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Notice given 3 December 2012

*2648  Senator Boyce: To ask the Minister representing the Minister for Health—With reference to the complications arising from the carcinogenic drug Diethylstilboestrol (DES), which was administered to pregnant women and predominantly used in Australia from the late 1940s until 1971, and to the use of DES as a lactation suppressant in unmarried women:

(1) When did the department become aware of the link between DES and the development of reproductive and breast cancer in women exposed to DES.

(2) How long after the department learnt of the risks did it issue a warning about the danger of DES usage during pregnancy.

(3) Does the department agree with estimates that 740 000 Australians, including DES mothers, daughters and sons, were exposed to DES, and are their medical records still available and accessible.

(4) Given that there have been almost 700 cases of clear cell adenocarcinoma (CCA) worldwide, with the vast majority of these tumours occurring in the late teens and early twenties, can details be provided of how many cases of CCA have been diagnosed in Australia.

(5) With reference to the statement by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (available at http://www.ranzcog.edu.au/component/docman/doc_view/905-c-gen-08-diethylstilboestrol-des-exposure-in-utero.html?Itemid=341 ), is the department aware of the possibility of a second peak in the incidence of CCA when this group of women reach the age at which CCA ‘naturally occurs’, from the age of 60 years onwards.

(6) Given that women who took DES during pregnancy appear to have an increased risk of developing breast cancer, and daughters of the women who took DES also appear to have an increased risk, is the department aware of the number of women with breast cancer who were previously administered DES or who were exposed to DES in the womb; if so, can details be provided.

(7) Does the department keep other records of health issues and complications caused by DES; if so, can details be provided.

(8) Is the department aware of any ongoing research to investigate the effects of DES exposure on subsequent generations.

(9) Is the department aware that the Cancer Council New South Wales website states that many people remain unaware of their exposure to DES and the potential adverse health effects.

(10) What action has the department taken to educate the public about DES, and what future information programs are planned.

(11) Is the department aware that very few doctors appear to have informed their DES-exposed patients about the adverse effects of DES, and how is the department planning to educate doctors about the importance of informing DES-exposed patients.

(12) Given that DES information messages are currently only available on departmental and a number of medical websites: (a) how is the department measuring the effectiveness of these messages; and (b) is there a Medicare item number especially for people exposed to DES.

(13) Is the department aware that the absence of DES information in preventive health care programs means that many DES-exposed people may never learn about the harm caused by DES and the vital health care they need for their reproductive health and to help detect cancers early.

(14) Does the department, including the Chief Medical Officer, hold the view that raising DES awareness in public health programs could create unnecessary anxieties for women who may not know whether they have been exposed to DES, when there is the potential for negative health effects on the DES exposed population as a result of this view.

(15) Is the department aware that in 2001 the government of the United States of America (US) conducted a multi-million dollar campaign to educate the US public and physicians about DES.

(16) How much has the Australian Government spent towards educating the Australian public and health professionals about DES.

(17) Does the department acknowledge the importance of ensuring that persons affected by DES have full information about the impact of exposure and what they can do about it.

(18) Given that across the Australian community there appears to be a lack of awareness of DES exposure, what action does the department have planned to remedy this.

(19) Given that Hansard records dating back to 20 October 1983 show a call for funding for a nationwide publicity campaign to alert DES daughters, sons and mothers to the problems they may be facing and the need for specialised tests and that, in the US, legislative measures have been necessary to ensure that the needs of the DES exposed population are addressed: (a) does the department plan a nationwide publicity campaign about DES; and (b) what research is the department undertaking into DES exposure in Australia.

(20) Which section of the department is responsible for the welfare of DES-exposed Australians.

(21) Is the department aware that for most DES-exposed children the only available source of confirming their DES exposure is their mothers.

(22) Does the department recognise that DES mothers are ageing with a number now deceased, thus making the confirmation of DES exposure difficult, and in turn, is the importance of being made aware of DES exposure as soon as possible also recognised.

(23) Is the department aware that DES was frequently forcibly administered to unmarried mothers who were subject to forced adoption to suppress lactation.

(24) Is the department aware of: (a) claims that DES was administered in many cases without consent and often at above standard dosage to achieve the effect of suppressing lactation; and (b) the forced adoption mothers’ group Origins witness statement in the 2000 New South Wales inquiry Releasing the Past, which suggests that DES was administered often at three times the standard dosage.

(25) Is the department aware of any research about the possible carcinogenic effects of DES usage as a lactation suppressant; if so, what is that research.

(26) Is the department aware of the Origins survey submitted to the inquiry Releasing the Past that showed higher than expected rates of breast and reproductive cancers.

(27) Given the apparent absence of research about lactation suppressant usage of DES and the cancer concerns raised by the Origins group survey, what assistance can the Government provide in ascertaining whether or not DES has caused an increased cancer risk in unmarried women who were exposed to the drug as part of the forced adoption practices between the 1950s and 1980s.