DES daughters diagnosed with clear cell adenocarcinoma of the cervix/vagina (CCA) are urged to self-report their cases to the Adverse Medicines Events Line Ph 1300 134237. Also, to obtain forms for self-reporting to the International DES Cancer Registry, call DES Action Australia-NSW Ph 02 98754820. It doesn't matter if you think a health care provider may have already reported your case, because all reports are cross-checked.
There are many important reasons for self-reporting:
- Case reports are crucial to knowing the magnitude of the DES exposure problem in our country.
- DES Action Australia-NSW knows of instances where cases have gone unreported by health care providers in Australia.
- The Therapeutic Goods Administration (TGA), Australia's drug watchdog, deemed DES cancer reports unnecessary from 1983 to 2001.
- In TGA documents obtained via FOI by DES Action Australia-NSW there was mention of at least 12 cases of CCA, but these were not reported/investigated for entry into TGA data. Of these cases, one woman had died and at least 5 were children.