- A 1997 commissioned report by NSW Cancer Council Cancer Control Information Centre to review world data stated: There do not appear to be any reports in scientific literature of cases of CCAC associated with DES exposure in utero in Australia. This report, even in the early stages of the evolution of this problem, would suggest that the Australian experience is closer to 1 case than 24 cases.
In conclusion this report stated that investigations to increase the accuracy of data would not likely alter the advice that there is little justification for specific action aimed at reducing the cancer risk associated with past use of DES in pregnancy.
- In 1998 the Cancer Council NSW made the decision to cease distribution of brochures and posters about DES to centres targeting women throughout NSW.
This decision followed a statement by the then Federal Health Minister, Dr Michael Wooldridge, that the health benefits of setting up a National Register for those affected by DES would be doubtful and may unduly alarm women who may not have taken DES. The Council then considered the brochures to be "too scary" and stated difficulty in dealing with women who couldn't remember if DES was taken. Since 1995 DES Action Australia-NSW has assisted hundreds of enquirers, including those unable to remember if DES was taken. As part of the comprehensive 2001 DES Education Campaign in US, an interactive self-assessment guide was designed to assist people in assessing whether or not they have been DES exposed. [www.cdc.gov/des/consumers/guide/index.html]
- In June 2004 the Therapeutic Goods Administration issued a bulletin item and media release stating that the cancer risk had passed for DES daughters and that they only needed to follow the current national cervical and breast screening recommendations.
- In 2003 the draft version of Screening to Prevent Cervical Cancer: Guidelines for the Management of Asymptomatic Women with Screen Detected Abnormalities stated that the decision to screen DES daughters will be determined by the level of anxiety the woman usually tolerates about herself, and no firm recommendation can be made.
- Guidelines should be based on medical best practice, not on the patient’s level of anxiety.
- Medical doctors are not expert in determining the level of anxiety in a patient, nor do they have a way to screen/measure anxiety.
- The patient may be anxious for other reasons.
- The statement unethically suggests that medical doctors make a decision for which they are not qualified and one which could deny the patient screening that could be life-saving.
For our DES Action group, it is important to always keep our ear to the ground, not only for new research developments about DES, but also for any new government activities concerning DES exposure. All of the above matters regarding management have been or are currently being addressed by DES Action Australia-NSW. The continued financial support by members to help us continue our work in ensuring our just and rightful health care is always appreciated.