TWITTER ABOUT DES

Looking for a bit of news on the side about DES?

Go to TWITTER @DESAustraliaNSW

MAKING OUR VOICES HEARD

The Consumers Health Forum of Australia's October issue of Health Voices has an article about DES on page 10 & 11. The article When medicines harm: the DES experience and how we can avoid it happening again gives a chilling account of the DES story, the lessons from the tragedy and the Australian response in the aftermath.

Scroll down to page 10 & 11 at:

https://www.chf.org.au/pdfs/chf/Health-Voices-October-2011.pdf

40th ANNIVERSARY OF THE DES CANCER FINDING

On You Tube US researcher, Dr Arthur Herbst provides a most interesting account of the finding of the DES link to cancer. This footage commemorates Arthur L. Herbst and the 40th anniversary of his landmark DES paper. Your doctor might also be interested in this. Here is the link:

http://www.youtube.com/watch?v=doSpbfDcJHc

THE BIG PICNIC.....
A picnic is planned to help commemorate.
http://desdaughter.wordpress.com/2011/11/22/des-australia-social-event/

News to take to your Doctor

In the October 6 New England Journal of Medicine (NEJM) US Epidemiologist, Dr Robert Hoover and his colleagues estimated the absolute risks of 12 health outcomes associated with prenatal exposure to DES, including certain cancers and reproductive problems such as infertility, ectopic pregnancies and preterm births.

Your doctor may be interested in:

• After DES: Tracking the Harms of a Prenatal Drug Exposure, NCI Cancer Bulletin, Oct 18, http://tiny.cc/h2ysv

• The DES Story: Lessons Learned, Utube at http://tiny.cc/ji9f4 Dr Robert Hoover discusses the new study and points out that in his experience, young doctors and medical students are unaware of DES.

• DES exposure leads to many morbidities, Australian Doctor, October 14, page 1.

• DES cancer link sparks campaign call, Sydney Morning Herald, October 6, http://tiny.cc/8rcgb

Caitlin up for US Medal

WONDER DRUG screenwriter Caitlin McCarthy has been nominated for the 2011 Presidential Citizens Medal (www.whitehouse.gov/citizensmedal). Due to Caitlin's efforts and work with the offices of Senators Kerry and Brown, the FDA finally acknowledged DES as a "tragedy" in 2011 after 40 years. Caitlin also champions DES awareness through her screenwriting, blogging, activism, public speaking, and government/media relations.

The Presidential Citizens Medal is the second highest civilian award in the United States, second only to the Presidential Medal of Freedom. The winners will be announced before the end of 2011 - but as they say, it's an honor to be nominated.

If people would like to express their support of Caitlin McCarthy's nomination for a 2011 Presidentail Citizens Medal for her work on the DES issue, please Tweet the White House (@whitehouse) and/or send a message via this webform to the White House: www.whitehouse.gov/contact

Media Release: STUDY EXPOSES LIFETIME HEALTH RISKS CAUSED BY ANTI-MISCARRIAGE DRUG

Up to 185,000 Australian women have increased risk of cancer, infertility, stillbirth and early menopause

Sydney, 6 October 2011: A new study released today in the New England Journal of Medicine* has revealed women exposed to anti-miscarriage drug DES in utero are at an increased risk of at least 12 adverse health conditions - in some cases up to three-times that of other women.

An estimated 185,000 women across Australia have been exposed in utero to this drug.

The study of medical records found women exposed to DES in utero are at double the risk of suffering infertility, at three times the risk of preterm delivery and almost twice as likely to develop breast cancer at 40 years of age or older.

DES Action NSW says this study proves what has been implied by anecdotal evidence. Australian women who have suffered one or a combination of these health conditions should speak to their doctors if they suspect their mother took DES or Stilboestrol while pregnant.

"DES exposed women require special medical care, including DES examinations and mammograms annually. This study must act as a wake up call for health authorities to promote information about DES directly to Australians in public health programs. Too often we hear from people, who for decades have been oblivious to the harmful effects of DES, the fact of their exposure and the care they need," says Carol Devine, coordinator of the DES Action group.

The study combined data from three studies in the 1970s with continued long-term follow-up of more than 4,600 women exposed in utero to DES, compared to unexposed women.

The study reports that the drug, developed in 1938, was found to be of no health benefit in four clinical trials conducted in the 1950s. Despite this, it was marketed and prescribed in many countries around the word, including Australia, until up to 1971 and sometimes beyond.

"Many women may not know they were exposed to DES, as their mothers may not recall taking the drug and medical records can go amiss over time. But if women do have a history of these health conditions, they should ask their doctors for an assessment of DES exposure probability and possible referral to a DES knowledgeable specialist," says Devine.

Women should contact DES Action NSW for more information about DES by phoning 02 98754820 or visiting www.desnsw.blogspot.com

LIFETIME RISKS OF A DES DAUGHTER

- 2.28 times the risk of cervical intraepithelial neoplasia, grade 2 or above
- 2.45 times the risk of stillbirth
- 2.35 times the risk of early menopause
- 1.64 times the risk of spontaneous abortion
- 3.72 times the risk of ectopic pregnancy

-END-
*New England Journal of Medicine 365: 14 October 6 2011 nejm.org

For more information, contact:

Carol Devine, DES Action Australia-NSW

E: c_devine@bigpond.net.au

P: (02) 98754820

Opportunities knock!

Caitlin McCarthy has written about her DES experience for the US Readers'Digest Life Story competition. Her winning will mean showcasing the DES cause world-wide. You can help by voting for Caitlin's story EVERY DAY until November 15th at

http://apps.facebook.com/yourlifecontest/content/surviving-drug-disaster

Countries outside USA can also share their story by sending it to fb@ReadersDigest.com and it may be given recognition on Readers'Digest's wall. Please submit your DES story in 150 words today!

Carol Devine has submitted an international entry. You can vote for Carol's story every day up to November 15th at http://apps.facebook.com/yourlifecontest/content/unexpected-lifeline

DES BREAST CANCER CASES IN US COURT

53 DES daughter breast cancer cases are now before US District Court for the District of Massachusetts, Boston, for a ruling on the scientific validity of evidence implicating DES with breast cancer in DES daughters after age 40.

These 53 women are being represented by Aaron M. Levine & Associates. Dr Hans-Olov Adami, former Chair of the Havard School of Public Health, Department of Epidemiology and a world-renowned physician and epidemiologist has testified for the case. In relation to the research by Dr Julie Palmer, he stated: " so the bottomline of this is it provides strong evidence that DES exposure increases the risk, and that the risk increase starts sometime around age 40 and then grows as women get older."

More information can be found in the article:
http://celebritiesindisgrace.wordpress.com/2011/09/20boston-making-des-cancer-history-once-again-by-diana-bianchini/

Watch this space for the outcome of this legal case. Case proceedings will be continuing possibly through to November and the trial is open to the public. "Faces to the cases" are needed to help support the 53 DES daughters in this historic legal case. If in the vicinity of Boston USA and you can help in this way, here are some details:
www.desaction.org/documents/BreastCancerSuitInfo_000.pdf

FOR MEDIA

Media Alert
23rd May 2011
740,000 Australians must ask their mother a lifesaving question
Health risks go undetected as local residents could be exposed to DES

Australian women and men are being urged to ask their mothers and grandmothers if they were prescribed the anti-miscarriage drug DES (diethylstilboestrol or "stilboestrol") as part of this year's DES Awareness Week (June 1-7). This year marks the 40th anniversary of the first DES linked cancer finding, and yet there are up to 740,000 Australians affected by this drug, many of whom are still unaware of their exposure and its health risks.

Asking this one simple question could save lives. Many Australians still have not heard about DES, an anti-miscarriage drug prescribed in good faith to pregnant women between 1940 and 1971 (and sometimes beyond).

Carol Devine, DES Action NSW coordinator and a DES daughter, says it's time now for openness about DES and for this information to be at the forefront in Australian health promotion.

"We constantly hear from people affected, who have only recently learned their health problems have been attributed to DES. Raising conversation about DES to your family and friends is really important. It will help spread the message of the proper care for DES exposure and could even help save the life of someone close," she said.

Problems first arose with this drug in the 1970s. It is now known to increase risks in certain cancers (breast, cervical and vaginal) and cause reproductive problems in those women given DES and their children of that pregnancy.

Dr Jules Black, DES knowledgeable obstetrician and gynaecologist and medical spokesperson for the DES Action group, urges women, who have health histories suggestive of DES exposure, to seek DES information and to visit their doctors.

"Many people remain unaware of their exposure to DES and yet, it is vital that people affected get the specialised health care they need. If you have experienced recurrent miscarriages, t-shape uterus, ectopic (tubal) pregnancies or infertility, it may be a result of exposure to DES," says Dr Black.

Dr Black advises it is important that DES exposed women get the proper screenings to detect cancers early and women exposed to DES in the womb have "high risk" care during their pregnancies. Women can ask for an assessment of DES exposure probability and possible referral to a DES knowledgeable specialist.

Men exposed to DES in the womb can be affected too, with increased risk of genital abnormalities. They should do self-checks regularly and report anything unusual to their doctors.

The estimation that up to 740,000 DES exposed Australians has been calculated from available data. The government has refused to promote DES information in public health programs due to concern this may create community anxiety. This stance by government underestimates and insults the intelligence of Australians, especially where the community has become more health aware and educated over the past 40 years since the problem with DES was first identified. DES Action NSW has recently taken this matter to the Australian Human Rights Commission.

People can find out about DES at www.desnsw.blogspot.com

The website has a listing of DES knowledgeable health care providers in Australia. Information and support is available by phoning DES Action NSW 02 98754820.

ARE YOU DES EXPOSED?

If you were born between 1938 and 1971 (and in some cases beyond), here is how to find out:

• Ask your mother if she recalls having a previous miscarriage or being given medications while pregnant. DES was most commonly prescribed to prevent miscarriage and for pregnancy complications such as bleeding. It was also known as "stilboestrol". If you are unable to ask your mother, your own health history may offer clues - especially if you have had a series of reproductive problems such as cancer, infertility, or endometriosis. Progesterone, another hormone, may have also been used to prevent miscarriage and research has not shown problems with this. However, if your mother remembers only being given "hormones" during pregnancy, it is worthwhile having a specialist check-up, informing the doctor your mother was given hormones during pregnancy.
  
• Do your research. If you think you may have been affected by DES, ask your doctor for more information, and visit www.desnsw.blogspot.com
  for support and resources.
• Be prepared. Taking DES information along to appointments is very helpful, so that health professionals understand that special cancer preventive care for DES exposed women is important and should be life-long.
  
• You are not alone. In the USA, screenwriter and DES activist, Caitlin McCarthy, only learned of her in utero DES exposure in 2005. She is poignant in her internet message for people to overcome feelings of embarrassment and to start talking about DES. Caitlin can be heard at
  

http://bcove.me/yxix90vn

• Think about your health. Health problems associated with DES for DES daughters include risk for miscarriage and ectopic (tubal) pregnancy, premature delivery, infertility, and reproductive tract cancers, primarily of the vagina and cervix. DES sons are at increased risk for urogenital conditions such as undescended testes and epididymal cysts (benign growths around the testes).
  

If you are DES exposed or suspect that you are:

• Relay this to your health care provider. DES exposure is as important to your health history as conditions like diabetes or heart problems.
• Mark your diary to have your special DES health checks.
• Keep updated and talk to your family about DES. Overseas research about DES is ongoing, so it is important for you and your family to keep informed.
• Seek support if needed

-ENDS-
Graphic available
For more information, interviews or personal stories, contact:
Carol Devine
E: c_devine@bigpond.net.au

P: (02) 98754820

DES Awareness Weeks - The way to go!

The DES Awareness Week event provides an instant angle on the DES story for journalists and the public attention generated helps DES exposed people who otherwise would not have known about the harm of DES and the special health care they need. For the past six years DES Action NSW has held DES Awareness Week June 1-7 on government health event calendars. These events have successfully raised awareness of DES Australia-wide and helped many DES exposed people. We know the effect of the DES Action group's unfunded events would be no match success-wise to the promotion of DES information in government public health programs. However, until such time that government action occurs, the opportunity that DES Awareness Week provides should be taken. Here is a recent article:

http://www.theherald.com.au/news/local/news/general/hunter-cancer-time-bomb/2193686.asp

By the way, we always need help from Australian volunteers in sharing their DES stories for journalists. If you can help, please phone 02 98754820.

We have great news too that DES Awareness Week is happening now in Massachusetts USA for July 17-23. Here is US article:

http://www.telegram.com/apps/pbcs.dll/article?AID=%2F20110720%2FNEWS%2F107209927

This is the way to go and let there be more!