DES Activist outside USA

This week I am honoured to publish a guest post from Carol Devine, DES daughter, Founder and Coordinator of the Sydney based group, DES Action Australia-NSW, which formed in 1995. Many people, including those unaffected by Diethylstilbestrol I am sure will be interested in reading Carol’s post as it shows how long and difficult the road is for a DES activist advocating for the needs of DES exposed people in Australia.

DES Activist outside USA – An Australian Journey

It is my impression that in comparison with USA, the downplaying, dismissiveness and resistance by governments in countries outside USA to the DES exposure issue have been stauncher. In Australia, to the demise of our comparatively smaller DES exposed population, the DES problem has been minimised, even with the glib remark, “It’s only a problem in USA”. Cold and uncaring comments that disenfranchise DES exposed Australians, have possibly evolved from something that runs much deeper and are firmly entrenched.

My pet theory is: that from the time the DES cancer link was made in USA in 1971, until the time this causal link first reached the news media in other DES-affected countries, drug companies and those with vested interest exerted utmost damage control outside USA. In concentrated effort, every opportunity would have been taken within this bonus timeframe to use influence to ensure government ideas on managing the DES exposure problem would protect those companies. Those ideas by government would be “set in concrete” for all time. Just a theory of mine – it’s no rocket science! However, it seeks to explain those cold, uncaring comments and the horrific facts revealed when our DES Action group in NSW, Australia, accessed government documents. It might also explain the uncanny similarity in the worded government responses to DES Action UK and DES Action Australia-NSW.

To be frank, from my viewpoint, the journey for an activist advocating for the needs of DES exposed people to government is like “banging your head against a brick wall” – many times. However, there may be greater chance of some success by developing the strongest possible argument when lobbying government. This means having the best available information. For this, it means digging – a lot.

Digging for numbers

Citing the best feasible estimate of the extent of the DES exposure in Australia is absolutely necessary for government recognition of the DES problem. No numbers equates to having no significant problems, or even not to exist at all. In Australia, to obtain an estimate, the most reliable data sources are the general population health data (Australian Institute of Health and Welfare -established 1982) for incidence of clear cell adenocarcinoma vagina/cervix and the State Cancer Registries (prior to 1982). Reports offering an estimate by cancer experts to government have been found to be grossly inaccurate. Adverse drug reaction reports are also unreliable, since cases of the DES associated cancer are not always reported by medical professionals. Delving into government comments about any unusual data trends and investigating inconsistencies with data have been important. By delving it was found that in the early 1980s, a doctor phoned the Therapeutic Goods Administration (TGA) to instruct that reports of DES associated cancer no longer be recorded. To our dismay, the TGA (Australia’s drug watchdog) complied with this.

Digging for history

It makes sense in advocacy to know the full inside story of previous management. In Australia, Freedom of Information applications were necessary to obtain committee minutes of the TGA in relation to how the DES problem has been addressed since 1971. The minutes are all-telling and disturbing for everyone affected by DES, uncovering many shocking revelations. However, the information contained is very necessary in providing a baseline for approaches in lobbying. These documents showed the TGA’s first decision was to take a reactive role to any media arising about DES, rather a proactive role in issuing media releases. This decision was made out of consideration of the possibility of creating alarm.

Our Lobbying Experience

With strong argument for improved management of the DES problem, the government still manages to duck and weave continually. The experience is of “going around in circles”, whilst at the same time, trying to become familiar with the unreliable government “machine”. Astonishingly, the DES issue is shoved aside by individuals holding government positions with roles appropriate to giving attention to the DES problem. In the trial and error process of lobbying, the problem is finding exactly where the DES issue can position itself. DES Action Australia-NSW has recently presented the DES issue for the attention of the Australian Human Rights Commissioner. In spite of the many negative aspects of the lobbying experience mentioned in this article, there is still to this day, no reason to stop these endeavours on behalf of DES exposed people.

Importance of networking

If situations and experiences are similar, the power of networking can never be underestimated. Together, there can be learning from each other’s successes and failures. It is my hope that by sharing our experience, it will encourage networking between activists for the DES cause, and in particular, between activists outside USA.

The journey of DES Action Australia-NSW can be traced in greater detail at www.desnsw.blogspot.com

Carol Devine
Coordinator, DES Action Australia-NSW
c_devine@bigpond.net.au
(Note: DES Action Australia-NSW operates separately and is independent of the Melbourne-based group DES Action Australia)