Thalidomide survivor Susan Wagner-White walk on the front steps of Parliament Hill December 1, 2014 for the vote on NDP motion which calls for compensation for thalidomide survivors.Dave Chan/The Globe and Mail
Canada's thalidomide victims are giving Ottawa a two-week deadline to provide clear answers on its promised lifetime aid package.
Frustrated that the Tories have been faster to offer vague pronouncements than specific details, the Thalidomide Victims Association of Canada has written to Health Minister Rona Ambrose urging her to give them answers by May 25. Otherwise, a group of thalidomide victims will travel to Parliament Hill to "make their presence felt," said Mercédes Benegbi, head of the victims' group.
"We are not accepting any more delays," Ms. Benegbi said on Sunday. "Had the government comforted us by giving us information, we wouldn't be here now."
The victims' group is turning up the heat as Parliament approaches the summer recess. More than five months have passed since Parliament voted unanimously to extend full support to the nearly 100 Canadians whose lives were ravaged by the drug, yet the victims have received no response to their most central demands.
Ms. Ambrose pledged last week to table government proposals for a lifetime compensation package before Canada goes to a fall vote. But her department has been mum on the victims' repeated demands of annual pensions ranging from $75,000 to $150,000, based on beneficiaries' level of disability.
Ms. Benegbi wrote to Ms. Ambrose on Friday, setting a May 25 deadline for addressing the victims' concerns. Though many struggle with debilitating health problems, they will travel to Ottawa to press for their demands, she said.
The victims' worries are being fed by the Conservative government's handling of the issue so far.
When Ms. Ambrose announced the government's $180-million support package on March 6, she gave Ms. Benegbi a half-hour warning and no say about the contents. The government's lump-sum payments of $125,000 for each victim, while welcome, were half as much as the association had sought. The group fears the same math will apply to the lifetime, annual payments.
"The government needs to be open with us," Ms. Benegbi said. "They have to show us the details. They have to engage with us so we can secure the future of the victims. We're trying to take our destiny in hand, because these decisions will have an enormous impact on us."
Asked for comment, Ms. Ambrose's office referred to the remarks she made before a parliamentary committee last week. The minister said her department is "working very hard" and hopes to spell out the details on the package "in the near future."
The thalidomide victims' group began lobbying Ms. Ambrose's office about offering compensation more than a year ago. Her office ignored the group until The Globe and Mail exposed their health problems in the fall. Since the group began its campaign, three thalidomide survivors died. There are now 94.
Some victims are getting impatient with Ottawa.
"As one of the now 94 victims, I will do everything within my power to stay alive to see what the government promised us," Susan Wagner-White, a thalidomide survivor, said in a post on The Globe and Mail's website. "It is a sad indictment for our country that we have lost three members while we wait."
Thalidomide was a drug approved by federal health authorities in Canada in 1960 and dispensed to pregnant women as a solution for nausea and insomnia. It proved to be a so-called teratogen, meaning that it caused severe malformations in the fetus when taken early in pregnancy. An untold number of babies were born in Canada with deformities such as missing arms and legs, internal organ damage, deafness and blindness.
The victims are now in their early 50s and suffer from severe deterioration in their health. Many are unable to work and suffer from chronic joint and muscle pain.
The United States never authorized thalidomide. A Canadian-born doctor working at the U.S. Food and Drug Administration, Frances Kelsey, refused to approve it because she had doubts about its safety.