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Healthy Skepticism International News

November 2005

DES exposed Australians seeking political action

Abstract:
Carol Devine, Coordinator, DES Action Australia-NSW,looks at the poor support offered to individuals whose mothers took DES during pregnancy. Anyone with known or suspected DES exposure or just wanting further information may contact Carol Devine, Phone +612 98754820.
In the wake of the Thalidomide tragedy, the Australian Drug Evaluation Committee (ADEC) of the Therapeutic Goods Administration (TGA) was established in 1963 to proffer drug safety advice and to formulate measures for evaluating possible adverse drug effects. It was not long before, in 1971, the Australian government and medical professionals were challenged with a further medical tragedy – the first known transplacental carcinogen, diethylstilboestrol (DES). This once considered safe and effective anti-miscarriage drug became linked to cancer and reproductive injuries in the daughters and sons exposed in utero, and in the mothers prescribed the drug in pregnancy. Research is continuing to find out whether the offspring of DES exposed daughters and sons (DES grandchildren) are affected.
-Daughters exposed in utero are at higher risk for a rare cervical/vaginal cancer, reproductive tract structural differences, miscarriage, ectopic pregnancy and infertility.
-Sons exposed in utero are at risk of genitourinary problems, eg, non-cancerous epididymal cysts.
-Mothers given DES in pregnancy are at a modestly increased risk of breast cancer.
Millions of people worldwide were affected, including Australians. Today there are still Australians unaware of having been DES exposed and unaware of the important lifelong preventive health care for DES exposure.

How many affected?
Last year the Adverse Drug Reactions Bulletin reported 15 DES related cancer cases (clear cell adenocarcinoma of the vagina/cervix). This cancer’s incidence of about 1:1,000 DES daughters (females exposed in utero) means that there are approximately 60,000 DES exposed women and offspring. The numbers affected could be greater, since the Australian Institute of Health and Welfare holds data of about 86 cases of the cancer type associated with DES that have yet to be investigated. Therefore the figure could be as high as 344,000 affected.

Question of responsibility – no care taken
A 1980 Department of Health letter, in outlining ADEC’s actions, states that the question as to who should take responsibility for the predicament of the children suffering from the effects of stilboestrol is a vexed one (Correspondence: Department of Health, Canberra ACT 11/3/1980). The same letter hastens to add that DES was introduced onto the Australian market at a time when the Government had no controls over the safety and efficacy of this imported substance and consequently could not be held responsible.

However, the DES exposure problem has been left in the hands of the ADEC and the Australian Drug Reactions Advisory Committee (ADRAC)
-without a specific DES cancer registry being established to help estimate numbers affected
- without consistent communication with US experts in DES research
- without effective advice to the Minister that would result in an ongoing educational campaign about DES
- with repeated requests, all in vain, to the Royal Australian and New Zealand College of Obstetricians and Gynaecologists to report known DES cancer cases.

In 2003, upon review of the DES Update website of the US Centers for Disease Control, the differing cervical and breast screening advice for DES exposed women was termed by the ADRAC as an “impediment” to an intended Adverse Drug Reactions Bulletin item about DES. The ADRAC made recommendation that guidelines for DES exposure be finalised in consultation with the Population Health Division and that an Adverse Drug Reactions Bulletin item be published to publicise the guidelines. Despite this recommendation and without consultation with the Division, in June 2004 the TGA issued a Bulletin item about DES, followed by a media release. The TGA nationally publicised advice that DES daughters should have routine Pap smears, a procedure that is not adequate in detecting DES related cancer. This advice was contrary to both information on Australian government health websites and the best medical international protocol of lifelong annual “DES examinations” that is required by DES daughters. Incongruously, in November 2003 the TGA lodged a submission consistent with the annual DES examination protocol to the National Health and Medical Research Council’s review of Guidelines for the Management of Asymptomatic Women with Screen Detected Abnormalities.

Meanwhile, the Australian public has been delivered information denying them life saving preventive DES health care, information that went unopposed by other medical bodies. There have been many successful DES injury legal claims against pharmaceutical companies and now DES injury legal claims could be instigated against the Government.

In evaluating the care taken for DES exposed people, it should be noted that the TGA has been entirely funded by fees from drug companies since the mid 1990s. The lack of care and efficiency in DES exposure matters by government officials and the relevant medical bodies when reasonable care and efficiency is expected is as vexing as that government official of 1980 posing the question of who should take responsibility in an issue concerning legatees of a man made medical tragedy. The matter of pecuniary interests by government and medical bodies with the pharmaceutical industry can not be ignored.

If there’s a will there’s a way
In a recent Liberal Party Address Speech, the Minister for Health and Ageing questioned how realistic it is to maintain neat distinctions in the government system tiers, when voters don’t care who solves their problems – they just want them solved. The Minister then asks, “And once the Commonwealth Government is engaged in any particular responsibility, how can it avoid the demand to provide leadership?” (Abbott. Speaking Notes for Young Liberal Address 22/1/05: Conservatives need not be sentimental about the States). In seeking solutions to the lack of care and efficiency, the group DES Action Australia-NSW has already exhausted the tiers of government and medical bodies and has asked for the Minister’s leadership in DES matters, but to no avail. It would seem the unfair task in reaching solutions for DES exposed Australians is in first addressing government avoidance of responsibility before addressing any avoidance of leadership demands. Once “engaged”, the Minister can contemplate breaking through those neat distinctions in system tiers. DES exposed Australians just want their problems solved.

 

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Far too large a section of the treatment of disease is to-day controlled by the big manufacturing pharmacists, who have enslaved us in a plausible pseudo-science...
The blind faith which some men have in medicines illustrates too often the greatest of all human capacities - the capacity for self deception...
Some one will say, Is this all your science has to tell us? Is this the outcome of decades of good clinical work, of patient study of the disease, of anxious trial in such good faith of so many drugs? Give us back the childlike trust of the fathers in antimony and in the lancet rather than this cold nihilism. Not at all! Let us accept the truth, however unpleasant it may be, and with the death rate staring us in the face, let us not be deceived with vain fancies...
we need a stern, iconoclastic spirit which leads, not to nihilism, but to an active skepticism - not the passive skepticism, born of despair, but the active skepticism born of a knowledge that recognizes its limitations and knows full well that only in this attitude of mind can true progress be made.
- William Osler 1909