Victims of the drug thalidomide came away from a two-hour meeting with Health Canada on Monday voicing "grave concerns" over Ottawa's failure to provide key details about how the federal government's promised financial-support package will work.
The group representing Canada's victims says that nearly two months after the announcement they remain in the dark and feel increasingly anxious about their future. The matter is pressing: A funeral was held Monday for a 53-year-old thalidomide victim from Quebec who died last week.
At the start of last year, the Thalidomide Victims Association of Canada had 97 members. Today, 94 are still alive.
"There is real urgency to this," Mercédes Benegbi, head of the association, said in an interview after her meeting in Ottawa. "How long will this uncertainty last before we get answers? Will someone else die?" The group is eager to get the details sorted out before a federal election, and worries the government is stalling until after the vote.
The federal government sent out lump-sum cheques to thalidomide survivors last month for $125,000 – half of what the victims' association had asked for – but has provided few answers about what the group considers the far more crucial long-term support. The Harper government has pledged "up to $168-million" in medical assistance paid out as annual compensation.
But the group says it can find no mention of the $168-million in the federal budget last week, and Health Canada officials were "unable to give us any definitive information on where the money is," the Canadian thalidomide task force said in a statement.
Officials from Health Canada told The Globe and Mail that funds for the survivors' support package are in the budget under "direct program expenses."
The group also got no answers about how the long-term fund would be run; the victims' association wants the money invested in a trust, based on the British model, then paid out in annual sums of $75,000 to $150,000 depending on victims' degree of disability.
But Health Canada officials responsible for developing the thalidomide program were unable in Monday's meeting to come up with any specifics.
"There was zero transparency, zero reassurances, just zero," Ms. Benegbi said. "We have enormous concerns, and we heard nothing reassuring. Why can't we see the $168-million anywhere?"
Federal MPs from the ruling Conservatives and opposition parties voted unanimously on Dec. 1 to extend "full support" to Canada's victims. However, aside from the $125,000 cheques, the Thalidomide Victims Association has received few specifics. Victims of thalidomide are struggling with growing physical pain as their disabled bodies age, forcing many of them to abandon jobs and fight to maintain their independence. The victims, whose mothers were prescribed the federally approved drug for insomnia and morning sickness, were born with partial or missing limbs, blindness, deafness and internal organ damage.
The Quebec man who died last week suffered from cardiovascular disease and ended up in hospital.
"My brother never accepted his state [from thalidomide], but he learned to live with it," his sister, who asked to remain anonymous, said after attending his funeral on Monday.
The uncertainty over future financial support weighs heavily on those whose lives were harmed by thalidomide. Victim Bernadette Bainbridge lives with her parents, both in their mid-70s, in their home in Whitby, Ont. The family has its eye on an apartment in an assisted-living complex in Whitby so Bernadette can move out and live independently as her parents age.
But without financial security, the Bainbridges don't know if they will be able to afford the $4,700-a-month payments.
"It's just horrible. I haven't a clue how much the government is going to give [Bernadette], and I can't plan for the future," Anne Marie Bainbridge said on Monday. Ottawa's decision to send victims cheques for $125,000 rather than $250,000 has added to her skepticism about the government's intentions. "It makes me doubly suspicious about what's going to happen next."