'I can't go down without a fight': B.C. woman denied recognition as thalidomide survivor
Joanne Jenkins says government should compensate her for allowing harmful morning sickness drug onto market
A B.C. teacher is fighting to be recognized as a thalidomide survivor, even though the federal government says she can't prove her deformed hands are the result of her mother taking the drug during pregnancy.
"I was born missing fingers," Joanne Jenkins said, rubbing the stubs where doctors tried to surgically create digits.
"All my life, I've been teased — called 'funny fingers,' chased around the school. Now my government is rejecting me, too."
Jenkins says she's certain her birth mother was taking the drug to control nausea, but she doesn't have the medical records to prove it to the federal government and qualify for compensation.
"The government let it [thalidomide] into Canada," she said. "I want them to make it right."
Thalidomide was first provided to pregnant Canadian women suffering from morning sickness and insomnia in 1959.
The drug caused untold miscarriages, killed an estimated 80,000 babies worldwide and left approximately 20,000 others with severe birth defects.
It was finally pulled from the Canadian market in 1962, three months after it was banned in England and Germany.
In March of 2015, the Conservative government announced a compensation package for 92 Canadian survivors still struggling with severe disabilities.
The package includes a one-time payment of $125,000 and a yearly pension ranging from $25,000 to $100,000, depending on the severity of their physical challenges.
The compensation doesn't extend to a small group of peoplewith damaged internal organs and limb deformities who can't meet what Jenkins calls "impossible" standards to qualify for compensation.
Bar too high
The main stumbling block for Jenkins and about two dozen others is they don't have medical records to prove their mothers took thalidomide.
"There are no doctor records [from 1960]," Jenkins said. "Anybody today that tries to find records from even ten years ago, you are lucky to get anything."
She says her birth mother's doctor died "long ago."
"They're asking me to prove the impossible."
Her story is further complicated by the fact she was given up for adoption, but no one wanted to take in a child "without ten perfect fingers and toes," she says.
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She lived in an Alberta orphanage for almost three years and underwent multiple surgeries to try to make her hands more functional, until a family adopted her and moved her to Texas.
She had no idea a movement to provide more significant compensation to thalidomide survivors was growing in Canada until she moved back in 1999.
When Ottawa announced the new compensation program last year, Jenkins was elated. But that excitement was short-lived because she didn't have the necessary medical paper trail to qualify.
The fight to provide proof
Refusing to be denied, she asked her birth mother to submit a letter stating she remembered being given a drug for morning sickness, but couldn't remember its name.
Her birth mother also went to her current physician, who signed an affidavit saying she told him she was given a drug to curb pregnancy nausea in 1960.
Finally, Jenkins arranged for clinical geneticist Gudrun Aubertin at Victoria General Hospital to carefully assess her hands.
Aubertin determined that Jenkins' deformed hands were in all likelihood the result of being subjected to thalidomide in the womb.
"The history fits," Aubertin said. "The timing of the pregnancy. The fact that there was a history of anti-nausea medication."
"Common sense would dictate that this person is deserving the compensation."
Common sense would dictate that this person is deserving the compensation.- Gudrun Aubertin , geneticist
But the gatekeeper for deciding who gets compensated — an independent claims management firm called Crawford & Company, acting for Health Canada — wasn't persuaded.
"I'm frustrated," Aubertin said. "I'm disappointed in the system not listening to my input, and taking her request seriously."
Political pressure to change standards
NDP MP Murray Rankin has been pushing to change the criteria.
"I'm all in favour of criteria," Rankin said. "I think it's important that the government, and our taxpayers know that the people who claim to be eligible are indeed victims of thalidomide."
But Rankin says it's "not realistic" to get medical records many, many years later.
He points to the example of the U.K., where a charity called The Thalidomide Trust allowed medical experts to do evaluations and determine whether a person was a thalidomide survivor.
"We should have no less in Canada," Rankin said.
"I can't understand why the government would retreat to a paper-based exercise, which is clearly causing hardship to Canadians."
Green Party Leader Elizabeth May also thinks the recommendations of medical experts like leading geneticists should be taken into consideration.
May is the MP for Saanich-Gulf Islands, where Jenkins lives, and has written to federal Health Minister Jane Philpott on Jenkins' behalf to ask that the thalidomide criteria be changed.
Go Public requested an interview with the health minister, but her office declined, pointing to a lawsuit before the courts from another thalidomide survivor seeking compensation.
In a statement, the minister's office said the government is "sympathetic to Canadian thalidomide survivors and is committed to offering support," but only to those who meet the qualifications.
In 1991, the federal government made good on a promise from 1963 to compensate thalidomide victims, offering one-time payments ranging from $52,000 to $82,000.
Jenkins was still living in the U.S. and was unaware of that development.
The settlement proved insufficient as survivors aged and their health deteriorated.
Under the compensation rules announced last year, another 25 Canadians have been confirmed as thalidomide survivors, bringing the total to 122.
On Oct. 25, Jenkins will join about a dozen other members of "Canada's Forgotten Thalidomide Survivors" on Parliament Hill to call for changes to the compensation system.
It's a long trek from Vancouver Island, but Jenkins believes it's worth it.
"I don't want to give up until it's over," she said. "And I still think there's a chance. Just because of what is written, that doesn't mean that's the final word."
She's philosophical about what's been a journey of highs and lows.
"One way or another, I'm going to celebrate that I took one more hardship in my life and I fought it to the end," she said. "And I'm going to come out OK."
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With files from James Roberts