The story of thalidomide may be well known in Canada, but the drug's survivors say they themselves have been largely forgotten. Now, as "thalidomide babies" move through their 50s and their health worsens, they are asking again for financial help.
Mercedes Benegbi, a thalidomide survivor and executive director of the Thalidomide Victims Association of Canada, says the effects of thalidomide linger to this day, as the spines and joints of survivors deteriorate with age.
"It was impossible to predict at the time when we were born, but our health has deteriorated so much that we need assistance 24 hours a day," she told CTV's Canada AM Monday from Ottawa.
Thalidomide was considered a wonder drug when it was licensed for prescription in Canada in April 1961 as a morning sickness drug. But as it became clear that it was causing devastating and often fatal birth defects, the drug was yanked.
Many of the babies born to mothers who took thalidomide were born deaf, blind or with phocomelia – malformed, flipper-like limbs.
Benegbi herself was born without arms and has stunted growth. She said she now rates her daily pain at a "9" on a scale of 1 to 10 and says she's no longer able to walk five minutes without pain.
"Everything I was able to do when I was young, I’m not able to do anymore and I need assistance all day long from the morning through the night," she said.
In 1991, the Canadian-born victims of thalidomide were awarded “compassionate lump-sum financial assistance grants.” The lump-sum payment was offered "ex gratia," meaning Ottawa recognized no legal liability in offering the money.
The payout amounted to $8.5 million, which worked out to about $52,000 to $82,000 per victim, depending on their degree of disability. But Benegbi says for victims now living on their own with disabilities, that money has not been nearly enough.
"It was a drop in the bucket and now they must repair this tragic malpractice," she said of the federal government.
The Thalidomide Victims Association of Canada says the remaining 95 or so thalidomide survivors are not seeking compensation; they simply want financial support to help with their health and mobility problems.
They say they sent a proposal for a “survivor fund” to cover their growing medical and care needs to Health Minister Rona Ambrose back in September, but they have not heard anyhing back.
"I don't understand why our government is not answering us," Benegbi said. "We sent a video, we sent all our information. We want the government to make a public statement and to engage in a conversation that they want to right the wrong with us."
Benegbi's group notes that in Britain, nearly 470 thalidomide survivors now receive annual payments of about $88,000 each per year, from both the British government and the thalidomide drug distributor.
In Germany, where the drug was first marketed, the federal government gives its 2,700 survivors pensions that total up to $110,000 a year.
Benegbi says her group would like to see similar pensions offered to victims here in Canada, to help them with what she says are their "extraordinary" health needs.
"We want the Canadian government to assume properly its responsibility and to ensure that we can live the rest our lives with dignity," she said.
