DES Daughters

What is a DES Daughter? Who are they?

DES Daughters are all the women born between 1938 and 1978 who have been exposed in utero to the anti miscarriage drug and man-made estrogen Diethylstilbestrol (or DES in short) Diethylstilbestrol DES Google+ Page icon. They live in the U.S.A., Canada, Australia, Europe and all corners of the world where the drug was prescribed decades ago during pregnancy.

DES Daughters during a DES Symposium image
DES Daughters during the MGH Boston 2011 DES Symposium – Andrea Goldstein, Caitlin McCarthy, Cheryl Roth.

Flickr DES Diethylstilbestrol’s Photostream

In a bid to further raise awareness about the DES issues and reach a wider audience, we’ve created a new DES flickr page. It includes photos of DES events such as the recent DES Symposium at Massachussets General Hospital in Boston, DES adverts, pills, tablets and bottles, DES brochures and newsletters, DES graphs, press cuttings and much more.

flickr DES Diethylstilbestrol's Photostream image
NEW: flickr DES Diethylstilbestrol's Photostream

flick is an online photo management and sharing application. Its primary goals are to help people make photographs available to those who matter to them, and to enable new ways of organizing images. It offers the perfect platform to share photos from around the world.
But flick is one of those ideas that depends on interconnectivity.

We would like to invite all DES support groups and activists to collaborate to this project by contributing photos to the new Diethylstilbestrol flickr page. By sharing as many images as possible we can create a comprehensive source of DES related photos and really show how far and wide the DES issues are affecting people’s lives.

By “Geotaging” the DES photos we can highlight on the DES Diethylstilbestrol Map where the DES community is taking action to break the wall of silence around the DES issues, as well as where the DES health concerns are being ignored.

Join us on flickr:

  1. Check out the DES Diethylstilbestrol Photostream and Map
  2. If you already have a flick account, add us as a contact.
  3. Email your photos to info@diethylstilbestrol.co.uk with a short description and title.

DES Diethylstilbestrol flick page was created and is administered by Diethylstilbestrol, Journal of a DES Daughter.

If you haven’t done it yet, you can also join us on facebook and/or twitter. Our facebook community is the perfect medium to share views, photographs and DES stories. Follow us on twitter and keep up to date with everything Journal of a DES Daughter is doing.

Help us break the wall of silence around the DES issues by joining these social networks and encouraging your friends to do the same.

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.

International Women’s Day

Celebrate DES mothers & daughters who advocate for all DES victims!

Tuesday 8th March 2011 marks the centenary of International Women’s Day (IWD). Celebratory events are taking place across the world marking women’s achievements and contributions to society.

Since 1911, International Women’s Day offers the perfect opportunity to appreciate the women who have the biggest influence in our lives whether they are politicians who are a making difference in our local community, celebrities we admire, or simply mums and grandmas who balance work and home beautifully or to whom we look up to.

This Tuesday 08th March, why not make International Women Day 2011, a day to celebrate DES mothers and DES daughters.

Join “Journal of a DES Daughter” in celebrating the courage of all the women who find the strength to fight every day against the devastating side effects of diethylstilbestrol and acknowledging the tremendous work of those who dedicate their lives to advocate for the victims of the DES tragedy.

Join the International Women’s Day celebrations by:

  • Attending the facebook event “Journal of a DES Daughter – International Women’s Day”
  • Changing your facebook status to read: “Today I celebrate International Women’s Day and the DES mothers and daughters who advocate for all the DES victims”.
Val Pat Cody DES Action USA co-founder image
Val Pat Cody, health activist and DES Action USA co-founder - Photo courtesy of DES Action USA

Let’s celebrate women such as Val Pat Cody (health activist and co-founder of DES Action USA who sadly passed away in September 2010), Anne Levadou (President of DES Network France), Andrea Goldstein (DES activist and DES historian), Carol Devine (founder and coordinator of DES Action Australia – NSW) and Caitlin McCarthy (award winning screenwiter currently working on Wonder Drug the true story of DES); as well as all the activist women who contribute to raising awareness about DES exposure and speak out on behalf of all the DES victims.

These women who give their lives to help others are a true inspiration to me and I am sure to many of us. Carol Devine comments on her blog: “Pat was a remarkable women. During the process of our establishing DES Action Australia-NSW, Pat was a great mentor and friend. If not for her invaluable ideas and encouragement, the group may not have lifted off the ground. She will be very much missed“.

Join the “Journal of a DES Daughter International Women’s Dayfacebook event.

Happy International Women’s Day to all DES mothers and daughters!

The FDA is Lying by Omission

The Food and Drug Administration claims historical step with DES diethylstilbestrol

In 1971, the US Food and Drug Administration (FDA) issued a warning that diethylstilbestrol (DES) was unsafe for pregnant women. Exposed in the womb to DES, the daughters developed a rare form of vaginal cancer and suffered from many more DES side effects. The FDA changed the labelling on this hormone to warn women against taking this drug during pregnancy.

US Food and Drug Administration image
US Food and Drug Administration, caring about women’s health (not!)

40 years later, on February 22nd 2011, the FDA acknowledged the DES “tragedy”.

Caitlin McCarthy, an award winning screenwriter currently working on the issue of DES, emailed Jeanne Ireland who signed the FDA’s letter of apology, 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”:

Here’s what the FDA emailed back:

Dear Ms. McCarthy,

Thank you for your email. Please be assured that we acknowledge the tragedy of DES. However, it marks an important historical step when FDA took action to stop the use of DES in pregnancy, and to limit its use. This was a real benefit to the health of women and their children. You will notice other milestones described on our website that detail FDA’s authority in response to major tragedies such as Elixir Sulfanilamide,Thalidomide, and the Dalcon Shield. We do not consider the highlighting of these milestones as accolades, but rather learning milestones for the medical community, the public and the world. They serve to make FDA even more vigorous and proactive in implementing strategies to identify products that may have hidden cancer causing potential or serious long-term health problems. In light of this historical record our description will remain on the FDA/OWH website.

Sincerely,

Marsha B. Henderson
Assoc. Commissioner for Women’s Health (Acting)
US Food and Drug Administration

Below is what Caitlin sent Ms. Henderson, along with the two women she copied on her email to her (Terrie Crescenzi and Deborah Kallgren). Note she also included Jeanne Ireland.

You are clearly hoping that the general public thinks a “contraindication for pregnancy” was a “real benefit to the health of women and their children.” Hardly. BANNING the toxic, carcinogenic DES would have been the “real health benefit.” The FDA is lying by omission.

DES should have been banned. There were some doctors in the US who continued to prescribe it after the FDA’s “important historical step,” up until 1980 in some places. And DES continued to be prescribed until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World.

Some advice: When writing to DES victims moving forward, don’t use phrases like “learning milestone.” That is dismissive of the currently proven effects of exposure which 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’ll be sure to share the FDA’s response with others, seeing how you’re sending this canned response out to others who asked the FDA to remove the offensive DES “milestone.”

Thanks for caring about women’s health (not!).

The Food and Drug Administration email is shocking! I was born in France in 1971 where the DES drug continued to be prescribed until 1977 not only to my Mum but to more than 200,000 women … Where are the health benefits of their “action” for the DES mothers, DES daughters and sons born in France and in many other countries after the warning was issued? DES should have been banned.

A big THANK YOU goes to Caitlin for speaking out on behalf of all the DES victims!