) and Alysia Reiner (SIDEWAYS). Acclaimed independent director Tom Gilroy (SPRING FORWARD) has expressed an interest in directing WONDER DRUG. All we need now is financing. (Producers can contact me via my official website: www.caitlinmccarthy.com.)

I also worked jointly with the offices of US Senators John Kerry (D-MA) and Scott Brown (R-MA) on obtaining an apology from the FDA for the DES drug disaster. That effort was first publicized on acclaimed author Elizabeth Searle’s website, and later picked up by renowned media outlets such as The Huffington Post.. (Thank you, Diana Bianchini, for writing the HuffPo piece!).

The FDA declined to apologize, but did send a three-page letter to Senators Kerry and Brown acknowledging DES as a “tragedy” on February 22, 2011. Upon reading the FDA acknowledgement, I immediately emailed Jeanne Ireland (who signed the FDA’s letter), asking the FDA to remove DES from its webpage touting DES as one of its milestones in “100 Years of Promoting and Protecting Women’s Health.” Jeanne Ireland didn’t respond to me. Instead, she palmed me off on Marsha B. Henderson, Associate Commissioner for Women’s Health (Acting) for the FDA. (Check out the communication between Caitlin and Ms. Henderson by reading the post: The FDA is lying by omission).

To this day, the offensive item about DES remains on the FDA’s website. And 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.

I am grateful that the 40th anniversary of the DES cancer link has triggered a flurry of press coverage.  The Boston Globe recently ran a feature story about concerns for third generation effects; WCVB-TV Boston’s “Chronicle” newsmagazine aired a DES segment; Reuters published an item about DES Grandsons; New England Journal of Medicine ran an article about living with DES exposure; and Psychology Today features a story about remembering DES’s “tragic chapter in American childbirth.” Even the old “Lou Grant” TV episode about DES is making the rounds on Hulu.

On April 25, 1985, Ronald Reagan was the only US President to proclaim a National DES Awareness Week. No other president has ever done that. Why? DES is far from a dead issue.

I will continue my fight to raise awareness about the DES drug disaster. DES victims are the canaries in the coalmine when it comes to synthetic estrogen. The reproductive abnormalities, cancers, and infertility we deal with daily show what could happen to the human race if we don’t employ the precautionary principle. It suggests we act to protect public health when there is credible evidence of harm, rather than wait for absolute proof. What we do now clearly has an impact on future generations. Please join this fight with me.

Caitlin McCarthy ImageABOUT CAITLIN MCCARTHY:

Caitlin McCarthy received her Master of Fine Arts in Creative Writing from Emerson College, which is ranked by U.S. News & World Report as one of the best graduate programs in the country.  An award-winning screenwriter at international film festivals and labs, Caitlin has a screenplay project in development: RESISTANCE with Populus Pictures and director Si Wall (SPEED DATE; THE DINNER PARTY).  In addition to screenwriting, Caitlin serves as an English teacher at an inner-city public high school. Prior to education, Caitlin worked in public relations, where she fostered relationships with the press and crafted messages for companies that were delivered worldwide.

DES (Diethylstilbestrol) Symposium

It is now 40 years since the connection between DES exposure and Cancer in DES daughters was discovered. On May 19th 2011, the Massachusetts General Hospital (MGH) in Boston, Massachusetts, USA where this connection was first made, will be hosting a DES (Diethylstibestrol) symposium. DES daughters will share their experiences and discuss with DES specialists the lessons learned about embryogenesis, fertility, and carcinogenesis from in utero exposures. The DES symposium is free and open to the general public. Please show your support to this event by attending or spreading the word.

DES Diethylstilbestrol Symposium Massachusetts General Hospital Boston image
DES (Diethylstilbestrol) Symposium Massachusetts General Hospital 19th May 2011

The timing and location of the DES (Diethylstilbestrol) symposium have historical significance. In the late 1960s, there was an unprecedented appearance of a rare vaginal cancer in young women. Cases of Clear Cell Adenocarcinoma (CCA) were diagnosed in an age group never before found to develop it. A DES mother raised the question of whether her daughter’s vaginal cancer might be connected to DES exposure in utero. Doctors confirmed the link between DES and cancer in 1971 and published their findings in the April 1971 issue of the New England Journal of Medicine. It is at the MGH that the DES cancer link was first made on April 22, 1971.

In 2011, in the USA and in many other corners of the world, diethylstibestrol continues to affect the lives of not only the DES mothers who were prescribed the carcinogenic drug, the lives of their daughters and sons who have been exposed in utero, but also the lives of their grandchildren. And unfortunately, cancer is not the only health issue that has been linked to DES since 1971. The DES health concerns are still as relevant today as they were in the late 1960’s. Research is still needed, and more needs to be done to ensure the DES victims are not forgotten. The DES (Diethylstilbestrol) symposium is an important event which will contribute to raise awareness of the devastating long-term side effects of synthetic hormones such as diethylstilbestrol.

DES (Diethylstilbestrol) Symposium

WHEN
Thursday 19th May 2011

WHERE
M
assachusetts General Hospital in Boston, Massachusetts – Masa Ether Dome, Bulfinch Building

TIME
from 3:00 pm to 5:30 pm
Reception from 5:30 pm to 6:30 pm in the Ether Dome, Bulfinch 4.

PROGRAMME

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 events such as the DES symposium are a great acknowledgement that Di-ethyl stilbestrol is not something of the past. The DES tragedy is far from over so please help support this event by attending or spreading the word. The Diethylstibestrol DES symposium is free and open to the general public.

This event is sponsored by Vincent Obstetrics and Gynecology.

Sources: DES Info.