DES Daughters, Embodied Knowledge, and the Transformation of Women's Health Politics in the Late Twentieth Century
ISBN: 9781592139194
In DES Daughters, Susan Bell recounts the experiences of this generation of “victims.” In moving, heartfelt narratives, she presents the voices of those women who developed cancer, those who were cancer-free but have concerns about becoming pregnant, and those who suffered other medical and/or reproductive difficulties.
Bell examines the hierarchy of knowledge and power of scientists, doctors, and daughters, tracing the emergence of a feminist health movement. The “embodied knowledge” of these DES daughters prompted them to become advocates and form a social movement that challenged reproductive medical knowledge specifically, but also the politics of women’s health in general. Bell’s important book chronicles the history and future of these grassroots activists born out of illness, suffering, and uncertainty.
Enquirers very often say to us how difficult it is to broach the DES subject with family members. Even though we all know deep down how important it is to be informed about DES exposure and its associated vital health care, raising this topic with family can still be a confronting and emotionally charged task. Of great help to us, DES Action USA recently published on this topic over two issues in their newsletterVoice. Here are the reprinted articles fromVoice#118 and #119:
Tell Your Children About DES
By Fran Howell
Talking about DES may be one of the most important things you do with your children, and it will be time well spent.
In the early days of DES Action we mounted a successful campaign urging individuals born between 1938 and 1971 (and beyond) to Ask Your Mother about DES. Many of you probably still remember it. Now as our organization moves into its fourth decade it seems appropriate to evolve this effort into a new and equally important phase: Tell Your Children.
Those who were exposed to DES, either before birth or as grandchildren, have a right and certainly a need to know it is part of their health histories. They can have recommended health screenings and can make informed medical choices, especially in relation to the use of extra hormones.
Telling children about their DES exposure is not easy, acknowledges respected women’s health care provider, Candy Tedeschi. “Over the years mothers have told me they didn’t need to tell their DES Daughters or Sons, as long as their children were healthy and had no medical problems from their exposure. If any problems developed, THEN they would tell them.”
But Tedeschi points out the flaw in that logic, “What happens if the time is never right or something happens to you, or your child doesn’t tell you about a problem that developed in adulthood?”
So the time to have a conversation about DES could be now for DES Mothers who haven’t yet told their children. It also might be the right time for DES Daughters and Sons, if their children are now teenagers. DES Action member and Clinical Psychologist Linda Bortell, Psy.D., suggests having the discussion at an age appropriate time, perhaps just prior to the first gynecological exam or when potential health issues might come up for this age group.
“Keep it simple and straight forward,” says Bortell. “DES was something grandma was given. She did a good job and did what her doctor told her to do. There isn’t a lot of research yet into how it might affect you, but you should know about it. When you see a doctor, say you are a DES Grandchild.”
According to Bortell, “Talk about DES with a sense of empowerment – this is who you are and it doesn’t have to define your life, but it is important information you need to know.” She adds, “There is no shame in it, and no one did anything wrong, except the drug companies.”
Friction between parents and children, especially between mothers and daughters, is legendary. Planning what you say is a good idea. Then understand that your child may become angry at the news. Bortell says that’s natural.
Explain that you didn’t ask to be DES exposed, nor did grandma, but in a matter of fact way, discuss how you feel. Then reinforce the message that you may not be able to protect the child from everything, but you will be there to help in any way possible.
“Admit you don’t have all the answers, but in a very matter of fact conversation tell your children they were exposed to DES and if they want to read more about it you can help them with books and web sites. Let them know you aren’t going to drop this news on them and walk away.” Consider a DES Action membership for your child when he/she leaves home.
For adult DES Granddaughters, Bortell says you can follow up by asking if they’ve been to the gynecologist recently. “Tell them you are asking because you care, not because you want to nag.”
DES exposure hits us right at the core of our being, so this is a conversation to have in private with your child. Perhaps while driving, having lunch out together, or at bedtime. “Choosing a time and place where you both feel comfortable is crucial,” says Bortell.
Recently a DES Daughter told us that her mother asked if she had access to good, current DES information. She was happy to tell her mom – without a moment’s hesitation – she is a DES Action member, so she is up to date on DES. That family certainly has it right.
Information Is Power – Tell Your Children About DES
By Fran Howell
You can’t change your genes, or the toxic exposures you or your parents faced, but knowing about them can spur you into taking the actions needed to protect your health. It may mean vigilance in having annual mammograms, or avoiding extra hormones, such as HRT. Knowing all the facts can lead to better health care decision-making.
In the case of DES exposure, our children depend on us to tell them what they should know. It is not an easy topic, but DES Mothers should inform their children and DES Daughters and Sons should do the same for theirs.
If grandma had diabetes or dad has heart problems, it is common for the next generation to be made aware of it. The same should hold true for DES exposure, but in many families it does not. Since we ran an article in the last VOICE (Fall 2008 Issue 118), we heard from several members about their experiences. This is from DES Daughter Elizabeth:
“I have two biological daughters, Lea, who is 23, and Rose, who is 18. Rose has cerebral palsy, developmental delays, a seizure disorder and vision impairment. Because of all we have been through with Rose, who was born prematurely as a result, I believe, of my DES exposure, Lea has always known about DES. Two years ago Lea was in extreme pain with what was probably a burst ovarian cyst. When I told the emergency room doctor about DES, I was glad it was not the first time Lea heard about it.”
Mary, another DES Daughter, shared the reactions of her two 20-something children. She described how both her daughter and son wanted to ignore talk of DES.
“Justin did not like my mentioning to the doctor that I thought his testicular cancer might be the result of his grandmother being prescribed DES (and of course the doctor’s reaction didn’t help). Simone is good about getting yearly check-ups so that stuck, but she absolutely refuses to talk about DES, saying I am a “worrier.” Despite her attitude, I will always share new research results she should know of, while hoping she is right about my worrying needlessly.”
DES Daughter Elane emailed her sons living across the country.
“I had actually never talked to them about DES at all before. Both responded with terse, but positive comments (as boys are likely to do when talking about rather personal information, such as doing self-examinations). It was not hard at all, and I was happy that I did it, and that they seemed to pay attention to what I said.”
We have been asked whether it is prudent to tell DES Grandchildren about their family history of exposure when no specific health screenings have been identified for them. Of course, that could change, and unless they know about DES they won’t be on alert for information they might need.
Currently, animal studies, which are good predictors of the human experience, tell us that we should watch for reproductive tract lesions in DES Grandsons, and DES Granddaughters may be at increased risk for tumors. The first study involving humans shows DES Granddaughters taking longer to achieve regular menstrual periods than their unexposed counterparts.
We don’t know, for example, what impact the hormones in birth control pills might have on DES Granddaughters. We hope for an answer in the near future, but science has yet to catch up with our concerns. That has been the situation all along with DES exposure. Similarly, doctors brush aside discussion of DES Grandchildren issues. But to quote DES Action Co-founder Pat Cody, “that does not mean we need to be governed by their ignorance, arrogance and indifference.” Perhaps long-time DES Action member Molly sums it up best:
“I have no children to tell. But I am deeply grateful to my mother for taking the issue seriously and telling us in no uncertain terms that DES was something we’d have to be conscious of our entire lives. I feel very lucky she told us, and I’m glad that she did.”
DES Action NSW has available the booklet “Talking about DES” (US National Cancer Institute) and the listed resources of:
As part of routine regular checks on Australian health data, DES Action NSW has just learnt that the number of DES associated clear cell adenocarcinoma of the vagina/cervix cases held by the Adverse Drug Reactions Advisory Committee (ADRAC) has crept to 18. This means there are possibly at minimum 72,000 DES daughters, mothers and sons in Australia.
This minimum figure is unreliable for the following reasons:
Reporting to the Adverse Drug Reactions Unit is not mandatory and failure to report is acknowledged. In spite of the reporting scheme being voluntary, it is hard for people to believe there is failure by medical professionals to report a side-effect as serious as cancer. Government minutes acquired by DES Action NSW via Freedom of Information show specific instances of the failure to report DES associated cancer cases by medical professionals. Several women have informed DES Action NSW that when recently self-reporting their DES related cancer diagnosis of years ago, they were informed by the Adverse Drug Reactions Unit that their cases had not been reported by their health care providers at time of diagnosis.
From 1983-2001 the number of DES associated cancer case reports strangely remained static in Australia, whilst the figures elsewhere in the world were on a slow rise. The Drug Safety and Evaluation Branch’s explanation for this to DES Action NSW (letter 29/3/01) was that 1983 was “the end of the period” for identifying cases. It was explained that specialist centres within Australia were maintaining registers and that these centres chose not to report to the ADRAC. Adverse Drug Reaction Unit correspondence (31/5/01) explains the ADRAC received a phone call by an un-named doctor stating specialist clinics had been set up and that reporting to the ADRAC was not seen as necessary. In fact, there were no specialist centres within Australia maintaining registers and so the number of women diagnosed from 1983-2001 who would otherwise have been reported, remains a mystery.
On separate matter, the ADRAC was unable to afford an explanation to DES Action Australia-NSW for their 10 year delay in entering the data of a 4 year old girl diagnosed in 1972.
The maximum estimate can only be sourced from data held by the Australian Institute of Health and Welfare. The most likely appropriate data set is the women diagnosed clear cell adenocarcinoma of the vagina/cervix below age 50. (Before this cancer was linked to DES, this
cancer type was rare and typically a disease in older women.) The number currently stands at 40, which means there are possibly 160,000 DES daughters, mothers and sons. As a maximum figure this is also unreliable, since there has been no specific investigation regarding DES exposure in these women.
Having an official figure that is as accurate as possible is essential to gaining a serious approach to the DES exposure health issue in Australia. In May this year, DES Action NSW submitted a research proposal to the Cancer Council NSW that a study be undertaken to investigate available data to more accurately identify DES associated cancer cases and that this study discuss the feasibility and advantages of establishing a specific register for DES associated cancer.
THE BLUE CARD
Forms are available for self-reporting adverse drug reactions, including DES related clear cell adenocarcinoma of the vagina/cervix and other known effects of DES exposure, eg, recurrent miscarriages, T-shape uterus, undescended testes. These are available at www.tga.gov.au/adr/bluecard.htm or by phoning 1800044114 (free call)/02 62328180.
In particular, DES Action NSW encourages the reporting of DES related clear cell adenocarcinoma of the vagina/cervix, as this helps us ascertain the magnitude of the DES exposure problem in Australia. These cancer reports can be made to the TGA (online to the Adverse Event Management System (AEMS). Also report should be made to the International DES Registry which is called the Clear Cell Adenocarcinoma Registry (Chicago USA). Details are on website of DES Action USA www.desaction.org
Solo theater artist Alice Eve Cohen knew that childbearing was simply impossible—her own mother had taken DES, and Alice had a deformed uterus, among other disqualifiers. So when what doctors misdiagnosed as a tumor turned out to be a 6-month fetus, the 44-year-old Cohen had to wrestle with clueless specialists, cavalier insurance companies, and her own no-see-um maternal instincts. Her darkly hilarious memoir, What I Thought I Knew (Viking), is an unexpected bundle of joy.
“The TGA has advised the Department that DES is not a therapeutic good currently on the Australian Register of Therapeutic Goods and is not currently available via any avenue of supply in Australia. As such, it is not the role of the TGA to provide information about DES or to promote public health messages to DES exposed women”. [Correspondence 16/2/09 by Senator the Hon Jan McLucas, Parliamentary Secretary to the Minister for Health and Ageing]
The situation described above is dire, not only for those affected by DES exposure, but for Australians affected by any other harmful drug on the market which might be withdrawn from the Australian Register of Therapeutic Goods. The absurdity is that this policy allows a drug, dangerous enough to have important warnings issued, to then be deemed not dangerous enough to continue warning those affected after the drug is made unavailable.
The risk in this policy is that following the drug’s cancellation from the Register, the Department of Health and Ageing may decide not to issue further vital health information to the unfortunate victims of the drug. This is precisely the case for DES exposed Australians where the Department holds the opinion that promoting information about DES creates community anxiety. DES was on the Register for usage in prostate cancer until 1992 when it was cancelled.
Added note 27/7/09: This month, DES Action NSW wrote to the Australian Chief Medical Officer requesting his personal assistance in rectifying this matter, so that accountability in promoting public health messages about DES is maintained similarly as before. In reply (23 July 09) we are assured the Department and the TGA are working together to ensure that updated information will continue to be available to DES women. This is unconvincing whilst ever the Department and TGA continue in policy/opinion not to promote health messages about DES directly to the public. Also, without one section of the Department wholly accountable for this task, there is real risk of the responsibility for this extremely serious health issue being transferred across sections of the Department.
To the complete detriment of DES exposed Australians, the Department continues to ignore the fact that many people remain unaware of their exposure and the potential adverse health effects of DES. By only placing information (often hard to find) about DES on Department websites, this is simply not good enough when many people remain unaware of the health dangers of DES. DES Action NSW will continue lobbying on this matter and urges anyone affected to subscribe to the organisation to receive first hand any vital health information about DES.
Coordinator of DES Action NSW, an organisation related to DES Action USA. Our group is a non-profit non-government volunteer support and advocacy group for Australians who know or suspect DES exposure. Contact: c_devine@bigpond.net.au
DES Daughters, Embodied Knowledge, and the Transformation of Women's Health Politics in the Late Twentieth Century
