About DES Action Australia

DES Action Australia formed in late 1979 and, in retrospect, it was a result of serendipity, several independent factors aligning.

Over the years there had been a few small articles in the Australian media reporting on DES. However these were small, once-off articles that provided no contact point or suggested follow-up for people who thought they may be affected.

The DES issue received more extensive publicity in Australia in September 1979, following media interest in a New York court case. Joyce Bichler was the first DES daughter to successfully sue the pharmaceutical industry over the ‘DES Cancer’, clear cell cancer of the vagina/cervix. In September 1979 Melbourne's Age newspaper and local ABC TV not only reported the case, but did follow-up stories looking at the use of DES in Australia.

What we didn’t know at the time was that DES Action USA was instrumental in this publicity, having generated publicity in the United States around the court case. Pat Cody of DES Action USA had briefed an Australian reporter interested in the story, providing extensive background on the DES issue. The result was that the newspaper articles were comprehensive, accurate and couldn’t easily be dismissed - even though the health authorities tried.

The reaction of the health authorities was to initially deny that DES was ever used in Australia (this came as rather a surprise to us) and then say it had very limited use in Victoria only, and everyone concerned had been notified (again, news to us!)
Fortuately an eminent Melbourne Obstetrician came forward saying that DES had been widely prescribed in Australia. In addition, he and the the parents of a DES daughter who had died of the DES cancer were interviewed on TV.

The Union of Australian Women organised a meeting for interested women. At the meeting women's health advocate and author Bon Hull spoke, outling the history, the effects and the politics of the DES issue.

Those of us that attended that meeting still remember the relief of meeting others “in the same boat” and realising we were not alone. A small group formed, comprising DES mothers, daughters and other interested women. The UAW "assigned" Yvonne Smith to help set up the fledgling group and she was an invaluable resource, providing support and practical suggestions. Another UAW member, Wendy Lowenstein, also provided practical assistance such as lending us her postal box to use as our address until we organised our own. Yvonne, Bon and Wendy were our early mentors and great role models.

So the formation of DES Action Australia was a result of confluence of a number of factors – publicity generated by DES Action USA; DES Action USA being the contact point for interested journalists, and providing accurate and comprehensive information to an Australian reporter; an Australian doctor willing to speak out; the DES parents undertaking the difficult task of going on TV to tell their story; and the UAW providing the opportunity for DES exposed mothers and daughters to meet, exchange information and share stories.

Finding out the Facts

There was no information available. Many people ended up going to medical libraries and looking up the journals. We made contact with DES Action USA (and later other DES Action groups around the world) to share information and experiences.

Lobbying for resources

Shortly after the group formed, the UAW assisted our first foray into political lobbying. A deputation of four DES Action members met with the Victorian Minister of Health and his advisers in February 1980. After a very protracted and frustrating process, a DES Clinic for DES daughters was eventually established at the Royal Women’s Hospital.

Getting the Message Out

Our first priority was to disseminate accurate, up-to-date information - hence our newsletter DESPATCH. From the first issue in September 1980 DESPATCH documents our activities and the emerging health issues over the years.

An article by Nancy Dexter in the Age newspaper in April 1980 resulted in so many phone calls, both day and night, that the phone had to be disconnected at regular intervals just to allow respite – remember. this was before answering machines; and long before home computers and emails

DES on 60 Minutes DES Action members participated in a double segment on 60 Minutes, screened in April 1983. It was well researched, comprehensive and set out the issues as known at the time, i.e. it concentrated on the DES Cancer. Following the program going to air we were inundated with thousands of letters – if only there had been websites and emails back then!!!!

In 1983 we produced a pamphlet 'Are you a DES Daughter?' Based on a DES Action USA pamphlet, it outlined the known effects of DES (at that time), the correct screening for the DES Cancer and a list of Australian brand names. It was designed to not only inform people who contacted us, but also give them something to take and show their doctor. We also produced and distributed information packs.

A comprehensive article on the DES issue (again, as known at that time), DES: The Wonder Drug You Should Wonder About, was published in the Health Issues Centre's journal in 1985.

A poster DES the wonder drug you should wonder about… was produced. Given it was designed 30 years ago, it now has a rather trendy “retro” feel to it!

Our activities to raise awareness of the DES issue have included radio and TV interviews; writing 'Letters to the Editor', participating in consultations/reviews of services; giving talks to both community groups and medical professionals; and participating in forums and workshops.

Other DES exposures

Right from the start we were contacted by people who realised they had other forms DES exposure (i.e. not in utero exposure) and who were experiencing a range of problems:
Women treated with stilboestrol to suppress lactation were reporting breast cancer; women treated with DES as teenagers for acne were reporting difficulty getting pregnant, and a range of gynaecological problems; a transgender woman who received DES pre-operatively in the 1970s reported many contemporaries had since died of breast and other cancers.

Discovering the Tall Girls

In 1997 the Tall Girls group was established representing women who, as tall girls, were treated with synthetic oestrogens to stunt their growth.

Again, it was a result of serendipity, of several independent factors aligning.

In June 1997 the front page of The Age newspaper featured a story on experimental hormone treatment given to stop the growth of tall young girls. As the article mentioned DES, the newspaper referred anyone ringing with inquiries to our group.

The beginnings of the Tall Girl story was featured on SBS TV Insight program in September 1997.

As set out in Participation, Empowerment and Effectiveness: The Tall Girls the focus of the group was the mantra: what had happened to them? why had it happened? and what were the long-term medical outcomes of what had happened?

Tall Girls advocacy led to a world first epidemiological study into the long term effects of hormone treatment to stunt the growth of tall girls. This was funded by the NHMRC and conducted by The Centre for Mothers and Children's Health, La Trobe University, Melbourne. The results from the study began to be published from 2002 in The Lancet on fertility outcomes.
Unfortunately, because funding ran out, important data on gynaecological outcomes has not been published. More recent studies on fertility and premature ovarian failure by Dutch researchers have been published confirming the conclusions of the Australian study. 

In 1999 DES Action was involved with the the Royal Women’s Hospital (RWH) in revamping information resources on the DES. The resources were launched at a forum, Discovering DES, held in June. DES Action members participated in the Forum and subsequent media coverage, including a segment on A Current Affair. The national media coverage following this event lead to both the RWH's information service and the clinic being overwhelmed with inquiries.

DES Action International Colloquium 2001

April 2001 was the 30th anniversary of the publication of the landmark Herbst et al article, and to mark the occasion DES Action USA organised the DES Action International Colloquium held in Washington DC. Representatives of international DES Action groups, including Australia, Canada, Ireland, France and the Netherlands, attended; as well as representatives of the Tall Girls. It was a memorable event, providing to opportunity to meet, share stories and learn of the research being undertaken.

In July 2002 there was a strong sense of déjà vu among the DES community with the news that a long-term US study of HRT was halted 3 years early due to the discovery of serious health risks for the participants. For years HRT had been promoted as a ‘wonder drug’ and youth elixir for menopausal women. The long awaited scientific evidence showed that, for healthy women, the risks of HRT far outweighed the benefits. The combinesd oestrogen and progestogen supplements were shown to increase the risk of invasive breast cancer when used for more than 5 years. Furthermore, rather than protecting women from heart attacks and strokes, HRT was shown to increase the risk.

In 2004 we celebrated our 25th anniversary with a DES Action/UAW reunion, a time to catch up and reflect.

April 2006: The Inaugural Conference on Disease-Mongering was held in Newcastle, NSW. The DES story is not only about a pharmaceutical disaster, it also provides a sobering case-study of disease-mongering over the decades. DES was a profitable product in search of an ongoing and expanding market. What came through loud and clear at this conference is that the pharmaceutical industry continues, as it has always done, to put profits before people.

Public Health Crisis Looming

April 2011 was the 40th anniversary of the landmark Herbst et al article and our focus was certainly brought back to cervical cancer and the importance of Pap smears when a DES granddaughter was diagnosed with cervical adenocarcinoma. Clinicans are reporting an apparent increase in the incidence of cervical glandular-cell cancer (cervical adenocarcinoma) in young women, and are recommending annual Pap smears.

From December 2017, the Pap test was replaced with an HPV DNA test. The National Cervical Screening Program will invite women from age 25 years to have a HPV DNA test every five years.

A public health crisis in the making, just like in 1971.


Why DES Action?

We have often wondered why we became "active" on the DES issue. After all, none of us were "health activists" in any sense. The 1970s feminist catchphrase “the personal is political” seems to encapsulate the emergence of DES Action Australia –the history of DES Action is about ordinary people becoming politicised through there own experiences of finding out they are DES exposed.

The story of DES is a story of a medical disaster, of a public health health crisis that was ignored. It is a story of experimentation; of a drug industry that fails to alert the public and recall faulty and dangerous products; of a health care system that has no recall system or ability to carry out research into long-term drug safety – ie adverse drug outcomes that emerge years after the original exposure.

It is a system that lacks accountability and a duty of care.

DES Action members are the human face of that story – we have to live with the effects of DES every day, we have no choice.

Over the years we have had periods of "action" and periods of "hibernation", mainly due to the level of energy we can put into group activities while experiencing the ever widening range of long-term health outcomes of DES exposure.

In one sense our membership is an incredibly diverse group, including those with cancer, those without; those with children, those unable to have children; those who struggle with autoimmune disease, thyroid dysfunction, gastro-intestinal conditions, allergies, depression, stress-related conditions....

The development and understanding of the endocrine disruption paradigm provides the framework that allows us to make sense of our diverse experiences.

On the personal level we are back to sharing information, trying to understand and learn from each other the diverse range of interrelated health conditions which seem to flow on from endocrine disruption.

The group has always revolved aroung sharing stories, the power of the personal testimony. Hopefully this webpage will assist in the process