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Listen to the short radio interview featuring Carol Devine, founder and coordinator of DES Action Australia (NSW), and Dr Jules Black, Queensland Gyneocologist and sexuality expert, about the silence around the DES issue and the difficulties to push for a much needed Australian DES National Public Education Campaign 10 years after the USA first DES national campaign launched in 2001. In Australia it is estimated that 740,000 people have been exposed to DES diethylstilbestrol, yet no such campaign has been held. These people are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.
“Culture of Silence on sex hormone link to cancer“ – Radio Interview about DES featuring Carol Devine and Dr Jules Black, produced by Annamarie Reyes April 05th, 2011.
Below is a short summary and a few quotes from this interesting radio interview from down under:
DES National Public Education Campaigns or the Wall of Silence
The USA has moved to legislate to make it compulsory that a DES National Public Education Campaign is held for DES affected communities. Dr Black explains that the USA acting first on public campaigns came out of increased pressure amongst affected women in the number of millions. In Australia he says “I found constantly with my patients a wall of silence”.
“Since the Food and Drug Administration approved this drug it was important for them to make sure this drug was ok (…). It wasn’t (…). There was a certain degree of cover up fear at first but then when the story came out and due to pressure by female organisations, support groups and so on, they admitted”, comments Dr Black. The FDA acknowledged the DES tragedy 40 years after they issued a warning about the DES cancer link.
The equivalent support group in Australia pushing for change is DES Action Australia (NSW). Carol Devine, the coordinator, explains the strugle to put the issue on the public agenda since the 1970’s when the issue came to light. The USA could not keep it quiet anymore. Too many people were affected by Diethylstilbestrol exposure. The USA went as far as holding a DES National Public Education Campaign in 2001 which led to legislate that research should happen and DES and potential DES affected people should be informed. “Over there”, comments Carol Devine, “there is a fantastic body of women called DES Action USA. They are all right behind making sure these things happen in the USA”. In Australia, Carol Devine sent all the documentation papers about the USA DES National Public Education Campaign to the Australian Federal Health Minister. A few days later she received the package back in her doorstep saying “We do not require these”. “It has been a total shut down on this issue in Australia and quite frankly this is a national disgrace” comments Carol. Advocates in Australia have no choice but take the matters to the Human Rights Commission.
What’s the situation in France and Europe?
In France and in other parts of Europe, the FDA warning issued in 1971 about the health concerns related to Di-ethyl Stilbestrol didn’t get heard and the drug continued to be prescribed to pregnant women until the late 1970’s early 1980’s. The support group Réseau DES France was established in 1994. Their first DES public education campaign was launched in 1997 with the brochure “DES Distilbène® Exposure, the questions you ask yourself” aimed at raising DES awareness amongst the general public. Since 1994 Réseau DES France has engaged in many areas (information, cooperation, advocacy and lobbying, and DES lawsuits to name just a few). They’ve achieved many results and successes such a the right to longer maternity leave for DES pregnancies.
In the United Kingdom, Ireland and the Netherlands support groups have also been created. DES Action UK launched a petition in 2009 to demand a Public Enquiry aimed at investigating the effects of the drug diethylstilboestrol (DES) on women. They collected 130 signatures. “The government statistics are hopelessly out of date and information is not freely or widely made available by the government” write the petition creators Nick de Bois and Barbara Killick.
I can’t stress enough the importance and crucial need for efficient DES National Public Education Campaigns to ensure all people affected by DES exposure are aware of its side effects for them and their children. Collaboration between DES Action groups is also very important. The silence around the DES issue poses health risks in itself as many people including doctors don’t even know what DES is, what the health risks are, and how to prevent them. With so many people affected by it, and so few aware that they have been exposed, it is the responsibility of our governments to raise public awareness of this global health catastrophe.
I wish DES Action Australia (NSW) the very best of luck with their battle for an Australian DES National Public Education Campaign and hope more DES daughters and sons will make their voice heard. We are not alone in this; Millions of people around the world have been exposed to DES so surely if we shout loud enough we will be heard not only by governments but also by fellow DES victims unaware of their DES exposure and its health risks.
Sources: Réseau DES France, DES Action Australia (NSW), DES Action UK
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.