My DES Daughter Journey – Interview with June Stoyer

 

Recorded radio interview by The Organic View, with host, June Stoyer joined by DES Daughter DES Daughter Google+ icon Domino talking about her journey.

Part 1

Part 2

Part 3

Alternatively, click here to listen to the show, and/or download the iTunes podcast.

The Organic View Radio Show logo Host June Stoyer interviews the top CEO’s, experts, movers and shakers that affect the organic industry as well as our environment. The Organic View show explores all of the issues impacting the organic industry, proposed regulations, the environment, politics, living green and sustainability.

Read more about my DES Daughter journey : Introduction and Doctors.

DES Sons

What is a DES Son? Who are they?

DES Sons are all the men born between 1938 and 1978 who have been exposed in utero to the anti miscarriage drug and man-made estrogen Diethylstilbestrol (or DES in short) Diethylstilbestrol DES Google+ Page icon.

They live in the U.S.A., Canada, Australia, Europe and all corners of the world where the drug was prescribed decades ago during the pregnancy of their mother (also called DES Mothers).

DES Son image
Image © courtesy of DES activist and CNN iReporter KMFDallas

DES Daughters

What is a DES Daughter? Who are they?

DES Daughters are all the women born between 1938 and 1978 who have been exposed in utero to the anti miscarriage drug and man-made estrogen Diethylstilbestrol (or DES in short) Diethylstilbestrol DES Google+ Page icon.

They live in the U.S.A., Canada, Australia, Europe and all corners of the world where the drug was prescribed decades ago during pregnancy.

DES Daughters during a DES Symposium image
DES Daughters during the MGH Boston 2011 DES Symposium – Andrea Goldstein, Caitlin McCarthy, Cheryl Roth.

DES Sons Numbers and Health Concerns

How many DES Sons are there?

Des sons versus DES daughters image
Less research has been conducted on men’s Diethylstilbestrol exposure, yet there are as many DES sons as DES daughters…

According to DES Sons International Network, the exact statistics on the number of males exposed to Diethylstilbestrol before birth are difficult to obtain, but the most reliable estimates from within the U.S.A. place the figure at somewhere between 200,000 and 1.5 million males born between 1947 and 1971 (the years that Di-Ethyl Stilbestrol® was used to support pregnancies in the U.S.A.).

DES sons were also born in a number of other nations (Canada, Europe, and Australia) but reliable statistics on global exposure rates are unavailable.

 

DES Sons or the forgotten piece of the jigsaw

Despite the fact that women who have been prescribed Diethylstilbestrol during pregnancy gave birth to as many sons as daughters (1 to 3 million each, in and beyond the U.S.) far less research and advocacy on behalf of DES sons have occurred. Nearly 90% of the primary research on the human health effects of Diethylstilbestrol has been limited to DES daughters, and most of the public health research, education and advocacy has centered around concerns of DES daughters only.

Although less is known about the consequences of diethylstilbestrol exposure in men than in women, a number of studies have confirmed and identified some important health concerns. It is therefore important for men who know or suspect they are DES sons to be aware of possible problems and know what to do about them.

Health problems experienced by DES sons range from harmless irregularities to problems that may require medical treatment. Many people, including some doctors, do not know that men can be affected by DES exposure. The fact that genital anatomic abnormalities in boys exposed to Di-Ethyl Stilbestrol® in utero are not well known by gynecologists was highlighted in a recent study published in June 2011 by the National French Agency for the Safety of Health Products (AFSSAPS). It has been estimated that as many as half of all DES Sons are currently unaware of their exposure.

When DES advocate Michael Freilick said to his doctor he was a DES son, his doctor replied: “Forget it. It has nothing to do with your testicular cancer.” Sadly, Michael who was president of DES Action USA passed away in July, 2011 (his death is unrelated to DES). “As a DES Son who had surgery for testicular cancer at age 29 he learned that men, and especially young men, need to pay more attention to their health. He wanted to alert them, and spoke out where ever and whenever he could. Michael used his experiences to show how early detection prolonged his life for decades” comments DES Action USA. Always pushing for continued research for DES sons, his contribution and legacy to the DES cause and DES sons in particular are remarkable.

What to Do if You Are a DES Son?

Tell your doctor and be sure to learn about the most common symptoms associated with the conditions referenced on this page.

Don’t stay alone, join the DES Sons’ Online Discussion Network for support and information on the latest DES research findings.

The DES Sons International Network was founded in 1999 in order to accomplish two major goals:

  1. Provide support for males from around the world who were exposed in utero to Diethylstilbestrol.
  2. Strengthen understanding, awareness, and major research about the range of adverse health effects that DES sons have experienced as a result of their exposure.

I would like to take on the opportunity to thank all the men and DES sons who commented on my facebook page or contacted me since I launched the blog in February 2011. Please break the wall of silence around the DES issues, keep commenting and sharing your DES stories. Together we are stronger!

DES Sons (Part 1) to be continued – read our next posts on the DES sons studies and Diethylstilbestrol gender identity.

Sources: DES Sons International Network, CDC, DES Action USA

Flickr DES Diethylstilbestrol’s Photostream

In a bid to further raise awareness about the DES issues and reach a wider audience, we’ve created a new DES flickr page. It includes photos of DES events such as the recent DES Symposium at Massachussets General Hospital in Boston, DES adverts, pills, tablets and bottles, DES brochures and newsletters, DES graphs, press cuttings and much more.

flickr DES Diethylstilbestrol's Photostream image
NEW: flickr DES Diethylstilbestrol's Photostream

flick is an online photo management and sharing application. Its primary goals are to help people make photographs available to those who matter to them, and to enable new ways of organizing images. It offers the perfect platform to share photos from around the world.
But flick is one of those ideas that depends on interconnectivity.

We would like to invite all DES support groups and activists to collaborate to this project by contributing photos to the new Diethylstilbestrol flickr page. By sharing as many images as possible we can create a comprehensive source of DES related photos and really show how far and wide the DES issues are affecting people’s lives.

By “Geotaging” the DES photos we can highlight on the DES Diethylstilbestrol Map where the DES community is taking action to break the wall of silence around the DES issues, as well as where the DES health concerns are being ignored.

Join us on flickr:

  1. Check out the DES Diethylstilbestrol Photostream and Map
  2. If you already have a flick account, add us as a contact.
  3. Email your photos to [email protected] with a short description and title.

DES Diethylstilbestrol flick page was created and is administered by Diethylstilbestrol, Journal of a DES Daughter.

If you haven’t done it yet, you can also join us on facebook and/or twitter. Our facebook community is the perfect medium to share views, photographs and DES stories. Follow us on twitter and keep up to date with everything Journal of a DES Daughter is doing.

Help us break the wall of silence around the DES issues by joining these social networks and encouraging your friends to do the same.

DES National Public Education Campaigns

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 cancerRadio 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?

Reseau DES France educational brochure front cover image

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

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 A journey of a DES activist is like banging your head against a brick wall imagethe 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
[email protected]
(Note: DES Action Australia-NSW operates separately and is independent of the Melbourne-based group DES Action Australia)