Canadians are stepping up with offers of financial and emotional support as the victims of thalidomide find themselves in the dark and increasingly anxious about Ottawa's timeline for delivering a financial-aid package.
Three weeks after a hoped-for deadline came and went, thalidomide survivors are still waiting for a signal from the Conservative government about how and when it will make good on its promise to compensate them for the ravages left by the federally approved drug.
The government voted with the opposition Dec. 1 to give victims "full support," a step seen as a historic gesture of recognition. Since then, however, the thrill of that recognition has turned into a tense waiting game.
The Thalidomide Victims Association of Canada, which set a Jan. 26 deadline for the government to act, had expected an indication of a timeline from Ottawa last week but came away empty-handed, and the federal government has refused to set a date for when financial relief might come. As of Monday, no meetings were scheduled with the association.
"The vote [on Dec. 1] was like a glorious gesture, but where is the glory in letting all this time go by without giving us any news?" Mercédes Benegbi, head of the victims' group, said Monday. "Members are starting to fear it was all a façade."
Meanwhile, Ms. Benegbi said Canadians have been contacting the association to make donations and voice their support.
"People are sending donations and writing to us to say they're outraged. They want to come to the aid of thalidomide survivors," Ms. Benegbi said. While deeply appreciative of the donations, she said only federal compensation will give survivors the financial autonomy they need to live in dignity.
Federal Health Minister Rona Ambrose says the government remains committed to compensation for the nearly 100 Canadians dealing with escalating pain and financial hardship as a result of their disabilities. Late last week, the Health Minister continued to offer reassurances to the victims without a specific pledge.
"We hope to make an announcement as soon as possible," her office said in a statement to The Globe and Mail.
The absence of a clear schedule has left victims under growing strain. Now in their early 50s, they were born with shortened or missing limbs and other severe congenital defects because their mothers were administered thalidomide to treat insomnia and morning sickness during their pregnancy.
"We're trying to wait patiently but it's very stressful. We're walking on eggshells," said Sandy Hatch, a 52-year-old from Hamilton born without arms, who, like many thalidomide victims, has experienced declining health. She underwent two knee replacements last year and takes anti-depressants. "We need to know. We've been waiting long enough," Ms. Hatch said.
The Globe and Mail detailed Ms. Hatch's health difficulties this month and reported that the first thing she would buy with federal assistance was an electric bed because she now struggles to pull herself out of bed each morning.
In response to the report, an Ontario health-supplies company that makes electric beds, Joerns, reached out to Ms. Hatch and offered to donate one. Ms. Hatch's former schoolmates contacted her through Facebook asking what they could do to help.
And Oakville, Ont. resident Bob Humfrey contacted the Hatch family – Ms. Hatch lives with her parents – and offered them the electric bed that had been used by his late wife, who suffered from MS for 20 years.
Mr. Humfrey, 80, said the federal government should already have acted on its financial support promise.
"I've been appalled by the government's slow reaction," Mr. Humfrey said in an interview. "We're probably spending more in a week [in combat zones] than we would spend on them for the rest of their lives," he said about the victims.
The thalidomide association is seeking a compensation package modelled on programs in Germany and Britain, countries that have long supported their thalidomide communities financially. The Canadian association wants an initial lump sum of $250,000 a victim for immediate needs and long-term support through annual payments of $75,000 to $150,000.
The group is not negotiating with Ottawa on the terms of a deal – it expects the government to fund the package as the group submitted it.
"We're being asked to be patient for a few more weeks. But our members are becoming more and more anxious," Ms. Benegbi said. "I'd like to remind the government that the situation is urgent. We've waited long enough."