desact@vicnet.net.au
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| DES ACTION AUSTRALIA | HOME | Contact DES: desact@vicnet.net.au |
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About DES Action Australia DES Action Australia is a national support and advocacy group for people exposed to the synthetic oestrogen DES, and related hormones. Beginnings DES Action Australia formed in late 1979. The DES issue received publicity in Australia following media interest in a New York court case: Joyce Bichler was the first DES daughter to successfully sue the pharmaceutical industry over clear cell cancer. In September 1979, Melbourne's 'Age' newspaper and local ABC TV did follow-up stories looking at the use of DES in Australia. Taking the initiative, the Union of Australian Women organised a public meeting for interested women. At the meeting women's health advocate and author, Bon Hull, outlined the history, the effects and the politics of the DES issue. A small group formed, comprising DES mothers, daughters and other interested women. The UAW "assigned" Yvonne Smith to help set up the fledgling group and she was an invaluable resource, providing support and practical suggestions. Another UAW member, Wendy Lowenstein, also provided practical assistance by lending us her postal box to use as our address until we organised our own. Yvonne, Bon and Wendy were our early mentors and great role models. Our first reactions to the DES issue were disbelief and shock - how did this happen? why weren't we told about it? why weren't we warned in 1971? This is still the reaction of people today when learning they are DES exposed. The reaction of the health authorities was to initially deny that DES was ever used in Australia (this came as rather a surprise to us) and then later to say it had limited use in Victoria only, and everyone concerned had been notified (again, news to us!). This reaction not only let us down but also our doctors. Many a doctor/patient relationship was ruined by the doctor telling a DES mother, daughter or son that DES was never used in Australia. Further reading: Our immediate needs were for accurate, reliable and up-to-date information; sympathetic, informed doctors; and access to appropriate screening tests and health care services. None of these was readily available. Finding Out the Facts There was no information available. Many people ended up going to medical libraries and looking up the journals. We made contact with DES Action USA (and later other DES Action groups around the world) to share information and experiences. Getting the Message Out Our first priority was to disseminate accurate, up-to-date information - hence DESPATCH, our newsletter. From the first issue in September 1980 DESPATCH documents our activities and the emerging health issues over the years. In 1983 we produced a pamphlet 'Are you a DES Daughter?' Based on a DES Action USA pamphlet, it outlined the known effects of DES (at that time), the correct screening for clear cell cancer and a list of Australian brand names. It was designed to not only inform people who contacted us, but also give them something to take and show their doctor. We had 6,000 printed and all had been distributed by the end of the 1980s. A comprehensive article on the DES issue (again, as known at that time), 'DES: The Wonder Drug You Should Wonder About', was published in the Health Issues Centre's journal in November 1985. We developed an "information kit" that included an information sheet of 'Frequently Asked Questions' (FAQ) which has had to undergo regular revision over the years as new issues and health risks emerged. In 1997 we distributed a 'DES Action Health Survey'. Based on a model developed by DES Action USA, it was a questionnaire for DES mothers, daughters, sons and grandchildren. It was an attempt to "formalise" and document just where and when DES was prescribed in Australia. It also attempted to document the range and diversity of health effects associated with DES exposure. Further reading: Political Action Shortly after the group formed the UAW assisted our first foray into political lobbying. At this time we (foolishly) believed the "experts" and thought DES use was limited to Victoria. A deputation of four DES Action members met with the Victorian Minister of Health and his advisers in February 1980. We presented a comprehensive report on the effects of DES exposure (known at that time) on DES daughters, sons and mothers. Included was a 5 point proposal that - there be a comprehensive education campaign aimed at the medical profession; - that a similar campaign be aimed at the general public so those who were DES exposed would know to seek appropriate health screening; - that a register of the Victorian DES population be compiled, this being (a) crucial for the screening and long-term management of DES exposed persons, and (b) a necessary preliminary step to future research into DES effects; - that information and screening centres be set up throughout Victoria in metropolitan, rural and regional health facilities; - and that DES Action be involved in any and all ongoing activities and projects. The Victoria Health Department referred the issue to a sub-committee of the Royal Australasian College of Obstetricians and Gynaecologists (RACOG). DES Action was totally excluded from the process - there was no consultation or involvement at all. In December 1980 the State Government announced that one clinic would be established, at the Royal Women's Hospital (RWH), for the screening of DES daughters only. A state register of all DES daughters was to be established and maintained at the RWH. Further reading: The DES Clinic, RWH The clinic at the RWH was eventually opened in March 1983. There was never a statewide register established. There was never an education campaign to inform either the medical profession or the general public. The existence of the DES Clinic was never publicised and the medical profession did not know of its existence. It appears that the Victorian Government and the RWH were unaware of the innovative service that existed. The DES Clinic at the RWH was the first public DES clinic in Australia and one of only a few in the world. It was an unique and groundbreaking health service. It was just a pity no one knew about it! During the late 1980s DES Action was involved with first the "RWH Consultation", and then the long-running "DES Clinic Review", in an attempt to make the clinic more accessible and "user friendly". Abruptly in 1998 the clinic was "privatised". Still the only DES clinic in Australia, and hence the only "cohort" of DES daughters, we are concerned that it is no longer in the public domain and therefore no longer accessible to other doctors and medical researchers. In 1999 DES Action was involved with the Well Women's Services of the RWH in revamping information resources on the DES issue, and with a forum "Discovering DES" held in June. The national media coverage following this event lead to both the RWH's information service and the clinic being overwhelmed with inquiries. Further reading: Other Activities Our activities over the years to raise awareness of the DES issue have included radio and TV interviews; writing 'Letters to the Editor', participating in consultations/reviews of services; giving talks to both community groups and medical professionals; and participating in forums and workshops. Over the years these activities have been documented in DESPATCH. Following any widespread media publicity, such as appearing on '60 Minutes' (1983) and 'A Current Affair (1999), we are inundated with letters and phone calls from people realising, for the first time, that they are DES exposed. Over the years the health authorities continued to down play the DES issue. More disturbingly, they have not kept abreast of current research and issues, and appear to be in a 1971 time warp. Further reading: Why DES Action? We have often wondered why we became "active" on the DES issue. After all, none of us were "health activists" in any sense. One possible explanation is a collective sense of injustice. After the initial shock of finding out that we are DES exposed, most of us want to know: how did this happen? and, more importantly, why wasn't I warned? And the more you look into it, the more disturbing it becomes. Not only were we not alerted to the DES crisis in 1971, the Australian health authorities actually put out misleading information and actively dismissed our concerns. Rather than a comprehensive public health policy being put in place to deal with scenarios such as DES, the response of the health authorities was illogical and emotive, solely aimed at "not worrying" the general public. With the benefit of hindsight, we can see that this response was not "personal", i.e. specific to DES. The problem is systemic, and applies to all prescription drugs, and this should be of concern to the whole community. Further reading: Current Focus Over the 25 years of our existence we have had periods of "action" and periods of "hibernation", mainly due to the level of energy we can put into group activities while experiencing the ever widening range of long-term health outcomes of DES exposure. In one sense our membership is an incredibly diverse group, including those with cancer, those without; those with children, those unable to have children; those who struggle with autoimmune disease, thyroid dysfunction, gastro-intestinal conditions, allergies, depression, stress-related conditions... and those who don't. The issue that has emerged in the last decade, and which helps unify the group, is endocrine disruption. It provides the framework that allows us to make sense of our diverse experiences. In a sense we have come full circle. Like 25 years ago, we need accurate, reliable and up-to-date information; sympathetic, informed doctors; and access to appropriate screening tests and health care services. We are back to finding out the facts, trying to get the message out, and trying to raise awareness at the political level. On the personal level we are back to sharing information, sharing names of doctors who understand endocrine disruption and the range of interrelated health conditions which seem to flow on from it. Hopefully this website will assist in the process. Further reading:
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