DES Action Canada : DES Action Canada is a bilingual not-for-profit community and social service organization founded in Montréal in 1982 by Harriet Simand and her mother Shirley. At the time, Harriet Simand was being treated for a rare form of cancer linked to in utero exposure to diethylstilbestrol (DES), a drug that had been prescribed for her mother twenty years before. After doctors were told not to prescribe this drug to pregnant women, very little was done to alert Canadians to its risks. Harriet Simand wanted to make the public aware and to help people who had been exposed to DES in utero and suffered its side-effects. The mission of DES Action Canada is to inform the public and the medical community of the long-term health consequences of exposure to DES in order to ensure that this type of mistake never happens again.
DES is a synthetic form of estrogen that was prescribed to pregnant women in Canada (between 200,000 and 400,000) and in North America between 1941 and 1971, as well as in other countries after 1971 to prevent miscarriages. This drug, marketed under more than 200 different names, is harmful to mothers because it may cause them to develop breast cancer. First and second generation children "both boys and girls" exposed to DES in utero, may also develop health problems related to the reproductive system.
Sponsored by the McGill Cancer Centre, DES Action Canada received a first grant of $20,000 from Health Canada to launch a pan-Canadian organization. In 1983, Health Canada gave a $72,000 grant and continued to provide financial support. Since its creation, DES Action Canada has been the only Canadian organization dedicated to helping people exposed to DES and has maintained close ties with scientific, medical and community organizations in Canada.
DES Action Canada pursues its awareness-raising work through a toll-free information hotline; the DES Action "Newsletter" issued four times a year, flyers and brochures; access to a documentation centre; conferences, seminars and information sessions; representation and participation on various government working committees aimed at informing policy-makers about the issues surrounding drug regulation and medical innovations. The organization also updates the information on diagnosing and treating people exposed to DES that is required by physicians. As well, it gets involved in public debates on policies on drug testing, manufacturer responsibility, medical responsibility and post-marketing monitoring, and intervenes in DES-related issues, such as the use of synthetic hormones in contraceptives and fertility treatments. In 1991, the organization also presented a brief at public hearings by the Royal Commission on New Reproductive Technologies.
In 2004, there were eleven regional groups or volunteer chapters in different provinces across Canada, including D.E.S. Action Québec, which was founded in 1985 by Lise Laporte and Rosanna Baraldi. There are thirteen groups working in the United States, Europe and Australia to ensure that the DES tragedy never happens again.
DES Action Canada is the first group of its kind in Canada, and the first to provide this kind of information around the world in French, since no other Francophone country where DES is prescribed had alerted women. It was not until 1985, at the Conference in Nairobi, Kenya, that it was decided to set up a DES Action International.
In 1986, the National Film Board produced a documentary on the topic: "DES : An Uncertain Legacy / D.E.S. : un triste héritage", which premiered during DES Action Canada Awareness Week, which was organized by DES Action Canada in collaboration with the federal government.
In 1983, Harriet and Shirley Simand were named Women of the Year for their exceptional contribution to the health field by the Salon de la Femme in Montreal (the jury chair was Simonne Monet-Chartrand). That same year, Harriet received the Terry Fox Humanitarian Award. In 1986 she received the Molson Pioneer Club Award in recognition of her significant contribution to the community. In 1991, she was awarded the Canada Volunteer Award by Health Canada for her outstanding voluntary contribution to improving the health and well-being of citizens. In 1992, Shirley received the Canada 125th Anniversary Governor General's Commemorative Medal for her significant contribution to Canada. In 1987, Health and Welfare Canada cited DES Action Canada as an exemplary organization in its brochure entitled "Seven Steps to Better Health Promotion".
