Nova Scotia

Thalidomide victim says lump-sum payment not enough

A Nova Scotia thalidomide survivor says a lump-sum payment and an "ambiguous" $168-million assistance package from the federal government will not cover all necessary medical expenses.

'[Government's] lack of due diligence ... is what put us here in the first place,' says thalidomide survivor

An emotional Mercedes Benegbi, who is a thalidomide survivor and executive director of the Thalidomide Victims Association of Canada, celebrates outside the House of Commons on Parliament Hill, after the House of Commons voted to compensate survivors of thalidomide, in Ottawa on Monday, December 1, 2014. (Fred Chartrand/Canadian Press)

A Nova Scotia thalidomide survivor says a lump-sum payment and an "ambiguous" assistance package worth up to $168-million from the federal government will not cover all necessary expenses.

On Friday, Health Minister Rona Ambrose announced the assistance will be available for all who've suffered health effects from the drug.

Thalidomide victim Tony Melendez of Dallas is shown at age four while attending therapy. He's one of an estimated 10,000 Thalidomide victims from around the world. (The Associated Press)

The thalidomide story is still remembered as one of the most horrific health scandals in Canadian history. In the early 1960s, thousands of pregnant women worldwide took the drug to combat morning sickness and insomnia. 

But thalidomide caused severe birth defects and stillborn deaths.

A payment of $125,000 per person was also announced.

However, that lump sum is not as much as survivors had hoped for when parliament voted in favour of the settlement in December.     

Lee Ann Dalling, 52, came into this world with severe birth defects after her mother took the approved drug.

Funding announced late Friday afternoon

"It was voted upon to provide full support. We assumed that they were going to honour their promise and provide just that: full support," said Dalling, who lives in New Glasgow, N.S.

"Instead, they came back at a 4 o'clock announcement on a Friday afternoon with a half-hour notice to the Thalidomide Victims Association to tell them this is what they had finalized after making us wait over three months ... and it just came as a total blind side."

And Dalling worries the possible $168-million in assistance funding will be difficult for the 95 surviving thalidomiders to access.

"Granted there will be some things that people may be able to access that fund for — like whether they needed a special bed, whether they needed a special kind of toilet, whether they needed hand controls for their vehicle or whatever," she said.

"But I basically see it as a really ambiguous pot of money that will, no doubt, be an excruciatingly long bureaucratic process to even get a nickel of it."

Dalling said the late Friday afternoon release "caught us all off guard."

"What we asked for, basically, wasn't just something we came up with. There was precedents with this and when it was presented, it was agreed at the time that it was not a negotiation," she said.

"This was the proposal. It received full parliamentary support — which is almost unheard of — and so when they came back late on a Friday afternoon, announcements like that are usually given when you want to hide something, not highlight something."

'A lifetime of suffering'

In many countries victims received lifetime monthly allowances as compensation. But in Canada, survivors, including Dalling, were forced to settle for a lump sum of $50,000 to $90,000 each in the 1990s.

Dalling worries that the lack of clarity on how to access the additional $168-million in funding will result in delayed compensation for victims.

"Many are living below the poverty line. In addition to this ambiguous fund that [Ambrose] announced that is supposed to be administered by a third party who will probably draw more off it for administering it than any of us will ever see. Basically it's something that is so unknown, I don't see us ever able to make good use of it," she said.

"Let's not forget, [the government's] lack of due diligence in making sure the drug was safe is what put us here in the first place."

Daily life for many is full of pain and suffering, Dalling went on to say.

"It's been a lifetime of challenges, a lifetime of suffering, a lifetime of ridicule. Not to mention the parents, especially the mothers, what they went through with the guilt. Every story is a sad one and every one is different," she said.

Comments

To encourage thoughtful and respectful conversations, first and last names will appear with each submission to CBC/Radio-Canada's online communities (except in children and youth-oriented communities). Pseudonyms will no longer be permitted.

By submitting a comment, you accept that CBC has the right to reproduce and publish that comment in whole or in part, in any manner CBC chooses. Please note that CBC does not endorse the opinions expressed in comments. Comments on this story are moderated according to our Submission Guidelines. Comments are welcome while open. We reserve the right to close comments at any time.

Become a CBC Member

Join the conversation  Create account

Already have an account?

now