why did I become an activist with DES Action? I think it was the shock, the sense of injustice: Why weren't we told? Why weren't we warned?
I am a DES daughter
and a founding member of DES Action Australia, a support and advocacy
group for people exposed to DES and related hormones.Of
course I am a lot of other things besides this, but it is around the DES
issue that I have become an "activist".
I have often wondered
why. DES or di-ethyl-stilboestrol is a synthetic oestrogen. In Australia
DES was more commonly known as stilboestrol. However we now know any oestrogenic
drug can have the same effects or health outcomes.
For over 30 years
(early 1940s to 1970s) it was prescribed during pregnancy in the mistaken
belief that it prevented miscarriage. It was also mixed with vitamins
and prescribed as a general pregnancy 'tonic'.
In 1971 it was discovered
that DES caused a rare form of vaginal cancer in DES daughters i.e. women
who were exposed to DES in utero. That is, the cancer was latent, emerging
years after the original exposure. In addition, the cancer was symptomless,
aggressive and a routine Pap smear doesn't detect it.
I always thought
that prescription drugs were safe. And, furthermore, if a drug was suddenly
found to be harmful, I thought you would be informed. After all, they
recall cars if they are found to be faulty, if they put lives at risk.
And they recall and issue public warnings if salami is found to have salmonella.
So what was the reaction
of health authorities to this DES disaster? Both here and elsewhere in
the world - silence. In September 1979 the DES issue received publicity
in the media.
A Melbourne couple,
whose daughter had died of the cancer, were interviewed on This Day Tonight.
My mother, Hazel Vickers, was watching and to her horror realised that
she had been prescribed the drug, and so my involvement with the DES issue
began. The reaction of the health authorities in 1979? To say that "DES
wasn't used in Australia."
This was then changed
to "only a few women" had been prescribed DES, and "they have all been
notified." I can still remember how alone and how scared I felt: Trying
to find a doctor who knew the proper screening test, being constantly
derided, patronised and dismissed by doctors (usually in the middle of
the examination!). The level of hostility was unbelievable.
Luckily the Union
of Australian Women organised a public meeting for interested women. I
remember clearly the relief mum and I felt at that meeting - just meeting
other DES daughters and mothers and sharing experiences. At the meeting
Bon Hull outlined the history, effects and the politics of the DES issue.
A small group formed consisting of DES mothers and daughters, and interested
women. The UAW "assigned" Yvonne Smith to help the fledgling group and
she was an invaluable resource, providing support and practical suggestions.
also was a great support, and in fact lent us her PO box as our address
until we organised our own. Yvonne, Bon and Wendy were our early mentors
and great role models. Since 1971 medical research has revealed an ever-increasing
range of long-term effects of oestrogen exposure. I have often thought
it was like a stone thrown into a pond, with the ripples slowly moving
out in ever-widening circles.
DES mothers have
higher rates of breast cancer. Many DES daughters and DES sons have DES-related
structural abnormalities of the reproductive tract. In addition both groups
have increased risk of cancers of the reproductive tract, increased rates
of infertility and reproductive problems.
showed increased rates of autoimmune disease, thyroid dysfunction, chronic
fatigue and depression in the DES population. Recent experimental animal
research shows that DES effects may be passed down to the next generation,
to "DES grandchildren."
So why did I become
an activist with DES Action? I think it was the shock, the sense of injustice:
Why weren't we told? Why weren't we warned? Because not only were we not
warned, the health authorities actively put out misleading information,
and actively dismissed us. And this continues today.
The experience lead
to a shift in my perception of how the world works. And why have I stayed
involved? Because in a sense I have no choice: I am a DES daughter and
(unfortunately) it appears my daughters are "DES granddaughters".
Recently there has
been renewed interest in DES population by the international scientific
community. DES is now recognised as an endocrine disruptor. Many scientists
believe endocrine disruption will be the most important global health
issue of the future. Rather than explain it here, please visit our website: