Thalidomide survivor Alex Niblock resting and reading a book she considers one of the best ones about the thalidomide story.Rachel Lenkowski/The Globe and Mail
Every year, David Fullerton, a thalidomide survivor in Scotland, receives an annual health grant – a government subsidy created to make amends for the negligence that caused his disability.
Mr. Fullerton, who was born with a shortened arm and malformed hands after his mother was given thalidomide while she was pregnant, can spend the grant on whatever he decides will improve his health and wellness.
In his case, that amounts to about $20,000, although those with more severe disability receive significantly more. Recently, the 63-year-old used it to pay for services such as a personal trainer, regular massages and singing lessons. He does not have to explain himself or save a single receipt.
“It’s a dignified situation,” Mr. Fullerton said. “We deserve not to be told what to do by the system that failed us.”
Meanwhile, in New Glasgow, N.S., Lee Ann Dalling fills out pages of paperwork to claim money from Canada’s version of the medical fund, also created to support the survivors of one of the worst drug-approval failures in the country’s history.
Ms. Dalling has to explain in detail how each claim relates to her extensive thalidomide disabilities, which include severely shortened legs and no hip sockets, malformed knees and misshapen thumbs. Requests often lead to appeals, she said, and the rules are constantly changing.
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This summer, Ms. Dalling, who is now in her 60s, and suffering from chronic pain and arthritis, learned that her gym membership will no longer be covered.
Having to justify her needs “is degrading and humiliating,” Ms. Dalling said. “They are making our difficult lives even more difficult.”
In 2014, the Canadian government announced a support program – including a lump-sum payment, annual pensions and access to a health fund – to help thalidomide survivors “receive the care they need to live the rest of their lives with dignity.”
As of December, 133 survivors receive support through the program, with roughly half at the highest level of disability. The additional funds have improved the lives of survivors over all, according to a five-year review of the program completed in March.
But the report found that many survivors, now in their 60s, found accessing money from the medical fund stressful and “degrading” – even as age and worsening health issues were increasing care needs. In a 2023 survey by the thalidomide survivor association, 81 per cent of respondents experiencing financial stress said it was directly related to dealing with reimbursement requests.
Meanwhile, nearly three dozen Canadians potentially affected by thalidomide have been waiting – in some cases, for years – for a final decision on whether they qualify for the program, according to David Rosenfeld, the Toronto lawyer representing them.
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The federal support program was the result of a long fight for recognition by survivors, who had struggled mostly on their own for 50 years, often in poverty and in pain, as a result of the Canadian government’s decision in the early 1960s to approve thalidomide as a morning-sickness medication, despite a lack of safety evidence.
Canada compounded the tragedy by failing to ban the drug for three months after the link with birth defects became known; other countries, including Britain, acted immediately. The United States never approved it at all, because of safety concerns.
Around the world, 10,000 babies – including more than 100 in Canada – were born with severe birth defects, such as missing arms or legs, misshapen hands and damaged organs.
For decades, in Britain, the drug company that supplied thalidomide has paid into a compensation fund that makes annual payments to survivors, while the health grant is covered by the government.
In Canada, the support program, including the $250,000 lump sum, was paid entirely by the government – but it didn’t begin until 2015, when survivors were in their 50s. At the time, many survivors, including Ms. Dalling, were angry that the program’s total package was significantly lower than what the survivors association task force had recommended.
“It was another slap in the face by the federal government,” she said. “And I have to bring it back to the fact that all [this] happened because of their negligence.”
Ms. Dalling is now one of six survivors named in a Charter claim against Ottawa, seeking additional compensation and more autonomy for survivors to use the funds as they choose.
In recent years, the costs paid to the private company overseeing the program have increased dramatically – while survivors say giving them more self-determination over the funds could reduce those costs.
Karine LeBlanc, a Health Canada spokesperson, said operating costs have increased because court decisions in recent years widened the number of Canadians who could apply for support, and also allowed for more appeals if they were denied.
But that application process often takes between three and six years, an “unreasonable delay,” said Mr. Rosenfeld, a partner at the firm Koskie Minsky. Among his clients, Mr. Rosenfeld said, 11 have been approved, approximately 35 are still in process and roughly 60 have been denied.
Barb Blair was one of those 60 rejected applicants. Ms. Blair, 65, currently living on disability in northern British Columbia, said she was told by her mother when she was seven years old that her misshapen hands were caused by thalidomide.
Like many others, her case is complicated because her mother has since died, along with other family members who might have firsthand knowledge, and there’s no documented evidence of a prescription. A genetic test can potentially rule out some other reasons for birth defects but not confirm thalidomide as the cause.
Growing up, Ms. Blair said, thalidomide “was something never to be discussed,” because her mom was given the drug by an aunt who worked as a nurse in Perth, Ont.
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But when Ms. Blair went through the years-long application process – providing doctor’s reports, passing a probability test using an algorithm developed in Europe – her application was denied by a multidisciplinary medical committee, a decision she is still appealing.
“There are only a finite number of us. You have to err on the side of compassion,” Ms. Blair said, tearfully. Her health is declining and her hands are weakening. “I will keep fighting this until I die,” she said.
Ms. LeBlanc said that “each applicant is assessed carefully and fairly,” following best international practices, and that decisions take longer and costs have increased because there are more cases being reviewed.
To access the medical fund, survivors have had to get witness signatures and agree to quality control visits – measures that Ms. LeBlanc said exist as a “safeguard” to protect survivors from fraud, and are “particularly valuable for survivors who self-identify as vulnerable.”
But Ms. Dalling, who worked part-time for the government before retiring, said that argument perpetuates a pattern of survivors being treated as if they are unable to make their own decisions. “I can balance a chequebook. I don’t need them telling me what I need or don’t need.”
In British Columbia, another court case plaintiff, Alexandra Niblock, who was born with two severely shortened arms and only five usable fingers, said filling out the paperwork needed to apply for medical funds is an exhausting and humiliating process. Survivors, she said, are forced to repeatedly share their medical histories with strangers “who have no understanding of what it is to live the way we do.”
One solution, some survivors suggest, would be to have the government divide the medical fund into annual amounts paid to survivors, based on disability, to be used at their discretion and, hopefully, saving the management fees – as is done in Britain.
Last year, the Extraordinary Medical Assistance Fund was changed so that every survivor received $4,000, regardless of disability, to spend as they choose. The money that remains in the fund, Ms. LeBlanc explained, is meant to cover “extraordinary costs,” such as specialized surgeries not covered by the provinces, home renovations and accessible vehicle upgrades.
But people with severe disabilities will have much higher daily costs of care than those with less severe thalidomide impairments. Survivors such as Ms. Dalling have argued there is not enough money in the $1-million-a-year fund to provide a fair annual health grant to those who have the highest needs now – and in the future.