Wednesday 17 November 2010


DES Action Australia-NSW has made enquiries to all State Cancer Registries and found there are 20 further cases of clear cell adenocarcinoma of the vagina/cervix (CCA) reported to those Registries prior to 1982. Consequently, the estimate of the upper range figure for DES exposure in Australia has increased.

We can now calculate the estimate in Australia to be 168,000 - 648,000 DES exposed mothers, daughters and sons.

In data held by the Therapeutic Goods Administration to present, there have been 3 mortalities due to DES associated CCA. However, Australian Institute of Health and Welfare data up to 1997 for CCA cases in the general population shows 8 deaths in total.

Thursday 11 November 2010

Red Tape with DES in Oz

As we know, it is possible for deleterious health effects to arise after harmful drugs/medical devices have been withdrawn from the Australian Register of Therapeutic Goods (ARTG). It has certainly been the case for DES with the recent finding of increased risk of developing breast cancer in DES daughters over age 40.

In February this year, DES Action Australia-NSW learned in Government correspondence that no single body has the responsibility for providing advice about the risks of medicines after their withdrawal from supply. Thereafter, it is only a stated possibility that the Therapeutic Goods Administration and the Department of Health and Ageing will take actions in dealing with the ongoing health care of affected Australians.

In seeking to have this matter addressed to ensure the Australian DES community is kept informed, DES Action Australia-NSW sent a letter to Prime Minister Kevin Rudd. However, there was no reply. A further letter on this matter has been sent to the current PM Julia Gillard (cc Minister for Health and Ageing, Australian Chief Medical Officer).

In light of the continuing research of DES effects on those exposed and subsequent generations and the ever increasing list of harmful drugs/medical devices withdrawn from the ARTG, this is an important issue.

Monday 18 October 2010


There are currently 18 case reports of DES associated clear cell adenocarcinoma of the vagina/cervix held by the Therapeutic Goods Administration. However, the figures for this cancer type held by the Australian Institute of Health and Welfare (AIHW) provide a more reliable estimate for DES exposure in Australia. Reports of this cancer type to the AIHW are steady.

The Institute's current data (1982-2006) shows 42 cases below age 50, and 142 cases across all ages for clear cell adenocarcinoma of the vagina/cervix in the general population. From this information, we can calculate the current estimate in Australia to be 168,000 - 568,000 DES exposed mothers, daughters and sons.

We are informed that the AIHW will be able to provide more data in December.

Wednesday 13 October 2010

Hopes Boosted For DES Apology

Hopes are now rising for the US Apology for DES. Caitlin McCarthy (US DES daughter and screenwriter) has news that Senator Scott Brown is sending out the following message to everyone who has written to him about the DES apology:

Thank you for contacting me regarding your concerns about the effects of diethylstilbestrol (DES). I value your input on this and other issues and appreciate hearing from you. As you may know, DES is 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. Following a 1971 published report citing health concerns for mothers and children, the Food and Drug Administration (FDA) subsequently advised physicians to discontinue prescribing DES in pregnant women. By 1998, the drug was removed from the market for reasons of safety and efficacy in the United States. 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. I understand your concerns regarding the exposure of millions of women and children to DES since 1938. At this time, please know that I have been working with my Massachusetts colleague, Senator John Kerry, on this issue. We have sent a letter to Commissioner Hamburg at the Food and Drug Administration to inquire about an apology from the FDA in recognition of the hardships endured by families across the country. Again, thank you for sharing your thoughts with me. If you should have any further questions or concerns, please do not hesitate to contact me or visit my website at
Sincerely Scott P. Brown United States Senator

NOW is the right time for Australians to exert more pressure on US Senators Kerry and Brown by supporting the DES apology. Here, Down Under, we can certainly do with the apology's flow on benefits!
Addresses below to write in support:

Senator John Kerry (MA)
United States Senate
218 Russell Senate Office Building
Washington, DC 20510

Senator Scott Brown (MA)
United States Senate
317 Russell Senate Office Building
Washington, DC 20510-2102

Tuesday 5 October 2010

Vale Pat Cody - DES Action Founder

We have sad news of the passing of Pat Cody, the founder of DES Action USA. Pat was ever the consummate activist and she 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.

In photo: Pat Cody with Dr Jules Black (Medical Spokesperson for DES Action Australia-NSW), enjoying lunch and information exchange in San Francisco, 2003.

Here is the link to her obituary titled Pat Cody, Bookstore Owner, Pioneering Feminist Health Activist, which appeared in The Berkeley Daily Planet newspaper:

Thursday 30 September 2010

Hoops and Hopes for a DES Apology

The following is a message from Caitlin McCarthy in USA:

I have just received the following email from Senator Brown's office (copying Senator Kerry's office):
"Hi Caitlin:
Unfortunately, and despite our offices many attempts to raise awareness of this issue, it does not appear that the US Government - including the FDA - will issue a formal apology at this time.
If you would like to continue to pursue this matter, we suggest you consider working with members of the Senate HELP Committee, which has jurisdiction over the FDA. The Senate HELP website can be found at
We wish we could have provided you with the resolution that you desire and wish you best of luck in your future efforts.
Thank you."

I would like to thank everyone who took the time to comment on my DES blog post, add the blog post links to their Facebook and Twitter pages, and spread the word about the DES apology attempt. I honestly did my best. Moving forward, I'm going to focus my attention on raising awareness about DES through my feature film screenplay WONDER DRUG.

I encourage anyone who wants to continue pursuing the DES apology to contact the Senate HELP Committee (see link above).

Thank you again for your help and support.

- Caitlin

COMMENT:Hearty congratulations to Caitlin and all supporters -the seeds are now sown towards a DES Apology!

More news....Caitlin's nomination as Intelligent Optimist is online with Ode Magazine

Tuesday 28 September 2010

"Huff" gets onto Apology

The Huffington Post, ranked the most powerful blog in the world by The Observer, today is featuring a huge item by Diana Bianchini about the need for a DES apology from the US Government.

See it now - One of America's Deepest Darkest Family Secrets: The DES Drug Disaster at

Please note the statement: "A U.S. apology would also raise global awareness about DES."

Now we urge you to post comments under the DES article to let everyone know about the DES problems in Australia! Here is a chance to "let fly"!!

If you haven't already written to the US Senators to help make the Apology happen, their addresses are at previous blog "US Push for DES Apology".

Saturday 18 September 2010

US Push for DES Apology

See blog post:

US screenwriter, Caitlin McCarthy (DES daughter) has a new blog post on acclaimed author Elizabeth Searle's site entitled SORRY SEEMS TO BE THE HARDEST WORD: Where is the Public Apology for DES, the World's First Drug Disaster? This blog post is a must see for anyone concerned about justice regarding DES exposure.

Caitlin's arguments are forthright and strong as she describes her lobbying on the issue of apology for DES with the Massachusetts Senators Kerry and Brown. You don't have to live in USA to voice your support and Caitlin provides options and the contacts in USA for us here in Australia to have a say.

There is potential for Australian media interest in the Public Apology for DES, with some real flow on benefits for the DES exposed community of Australia. Some of these benefits would include public recognition of the DES issue and public interest in the welfare of those exposed. These things would help validate the trauma and alleviate the suffering of those affected. It would also help inform up to 568,000 DES exposed Australians, who still today, are unaware of the fact of their DES exposure, and are suffering the effects of DES without knowing why and what they can do about it. A US Public Apology for DES may even set a precedent for the Australian government to issue a National Apology and go on to formally recognise the rights of Australians to be informed of the possibility of having been DES exposed. Food for thought???

Visit Caitlin's blog post now to check out her options in supporting a US Apology for DES. If you are outside USA and having difficulty with the web forms of Senators Kerry and Brown, you can send a letter to the following addresses:

Senator John Kerry (MA)
United States Senate
218 Russell Senate Office Building
Washington, DC 20510

Senator Scott Brown (MA)
United States Senate
317 Russell Senate Office Building
Washington, DC 20510-2102

Thursday 12 August 2010

Our Breast Screening Behind The Scenes

In March this year the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) reviewed its College Statement (C-Gen 8) Diethylstilboestrol (DES) Exposure in Utero. This Statement now includes information that annual mammography is recommended for women aged 40 and over in view of the recent reports of increased breast cancer risks in these age groups.

The June 2009 BreastScreen Australia Evaluation Final Report (Screening Monograph N0:1/2009, Policy Issue No:6) states: Women who were exposed to DES in utero may have a slightly higher risk of breast cancer. However, the level of risk is similar to exposure to a range of other risks that would not generally require more intensive screening or management protocols.

The Department of Health and Ageing's Cancer Screening Section has been notified by DES Action Australia-NSW of this discrepancy regarding screening between the Report and the College Statement. However, no action is intended by the Department on this matter.

DES Action Australia-NSW stands by the following information provided by its partner organisation DES Action USA:

DES daughters over age 40 should have a mammogram every year, along with a clinical breast examination (presumably at the same time as her annual DES examination).

Recommendations for DES mothers call for annual breast screenings, including clinical breast examinations and mammograms.

Disturbingly, the 2009 BreastScreen Australia Evaluation Report makes recommendation that women aged 40-44 and women aged 75+ be made ineligible for BreastScreen Services. If implemented, the worst impact would be for the thousands of Australian women who are still unaware of the fact of having been exposed to DES.

DES Action Australia-NSW has suggestions to help DES mothers and daughters access annual mammograms at BreastScreen services. To find this information, go to the previous blog item 17/1/09.

Saturday 31 July 2010


July has been the month for wonders for Caitlin McCarthy, screenwriter of the US film in development, WONDER DRUG. Caitlin (in photo) received the award "Most Likely To Be Produced" at the 2010 Action on Film International Film Festival. No doubt she is feeling ecstatic and over the moon. Even a selected scene from WONDER DRUG was screened at this Festival. Caitlin was interviewed following her award achievement and this will be posted on YouTube over the next few weeks.

As we watch WONDER DRUG's development go from strength to strength, all Australians can gain hope for this film's distribution in Australia. The WONDER DRUG film in our country has the potential to end a good deal of unnecessary suffering now and in the future for all unsuspecting DES exposed Australians, who have so far been badly kept in the dark about the dangers of DES.

WONDER DRUG's attention is ever growing with blog posts and media articles. For the full stories about WONDER DRUG and to offer support, see

Monday 5 July 2010

Diagnosed with DES associated cancer?

Here is some interesting information for DES daughters who have had diagnosis of clear cell adenocarcinoma of the vagina/cervix (CCA).

The Center for Analysis for Rare Tumors (CART-WHEEL) is a project by the Royal Melbourne Hospital to study different kinds of rare tumors. People from all over the world are invited to submit information about about their particular tumor so that researchers can develop new insights into these understudied tumors and this may hopefully lead to better treatments.

You can read all about CART-WHEEL and register for participation in this research study at
For further information you can contact:
BioGrid Australia
6 North, Main Building
Royal Melbourne Hospital
Grattan St, Parkville 3050
VIC, Australia

Ph: +61 3 93423167

Australian DES daughters diagnosed with CCA are urged to self-report their cases to BOTH the Adverse Drug Reactions Unit ( and the DES Cancer Registry (

DES Action Australia-NSW knows of instances where cases have gone unreported by health care providers in Australia. Case reports are crucial to knowing the magnitude of the DES exposure problem in our country.

NY Times - Huge Ad

A full page advertisement by Aaron Levine & Associates was published in New York Times (27/6/10) about litigation opportunity for DES daughters affected by breast cancer. Aaron Levine & Associates is a US team of women's health lawyers, experienced in DES injury litigation and currently concentrating on breast cancer in DES daughters.

This advertisement certainly indicates the saga of suffering due to DES is far from over.

There is more information about legal recourse at the blog item 22/11/08 "Media Alert: Australian woman wins battle against 'wonder drug' makers in United States".

Wednesday 23 June 2010


For the past five years we have held the event DES Awareness Week on the Federal and State Health Calendars. This event involves sending media releases and constant messaging to over 1,000 media sources (print, radio, TV). Every year we have a wonderful team of volunteers from different localities across Australia ready to tell journalists a little about their own experience with DES exposure for articles about DES in their own local newspapers. Having articles personalised in this way certainly helps raise interest by media in running the DES story. Here are examples of media interest in DES Awareness Week 2010:

Listen to the ABC Radio Canberra 4/6/10 podcast here

Macedon Ranges Telegraph VIC 1/6/10

Maitland Mercury NSW 2/6/10

We are always looking for volunteers to help us cover the whole of Australia. If you are DES exposed, are able to share some of your story and would like to join our great volunteer team in spreading the message about DES, we would love to hear from you now - contact 02 98754820 or email

.........and there's more.........

EASYMIX 1467AM Mildura Radio Victoria ran the following:

Health check - Are you affected by DES?

Tuesday, 15 June 2010 09:56

Australian women and men are being urged to ask their mothers and grandmothers if they took the anti-miscarriage drug DES (diethylstilboestrol or "stilboestrol") as part of this year's DES Awareness Week. It is estimated that 160,000 Australians may be affected by this drug, many of whom are unaware of their exposure and its health risks.

Asking this one simple question could save lives as 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). 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. Many people remain unaware of their exposure to DES and yet, it is vital that people affected get the specialised health care they need. 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. 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.

Carol Devine, DES Action Australia-NSW coordinator, herself a DES daughter, is pinning her hopes on a feature film now under development in USA by screenwriter, Caitlin McCarthy, called "Wonder Drug", a scientific drama about the DES tragedy.

"Raising conversation about the medical history of your mother or grandmother in relation to DES can be difficult, especially when exposure to this drug could involve the health of a loved one. I hope that when this film comes to Australian cinemas, it will encourage families to talk about DES, or trigger a memory for mothers who were prescribed DES from 1940-1971 (and some cases beyond)," she said.

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, eg, recurrent miscarriages, t-shape uterus, ectopic (tubal) pregnancies and infertility to seek DES information and to visit their doctors. Women can ask for an assessment of DES exposure probability and possible referral to a DES knowledgeable specialist.

"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," says Dr Black. "As a result of case reports of DES associated cervical and vaginal cancer in women exposed in the womb in the 50s age group, there is concern for a possible increase in cases as these women get older," adds Dr Black.

The estimate that at least 160,000 people are exposed to DES in Australia is a conservative figure calculated from available data.

People can find out about DES and see the articles about Wonder Drug at . 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". DES mothers sometimes experience guilt feelings, but should be assured they did what they thought best to preserve their pregnancies and what was the accepted medical standard at the time. DES was also used to stop breastfeeding after giving birth and in the latter years of DES usage, another hormone called progesterone was more commonly used in pregnancy. However, these usages are not known to cause any problems. Even if your mother is no longer alive and remaining relatives offer no information, your own health history may offer clues. If you've had a series of reproductive problems such as cancer, infertility, or endometriosis, among other issues, you may have been exposed before birth.
  • Do your research. If you think you have been affected by DES, ask your doctor for more information, and visit for support and resources.
  • Think about your health. Health problems associated with DES include risk for miscarriage and ectopic (tubal) pregnancy, premature delivery, infertility, undescended testicles and reproductive tract cancers, primarily of the vagina and cervix.
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.

Monday 3 May 2010

DES Website Reminder Cards

DES Action Australia-NSW produces DES Website Reminder Cards to help people with known or suspected DES exposure. This business-sized card highlights and reminds people of this blog site and its reverse-side calendar is a reminder tool for annual DES examinations.
DES Action Australia-NSW makes these cards available to individuals affected and relevant health centres across Australia.

Why is the DES Website Reminder Card important for DES exposed men and women and their families to keep?

DES research is continuing and in particular in third generation effects. Should there be any findings that affect people's health care needs, then they and their families can know about this and take due care. This card can also be kept by people affected in their purse/wallets to help remind them of their necessary health checks.

DES Action Australia-NSW is especially grateful for the assistance of Women's Hospitals Australasia in forwarding (with their Association's compliments) our card samples and notification of the availability these cards to Women's Hospitals in Australia and New Zealand.

Saturday 1 May 2010


This week our star screenwriter, Caitlin McCarthy has attracted the favourable attention of the Associated Press with an article highlighting the stage reading of WONDER DRUG. The photograph here shows Caitlin (centre), with actress Juliet Landau (Buffy the Vampire Slayer) and actor John Buffalo Mailer (Wall Street: Money Never Sleeps).

You can find this article by visiting Caitlin's Facebook website at

While on Facebook, go ahead and support all the efforts towards the development of the movie WONDER DRUG.

Let it be known Australia needs a movie like this!

Thursday 29 April 2010

Be Creative

Through the Cancer Council Victoria Arts Awards held every year, there is wonderful opportunity for people affected by DES exposure to express their feelings and experiences in the context of cancer in a creative way. Entries made to this Arts Awards competition can be in the form of visual art, short story, poetry or film. The cost of entry is only $10 and all entries are displayed in an exhibition tour of Melbourne and regional Victoria.

What a fantastic way to spread the message about DES exposure (and support a worthy charity)!!

Don't worry that entries for 2010 have now closed, because this gives everybody time to get creative juices flowing. You can register your interest now for next year's Awards in 2011 by emailing or phoning 1300 65 65 85.

Here is an entry submitted in the poetry section for 2010:

Compounded maths of DES

twists of wonder drug hype
that sap the tiny fetal system
in cancerous dumps of D-E-S
inert toxic
in utero in mother-love

calm doctor-words to soothe
the fray of maternal nerves -
candy-clatter spills of D-E-S pills
to hide kerching of dividends

subtract post-birth:
wombs of babies and their bits down there
(lost in cancer's lust)
(lost in rush or floods or flame)
(lost in D-E-S hush)

then multiply:
the repeating clouds of cancer thoughts
the shuns intercepting rights for care
the power of wonder drug cravings

an imbalanced equation -
the women who weep
while people in obtusity
sweep dust of D-E-S under carpets

Footnote: Diethylstilboestrol (DES) was an anti-miscarriage hormone prescribed to pregnant women from 1938-1971 (and sometimes beyond) and is known to cause cancer and reproductive problems to both those women and their children exposed to DES.

Copyright Carol Devine, April 2010

Friday 23 April 2010


For immediate and more comprehensive updates about the latest in DES research AND to have this delivered directly to you, think about subscribing to THE DESFACTOR.

With three issues per year, this newsletter by DES Action NSW is a link to the best available information from DES Action USA and other affiliated groups. At the national level, you can keep well informed about lobbying efforts on the Australian front. At the same time, your subscription will help keep the administration of DES Action Australia-NSW alive and well - so, it's a kind of insurance for you and your family!


Your financial help will greatly assist our work to continue, but do contact us if helping is difficult and we can make arrangements. Membership cost is $20 per year - cheque/money order payable to "DES Support-NSW" and send to 14 Edmundson Cl, Thornleigh NSW 2120.
Alternatively you may wish to deposit subscription in the organisation account: Westpac 032-087 11-9974 Account name: DES Support NSW. Please notify us with details if you have done this (Ph: 02 98754820 or email


Address: ............................................................. Postcode: ........

Phone: ......................................

Email address (if one available) to receive newsletter: ............................................

Cheque/Money Order enclosed for $.................... Donations appreciated!

Note: DES Action NSW operates independently of the Melbourne-based group DES Action Australia.

More Success for "WONDER DRUG"

This month, our favourite award-winning screenwriter, Caitlin McCarthy encountered another success with the stage reading of selected scenes from the movie in development, WONDER DRUG. (See This stage reading event, produced by Patti Negri and Brain Brew Entertainment, was held at Los Angeles Cinespace and was a fundraiser for DES Action USA.

Directed by Janet Miller, the reading featured actress Juliet Landau, best known for co-starring as Loretta King Hadler in Tim Burton's ED WOOD and for portraying Drusilla on "Buffy the Vampire Slayer" and spin off show "Angel" (the latter appearance earning her a Saturn Award nomination); playwright, actor, producer, and journalist John Buffalo Mailer, who can be seen in Oliver Stone's film WALL STREET: MONEY NEVER SLEEPS and was previously selected as one of People Magazine's sexiest men alive in 2002; Kent Osborne, a three-time Primetime Emmy nominated animator, author, storyboard artist and actor; actor Scott Atkinson; actor Tegan West; actress, stand-up comic, and voice over artist Alicyn Packard; actress Ruth Williamson; and award-winning actress, screenwriter, and voiceover artist Elizabeth Kate.
Caitlin tells us that there were high profile attendees at the reading and after-party, including: WONDER DRUG's executive producer Mark Romeo; Jim Forbes, the producer and "voice" of VH-1's "Behind the Music"; Craig Sneiderman, Director of Booking, Global Touring for Live Nation; D.H. Peligro, drummer of the Dead Kennedys; Oscar-nominated director Matia Karrell; actress Hallee Hirsh (16 to LIFE and YOU GOT MAIL); screenwriter/producer Gretchen Somerfeld (the upcoming FACE VALUE); director Nathan Atkinson (COMPULSIONS and TRACKS OF SAINTS); and many others.
Judging by response, there is certainly a huge groundswell in popularity for WONDER DRUG in its developmental stages! We’d love to see WONDER DRUG the movie in Australia. So here’s a call to all Aussies - please put in a plug for Caitlin at
Keep on keeping on, Caitlin!

Thursday 11 March 2010

TOXIC BODIES: Hormone Disruptors and the Legacy of DES

A New Book by Nancy Langston

ISBN 978-0-300-13607-4

Focusing on the history of DES, Nancy Langston gives a disturbing analysis of government neglect to regulate synthetic hormones. This book holds many lessons in modern precautionary policy and the author declares women’s bodies to be toxic waste sites for endocrine disrupting chemicals and drugs. A compelling read!

By ordering your copy via and designating DES Action USA, you can make a donation (at no cost to you) towards the DES Action cause.