Thalidomide victims feel optimism, anger over Ottawa’s support package

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The Canadian government has unveiled a support package for victims of the drug thalidomide, an attempt to redress a half-century-old injustice that falls short of what victims had been seeking.

The $180-million package announced Friday came three months after the House of Commons voted unanimously to provide "full support" to those suffering from the effects of the drug. The deal would include a one-time payment of $125,000 to each of Canada's 95 survivors. In addition, the package features a fund of up to $168-million for medical assistance.

"We have a clear obligation, a clear moral obligation, to support the survivors of this tragedy," said Health Minister Rona Ambrose, making the announcement in Edmonton. "Survivors can apply for assistance with their extraordinary health support costs."

Leaders in the thalidomide community said they were given less than an hour's notice of the announcement and were left scrambling to address the concerns of victims, who are facing increasing physical and financial hardship as they reach middle age.

Thalidomide victims had asked Ottawa to provide twice as much – $250,000 – as the government offered, as well as an annual pension, allowing them to decide for themselves how to manage their health and financial needs.

It is unclear what medical criteria victims must meet to access the assistance fund. The lack of details left the Thalidomide Victims Association of Canada unable to explain to victims – many confronting severe joint and muscle pain – whether the government's package would be enough.

Mercédes Benegbi, head of the Thalidomide Victims Association of Canada, says her association needs to analyze the federal package before taking a position.

"We are ready to say we are grateful to Minister Ambrose and her team for their co-operation in the last few months," Ms. Benegbi said in an interview from Montreal. "We are asking for a reasonable time to review what is being presented to be sure it responds to the needs of the 95 survivors."

Some survivors, however, reacted with immediate anger. "I feel we just got shafted again," said Lianne Powell, from London, Ont. "Who is going to decide what a real need is? Why can't we decide what we need? I worry they're going to make us jump through hoops." Ms. Powell said that Canadian survivors had been exchanging their views on Facebook on Friday. "They're furious."

Canada's thalidomide survivors were born in the early 1960s with birth defects such as flipper-like hands, stunted legs, deafness and internal-organ damage. Their mothers, while pregnant, had been prescribed the federally approved drug for symptoms such as morning sickness. The victims are now in their early 50s, many are now unable to work as the costs of living and daily care are increasing rapidly.

The vote in the House of Commons followed a special report in The Globe and Mail that chronicled the growing challenge facing survivors.

As the months passed, victims grew increasingly anxious as Ottawa went silent about its impending offer. On Thursday, Ms. Benegbi wrote to Prime Minister Stephen Harper expressing victims' growing concern, noting that Tuesday would mark 100 days since the Commons' vote.

"We cannot wait any longer," she wrote. "We have struggled too long already."

Friday's announcement caught the victims' group off guard, coming on short notice after limited consultation with leaders.

Nonetheless, the Official Opposition hailed the announcement. "This is a good day for the victims of thalidomide. They've certainly had to wait long enough," NDP health critic Murray Rankin said.

The $168-million medical assistance fund will be disbursed in annual payments based on assessed need. Payments may not begin until 2016 but will continue for the rest of the survivors' lives.

The government will sign a "contribution agreement" to govern the distribution of this medical assistance cash. Ottawa has not yet determined which entity will be a third-party administrator. After an administrator is chosen, there will be an assessment of each survivor's medical needs.‎ It is not known when these will begin, and Ottawa has not yet determined who will conduct assessments.

Peter Settle of Milton, Ont., says he feels betrayed and will turn down the package if given the opportunity. "They can make a better offer, it isn't sufficient."

Both he and his twin brother, Paul, felt they would get a pension after parliamentarians voted to do as much as they could. He now has few options left. After working for 23 years, Mr. Settle, 53, was forced into early retirement seven years ago when two discs bulged in his back. His spinal cord has deteriorated quickly since then and he now lives in chronic pain.

"We're all disappointed," Mr. Settle said. "Within a year there won't be anything left. Then I'll have my medical expenses covered? I don't have a proper pension. I'll be living below the poverty line."

He says he was looking forward to the money to buy a new wheelchair and an orthopedic bed. He is only 4-foot-10 and has use of only one leg, and his apartment isn't accessible.

Responding to the criticism, Health Ministry spokesman Michael Bolkenius said the package is designed to meet the "unique needs of each survivor" for the remainder of their lives.

Living in Vancouver, Gavin Bamber says he's cautiously optimistic but warns that he will be "disappointingly unhappy" if the government's package will only be used to refund submitted expenses.

"We require a monthly bank account deposit to pay for our needs as they arise, rather than a fund that requires us to submit expenses, which may be rejected depending on how assessments are administered," Mr. Bamber said.

The very act of filling out paperwork or online forms can be physically taxing. Marie Olney of Calgary has applied for many government programs over the years and has struggled physically to work her way through forms. She's now afraid the government's fund might run out of money while she still needs help.

"Are they thinking we're all going to be dead in 17 years? Do they have contingencies? I've had some longevity in my family," she said. "I have to do more of the math and know more of the details to know how the money will be distributed."