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DES Action Australia

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The DES Story in Australia
(Di-Ethyl-Stilboestrol)

Published in: Health & Medicine
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DES Action Australia

  1. 1. 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. 2. 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. 3. 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. 4. 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
  5. 5. 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
  6. 6. THE AGE 4 September 1979 Front Page
  7. 7. 4 September 1979 THE AGE Page 16
  8. 8. 8 4 September 1979 THE AGE Page 16 Excerpts
  9. 9. 9 5 September 1979 THE AGE Front Page
  10. 10. 10 5 September 1979 THE AGE Page 4
  11. 11. 11 5 September 1979 THE AGE Page 4
  12. 12. 12 5 September 1979 THE AGE Page 4
  13. 13. 13 6 September 1979 THE HERALD
  14. 14. 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. 15. 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
  16. 16. 16 19 April 1980 THE AGE
  17. 17. 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. 18. 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. 19. 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
  20. 20. 20
  21. 21. 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. 22. 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. 23. 23 27 June 1997 THE AGE Front Page
  24. 24. 24 27 June 1997 THE AGE Page 2
  25. 25. 25 27 June 1997 THE AGE Page 2 Excerpts
  26. 26. 26 29 June 1997 HERALD SUN
  27. 27. 27 9 July 1997 THE AGE
  28. 28. 28 15 July 1997 THE AGE
  29. 29. 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. 30. 30 17 July 1997 THE AGE Page 3
  31. 31. 31 17 July 1997 THE AGE 21 July 1997 THE AGE Editorial
  32. 32. 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. 33. 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. 34. 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. 35. 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. https://www.ncbi.nlm.nih.gov/pubmed/20678835 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 https://www.ncbi.nlm.nih.gov/pubmed/24924304 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. 36. 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. 37. 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

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