Thanks to a 2015 settlement to compensate the victims of thalidomide, Johanne Hébert was able to get a custom-built walker.Selena Phillips-Boyle/The Globe and Mail
Susan Wagner-White splurged on a high-end Japanese bidet.
Gavin Bamber invested in a chairlift to help him get up the stairs.
Nelson Emond made a down payment on a home without stairs that could accommodate his wheelchair.
Johanne Hébert opted for a custom-built walker that allowed her to brake with her chin.
Alie Vachon now purchases precooked meals to avoid the gymnastics required for food preparation.
On the weekend, The Globe and Mail published a remarkable story highlighting how the lives of the victims of thalidomide have changed in the 10 years since they won a hard-fought battle for compensation.
The anniversary is a bittersweet one.
It is a reminder, once again, of the toll of one of the worst drug disasters in Canadian history.
From the archives: How thalidomide victims fought Ottawa to ease their pain
In the early 1960s, thousands of pregnant women were prescribed thalidomide to treat morning sickness and insomnia. Some of them had children with severe birth defects, like missing and deformed limbs, and many more suffered miscarriages and stillbirths. Many of the children died within the first year of life.
The drug was approved with little safety data and, after it became clear how dangerous it was, Canada was slow to pull it from the market.
Born with severe disabilities, the children of thalidomide – who number 100-plus in Canada, and 10,000 worldwide – lived challenging lives.
There is no excuse for how badly we’ve treated them. Prior to the landmark 2015 settlement, the average income of surviving victims of thalidomide was a paltry $14,000.
The Canadian Thalidomide Survivors Support Program provided the horrific drug’s victims with a $125,000 lump sum (later doubled to $250,000), an annual tax-free pension of up to $100,000 depending on level of disability, and access to an Extraordinary Medical Assistance Fund to cover unusual costs. (For example, one person needed $70,000 in dental work after a lifetime of using her teeth instead of hands to carry out daily activities.)
The money has bought the small community of thalidomide survivors some freedom and dignity. But they are now in their 60s, and decades of living with serious health issues and in poverty have taken their toll.
For many, the compensation package is no longer enough. There is frustration, too, with the onerous bureaucracy involved in making a claim, or in requesting reimbursement from the medical fund.
Many thalidomide survivors find accessing medical fund stressful, ‘degrading,’ report finds
All the red tape is not owing to ill will though. There is some complexity here.
Cases of the severely disabled thalidomiders are fairly easily adjudicated because they have obvious deformities: Absent or stunted arms, missing legs and deformed organs. For people of a certain age, they are easily identifiable.
But it is difficult to find, let alone access, medical records from the early 1960s, so it’s hard to know if a woman was prescribed or took thalidomide. When the initial compensation package was announced, there were 92 survivors identified as eligible. That number has now climbed to 133.
There are also other causes of birth defects, so some claimants have been asked to undergo genetic testing. That can feel humiliating. But we should expect some due diligence from government, and the company it has contracted to administer the program.
The settlement, let’s not forget, was achieved in large part owing to the power of journalism. There are few stories that have been as impactful as those written by Globe and Mail reporter Ingrid Peritz back in 2014.
She published a bombshell story on the plight of thalidomiders on Nov. 22, 2014, and a mere 10 days later, Parliament unanimously approved a compensation package after half a century of denial and dithering.
Ms. Peritz and her colleague Erin Anderssen have returned with an update 10 years later to remind us that the “Right The Wrong” campaign is not quite over.
What is important, in the end, is taking proper care of the most severely impacted survivors.
We should also celebrate their resilience and grit. Try to imagine a lifetime of getting dressed, using the bathroom, shopping, preparing a meal, writing an exam, or taking a bath, if you don’t have arms, or fingers, or legs.
The surviving thalidomiders have MacGyvered their way through life, often unsupported, and in isolation.
All they’ve wanted all along is a modicum of justice, and dignity, and that’s been slow to come.
The settlement they negotiated was a decent one but, as new challenges arise as this group ages, it can and should be improved upon.
No amount of money makes up for their suffering, but it can ease the pain.