Some suspected thalidomide survivors are accusing the federal government of using red tape to block them from getting the compensation they say they deserve.
Bernadette Brousseau is one of dozens of Canadians born with severe deformities in the early 1960s who say they are thalidomide survivors.
The drug thalidomide was developed and sold internationally in the late 1950s and early 1960s. It was mainly marketed to prevent morning sickness in pregnant women. But it led to a wave of birth defects in Europe, Australia, Canada and Japan. Thalidomide was not approved for use in pregnant women in the U.S.
A recent report found the company that made the drug, German firm Gruenenthal, undertook a deliberate disinformation campaign when experts first noticed a potential link to birth defects. That report suggests authorities had trouble clarifying the effects of thalidomide, even after it was pulled from the shelves.
Brousseau believes her family was one of the ones who fell through the cracks created by that confusion.
She grew up in the tiny northern Alberta community of St. Paul. Some of her hospital records recovered from a metropolitan hospital when she was a baby contain the diagnosis “phocomelia,” a rare congenital disorder involving malformation of limbs.
Here’s what Brosseau told CBC News in 2015:
‘Doctors didn’t get rid of things that quick’
Phocomelia’s most common cause is cited as the use of thalidomide. But Brousseau had not even heard of the word until she was in high school, and discovered the short arms and legs she had lived with were common symptoms.
“There were still meds out in the community at that time,” she said of the time when her mother was pregnant. “Because you’re in a small community, doctors don’t get rid of things that quick.”
In the spring of 2015, the Canadian government announced yearly and lump-sum payments for survivors, but they require proof: a receipt of a settlement from the drug company; medical or pharmacy records showing her mother used thalidomide; or her name on a government registry of thalidomide victims.
Brousseau, 52, could satisfy none of those conditions. She said most of her medical records were destroyed by fire at the St. Vincent community clinic where she was born. Her mother and father are dead, as is the doctor her treated her mother.
‘I want to be heard’
Her application for the last round of compensation funding has now been rejected.
“Disappointment, rejection,” she said of the decision. “I want to be heard. It’s just frustrating that they are not listening.”
To Brousseau, it’s not really about the money, but rather recognition of why she has had to live with disabilities her whole life. She is proud that she learned to drive, has lived independently throughout her adult life and worked full-time as disability support worker for 22 years.
But now, as severe arthritis leaves her unable to work and she has undergone two knee replacements, having financial assistance would help.
“I just want to be recognized. It’s not my fault I was born this way,” she said.
Political pressure to change criteria
The previous Conservative government designated the criteria of proof required for survivors to receive compensation. There has been steady political pressure to change those criteria after the Liberals were elected last year.
A group of fellow “outsider” survivors like Brousseau went to Ottawa last week to request meetings with the health minister. Their requests were denied.
In an email, a representative from Health Canada said its response is appropriate.
“Each year, a certain number of children are born with spontaneous or otherwise unaccountable malformations similar to those caused by thalidomide,” the statement reads.
“The federal government is not aware of any definitive diagnostic test to determine whether an individual is a thalidomide survivor, and therefore considers the Thalidomide Survivors Contribution Program criteria appropriate for determining eligibility under the program.”
Previous requests by CBC for an interview with the health minister on this issue were denied.
Health Canada said the total number of confirmed eligible Canadian thalidomide survivors is now 122.
This includes 25 new survivors who were assessed in the last round of compensation applications as having met the eligibility criteria.