Safety of being 'in the know'

To keep up to date with vital information about DES exposure and at the same time support the great work of DES Action Australia-NSW, you may wish to subscribe annually to receive The DESfactor newsletter – only $20 (3 issues per year).


What’s in it for you?

By subscribing, it is a kind of insurance policy so that you can receive news developments in DES exposure health care that directly affect you and your family and - it’s hot off the press! You will also get news of what is brewing in the continuing research in DES exposure. You will be able to view firsthand the lobbying directions of the DES Action movement internationally and here in Australia and have the opportunity to be involved.

What more could you want?

Subscribe by sending your details (name, address, phone and email) along with cheque/money order to ‘DES Support NSW’ and send to: DES Action Australia-NSW, 14 Edmundson Cl, Thornleigh NSW 2120.
You can also conveniently make a deposit for subscription in DES Action Australia-NSW account: Westpac BSB: 032-087 Account: 11-9974 Account name: DES Support NSW. Notify us by email with your details (and deposit details) if you have done this.
All donations are gratefully accepted!

Please note: DES Action Australia-NSW operates separately and independently of the Melbourne-based group, DES Action Australia.

Why aren't authorities telling about DES?

“....a general publicity campaign for DES-exposed people to identify themselves would create community anxiety without tangible benefit.” [Correspondence 12/10/99 by former Minister for Health and Aged Care, Dr Michael Wooldridge]

“The advice provided by the Department in 2005 that it is not appropriate for information on DES to be included in breast and cervical screening program correspondence to participants, as it could create unnecessary anxieties for women who may not know if they have been exposed to DES, is still current.” [Correspondence 16/2/09 by Senator the Hon Jan McLucas – Parliamentary Secretary to the Minister for Health and Ageing]

COMMENT
DES exposure is a serious public health issue affecting a considerable number of Australian people (approx 68,000-156,000 DES mothers, daughters and sons). The above stance by government beggars belief, especially where if similar statements were said of other issues, for example, asbestosis, lead-based paint, tobacco or even tainted food products, there would be public outcry. In Australian public health information, DES takes a very poor background position where one has to magically know about DES in the first instance to search the DES topic. The government frequently vaguely states that DES exposed women should be encouraged to see their doctor for specific management and surveillance, but there is no effective encouragement forthcoming. The DES issue for women who may not know if they have been exposed to DES has been effectively managed in USA with the Interactive DES Self-Assessment Guide (http://www.cdc.gov/des/consumers/guide/index.html ).

It is stated in the NSW Cancer Council Diethylstilboestrol (DES) and Cancer Position Statement (www.cancercouncil.com.au/editorial.asp?pageid=248) that many people remain unaware of their exposure and the potential adverse health effects of DES. There is inherent failure by government to recognise this vital point. As recently as last weekend, in an extremely short space of time at the Breast Cancer Network’s forum in Sydney, through the representation of DES Action Australia-NSW, 3 DES mothers learnt for the first time about the effects of DES and the possible association of their breast cancer diagnosis to DES. They had no prior knowledge of the special need of DES mothers to have annual mammography. In the organisation’s experience, instances as this are too frequent and beg the question “How many more people are unaware?” The DES tragedy becomes a double whammy where DES exposed people and their families have been deprived of accessible information for their vital reproductive and cancer preventive health care – a doubling of the tragedy that is largely preventable with responsible government action. Indeed, anxiety can be created by not telling.

The unfairness and injustice of having been DES exposed pales into insignificance compared to the unfairness and injustice in needing to challenge authorities for responsible action. When confronting Australian government on the DES issue, it always bears considering that the Therapeutic Goods Administration is 100% funded in fees by the pharmaceutical industry. Here lies the ongoing challenge for the organisation DES Action Australia-NSW.

ARE YOU ANGRY?

There are many aspects of DES exposure that can make us angry. DES Action Australia-NSW, especially during DES Awareness Week June 1-7 (on NSW Health Calendar), encounters many DES exposed enquirers who feel angry that they have only recently learnt about the dangers of DES. It is even sadder when these DES exposed people have learnt of the fact of their exposure only by chance through the volunteer organisation, DES Action Australia-NSW’s modest unfunded media campaigning.

Many people ask why the public hasn’t been told about DES and this raises complex questions about government since 1971 and questions about the reasoning for the non-existence of an ongoing government publicity campaign about DES. In spite of all available evidence, DES exposure is hardly ever mentioned as a risk factor in public health information about cervical and breast cancer (cancer information at the forefront), but appears mostly in vaginal cancer information (cancer information in a more background position). DES specific information is in the background and one must know about DES or one’s own exposure in the first place to know to search for this. Aside from clear evidence, the strong argument for the inclusion of DES exposure as a risk factor in public information about cervical, breast and vaginal cancer is found in the Cancer Council NSW DES and Cancer Position Statement (www.cancercouncil.com.au/editorial.asp?pageid=248) where it states that many people remain unaware of their exposure. Placing DES exposure information as far as possible in the forefront of public cancer information is a potentially life-saving public service and is overdue.

The kind of inconsistency in DES information described above is found across all state Cancer Councils. In response to DES Action Australia-NSW’s concerns, it is pleasing news that the Cancer Council NSW has decided to consult the Public Health Committee of the Cancer Council Australia about ensuring information about DES risks and the associated screening recommendations for breast and cervical cancer are consistent and present, particularly in breast and cervical cancer screening information.

There is similar inconsistency in the Australian Breast and Cervical Screening Program websites and DES Action Australia-NSW has forwarded this concern to the government Cancer Screening department.

DES EXAMINATIONS

Where can DES daughters go for their annual DES examinations?

The organisation DES Action Australia-NSW is often asked this question by enquirers. In 2007 the organisation finally received a listing of DES knowledgeable doctors from the Royal Australian & New Zealand College of Obstetricians & Gynaecologists. The organisation has now been able to compile a list to help DES daughters. The list is subject to change and aims to provide us quality healthcare for our known or suspected DES exposure. We always need the names of healthcare providers who are informed about DES and sensitive to the needs of their patients. If you have such a referral, let us know by emailing c_devine@bigpond.net.au
DES Action Australia-NSW
Health Provider Resources for DES exposure healthcare (Jan 08)

Annual Mammography
Public: For BreastScreen clinic, initial letter to your area’s director is suggested. Further assistance from DES Action Australia-NSW is available.
Private: Sydney Breast Clinic (GP referral) Lev 12, 99 Bathurst St Sydney Ph 1300653065

NSW
Dr Jules Black Advocate & medical spokesperson for DES Action
Australia-NSW, Consultant for other doctors re DES: julesblack@bigpond.com
Dr JC Dalrymple 100 Carillon Ave Newtown Ph 95193053
188/2a Hollywood Ave Bondi Jn Ph 93895188
193 Macquarie St Sydney Ph 93895188
Public colposcopy clinic RPA Hosp (Wed AM) Ph 95155270 (GP
referral and booking required)
Prof NF Hacker Gynaecological Cancer Centre Royal Hospital for Women
Barker St Randwick
Prof DE Marsden Gynaecological Cancer Centre Royal Hospital for Women
Barker St Randwick
Dr G Robertson Gynaecological Cancer Centre Royal Hospital for Women
Barker St Randwick
Dr Chris Hunter North Shore Pvt Hosp Lev 3 Suite 3a Westbourne St St Leonards
Ph 94397210
Public Gyn Clinic North Shore Hosp (Tues AM) Ph 99267215 (GP
referral and booking required)
Dr Arifa Khan Suite401 The SAN Clinic, 185 Fox Valley Rd, Wahroonga Ph 94738746
Public Women’s Health Clinic, Westmead Hospital (alternate Thursdays) Ph98455555
(GP referral and booking required)
Dr Sue Valmadre, Suite 102, The Mater Clinic, 3-9 Gillies St North Sydney Ph99222330
Public Women's Health Clinic, Royal North Shore Hospital (every Monday AM) Book by phoning Hospital's Clinic 9. GP referral required.
Prof JR Carter Head Sydney Gyn/Onc Group RPA Hosp
Dr S Pather Gyn/Onc RPA Hosp
Dr GB Gard Lev 5, Douglas Building, Royal North Shore Hosp
Dr FKH Chan Suite 32 1a Ashley Lane Westmead
Dr RJ Hogg Gyn/Onc, Westmead Hosp, Sydney Adventist Hosp
Dr GV Wain Westmead Hosp
Dr AH Brand Dept Gyn/Onc Westmead Hosp Assoc Prof A Proietto 44 Thomas St Cardiff
Dr G Otton PO Box 5 Lambton

VIC
Dr Ross Pagano DES Clinic, Lev 2, Frances Perry House, Royal Women’s Hosp Melbourne, cnr Flemington Rd & Grattan St, Parkville Ph 03 93445077 (held every four weeks (Fri), GP referral & Medicare card required)
Assoc Prof RM Rome Suite 209 Freemasons Day Centre 320 Victoria Pde East Melb
Dr DE Neesham Suite C 285 Cardigan St Carlton
Prof MA Quinn 10th Fl Consulting Suites, Frances Perry House, 285 Cardigan St Carlton
Assoc Prof DG Allen -Dept of Gyn/Onc Mercy Hosp for Women, Studley Rd Heidelberg
Dr PT Grant Gyn Cancer Unit Mercy Hosp for Women, 6th Fl, 163 Studley Rd Heidelberg
Dr SE Hyde –Dept Gyn/Onc Mercy Hosp for Women 6th Fl, 163 Studley Rd Heidelberg
Dr TP Manolitsas 315 Wattletree Rd Malvern East
Assoc Prof TW Jobling 134 Bay St Brighton

QLD
Dr James Orford 71 Blackall Terrace Nambour Ph 54415700
Prof AJ Crandon Suite 5, Lev 7 Specialist Centre Brisbane Pvte Hosp
259 Wickham Terrace Brisbane
Assoc Prof Obermair Ned Hanlon Bldg 6th Fl Royal Womens Hospital Herston
Dr JL Nicklin Suite 74 Sandford Jackson Building 30 Chasely St Auchenflower
Dr LC Perrin Mater Medical Centre Suite 7 Lev 6, 293 Vulture St South Brisbane

SA
Dr Jane Wood Consultant Obs/Gyn Womens Health Clinic, Flinders Medical Centre,
Flinders Dr, Bedford Park
Dr Enzo Lombardi 68 States Rd Morphett Vale
Dr RJ Miller Calvery Oncology 89 Strangways Terrace North Adelaide

WA
Dr YC Leung Suite 27, SJOG Murdoch Medical Clinic 100 Murdoch Drive Murdoch
Dr AJ McCartney 175 Cambridge St Subiaco Ph 93817000
Dr Steve Harding, Head Dept Gyn, King Edward Memorial Hosp 374 Bagot Rd Subiaco

TAS

Dr PI Blomfield Royal Hobart Hosp Liverpool St Hobart

ACT
Dr David Knight, Deputy Director of O&G, The Canberra Hospital 

INTERESTED GENERAL PRACTITIONERS LIST
GPs are the gatekeepers for our health care and our referrals to DES knowledgeable specialists. It is helpful for DES daughters to have a GP with interest in DES exposure health. DES Action Australia-NSW has an information sheet to assist GPs with the DES examination procedure in the circumstance where DES daughters in isolated areas are unable to access a specialist for DES examinations. Contact DES Action Australia-NSW (02) 98754820 if you require a copy.

NSW
Pennant Hills: Dr Magda Campbell 02 98754820
QLD
Warwick: Dr Brian Slattery (07) 46669666
Browns Plains: Drs Elna & Abel Stolz (07) 33800111