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WHAT I THOUGHT I KNEW

Alice Eve Cohen ISBN 978-0-670-02095-9

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.

WHEN DES IS TAKEN OFF THE MENU

“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for those affected by DES exposure, but for Australians affected by any other harmful drug on the market which might be withdrawn from the Australian Register of Therapeutic Goods.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 Australia-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 about DES on Department websites, this is simply not enough when many people remain unaware of the health dangers of DES.

DES Action Australia-NSW will continue lobbying on this matter and urges anyone affected to subscribe to the organisation to receive firsthand any vital health information about DES.