They are missing arms and legs, have deformed eyes and hearts and endure constant pain, lifelong symptoms of a monstrous "miracle drug."
Thalidomiders have learned to live with those disabilities. What they cannot endure is more injustice: the poisonous silence in response to their pleas for help.
People of a certain age all remember the story of thalidomide: The drug was prescribed to expectant mothers suffering from morning sickness or insomnia. It was hailed as safe, but caused gross deformities.
No one is really sure how much harm thalidomide caused. They didn't count the miscarriages during the period when it was sold, 1959 to 1962, but there were thousands.
At the time, it was also common to whisk away children with severe disabilities to institutional care, where it's estimated that about half of thalidomide babies died in the first year of life.
What we do know is the lucky ones – those who "only" were missing limbs and organs, and who have survived more than half a century – now number about 6,000 worldwide, including 95 in Canada.
That small group, gathered under the banner Thalidomide Victims Association of Canada, has launched a campaign dubbed "Right The Wrong." They've approached the federal government with a proposal to provide survivors with annual support of roughly $100,000 annually per person. They're not looking for luxurious lifestyles, just out-of-poverty income and money for home care and other support.
Federal Health Minister Rona Ambrose has not responded. Instead, she had her communications people extoll the virtues of today's drug safety system. Talk about adding insult to injury.
Let's be clear: We have the drug safety laws we do today – which are passable, by the way, not exceptional – because of the thalidomide fiasco.
The drug, first worked on by the Nazis as an antidote for nerve gas during the Second World War, was marketed after the war by the German company Gruenenthal as a "safe" anti-nausea drug, despite not having been tested on pregnant women.
Some of the first victims were Canadian: At least 15 spouses of Canadian soldiers serving in Germany had severely deformed babies between 1959 and 1961, but the cases were hushed up because wives were not supposed to accompany soldier husbands overseas at the time.
The first stories pointing to thalidomide as the cause of birth defects were published in 1960, but Health Canada nonetheless approved the drug, and it was sold in this country from April, 1961 to May, 1962. In the United States, by contrast, thalidomide was never approved, because a single official, Dr. Frances Kelsey, recognized that the testing had been inadequate.
Over the years, there have been a number of lawsuits and compensation plans. About half the thalidomide survivors worldwide received compensation from Gruenenthal. In Canada, the drug's distributor, Richardson-Merrell Inc. struck out-of-court settlements, mostly modest five-figure deals.
Then, in 1990, after a decade-long campaign by the War Amps of Canada, the federal government announced a $7.5-million compensation plan, with one-time payouts ranging from $52,000 to $82,000.
Today, the survivors want that deal bolstered, and they are right to do so. Countries such as Germany and Britain have compensation plans paying out $88,000 to $110,000 a year.
In Ottawa's silent refusal to negotiate, what's implied is that thalidomide victims were already compensated and reopening the deal would set a bad precedent.
The reality is that in 1990, a desperate group was presented with a take-it-or-leave-it offer. As with victims of tainted blood, who had received a paltry deal themselves a few years earlier, there was a cynical assumption that victims would not live very long so they didn't need much money and they would be too sick and ashamed to go public.
When the breadth of the tainted-blood scandal was revealed and it became clear that victims would live longer, their deal was bolstered – by billions of dollars.
Today, the remaining thalidomiders are in their 50s. Their disabilities are catching up with them, leaving many unable to work or function independently.
When you've done something grievously wrong, as the federal government did with its approval of thalidomide, there are four things you must do to right the wrong:
- Admit the error promptly.
- Fix the problem swiftly.
- Apologize sincerely.
- Make amends.
Ottawa has done none of these things – none.
There is no excuse for not apologizing and compensating the surviving victims of thalidomide. Now that we have had our eyes opened to their plight, we need to open our hearts.
The print and earlier online versions of this column included an incorrect spelling of the Canadian-born doctor who would not approve thalidomide in the United States. She is Dr. Frances Kelsey, not Kelley as published.
André Picard