A REAL MULTICULTURAL AFFAIR

There would be people residing in Australia who were DES exposed in overseas countries and in some of these countries, DES usage in pregnancy extended well beyond 1971. We also have reports of DES usage in pregnancy in Australia in the mid 1980s. Here is a listing of some countries involved: USA, Canada, Ireland, France (usage peaked 1976), UK, Netherlands, New Zealand, Belgium, Czechoslovakia, Finland, Germany, Italy, Norway, Portugal, Spain and Switzerland. Lately, our organisation has heard of cases in Philippines, Israel, Mexico, New Guinea, Malaysia, Kenya, Namibia, Nairobi, India (reported usage 1975), Indonesia, Egypt, Russia, Germany (1973) and Poland (as late as 1991).

At a 1992 symposium held in Sweden [J. Psychosom. Obstet. Gynaecol. 14 (1993) 71-89], concerns were raised that DES might still be given to pregnant women in many parts of the world, including East and Central Europe, Africa, Asia and Latin America. Those present called for measures to alert medical professionals world-wide to the hazards of the use of DES, and requested measures to effect an international ban of DES in medication for pregnant women.

In the late 1990s our organisation DES Action Australia-NSW, upsettingly, received reports of current DES usage in pregnancy from overseas doctors who are employed or studying in Australia. In one scenario, our organisation was presenting a general talk to overseas doctors about the role and function of community support groups. Upon receiving information about the hazards of DES for the first time, a number of these doctors were understandably traumatised through their knowledge of the current practice of DES usage in pregnancy in their respective countries. The countries involved were Pakistan, Bangladesh and Sri Lanka.

So far, our organisation has found no evidence of any actions addressing the very serious concerns raised at the 1992 Swedish symposium.

INTERNATIONAL DES ACTION CONTACTS
DES Action USA (International) http://www.desaction.org/
DES Action Canada www.web.net/~desact
Reseau France reseaudesfrance@wanadoo.fr
DES Action Ireland http://www.desaction.ie/
DES Centrum, The Netherlands http://www.descentrum.nl/

NEW BOOK FOR YOUR READING LIST!

Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry’s Quest to Manipulate Height

By Susan Cohen & Christine Cosgrove (ISBN 978-1-58542-683-6)

For decades, controversial treatments have been prescribed for children who fall outside a height range considered “normal”. Some children have benefited, some have not achieved desired effect, but others continue to suffer devastating side effects. DES was one of these treatments used to inhibit growth in young girls (already unusually tall) from the 1950s to the mid 1970s and there is concern about its effects. In 2004 the first real research was undertaken in Australia and this showed that girls prescribed DES to stunt growth have greater risk of infertility.
Science journalist, Susan Cohen and Christine Cosgrove, a WebMD contributor, both from USA, offer their riveting book detailing attempts to manipulate the height of children and the ethics of these experimental treatments. Doctors, drug companies and others who should know, freely admit there is no way, except in rare instances, of predicting anyone’s height at maturity. The motives of all the key players - parents, doctors and drug companies are questioned. The stories of the boys and girls themselves are told, many of them now grown and who were subjected to a wide range of non-FDA approved medical procedures. These consisted of extremes doses of oestrogen, pituitary glands taken from both animals and human cadavers, and testosterone injections, often with disastrous side effects.

In USA, it is estimated that thousands of tall girls were prescribed DES – often 100 times the amount of oestrogen delivered in a high dose birth control pill – daily over a period of years. These doses sent them prematurely into puberty and forced their growth plates to close. There are treated girls now in their 30s, 40s, 50s and 60s who blame these huge oestrogen doses for their myriad of health problems – including weight gain, ovarian cysts, miscarriages, blood clots, endometriosis, depression and infertility. In the early 1970s doctors switched tall girls over to different types of oestrogen when DES was found to cause cancer in the offspring of women prescribed it during pregnancy.

The book includes the plight and eventual success of the Australian group, Tall Girls Inc (chaired by Janet Cregan-Wood) in their demand for a DES follow-up study. The Australian researchers, who tracked down several hundred women and their parents, discovered that some families were still unable to talk about the subject. One woman said her teenage daughter had run away years earlier rather than take the pills, and she beseeched the researchers to let her know if they found her.

Cohen and Cosgrove pull no punches in this book. They note there have been many more incentives to encourage treatment with hormones than to study the drugs’ long-term effects.