DES Exposure Australia

MEDIA RIPPLE EFFECT NEEDED - from UK to OZ

2012-01-22T17:09:00.016+11:00

The UK newspaper The Independent (front page) today has raised awareness of the DES exposure problem for the benefit of UK's population. See:
http://www.independent.co.uk/life-style/health-and-families/health-news/thousands-of-women-could-be-at-risk-from-silent-thalidomide-6292889.html

This comprehensive article will no doubt encourage many DES-affected in UK, who have so far been unaware of the harm of DES, to seek information in helping prevent unfavourable health outcomes due to DES.

This article also highlights the latest US Court victory for DES daughters diagnosed with breast cancer and the possible legal opportunities for compensation by UK women so affected. Pleasingly, the article states that US DES lawyer, Aaron Levine, will travel to the UK in two weeks time to coordinate a hunt for the "DES daughters" in UK who have been unable to get compensation in British courts. There has been UK media follow-up on this:
http://topnews.us/content/245785-lawyer-hunt-des-daughters-uk

This interest by UK media has been sparked by the great work of Domino and supportive partner (Diethylstilbestrol, Journal of a DES Daughter). A ripple effect to reach and activate Australian media is needed...followed by the Australian "hunt for DES daughters".

NOTE: DES Action Australia-NSW appeals to all DES affected Australians to contact Australian media, newspapers, radio etc right now to tell them about the attention in US and UK, and the US court victory for DES daughters diagnosed with breast cancer.

Media Release: DRUG COMPANIES ORDERED TO NEGOTIATE SETTLEMENTS IN BREAST CANCER CASE

2012-01-20T15:10:00.003+11:00

Fourteen drug companies in the US have been ordered to begin mediation immediately to compensate 53 women who claim their breast cancers were caused by the anti-miscarriage drug diethylstilboestrol (DES). There are an estimated 740,000 Australian mothers, daughters and sons affected by the drug, which has been found to double a DES daughter's chance of developing breast cancer.

DES was manufactured and sold primarily from 1940 to 1971. It has been linked to rare reproductive cancers, infertility and breast cancer in the daughters born to women who were prescribed it. It was made by numerous pharmaceutical firms, including Eli Lilly and Company, which was the largest producer, and E.R. Squibb and Sons, the predecessor to Bristol-Myers Squibb.

Carol Devine, coordinator of DES Action group, says this case sets a precedent for people affected by DES in the US and around the world. "We are often asked about legal compensation on DES matters, so this is heartening news for Australian DES daughters who have had breast cancer diagnosis,"she says.

"There has already been successful litigation in 2008 by an Australian DES daughter in US court against DES drug companies for her diagnosed clear cell adenocarcinoma which left her infertile after a radical hysterectomy."

In agreement with DES Action USA and the College Statement by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, Carol Devine urges DES daughters to be aware of their increased breast cancer risk once they hit forty and to have annual breast screening.

"This ruling against the drug companies is a wake-up call for the government to promote DES information directly to Australians in public health programs, especially since the majority of DES-affected are still unaware of DES and the associated health care they need."

Jackie White, of Centerburg, OH, is one of the plaintiffs in the case. She, like the other so-called DES daughters, was exposed to DES before birth. "I am just over the moon at this decision," she says. "It is time for the drug companies who harmed us to be held accountable for this bad drug."

Washington DC Attorney Aaron Levine called upon a team of expert witnesses including the Chair of Harvard's Department of Epidemiology, and other scientists from academic institutions such as Georgetown University and the University of Paris to support the reliability of their experts and their opinions that prenatal DES exposure substantially increases the risk of breast cancer in DES daughters over the age of forty.

For more information about DES contact DES Action Australia-NSW by phoning 02 98754820 or visiting www.des.blogspot.com

-End-
For more information contact:
Carol Devine, DES Action Australia-NSW
E: c_devine@bigpond.net.au
P: (02) 98754820

Our DES Awareness Week - a response

2012-01-03T22:28:00.004+11:00

The Daily Telegraph published a controversial article about Events Calendars by Melissa Matheson last week, "What say we call it a day" (31/12/11) with the subtitled comment - "The calendar is now jam-packed with worthy and not so worthy causes - and there's a ribbon for every one."

It was a shame that our DES Awareness Week June 1-7 did not even rate a mention, as this would have fulfilled our whole aim - to raise awareness of DES. Had it been mentioned, it would have certainly been categorised as a worthy cause. However, the fact it did not rate a mention may well demonstrate the stiff competition DES Action Australia-NSW as a marginalised unfunded group is up against with other campaigners, armed to the teeth with expensive PR company back-up.

The article had a sweeping statement that campaigners want your attention and, naturally, money. Our campaign has never asked people for money, but instead directly offers Australians information to help prevent cancer fatalities and reproductive health complications - vital health information as a result of a drug disaster that the government currently refuses to provide Australians in public health programs. With the sheer number of calendar campaigns all clamouring for attention, Matheson raises the issue of public exhaustion trying to keep up and the risk that public empathy may turn to apathy. It is hoped this never happens. The response to DES Awareness campaigns over the last seven years has shown the Australian public to be extremely appreciative of the information offered - information they would not have otherwise found.

Events Calendars open a window of excellent opportunity for marginalised organisations with worthy causes. In fair play, media should be focusing equally on those campaigners doing it tough with worthwhile causes. Indeed, a follow-up article about the experience of campaigners, like DES Action Australia-NSW, doing the hard grind without any ribbon and stifled by the PR power of larger campaigners, would be a positive move for public good. Focusing on the worthy campaigns at the fringe would bring something new to many people and simultaneously do justice to the underlying principles of Events Calendars.

TWITTER ABOUT DES

2011-12-06T11:53:00.002+11:00

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

Go to TWITTER @DESAustraliaNSW

MAKING OUR VOICES HEARD

2011-11-02T00:25:00.003+11:00

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

2011-10-27T16:03:00.006+11:00

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

2011-10-26T23:30:00.007+11:00

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

2011-10-11T13:01:00.006+11:00

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

2011-10-06T21:30:00.006+11:00

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 Australia-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 Australia-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!

2011-10-05T00:47:00.005+11:00

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

2011-09-22T14:53:00.012+10:00

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

2011-08-23T12:31:00.008+10:00

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 Australia-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 Australia-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 Australia-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!

2011-07-23T01:02:00.004+10:00

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 Australia-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!

THE LEGAL CASE

2011-06-14T01:35:00.007+10:00

Legal compensation for injuries due to in utero DES exposure has been possible in USA, France, Netherlands and so far, in one case, in Australia.

In 2005, the media release by DES Action Australia-NSW "Australians adversely affected by pregnancy drug sold out by TGA" stated:
Since the 1980s several thousand DES daughters in USA have as individuals successfully sued the drug companies who manufactured DES. An estimated US$300 million has been paid to these DES daughters in total. USA attorneys stand ready to investigate offshore claims in USA for Australians affected.

Several groups of Australian solicitors have advised DES Action Australia-NSW that compensation for adverse effects of DES exposure is not possible under Australian law. On 6th July 1999 on "Current Affair"TV program, Australian solicitor for Slater & Gordon, Paula Shelton explained:
DES was never patented and was available in bulk batches in Australia. There were over 200 brand names of DES, thus making identification of the individual drug maker difficult. Unlike US law where there is shared liability of the drug companies who produced DES, Australian law has necessitated that the individual company must be proven for an Australian case.

In 2008 an Australian DES daughter, diagnosed with clear cell adenocarcinoma won her legal case in USA against the manufacturers of DES.The following may be important for some people affected by DES exposure:
At blog site item 22/11/08 there is the media release (8/11/08) Australian woman wins battle against 'wonder drug' makers in United States. The US attorney involved, Sybil Shainwald, explains that Australian women physically damaged by DES exposure may have the option of pursuing legal claims in the courts of the United States. It is not necessary to be present in USA for this legal claim. A listing of US attorneys can be found at http://www.desaction.org/attorneys.htm

(Contact DES Action Australia-NSW if you require further information.)

THE LATEST NEWS ABOUT 3RD GENERATION
On 9th June there was a landmark legal case in France, where the grandson of a DES mother, seriously handicapped due to his premature birth, was awarded 1.7 million euros (AU$2.3m). More about this at http://tinyurl.com/3tc73dr

In the article "Successful Lawsuits for Premature DES Grandchildren"(DES Action USA newsletter VOICE, #109-2006), US attorney Aaron Levine addressed the subject of DES grandchildren cases. He had filed seven DES premature birth cases since 2004, which had resolved successfully in structured settlements totaling more than US$20m to be paid throughout their lives for therapy, special education and loss of earnings. He explains that these cases concentrate on DES premature children who live normal life expectancies, but suffer a range of impairments from moderate learning disabilities to devastating handicaps and who, "but for" their mother's in utero DES exposure, would have gone to term and lived normal, healthy lives.

DES Awareness Week Today

2011-06-01T16:24:00.007+10:00

DES Awareness Week June 1-7 starts today on the Department of Health and Ageing calendar. A media release and brief notices about DES have been distributed to hundreds of media sources across Australia.

Here is a very apt "universal message" for people about DES by US screenwriter and DES daughter, Caitlin McCarthy. This message will be especially helpful for first time visitors to this website. Caitlin only learned of her DES exposure as recently as 2005. Listen to this:
http://bcove.me/yxix90vn

Here is our media release published on the US CNN website:
http://ireport.cnn.com/docs/DOC-611677

Here is a blog site posting about DES Awareness Week by Lisa, a DES daughter:

http://theredthreadblog.blogspot.com/2011/06/des-awareness-week-ask-your-mum.html

DES on USA radio

2011-05-19T14:08:00.007+10:00

On May 17th the radio program Nightside with Dan Rea (WBZ 1030 AM radio, Boston CBS) broadcasted a segment about DES. Guests Andrea Goldstein and Dr Randi Hutter-Epstein joined Dan Rea to discuss the effects of DES, and the effects on children and grandchildren.

Australians, including those affected by DES, will find this informative. Here is the link to hear the program :

http://boston.cbslocal.com/2011/05/18/nightside-andrea-goldstein-and-dr-randi-hutter-epstein-talk-about-des/

In this program Andrea Goldstein mentions 53 DES daughter breast cancer cases are now before a Magistrate Judge in Massachusetts. These cases are being examined with view to litigation holding drug companies that manufactured DES responsible. This is relevant to Australia, especially where the Australia BreastScreen Evaluation policy states DES daughters do not require more intensive screening or management protocols. DES Action Australia-NSW stands by the information provided by DES Action USA that DES daughters over age 40 require annual mammography, which is the same as that provided by Australia's TGA and RANZCOG. DES Action Australia-NSW has raised that a review of the BreastScreen policy re DES is warranted to the Minister for Health and Ageing.

TGA at http://www.tga.gov.au/safety/media-2008-des-080423.htm

RANZCOG at http://www.ranzcog.edu.au/publications/collegestatements.shtml#CGyn
(see "Clinical General" listing, C-Gen 8)

Australian DES Time Line

2011-03-31T19:51:00.012+11:00

WHAT HAPPENED IN AUSTRALIA?
1971 - Oct 15, information from US arrived in Australia about cancer link to DES (clear cell adenocarcinoma vagina/cervix).
1972 - Sept 9, Therapeutic Goods Administration's (TGA) warning about DES appears in Medical Journal of Australia.

1973 - A national register of DES cancer cases is recommended by TGA committee, but did not eventuate.

1975 - Further warning appears in Adverse Drug Reactions Bulletin (TGA).

Late 1970s - Failure by doctor to report DES cancer in two girls is revealed. At least five children at one children's hospital with likely DES exposure are not investigated. TGA made decision to keep medical profession informed, rather than release statement to lay press. Media release is thought to risk practical problems and public alarm.

1976-1979 A few articles about DES appear in lay press.

1981 - Australia's only DES Clinic established in Melbourne. Its promotion is not mandated. The clinic's listing of patients is purported to be a State Register. Article in Medical Journal of Australia states: A major problem in this country is that there is no recall system which could identify those pregnant women given DES. This Journal alerts doctors of increased risk of unfavourable outcome of pregnancy in DES daughters.

1983 - Reporting of DES cancer cases to TGA is stymied for almost two decades. (TGA informed by a doctor that gathering reports by TGA is unnecessary. TGA complies with this.)

1984 - Research shows increased risk of breast cancer in DES mothers.

1995 - DES Action Australia-NSW established.

1997 - Government commissioned report states probably only 1 case of DES cancer in Australia and provides little justification to keep the DES community informed. Available data in 1997 indicates between 25 and 88 cases.

1998 - At request of DES Action Australia-NSW with a government grant, Cancer Council NSW distributes DES information targeting NSW women. Minister for Health & Aged Care states:...a general publicity campaign for DES exposed people to identify themselves would create anxiety without tangible benefit. Cancer Council NSW ceases DES information distribution as the information is "too scary" for women.

2001 - The Strategic Communication Plan for the US Centers for Disease Control's DES National Education Campaign as a model for Australia is ignored by the Minister for Health & Aged Care.

2004 - TGA issues media release, generating publicity with inaccurate information that DES cancer risk had passed. Government correspondence states promotion of DES information may create community anxiety and refuses to directly inform the public about DES in health promotion programs.

2005 - TGA's Bulletin (which targets medical professionals) reports on screening guidelines for DES daughters.

2006 - Research shows DES daughters over age 40 have increased risk for developing breast cancer.

2008 - Legal assistance sought by DES Action Australia-NSW, following four years unsuccessful lobbying to have TGA's 2004 media release misinformation addressed. TGA then issues Bulletin and media release with the correct information, including 2006 research finding regarding increased breast cancer risk in DES daughters and their need for annual mammography. No media interest transpired. Australian woman wins a legal battle with DES manufacturers in USA.

2011 - Matter of Government failure to properly inform Australians about DES is relayed to Australian Human Rights Commissioner by DES Action Australia-NSW. This year marks 40th Anniversary of the DES cancer link. The US FDA declined to issue an apology for DES, but acknowledged DES exposure as a "tragedy". Yet still, DES information remains buried in Australian Government websites. The majority of the estimated 740,000 DES exposed Australians remain unaware of the danger of DES and the special vital preventive health care they need.

Please view the DES Action USA Key Events at http://www.desaction.org/timeline.htm

DES and Mental Health

2011-03-14T15:18:00.016+11:00

There is relatively little research about the effects of DES exposure on mental health. A list of Psychology References can be found at www.cdc.gov/des/hcp/bibliography/bibli_psych.html
DES Action Australia-NSW has received phone calls from DES exposed people experiencing mental health issues, as well as relationship difficulties with family members/partners in regards to DES exposure.

This week we have news of a French study showing DES exposure in utero linked with mental health issues. The study's survey showed significant occurrence of psychiatric disorders in DES exposed offspring in comparison with non-DES exposed siblings.* Some of these disorders included depression, anorexia and schizophrenia. The incidence of attempted suicide and suicide showed another startling result. The researcher involved, Marie-Odile Gobillard-Soyer, will be working further on this study result in collaboration with AFFSSAPS (the equivalent of the Therapeutic Goods Administration in Australia). More information (in English), along with a French TV news clip about this, can be found at http://diethylstilbestrol.co.uk/des-psychological-side-effects-news/

* Further information from the researcher has clarified that the surveyed group of DES exposed offspring also included those exposed in utero to other synthetic hormones, ie, ethinyl oestradiol (oestrogen), synthetic progesterone (often administered in addition to DES). DES represented a third of all in utero hormonal exposures in the surveyed group.

To help with psychological counselling needs, DES Action Australia-NSW has the listed resources of:

Relationships Australia (a national counselling service)
www.relationships.com.au
Phone 1300 364 277 (for details of nearest service)

and

Mothersafe Counselling Service (NSW)
(for exposures during pregnancy)
Phone 0293826539
Toll free 1800 647848

DES and ETHICS

2011-03-10T23:04:00.008+11:00

Over many years the Australian Government has been resistive to the public promotion of information about DES exposure, due to concerns that this information might raise anxiety in the community.

Below is a Memo from USA National Institute of Health Association of Bioethics 16/7/85 in response to Creutzfeldt-Jakob Disease (CJD). If you alter the second word to "politicians", then this Memo brilliantly applies to the current political attitudes faced by DES exposed Australians. Read it here:

If physicians in positions of responsibility have knowledge about potentially harmful consequences and do not disclose them, they could be blameworthy in an ethical sense. If one reason that the risk is remote and the chances of unduly alarming the informees is great, therefore, justification exists for withholding that information......then the rejoinder would be, "who are you to decide what will or will not upset me?" The burden of proof in these cases is always on those who argue for non-disclosure, and if you look at the evidence, people normally want to be told of these things. I should say, people in our culture want to be told.

FDA Turns a Blind Eye

2011-03-07T12:08:00.016+11:00

The US Food & Drug Administration acknowledged the DES tragedy on February 22, 2011. However, it seems only part of the tragedy has been acknowledged.

This is evidence by http://www .fda.gov/ForConsumers/ByAudience/ForWomen/ucm118458.htm where DES is touted as a milestone in the FDA's "100 Years of Protecting and Promoting Women's Health". On this website, the FDA further extolls its action in changing the labeling on this hormone to warn women against taking this drug during pregnancy. The FDA has turned a blind eye to the continued usage of DES in pregnancy beyond 1971 -which could have been stopped had DES been banned.

DES Action Australia-NSW made a request to the FDA for the removal of the 1971 entry re DES on this website and received the following:

....."Please be assured that we acknowledge the tragedy of DES. However, it marks an important historical step when the 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.".....

In response, DES Action Australia-NSW has written:
"Thank you for your email below explaining the FDA's rationale for the inclusion of DES on the website (http://www.fda.gov/ForConsumers/ByAudience/ForWomen/ucm118458.htm), titled "100 Years of Protecting and Promoting Women's Health".

I wish to inform you that the FDA is seriously mistaken with this rationale due to the following:
As the FDA did not ban DES, the usage of DES during pregnancy did NOT stop, and therefore there could only be very limited benefit to the health of women and their children. Our organisation is aware that DES usage in pregnancy continued in many countries after 1971 and this a stated fact at http://www.cdc.gov/des/hcp/pharmacology/index.html
We know its usage peaked in France in 1976 and our organisation has received reports of DES usage in Australia in the mid 1980s. We have also received reports of its continued usage in India (1975), Germany (1973), Poland (1991), Pakistan (late 1990s, and Bangladesh (late 1990s). A 1992 Symposium held in Sweden raised concerns that DES might still be given to pregnant women in many parts of the world, including East and Central Europe, Africa, Asia and Latin America and there were requested measures for a ban. Unfortunately this did not eventuate and concerns are still held for ongoing usage. Consequently, this listing of DES by the FDA bears no resemblance whatsoever to a "learning milestone", but is instead, deceptive and gravely misleading by its omission of information about its continued usage in pregnancy for the medical community. In addition to the issue of continued usage, there is the known fact of the tardiness by the FDA in issuing warnings about the danger of DES and the numerous missed opportunities to review its safety.

As the public becomes increasingly aware of the above situation, the FDA is open for ridicule with the inclusion of DES on this webpage - now more than ever, in the 40th Anniversary of the cancer link to DES. In view of the above information, it would be more fitting for the listing of DES on an FDA website titled "40 Plus Years of Abysmal Failure in Women's Health".

Aside from the factual flaws in the FDA's rationale in this matter, there is the matter of this DES item causing offense to the DES community. Regardless of whether the FDA considers this listing to be "a learning milestone"for the medical community, for those exposed to DES, this listing under the title which strongly touts "protecting and promoting women's health", is in extremely bad taste and is dismissive of the catastrophic health effects of DES on the 5-10 million DES exposed people in USA and millions of DES exposed worldwide, including in Australia.

In view of the above, we ask again for the removal of the 1971 entry re DES at http;//www.fda.gov/ForConsumers/ByAudience/ForWomen/ucm118458.htm as it does not represent protection and promotion of women's health in any respect and is offensive to the DES exposed population."

The part of the DES tragedy involving the continued usage of DES in pregnancy beyond 1971 is outrageous and shocking. DES Action Australia-NSW has even received a report where a DES daughter in Sydney, 1977, was keenly offered DES for her threatened miscarriage by a General Practitioner. Luckily for this DES daughter, she had previously chanced upon information about the danger of DES and refused the doctor's treatment.

The recent acknowledgment of the DES tragedy by the FDA is clearly not enough. Efforts should continue towards an official apology by the FDA, which details the FULL extent of the DES tragedy.

On Oprah

2011-03-04T15:07:00.007+11:00

Australia has had its turn on Oprah - now it's ours!

With this year being the 40th Anniversary of the DES cancer link, why not approach Oprah to cover a segment about DES in her last season?

Oprah's coverage of the DES exposure issue would help those affected by DES all over the world, including in Australia.

Go to https://www.oprah.com/ownshow/plug_form.html?plug_id=3337311 to lodge your personal request message to Oprah and ask her to highlight the 40th Anniversary of the DES cancer link.

Feel free to copy and paste the following links to let Oprah know that DES is a topical subject:
Boston Globe article Feb 24
http://www.boston.com/lifestyle/health/blog/dailydose/2011/02/des_and_birth_d.html
WCVB-TV "Chronicle"
http://www.thebostonchannel.com/video/26938692/detail.html#COMMENTTOP
Origins of FDA Apology effort Feb 24
http://celebritiesindisgrace.wordpress.com/2011/02/24/fda-letter-is-national-news-it-all-started-here/
Australian coverage of FDA's DES acknowledgement Feb 25
http://desnsw.blogspot.com/2011/02/out-of-fda.html
Press Release from Senators Kerry and Brown on FDA's DES acknowledgement Feb 24
http://kerry.senate.gov/press/release/?id=fd5e856f-6e84-4332-b434-3f17549071b5

DES Message Spreads

2011-03-03T11:55:00.006+11:00

Whenever networking or making representations at various public events about breast cancer, the organisation DES Action Australia-NSW encounters many DES exposed women previously diagnosed with breast cancer. These women report not being previously aware of the link between DES and breast cancer. DES Action Australia-NSW has been able to provide these women information resources covering all aspects of DES exposure health effects.

As a result of liaising with Breast Cancer Network Australia (BCNA), there is pleasing news that the Network now has an item about DES exposure on its website at http://www.bcna.org.au/about-breast-cancer/diethylstilbestrol-and-breast-cancer

Please note: The Australian Government does not officially make any provision for DES mothers and DES daughters over age 40 to receive their recommended annual mammograms at BreastScreen clinics. However, it is possible for DES mothers and DES daughters over age 40 to acquire free annual mammograms at BreastScreen clinics, by writing to their own local Breastscreen Director. (See blog item 17/1/09)

OUT OF THE FDA

2011-02-25T16:21:00.007+11:00

The following is copied from news released yesterday and it could well be a stepping stone for our long awaited apology for the DES tragedy from the US FDA:
(www.scottbrown.senate.gov/public/index.cfm/2011/2/kerry-brown-fda-finally-recognizes-prescription-drug-tragedy)

Feb 24 2011
Kerry, Brown:FDA Finally Recognizes Prescription Drug Tragedy

BOSTON - Forty years after doctors at Massachusetts General Hospital first discovered a link between the drug Diethylstilbestrol (DES) and a rare form of cancer, the FDA has sent a letter to Senators John Kerry and Scott Brown acknowledging that the widespread prescription of DES was a tragedy with devastating health consequences. The letter also outlines FDA's new initiatives to prevent similar drug disasters in the future. This letter comes in response to a letter the Senators sent to the FDA Commisioner Margaret Ann Hamburg last October on behalf of constituents affected by DES.

"The FDA is the first of defense for patients nationwide who need to know the medicines they use are safe, and it's important that today they've recognized the heartbreaking consequences that DES had for millions of people over the thirty years it was deemed safe."

"The FDA's acknowledgement of the devastating impact DES has had on patients across the country is long overdue, and I am pleased to hear of their admission, "said Sen. Brown.

Diethylstilbestrol (DES) was a synthetic estrogen that was developed to supplement a woman's natural estrogen production. Originally prescribed by physicians in 1938 for women who experienced miscarriages or premature deliveries, DES was considered safe and effective for both mother and developing baby until the New England Journal of Medicine published a report in 1971 suggesting a link between DES use by pregnant women and a rare vaginal cancer in female offspring.

The Food and Drug Administration (FDA) subsequently issued a Drug Bulletin to physicians advising them to discontinue prescribing DES in pregnant women. According to the Centers for Disease control (CDC), approximately 5-10 million persons were exposed to DES between 1938-1971, including pregnant women and the children born from those pregnancies.

More news: The Boston Globe in a following article, mentions the request for an apology with "DES and birth defects; FDA acknowledges 'tragedy'from 40 years ago". Find this at http://www.boston.com/lifestyle/health/blog/dailydose/2011/02/des_and_birth_d.html

Feel free to register to make comments on this Boston Globe article!

Out of Boston - a 40th Anniversary

2011-02-25T12:45:00.008+11:00

On February 18, 2011, WCVB-TV Boston's newsmagazine Chronicle interviewed longtime DES activist/DES historian Andrea Goldstein, DES Daughter and Wonder Drug screenwriter Caitlin McCarthy, and DES researcher Dr. Julie Palmer for its segment on DES (diethylstilbestrol). DES is a toxic and carcinogenic synthetic estrogen that was prescribed to millions of pregnant women for decades because drug companies claimed it prevented miscarriages and problem pregnancies, even though no controlled studies were ever conducted to determine the effectiveness or safety of DES for use in pregnancy. As early as 1938, studies showed that DES promoted cancer in lab animals, and as early as 1953, research revealed 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 because the drug was a top moneymaker for drug companies. Doctors at Boston's Massachusetts General Hospital discovered the DES cancer link and published their findings in the April 1971 issue of New England Journal of Medicine . However, the FDA did not issue a *warning* about DES until November 1971; the FDA *did not ban* DES for human use. DES was contraindicated for pregnancy by the FDA in 1972. 2011 marks the 40th anniversary of the DES cancer link being made.

See the WCVB-TV Boston segment about DES:

www.thebostonchannel.com/r-video/26938692/detail.html

VOTE FOR DES AWARENESS

2011-02-15T11:53:00.014+11:00

GetUp is an independent, grass roots community advocacy organisation giving everyday Australians opportunities to get involved and hold politicians accountable on important issues.

Their website now lists the campaign suggestion for the promotion of DES exposure information by government - and it needs the votes of all supporters, including those overseas, to make a campaign about DES by GetUp happen.
Here is the campaign suggestion message:

Since the warnings to doctors in the early 1970s about the danger of prescribing the carcinogenic anti-miscarriage drug to pregnant women, there has been no campaign to help keep Australians aware of the possibility of having been exposed to DES during pregnancy and in the womb. Many Australians are suffering effects of DES (vaginal, cervical and breast cancer and reproductive abnormalities) without knowing why and without being made aware of the vital special preventive health care they need. It needs to be recognised by the Prime Minister and the Minister for Health & Ageing that the promotion of information about DES exposure directly to Australians in public health programs is essential.
Comment: Due to the time lapse, doctors are unable to trace records for Australians affected and it cannot be presumed that doctors have already alerted patients about their exposure. From available data it is estimated up to 740,000 Australians have been exposed to DES. DES information is currently buried in government websites. Unless Australians are aware of the danger of DES in the first instance, they would not know to search for these obscure websites. More information at www.desnsw.blogspot.com

So! All supporters in Australia and world-wide, please vote now for a campaign by GetUp to make the promotion of DES exposure information in Australia happen.
To cast your vote, go to http://suggest.getup.org.au/forums/60819-campaign-ideas/suggestions/1488647-des-diethylstilboestrol-exposure-awareness?ref=title
(Don't forget to click on the "Vote" box on left of campaign message to register 1 or 2 or 3 votes.)

Forced Adoption Victims and DES

2011-02-09T14:56:00.028+11:00

DES Action Australia-NSW has made submissions to the Australian Senate Inquiry "Commonwealth contribution to former forced adoption policies and practices".

These can be found on Google Search "Australian Senate Inquiries", click on "Current Inquiries", click on "Commonwealth contribution to former forced adoption policies and practices", click on "Submissions received".
Click on No:21, followed by Supplementary Submission.

DES Action Australia-NSW has received numerous phone calls from women who were forced adoption victims and given DES as lactation suppressant (to stop breast milk). They report DES being given without informed consent and sometimes as excessive doses. There is an anecdotal report of extraordinarily high (80%) incidence of breast, cervical and ovarian cancers in a survey of forced adoption victims by the group, Origins NSW. Another survey by Care Leavers Australia Network (CLAN), a support organisation for former State Wards, shows 41% incidence of teenage pregnancy.

In view of the above information, the submissions by DES Action Australia-NSW urge that there be research on possible effects of DES usage as lactation suppressant.

News update:
On 29/4/11 DES Action Australia-NSW made representation as witness before the Senate Committee for this Inquiry. The Committee conveyed intention of investigating the matter of researching this usage as lactation suppressant and commented that they had "homework"to do on this. A suggestion was flagged about the merits of bringing all involved groups together to gather information about possible long-term effects of DES as lactation suppressant.
The witness transcript is available for viewing by clicking the link for Sydney Location (29/4/11) at:

http://www.aph.gov.au/senate/committee/clac_ctte/comm_contrib_former_forced_adoption/hearings/index.htm

Some media response:

http://www.smh.com.au/national/mothers-given-dangerous-drug-inquiry-20110928-1kww3.html

http://www.couriermail.com.au/news/breaking-news/mothers-given-dangerous-drug-inquiry-told/story-e6freonf-1226149274908

http://www.businessspectator.com.au/bs.nsf/Article/Unwed-mothers-given-cancer-risk-drug-M5CBF?OpenDocument&rsc=hp7

Our Right to be Informed about DES

2011-02-09T01:01:00.017+11:00

DES Action Australia-NSW is constantly asked by people: Why haven't we been told about DES?
The suffering and anxiety as a result of not being told about DES is clear to us.

So we now ask: What about the right of Australians to be informed of the possibility of having been DES exposed?

DES Action Australia-NSW has recently sent the following correspondence to the Australian Human Rights Commissioner (attachments not included here):

Dear Commissioner Branson

I am coordinator of the organisation, DES Action Australia-NSW, a support group for Australians who have been exposed to the harmful carcinogenic, anti-miscarriage drug, DES (diethylstilboestrol), which was prescribed to pregnant women from 1938-1971 (and sometimes beyond). I am writing to you due to our organisation's concern for the right of Australians to be directly informed of the possibility of having been exposed to DES. From Australian data, our organisation is able to estimate there are up to 740,000 Australians exposed to DES (DES mothers, daughters and sons).

To assist you, here is some background information about DES:
Diethylstilboestrol (DES or commonly known as "stilboestrol") is a synthetic oestrogen that was developed to supplement a woman's natural oestrogen production. It was first prescribed in 1938 for women experiencing miscarriages or premature deliveries and originally considered effective and safe. DES was available in the form of tablets, injections, vaginal suppositories (also called pessaries) and sometimes as an ingredient in pregnancy vitamins. In 1971 physicians were advised to stop prescribing DES to pregnant women because it was linked to a rare vaginal/cervical cancer in female offspring. Since 1971 research has shown:
-women prescribed DES while pregnant, known as DES mothers, are at 30% increased risk for breast cancer and require annual mammography and clinical breast examinations.
-Women exposed to DES before birth (in the womb), known as DES daughters, are at increased risk for clear cell adenocarcinoma (CCA) of the vagina and cervix, have almost two times increased risk of breast cancer after age 40, reproductive tract structural differences, pregnancy complications and infertility. The risk for developing CCA is about 1:1,000 DES daughters. Although DES daughters appear to be at highest risk for clear cell cancer in their teens and early 20s, cases have been reported in the 30-50 age groups [http://obgyn.bsd.uchicago.edu/registry.html#accessions]. This cancer is aggressive; it can be symptomless and is not always detected by the usual Pap smear. It should be detected early. DES daughters require life-long special annual "DES examinations", along with annual mammography and clinical breast examination. DES daughters also require high-risk care during pregnancy.
-Men exposed to DES before birth (in the womb), known as DES sons, are at risk for non-cancerous epididymal cysts (cysts behind the testicles).

Researchers are still following the health of the DES exposed population to determine whether other health problems occur with age and whether subsequent generations are affected. There is recent research showing menstruation irregularity in DES granddaughters, which hints the possibility of increased risk of infertility. There may be many people who do not know whether they were exposed to DES and some women may not remember taking DES. DES information is important because people who were exposed must be vigilant about their own health care - to detect cancers early, demand high obstetric care when pregnant and factor in their exposure when making decisions about HRT use. It is as much part of a person's medical history as a family history toward heart disease or diabetes.

The Adverse Drug Unit of the Therapeutic Goods Administration (TGA) has data of 18 case reports of DES associated cancer. The failure to report cases has been acknowledged, thus rendering the TGA's database unreliable. There has also been refusal by the TGA to complete regular reciprocal cross-checks of Australian cases that have been reported to the International DES Registry, held in Chicago, USA.

Prior to the DES problem, the cancer type linked to DES was rare and typically occurred in post-menopausal women. Using data held by the Australian Institute of Health and Welfare (AIHW) and State Cancer registries before 1982, our organisation has been able to estimate that up to 2010 there are up to 740,000 DES exposed mothers, daughters and sons in Australia. From AIHW data, our organisation estimates there have been 8 deaths due to DES exposure. There is no upper age limit for the development of DES-type cancer, with cases now occurring in DES daughters in the 40s and 50s age group.

In 2004 the TGA issued a media release about DES, gaining nation-wide media attention. However, this media release contained information mistakenly stating that the increased cancer risks for DES daughters had now passed and that DES daughters no longer require their special annual "DES examination" for their life-saving cancer prevention. In lobbying government, the organisation DES Action Australia-NSW eventually required legal assistance to ensure that a media release with correct information was issued by the TGA. In 2008 the TGA issued a further media release with information that DES daughters require life-long follow-up with annual DES examinations. Unfortunately, this 2008 media release did not receive nation-wide media attention.

Due to the time lapse, doctors are unable to track down Australians exposed to DES. It cannot be presumed that doctors have already alerted affected patients about their DES exposure. There has been no public health education campaign by any Australian government to help alert the many DES exposed Australians who are still oblivious to the fact of their exposure, unaware of the harmful effects of DES, and unaware of the special health care they require, including their special vital cancer preventive health care. The public's response to DES Action Australia-NSW following intermittent media attention to DES exposure over the years shows that the health of DES exposed victims has been neglected due to the absence of prominent public information about DES - information which would have prompted earlier access to their rightful health care. Since the 1990s the Australian government has continued to advise DES Action Australia-NSW that raising public awareness of DES could create unnecessary anxieties for women who may not know if they have been exposed to DES. The Therapeutic Goods Administration has no capacity to monitor medicines that are no longer available for supply in Australia. This includes DES, even though it has been proven a dangerous drug with serious ongoing adverse effects. It is stated that in Australia, no single body has the responsibility for providing advice about the risks of medicines after their withdrawal from supply.

In 2001 the USA Centers for Disease Control (CDC) launched the first national public education campaign to educate the US public and physicians about DES (www.cdc.gov/des). It is estimated that in USA there are 5-10 million DES exposed people. The US campaign launch included an extensive media campaign across USA. Australian government information about DES is buried in websites, significantly decreasing the chance that the population would become aware in the first instance that there is any health problem associated with DES. It is the opinion of DES Action Australia-NSW that it is the right of Australians to be informed of the possibility of having been exposed to this dangerous drug. Accordingly, lobbying efforts over the past 5 years have been directed to the Australian government towards ensuring the promotion of information about DES exposure directly to the public in health programs. The situation remains that many people are suffering the effects of DES exposure, without knowing why and what they can do about it.

In view of the harmful effects experienced (including cancer) by many unknowing victims of DES exposure, it seems to our members, that there has been a breach of human rights by successive governments since the early 1970s, through their failure to appropriately inform the Australian public about DES exposure, when it is reasonable and facilities exist to do so. The nature of this matter would be hypothetically akin to successive governments failing to keep the Australian public alert and informed about the dangers of asbestos. When our organisation has made enquiries to Australian legal authorities on this matter, we are advised that DES exposed victims have no standing legally with the government on this matter. As a suggestion, Australian legal authorities advise that the only recourse is to approach Australian media. Our experience is that this advice is mostly ineffective, since the Australian media is not always interested in the DES subject.

Upon perusal of the International Covenant on Civil and Political Rights (ICCPR), I have found Article 19, pertaining to the right of freedom to receive information. However, I also note that this article carries special duties and responsibilities and may have restrictions by law. In USA, legislation has been necessary to ensure that the needs of the US DES exposed population are addressed. In 1978 there was legislature in New York State for a public education campaign and the identification of clinics to provide "DES examinations" for DES daughters unable to pay. (http://www.nejm.org/doi/full/10.1056/NEJM198101013040111) In 1979 a bill was passed in California State, which mandated the Department of Health Services to train doctors and nurses, designate DES screening centres and produce a public education campaign. (See attachments: Bill1, bill2, bill3 pdf) In 1985 the US President Ronald Reagan issued proclamation of National DES Awareness Week. (See attachment: USProclamation pdf) In 1992 US Federal Congress passed a DES Education and Research bill which allowed the aforementioned national public eduction campaign by the CDC. This bill specified that prior consultation with non-profit private entities representing individuals who have been exposed to DES should take place. The following is a testimonial statement for this bill by two DES Action board members:

The history of our exposure to DES is a story of enormous suffering and needless death caused by a harmful chemical approved by the FDA and promoted as a wonder drug. It is a story of unsuspecting pregnant women and inadequately informed doctors; a story of unquestioned faith in a poorly tested product. Most importantly it is a story of millions of people - mothers, daughters and sons - whose lives have been tragically and permanently affected by DES.

DES Action/USA, a non-profit organization established in 1979, is the only national entity to which DES-exposed Americans can turn for support, information and education. Together with the DES Cancer Network, we are engaged in the only outreach effort to identify this high-risk population and to inform them of their special health needs. We work on a national scale with a minimal budget.

Despite our efforts on the past thirteen years, it is our belief that the majority of DES-exposed Americans are not aware of their exposure to this toxic and dangerous drug....

The known adverse physical effects of DES exposure, coupled with unknown future risks, often lead to lasting psychological injuries. We invite you to imagine the guilt for having taken a drug that irrevocably harmed your child. Or imagine at age 19 that you have vaginal cancer and that the standard treatment is removal of your reproductive organs. Imagine having to face the reality of infertility, confronting the anxiety of bearing an unhealthy child, or coping with the burden of caring for a seriously disabled child. Then imagine dealing with the...marital and familial stress that each of these problems creates...

The bill also authorizes funding for DES education for health professionals and the general public for fiscal years 1993 through 1996. At present, a critical lack of knowledge about the drug and its effects leads to tragedies that can be prevented: cancer not caught at an early stage because a simple, yet specialized exam was not performed; the loss of a Fallopian tube because of an unanticipated, life-threatening ectopic pregnancy; or a baby lost late in pregnancy because the mother was not treated as a high-risk patient. Funds spent wisely now wil not only prevent the senseless loss of lives, but will also help curb the need for expensive, crisis-oriented medical treatment for the DES-exposed.

In view of the above legislation that was considered necessary in USA for DES exposed victims, will you consider action towards ensuring legislation in Australia (Australian law) which will allow the many unknowing victims of DES exposure in Australia to become directly informed of their DES exposure and which will respect the rights of all Australians to be directly informed of the possibility of having been exposed to DES?

I look forward to hearing from you on this very important matter.
Thanking you in anticipation
Yours sincerely

Carol Devine
Coordinator, DES Action Australia -NSW
Ph (02) 98754820
c_devine@bigpond.net.au
Blogsite: www.desnsw.blogspot.com
(DES Action Australia-NSW operates independently of the Melbourne-based group DES Action Australia)

# # #
News Update: On 1/3/11 DES Action Australia-NSW received notification that the Australian Human Rights Commission has raised the above issue with the Department of Health and Ageing and will be informed when a response is received from the Department.

July 2011 Update:
The response by the Department of Health and Ageing was not satisfactory. In June DES Action Australia-NSW received notification from the Australian Human Rights Commission that the Commission is not in a position to assist in our matter and that it has limited resources. The Commission explained it must make difficult choices when identifying its priorities and fixing its work program. Nonetheless, the Commission has asked to be kept informed of DES issue developments.

On 22nd June DES Action Australia-NSW sent the following to the Commission:

Dear Ms Aggarwal

Our members consider it extremely unfortunate that the matter of DES exposure has been given low priority. It is important for your Commission to be informed that the DES health problem is not going to disappear. It is very likely that the estimate figure of 740,000 affected Australians will increase as more cases of clear cell adenocarcinoma of the vagina and cervix are reported. This cancer is occurring in women exposed to DES in utero in older age groups. Usage of DES during pregnancy in Australia is known to have extended beyond 1971. It is therefore likely that reports will continue for many years to come. When the numbers reported per year so far are averaged, this means a likely estimate increase of 20,000 affected Australians per year. Without legislation to ensure promotion of DES information in public health programs, it is highly probable the great majority of those affected will die in ignorance, with many having suffered unnecessarily due to their lack of knowledge of their DES exposure. There is the added possibility that their children, the next generation, may be affected and will likewise, be unaware of DES exposure risks. The repercussions of inaction by your Commission in consideration of human rights in this matter are great, and for the Australian government, there is the greater cost through health care subsidies that would otherwise have been averted.

We hope that the above information is helpful in your prioritisation decision in relation to the DES exposure issue.

Yours sincerely

# # # # # # # #

On 13th July DES Action Australia-NSW sent the following to the Commission:

Dear Ms Aggarwal

Our organisation wishes to inform you of a few more developments.

Recently the French government has seen fit to publish a very important paper about DES, which emphasises possible multi-generational effects and recommends that patients exposed to DES hand down the "record" of their exposure to the next generations to allow monitoring and care. Please find English translation attached. The original French version can be found at the Reseau DES France website http://www.des-france.org/professionnels-sante/note-info.php#mideaupoint2011
I have forwarded this information to the Therapeutic Goods Administration and to the Minister for Health and Ageing. This issue of multi-generational effects is one more factor about DES which should be conveyed to the Australian population in the event of promoting DES information in public health promotion programs.

Problems are likely to continue as a result of inaction in properly informing the Australian population about DES. Only a few weeks ago our organisation was alerted to two cases of DES associated cancer in DES daughters who were diagnosed in their 20s, (1991 and 2004), one of whom died of complications and the other currently suffering complications. Both women were totally unaware of the special cancer preventive care they required, which placed them at risk of their aggressive cancers not being detected early. It is extremely harrowing and difficult task explaining the government's stance on DES public education to the DES daughter involved, and in particular, to the grieving mother involved, when such publicity may well have saved her daughter's life. Also, as per usual, our effort for DES Awareness Week June 1-7 has gained response from people who up to now, have been oblivious to their vital preventive care for their DES exposure and suffering the effects of DES without knowing why. It is very traumatic to these people to also learn about the government's stance on DES public education, which has contributed to their unnecessary suffering due to lack of appropriate care for their DES health effects.

As requested, we shall continue to alert you of developments that come to hand about the DES exposure issue. I wish to inform you that our members are extremely irate to learn that in Australia, a so-called developed nation, its own Human Rights Commission is under-resourced to be able to assist in our matter. Can you please keep us informed of any developments by the Commission towards finding the resources to address our matter?

Yours sincerely

# # # # #
Note: Attachment not provided here. However, English translation of French paper is available on request.

November 2011 Update:

A member of DES Action Australia-NSW received letter (21/10/11) from the Human Rights Policy Branch of the Attorney General's Department which states their Department shares our concern that people may not be aware they have been exposed to DES. Unfortunately their Department is unable to intervene on the decision taken by the Australian Human Rights Commission. However, their letter suggests raising our concerns with the Federal Health Minister who has portfolio responsibility for these issues.
On the 18/10/11 DES Action Australia-NSW sent a letter to the Commission requesting a time frame for action regarding the DES issue. So far there has been no response from the Commission.

Women's Health Policy shuns DES

2011-02-07T16:07:00.009+11:00

Last year, the Australian government developed a new National Women's Health Policy, intent on focusing on prevention, health inequalities and the social determinants of those inequalities.

DES Action Australia-NSW, in representing up to an estimated 555,000 DES exposed women in Australia, made submission for this policy, highlighting:
-prevention needs by way of direct public promotion of DES information
-inequality where Australian DES exposed women have not benefited from the overall improvements in health experienced by most woman as a result of their being deprived of appropriately delivered information.
-the social determinant of the inequality as being political, ie, the government's belief that the promotion of DES information is likely to create anxiety.

DES exposure has not rated any mention anywhere in the newly released Women's Health Policy. Without DES exposure being specifically stated and addressed within the Women's Health Policy document, this signifies a gross injustice, continued abuse of the rights of every Australian woman to be informed of the possibility of having been DES exposed and the perpetuation of inequality for women and inequity between women.

Makena -The Jaw Dropper

2011-02-06T17:51:00.008+11:00

www.businessweek.com/print/lifestyle/content/healthday/649631.html

Over the past few years there have been articles stating that doctors have been prescribing progesterone to pregnant women, based only on anecdotal reports of its effectiveness in preventing miscarriage. The US Food & Drug Administration (FDA) has now approved Makena (hydroxyprogesterone caproate) to prevent premature births.

For its approval, the FDA only reviewed a trial of 463 pregnant women and reviewed the development their babies only between 2.5 to 5 years of age. This drug is a reissue of an earlier drug and received accelerated approval. Makena's ingredient, hydroxyprogesterone caproate, has had previous safety concerns, including possible association with second trimester miscarriages. For more information about this see http://en.wikipedia.org/wki/17-Hydroxyprogesterone_caproate

TV Press article (www.presstv/ir/detail/163935.html) states: Further studies, however, are needed to show whether the infants whose births were delayed by the use of this drug will suffer fewer health and developmental problems or not.

For all those familiar with the DES story, this approval by the US FDA rings alarm bells.

Cancer Council has DES exposure silenced and zipped

2011-02-01T05:48:00.020+11:00

Last week the Irish Medical Times published an article to mark Cervical Cancer Prevention Week in Ireland. This article commendably included the statement: Exposure to diethystilboestrol (DES) also increases cervical cancer risk. (www.imt.ie/clinical/2011/01/early-detection-is-key-to-prevention.html)

Sadly in Australia, there is no such nationally held Prevention Week which could help raise awareness of the risks of prenatal DES exposure. In South Australia, there are only some small funding grants provided by the SA Cancer Council to community applicants to promote a Pap Smear Awareness Week in SA.

So far, Cancer Council Australia and the Cancer Councils of Qld, WA, Vic and ACT have responded to the requests of DES Action Australia-NSW to include prenatal DES exposure as a risk in their respective cervical cancer publications. However, our organisation's experience shows that merely including DES information in publications does not go far enough in raising awareness of DES exposure to the Australian public. Even more frustrating, is the low priority status of the NSW Cancer Council's information fact sheet, DES and Cancer Position Statement - tragically positioned well away from direct public attention and dormant with its glaring statement: Many people remain unaware of their exposure and the potential adverse effects of DES.

This week, the Australian Cancer Council and all State and Territory Cancer Councils have been asked by DES Action Australia-NSW : Why isn't there a national Cervical Cancer Prevention Week which could help raise awareness of the risk of prenatal DES exposure?