The federal health minister who reached the 1991 compensation deal with Canadian thalidomide victims says he sought as generous a package as possible, but nothing stopped the group from returning to Ottawa to obtain more.
Perrin Beatty, health minister from 1989 to 1991, says his government's package was making good on a 1963 federal promise to care for the victims of thalidomide, who were born with severe deformities after their mothers took the federally approved drug during pregnancy.
"They had waited some 30 years and the goal was to get assistance to them as rapidly as possible," Mr. Beatty said in an interview. "We in the department of health made the argument we should be as generous as we could possibly be. … For people who were destitute, any money that we could get to them would help provide some assistance."
In time, that deal – one-time payments of $52,000 to $82,000 per person – proved inadequate in addressing the declining health and growing needs of Canada's current 95 survivors. The Thalidomide Victims Association of Canada is to sit down with the government in Ottawa on Monday to start hammering out an agreement for new money. There will be a one-on-one meeting between Mercédes Benegbi, head of the association, and Health Minister Rona Ambrose.
At the time of the 1990s deal, victims were in their late 20s and it was impossible to anticipate how aging would affect their health. Now, as they enter their 50s, their bodies are under strain from the repeated use of their feet and teeth to substitute for their missing arms. Many rely on friends and family as they cope with constant and increasing pain. Quebecker Judith Pilote, who has no arms or legs, depends on her ailing spouse to lift her into the couple's compact car. If new federal money comes through, she would replace the car with an accessible adapted minivan.
"My dream is that the government helps pay for that minivan," she said from her home in the Saguenay region. "I love my husband, he does everything for me. I don't want to be a burden on him. If I didn't have my husband I'd be completely alone."
The thalidomide victims' cause in the late 1980s was championed by the War Amps of Canada. Its battle for compensation with the Progressive Conservative government under Brian Mulroney spanned several years (beginning before Mr. Beatty's arrival in the health portfolio). The group even took the case to the UN Human Rights Committee on the grounds that Canada was violating the rights of thalidomide victims; the case was later dropped.
"It was a struggle," said Brian Forbes, who was legal counsel for the War Amps at the time. "The government was not terribly generous in its response."
Thalidomide victims felt they were being presented with a take-it-or-leave-it offer. Ottawa, for its part, had also been negotiating the urgent cases of Canadians who contracted HIV from tainted blood at the time. The demands had to be presented to the finance department. "The package we were able to achieve represented the best effort we could make," Mr. Beatty said.
Then, as now, the victims were pressing for compensation on compassionate, not legal grounds. The 1991 package was seen as the fulfillment of the 1963 pledge made by then-health minister Jay Waldo Monteith, only a year after thalidomide was yanked off the shelves in Canada. "It is our job to ensure that these victims are cared for in the best possible manner [and] that their needs are met to the fullest extent we can devise," Mr. Monteith said.
Mr. Forbes says Ottawa remains accountable on moral grounds for licensing the drug. The United States never approved it.
Thalidomide was sold in Canada starting in April, 1961, sparking a public-health catastrophe before being withdrawn in March, 1962. The drug, developed by the German company Chemie Grünenthal and sold around the world, was marketed as a safe "wonder" drug to treat morning sickness and insomnia in pregnant women. More than 100 babies were born in Canada with missing or malformed limbs, deafness, internal organ damage and other health problems. Two survivors died this year.
The Thalidomide Victims Association is seeking a tax-free, lump-sum payment of $250,000 per victim plus annual lifetime payouts of $75,000 to $150,000 depending on the person's level of disability.