Welcome to DES Action Australia

DES Action Australia is a national support and advocacy group for people exposed to the synthetic oestrogen DES, and related hormones.

DES stands for di-ethyl-stilboestrol. In Australia DES is more commonly referred to as stilboestrol. It is now known that any oestrogenic drug has the same effects. So when we refer to DES we are, in fact, including any oestrogenic drug.

Throughout Australia, from the early 1940s to the 1970s, DES was prescribed to pregnant women, initially in the mistaken belief it prevented miscarriage; and then, in an equally mistaken belief, as a treatment for healthier pregnancies. In 1971 it was discovered that DES caused a rare form of vaginal cancer in DES daughters. That is, the effect was latent, emerging years after the original exposure. Since that time other serious, latent health effects have emerged. It is now known that DES mothers, daughters, sons and grandchildren, may face serious health risks because of their exposure.

DES is Australia's biggest drug disaster

DES represents a public health nightmare: A drug that is in use for many years, prescribed in good faith and presumed to be safe is suddenly found to have latent, totally unexpected, harmful health effects.

Why everyone should be concerned

DES: Failure of Australia's Drug Safety Regulations.

Every Australian expects that the prescription drugs they take are safe. We accept that when DES was first used in the 1940s there were no strict drug regulatory requirements in place. However, it was a different story in 1971. If a prescription drug you are prescribed is subsequently found to cause serious health problems, you expect to be informed about it. This did not happen with DES.

The reaction of Australia's health authorities in 1971 was silence.

Why?

"Canary in the Coal Mine"

DES is the first example of the rather cavalier, often experimental, use of sex hormones in medicine. Over the past 60 years synthetic hormones have been used for a diverse and often bewildering range of treatments, such as the oral contraceptive pill; as treatment to suppress lactation; as treatment of "tall girls"; as the "morning-after" pill; in fertility treatments and IVF programs; and as post-menopausal hormone replacement therapy (HRT). The list is ongoing.

Will these treatments also have latent, unexpected, harmful effects that emerge years after use? One only has to look at the experiences of the "tall girls" and the recent controversy over HRT for the probable answer.

DES: Endocrine Disruptor & Sentinel of the Future

In recent years there has been a significant paradigm shift in science, with the emergence of the endocrine disruption model. DES is now recognised as an endocrine disruptor, and the DES experience provides the primary model of endocrine disruption by environmental oestrogens.

For the past 60 years a large number of man-made chemicals have been released into the environment. These compounds are persistent in the environment and, although not oestrogens, they act like oestrogens when absorbed by the body. Because of the DES experience, it is now realised that these environmental oestrogens have the potential to disrupt the endocrine systems of animals, including humans.

The DES-exposed population has thus taken on added importance as leading indicators of the effects of endocrine disruptors: that not all adverse effects of exposure are immediately apparent, but are expressed many years later; that the effects are unexpected and irreversible; and that the effects appear to be trans-generational.

What do we want?

Today our immediate and direct needs are the same as they were when we started out 25 years ago. We need accurate, reliable and up-to-date information; sympathetic and informed doctors; and access to appropriate screening tests and holistic health care services.

On a public health level, we want a drug safety surveillance and reporting system that works. In Australia the Adverse Drug Reactions Unit (ADRU) of the Therapeutic Goods Administration has this responsibility. The ADRU was established in the wake of the thalidomide tragedy. That model is now outdated and inadequate. We believe that ADRU - in the wake of the DES experience and in recognition of the endocrine disruptor paradigm - needs to be radically restructured and resourced so the health of all Australians can be protected.

The DES experience clearly illustrates that the existing public health drug safety and protection systems do not and cannot work. Exposure to an endocrine disruptor leads to multiple, latent, unexpected outcomes that are not readily apparent at the time of exposure but that are expressed many years later and, possibly, in the next and future generations. This has implications for the research undertaken before a drug is made available. It also has implications for the monitoring and reporting of adverse effects, as they emerge over time.

The process of informing the public of an adverse outcome via the doctor through a circular is antiquated and ineffective. This was clearly demonstrated in the June 2004 edition of the Australian Adverse Drugs Reaction Bulletin article 'The legacy of diethylstilboestrol (DES) from the 50s and 60s.' The information provided focused exclusively on reproductive biology and cancer, and ignored the issue of endocrine disruption. Not only was it 20 years out of date, the information provided was simplistic and possibly misleading.

What is needed is an ongoing, interactive education process that informs the medical profession and the general public of the adverse effects of endocrine disruptors as they emerge over time. A model exists with the (US) Centres of Disease Control's DES Update campaign. It is a national education campaign for the medical profession and the general public. That is, it aims to educate both at the same time. It uses innovative methods such as the web site, a series of forums and teleconferences, and CD-ROMs.

Further reading:
CDC's DES Update Campaign, 2003 (25)
Need for DES Education Campaign letter, 2004 (29)
Response to ADRU Bulletin, 2004 (30)
DES & Other Endocrine Disruptors letter, 2004 (31)

In summary, we are asking that the Australian health authorities learn from our experiences. DES is now recognised as an endocrine disruptor, and the DES population has thus taken on added significance as leading indicators of the effects of endocrine disruption. Research is long overdue. There is an urgent need for onging research and monitoring of the health of the Australian DES population, including DES mothers, daughters, sons, grandchildren and “tall girls”.

Contact Us:
desact@vicnet.net.au