Wednesday 19 November 2008

Carol Devine is a “DES daughter” and founder and coordinator of the Sydney based group, DES Action Australia-NSW, which formed in 1995. The group has been contacted by thousands of people across Australia affected by the anti-miscarriage drug, DES (diethylstilboestrol or “stilboestrol”). In 2008, Carol received judges highly commended in the Soapbox Category by Fellowship of Australian Writers –Qld for her article titled “Voices of Thousands Ring”. Many people, including those unaffected by the DES drug have been moved in some way by this written work as it sheds light on the Australian experience of DES exposure. Here it is:

Voices of Thousands Ring

By the time of drawing my first breath, my foetal body was drenched in one of the most potent drugs to cause cancer and reproductive deformities. With the best of intentions during pregnancy, my mother was prescribed an increasing dose of this toxic drug until it meant swallowing a handful of tablets every day. My exposure to this drug was never obvious to the “outside eye” and its harmfulness not realised by researchers until 1971. I can’t imagine my mother’s feelings and depths of despair on the day she found out, only by chance, about this drug’s horrors. She blames herself, but she is blameless in this instance. This was only the beginning of my experience with the time bomb anti-miscarriage drug called diethylstilboestrol – “DES” for short or sometimes called “stilboestrol”. I was only sixteen.

Over years DES effects insidiously nudged their way into my life, with miscarriages, deformed t-shaped womb and premature deliveries. Doctors shuffled uncomfortably in their chairs at the mention of the “D” word and conjured myths about the drug, such as - it was only a problem in USA. Thus my isolation and freakishness was instilled. My girlfriends disbelieved my story, their quizzical expressions alluding I must have been touched by madness. Clearly my credibility would have been in better stead with extraterrestrial yarns of aliens tampering with body organs. A code of silence was built. No one was meant to know.

I fronted dutifully to yearly DES exposure check-ups, when strangely, a doctor with his back turned muttered, “We don’t see many of YOU lot anymore.” This nebulous quip of 1993 sent my swelling curiosity on a snowballing roll. I was not alone now, but plagued by the questions of what has happened to the others and why aren’t they seen. Nervously I offered my story to news media – to a newly arrived Irish journalist. He had amazingly covered the DES story in Ireland. My long held fears of being discredited dissipated. To the call of the article, the voices of thousands of DES mothers, daughters and sons from across Australia bombarded my home. All expressed scarily similar threads in DES exposure experiences. All were desperate for support and to see an end to their disenfranchisement by doctors, government and medical authorities. My database grew like a creeping virus and a group of us “lot” was formed. Many were oblivious to the necessary and potentially life-saving preventive care – the yearly “DES examination”, an extended form of Pap smear. Many were oblivious to the fact of their DES exposure until stumbling on the news article. Many had strained personal relationships due to their exposure. Disturbingly, some had succumbed to DES caused cancer of their reproductive organs, needing extensive radical surgery resulting in infertility - yet their side-effects were never reported to Australia’s drug watchdog, the Therapeutic Goods Administration. My head whirled with a myriad of heart rending stories. An overwhelming fear of grave injustice clouded my thinking. It was a foreign fear to me, touching nerves that were personal, so deeply intimate and yet so public. My first primal scream was screamed - in private - in my car.

My questions were abound and most meant investigation by correspondence or via the Freedom of Information Act. Three stood out starkly: How many affected? How is the special preventive care recognised? What is the priority for awareness promotion? For a government touting its care for people, surely these questions have been properly and fairly addressed......

Knowing the magnitude of the DES problem is crucial to knowing the attention it deserves. After all, this information fits squarely into the evidence and numbers game played so well by government. Our group sought official data that showed the DES exposed population to be 68 000, but there was other data requiring investigation showing a figure possibly as high as 156 000. Before the DES scenario, the DES cancer type was very rare, very aggressive and was always an old woman’s cervical and vaginal disease. With DES exposure this cancer usually happens in adolescents and young women. Lately, we know there have been cases showing around menopause. We were dumbfounded to find the official data listed a DES exposed four year old girl. Diagnosis at such a young age is unknown to the international DES Registry and still remains undisclosed. Our copies of government minutes reveal failures to report diagnosed women. They staggeringly reveal five further children diagnosed in Children’s Hospitals, but these were not reported, nor investigated for DES linkage. Adding insult, the government refused our suggestion of sharing data reciprocally with the international DES Registry. Government letters touting care for us clogged our office.

My phone rings. A softly spoken quivering voice says, “I was told I was the only DES daughter in Australia.” We share much. The phone call ends. My head whirls with heart rending stories. I sob into my pillow.

The first ever official information about DES directed to the public was in 2004 with a media release by the Therapeutic Goods Administration and this came 33 years after the first warnings about the drug. Disgracefully this media release failed to convey the ongoing risk of DES caused cancer and the need for continued special care. This important information was undeniably clear to the rest of the world. Rectifying this matter involved our four year lobbying struggle with politicians and medical authorities, eventually needing assistance by solicitors. It was not until April this year that the Therapeutic Goods Administration issued a media release and website alert with helpful information about DES for the Australian public. Still, not many people know about DES. Indeed, no one was ever meant to know about DES.

My phone rings. A third party message comes. A DES exposed woman high in government circles has been told she does not need any special care for her DES exposure. I relay her messages about her vital care. She is shocked and sickened that she has been misinformed. To act on this with government her hands are tied. Our messaging ends. Betrayal by government is powerful, sparing none. My head still whirls with heart rending stories. I am nauseous with anger.

Strong resistance and dualism by government flared on the subject of promotional information. In spite of the Therapeutic Goods Administration’s media release last April, government advice currently states DES information is not practical and could create unnecessary anxieties for women. To us, this makes no sense at all. We figure most Australians would want to know of the possibility of having been DES exposed. No thought is shown towards the anxiety created by not being made aware of DES. Our practical low-cost suggestion of DES information distribution directly to women attending Cervical and Breast Screen Programs was ignored. Astonishingly the government has chosen instead to operate on the baseless assumption that DES exposed women already know of their exposure. Such resistance in promotion exhibits Third World health standards by failing to support the informational needs of those affected.

My phone rings. A DES daughter’s distressed and pressured voice speaks. Only minutes ago, she and her sister first learnt of their DES exposure on hearing their mother’s last words on her deathbed. The mother’s pain of guilt was intolerable. I listen. Once finished I verge towards melancholia. My head always whirls. The scars run deeply...invisibly...and quietly.

Our paper trail with ricocheting and often circular correspondence has dealt us hurtful responses from government that duck and weave elusively, are outright resistive or are just plain rude. We are told there is no time for us due to Avian Flu, or that future correspondence will be of no benefit, or simply that “your concerns have been noted”. The value of human life has been lost. Hence a leap is made to the domain of criminal behaviour, begging the question of pecuniary interests with pharmaceutical companies. My DES experience with its civil savagery, the downfall of democracy, the abuse of human rights and the destruction of justice is to end all naive notions of Australian government. My words ring for thousands.

Last night I dreamed the phone rang. It is a serious, kindly and heartfelt voice. It is the Minister’s office with news.....
© Carol Devine, September 2008


Donna's Daughter said...

Thank your for sharing your personal story with everyone. You have probably saved many lives with your efforts to help women uderstand their exposure to DES and educate DES daughters and doctors about health examinations. Everyone has a right to be well informed. At least they know there are steps that they can take to look after their health.
Will you be talking about other people who have been exposed to DES? eg. Tall Girls Syndrome, male offspring and transgenerational exposure?

Carol Devine said...

Good question by Donna's daughter. The weblinks provided give a fairly comprehensive coverage of what is known so far on DES effects. Most certainly as new research comes to light, I will be placing this information on this site.