DES Action Australia

DES (diethylstilboestrol)
The experience in Australia and
the role of DES Action groups
Marian Vickers and Janet Cregan-Wood
DES Action Australia
Pharmacy Practice and Public Health - PHAR 4823
University of Sydney, March 21, 2017

2
Di Ethyl Stilboestrol (DES)
in Australia known as
Stilboestrol
On reflection the DES Action Australia story is a
result of serendipity, a confluence of circumstances
Integral to this is the role played by the media

3
April 1971
DES emerged as a public health crisis in when it was discovered that DES daughters
were at risk of an aggressive, glandular cancer of the cervix/vagina because of their
in utero exposure to DES.
What happened in Australia?
From the consumer's viewpoint, and for all practical purposes, nothing!
September 1972
The response of the Australian health authorities was very laid back, if not negligent.
In September 1972 a small statement on DES by the Drug Evaluation Committee
appeared in the Medical Journal of Australia (MJA) “ ….As far as can be ascertained,
stilboestrol has not been used to any extent in this country for the management of
threatened abortion… It is reasonable to conclude that stilboestrol should not be
given in pregnancy...”
Exactly how this was “ascertained” is anybody’s guess, and probably was just that!
It was more creative thinking than based on empirical research.

4
1976
Small isolated items on DES
appeared in Australian media
but led nowhere...
No contact details given
No follow-up possible
THE AGE
14 April 1976
THE SUN
30 January 1976

1979
saw a convergence of different factors
In 1978 DES Action USA formed and was
disseminating comprehensive and accurate
information on adverse effects of DES
Joyce Bichler was the first DES daughter to
successfully sue a drug company. The court
case was being heard in 1979 in New York,
and there was considerable international
interest in it
An Australian journalist interested in the
court case was then briefed by Pat Cody of
DES Action USA on the wider issues around
DES exposure
In September 1979 DES seemingly
appeared out of nowhere when THE AGE
newspaper ran a series of scoops over
two days

THE AGE 4 September 1979 Front Page

4 September 1979 THE AGE Page 16

8
4 September 1979
THE AGE Page 16
Excerpts

9
5 September 1979 THE AGE Front Page

10

11

12

13
6 September 1979 THE HERALD

14
A Time of Confusion and Contradiction
The Media (Newspapers and TV) were presenting
comprehensive information on DES
Health Authorities and Doctors were caught out:
Initially denying DES was ever used on Australia
Then saying everyone affected had been notified and tested
We were caught in the middle
Do you believe the media?
They seemed to know the facts
or
Do you believe the doctors?
Doctors were repeating the authorities line that DES wasn’t used in Australia,
saying it was all a media beat up

15
Union of Australian Women (UAW) to the Rescue
Again, a convergence of factors
Bon Hull, a women’s health activist, was
writing a book In Your Own Hands, published in 1980
Wendy Lowenstein read an early proof of Bon’s book
and thought she might be directly involved (i.e. a DES mother)
When the UAW asked around as to which women’s groups
were taking this issue up, the answer was none.
So the UAW assigned Yvonne Smith to oversee
the DES project....
2004 Reunion DES Action and UAW - 25th Anniversary of DES Action
....and the UAW organised and publicised a public meeting

17
1979 DES Action established
When DES Action formed in 1979 we were immediately faced with the “myth”
from the health authorities that DES wasn’t used extensively in Australia.
The media was told everyone affected had been notified and were being
screened (that was certainly news to us!)
DES Action has always been very much about sharing stories and
information; and, most importantly, supporting each other
Our immediate focus was on finding knowledgeable, sympathetic doctors;
where to get the correct screening; hints of how to get medical records…
Also, at the same time, we were experiencing the ever-widening devastating
effects of DES exposure: having to have repeated cervical/pelvic screenings,
biopsies, three-monthly call-backs … infertility tests, repeated miscarriages,
pregnancy loss, very prem babies.. Endometriosis… ovarian cysts…
haemorrhaging…premature menopause…an increased incidence of rare and
diverse autoimmune conditions…

18
Our newsletter DESPATCH records our activities,
struggles, frustrations over the years
The first issue of DESPATCH outlines our activities
over that first hectic year
In 1983 we appeared on 60 Minutes
A Plague on our Children
In 1985 a comprehensive article,
DES: The wonder drug you should wonder about,
was published in the journal of
The Health Issues Centre

19
A problem immediately apparent
when the group first formed was
access to medical records.
Records suddenly disappeared,
vanished
A number of women reported
being able to obtain verification of
DES exposure through pharmacy
records

21
DISCOVERING THE TALL GIRLS by Marian Vickers
To treat health young prepubescent girls with a known carcinogen to stunt their adult
height sounds like a bizarre science fiction experiment, but it is unfortunately true.
In the early 1980s DES Action members were devouring information about the history
and use of DES. One aspect of interest was its use in veterinary practice.
We first heard of DES being used to inhibit the adult height of tall young girls almost by
accident. In 1980 a sister of DES Action member, Clare Green, was studying veterinary
science at Melbourne University. One of her lecturers, Dr Anne Jabarah, had researched
DES during the 1960s as part of her Masters and PhD studies.
Clare rang Dr Jabarah and spoke to her at length about her research findings.
Dr Jabarah commented that the published articles caused a great deal of interest
internationally but not in Australia. Almost as an afterthought, she mentioned the
Royal Children’s Hospital (RCH) in Melbourne had requested details of her research,
as they were thinking of using DES to inhibit the growth of
young girls. She said she had often wondered whether they
went ahead with the treatment.
Clare, on behalf of DES Action, wrote to the RCH
seeking clarification on the matter.
A letter was received from the medical director of the
RCH stating that DES had never been used for such a
purpose.

22
DISCOVERING THE TALL GIRLS continued
In addition, Clare was asked to go into the Victorian Health Department to meet with a
department spokesperson. The doctor told Clare that she had looked into the matter and
there was absolutely no evidence that DES was used for this purpose. We were thus
reassured, both in writing and in person, that no such trial had taken place.
So it came a quite a shock several years later when I was contacted by a young woman who
had been part of this non-existent trial. She had attended the RCH and had been given DES
to stunt her growth. She was in her early 20s and had been diagnosed with advanced
invasive cervical cancer. As she was a nurse she knew this was very rare, particularly as she
had none of the known risk factors for the disease.
When I asked her how she found out about DES Action she said her treating doctor (a well-
known Ob/Gyn) had suggested she ring. Obviously he had made the connection between
her DES exposure as a young girl and the subsequent cervical cancer.
In subsequent years (to 1997) we received a handful of further inquiries from “tall girls”
requesting information. The health concerns of these women had an all-too-familiar ring:
dysplasia, endometriosis, ovarian cysts, aggressive cancers (cervix and breast), impaired
fertility, and premature menopause (i.e. occurring during their late 20s).
I can’t really describe my feelings when I opened The Age newspaper on 27 June 1997 and
read on page 1: Hormone tests on teenage girls referred to inquiry.
A sense of relief – that the truth would finally be known – tall girls were given DES to stunt
their growth.
Also it brought back the anger and frustration Clare and I experienced in the early 1980s
when our inquiries were fobbed off by the medical establishment and health authorities.

23
27 June 1997 THE AGE Front Page

24
27 June 1997 THE AGE Page 2

25
27 June 1997
THE AGE Page 2
Excerpts

29
TALL GIRLS INC by Janet Cregan-Wood
It came out of blue. A front page story in THE AGE on 27 June 1997.
The HERALD SUN newspaper also ran a similar story. This provided the avenue
for women who remembered their treatment to phone the journalists with their
concerns and stories, having identified themselves as having been children who
were treated. The journalists at THE AGE, provided the telephone number for
Marian Vickers, Convenor of DES Action Australia.
Marian kept the contact numbers of those who rang her and gave them out to
the treated women as they rang. A phone tree developed enabling women to
contact each other. Each had thought they had been the only one who had
received treatment. To share their story with others for the first time was
powerful, emotional. All, it seemed, had experienced health problems, in
particular gynaecological and reproductive issues.
On 9 July 1997 in the Letters Section of THE AGE, Graeme Barnes, Scientific
Director of The Royal Children’s Hospital Research Foundation referred to the
trial the Tall Girls had been unwittingly a part of, as ‘public spirited volunteers’.
When the first five women and three of their mothers met to form DES Tall Girls, they embarked
upon their campaign, rejecting Graeme Barnes’ letter, demanding a long term epidemiological
follow up. We wanted to know that what was done to us was without fault medically and ethically.
From the beginning we took ownership of our cause, not wanting to be viewed as victims, to be ‘the
primary stakeholder’s and to ask “What happened to us, why and what are the long term effects of
our treatment”. A phone number was given in our responding letter to Barnes’s in THE AGE.
Over the next few weeks there was a cascade of phone calls from women who remembered their
treatment.

30
17 July 1997 THE AGE Page 3

31
17 July 1997 THE AGE
21 July 1997 THE AGE Editorial

32
The Tall Girls reported having experienced infertility,
miscarriages, ovarian cysts, endometriosis, cancer, eating
disorders, depression and muscular skeletal disorders.
No two stories had the same cluster of effects but it was
impossible to discount the commonalities of the narrative.
We also discovered that ethinyloestrodial (EE) was used to
treat Tall Girls, as well as DES.
The forming of the Tall Girls group can be viewed on
SBS Insight, which aired on 4 September 1997
https://www.youtube.com/watch?v=mpnqS95qyJk&t=1344s
The Tall Girls’ advocacy led to a world-first epidemiological
study into the long-term effects of oestrogen treatment to
stunt growth, funded by the NHMRC.
This is outlined in the 2001 article
Participation, Empowerment and Effectiveness:
The Tall Girls Inc. Experience
by Ed Wolf

33
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 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 it appears my daughters are "DES granddaughters".
Recently there has been renewed interest in the 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.
- Marian Vickers

34
Herbst A, Ulfelder H, Poskanzer D (1971) Adenocarcinoma of the vagina: Association of maternal
stilbestrol therapy with tumor appearance in young women. NHJM 284 (16): 878-88
http://www.nejm.org/doi/full/10.1056/NEJM197104222841604#t=articleTop
Hoover RN, Hyer M, Pfeiffer RM, et al. (2011) Adverse health outcomes in women exposed in utero to
diethylstibestrol. NEJM. 365:1304-14. http://www.nejm.org/doi/full/10.1056/NEJMoa1013961
Newbold RR, et al (1998) Increased tumors but uncompromised fertility in the female descendants of
mice exposed developmentally to diethylstilbestrol. Carcinogenesis 19: 1655-1663
http://carcin.oxfordjournals.org/content/19/9/1655.long
Newbold RR, et al (2000) Proliferative lesions and reproductive tract tumors in male descendents of
mice exposed developmentally to diethylstilbestrol. Carcinogenesis 21: 1355-1363
http://carcin.oxfordjournals.org/content/21/7/1355.long
Newbold RR (2004) Lessons learned from perinatal exposure to diethylstilbestrol. Toxicol Appl
Pharmacol.199:142–150. http://www.ncbi.nlm.nih.gov/pubmed/15313586
McLachlan JA (2006) Commentary: Prenatal exposure to diethylstilbestrol (DES): a continuing story.
Int. J. Epidemiol. 35 (4): 868-870. http://ije.oxfordjournals.org/content/35/4/868.full
Crain DA, et al (2008) Female reproductive disorders: the roles of endocrine disrupting compounds
and developmental timing. Fertil Steril. 90(4): 911–940
https://www.ncbi.nlm.nih.gov/pubmed/18929049
Vickers M (2004) So why did I become an activist with DES Action?
http://www.womensweb.com.au/sources/Later%20Stories/Marian%20Vickers.htm
DES Resource List

35
TALL GIRLS
Wolf E (2001) Participation, Empowerment and Effectiveness: The Tall Girls Inc. Experience
Health Issues 69: 32-35
Venn A, el al. (2004) Oestrogen treatment to reduce the adult height of young girls: long term effects
on fertility. Lancet 364 (9444):1513-18. http://www.ncbi.nlm.nih.gov/pubmed/15500896
Rayner J, et al (2010) The medicalisation of ‘tall’ girls: A discourse analysis of medical literature on
the use of synthetic oestrogens to reduce female height. Social Science & Medicine 71 1076-1083.
Bruinsma FJ, et al (2011) Looking back in time: conducting a cohort study of the long-term effects of
treatment of adolescent tall girls with synthetic hormones. BMC Public Health 11 (Suppl 5): S7
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3247030/
Hendriks AEJ, et al. (2011) Fertility and Ovarian Function in High-Dose Estrogen-Treated Tall Women.
J Clin Endocrin Metab 96(4):1098-1105. http://www.ncbi.nlm.nih.gov/pubmed/21289262
Benvi E, et al. (2014) Risks of malignant and non-malignant tumours in tall women treated with high-
dose oestrogen during adolescence. Horm Res Paediatr 82(2):89-96
Vickers M (2014) When Being a Tall Girl was a Medical Condition: DES and the Tall Girls Hormones
Matter https://www.hormonesmatter.com/des-used-stunt-growth-tall-girls/

36
OTHER
Perera F, Herbstman J (2011) Prenatal environmental exposures, epigenetics, and disease. Reprod
Toxicol 31(3): 363-373 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3171169/
Csoka AB, Szyf M (2009) Epigenetic side-effects of common pharmaceuticals: A potential new field in
medicine and pharmacology. Medical Hypotheses 73:770–780
http://www.ncbi.nlm.nih.gov/pubmed/19501473
Disease Mongering http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.0030191
BOOKS
DES Voices: From Anger to Action (2008) by Pat Cody
Normal At Any Cost: Tall Girls, Short Boys, and the Medical Industry’s Quest to Manipulate Height
(2009) by Susan Cohen and Christine Cosgrove
The Greatest Experiment Ever Performed on Women: Exploding the Estrogen Myth (2003)
by Barbara Seaman
https://www.youtube.com/watch?v=ySCHlN1Ci5o
Our Stolen Future (1996) by Theo Colborn, Dianne Dumanoski & John Peterson Myers
http://www.ourstolenfuture.org/
Selling Sickness: How drug companies are turning us all into patients (2005) by Ray Moynihan & Alan
Cassels http://ahrp.org/selling-sickness-pharma-industry-turning-us-all-into-patients/

37
VIDEOS
A Plague on our Children
60 Minutues 1983
https://www.youtube.com/watch?v=PNFnOjuoGLw&feature=youtu.be
Beating cancer one lap at a time
https://www.youtube.com/watch?v=fcvgn4lJ8R0
Tall Girls exposed to DES and EE
SBS Insight 04.09.97
https://www.youtube.com/watch?v=mpnqS95qyJk
Endocrine Disruptors: Sexy Stuff
https://www.youtube.com/watch?v=d2x9I7UTqBM

DES Action Australia

More Related Content

Similar to DES Action Australia

Recently uploaded

DES Action Australia