A group of thalidomide survivors says the federal government has fallen short of its promise of financial support and still owes millions.

When Parliament unanimously pledged “full” support of thalidomide survivors in December 2014, the group said that was an endorsement of a victim-sponsored plan to pay each a $250,000 lump sum payment, plus $75,000 to $150,000 a year in support payments.

But the support package, when finalized in May 2015, included a lump-sum payment that was half, and annual support payments anywhere from one-third to two-thirds of the proposed amounts, the group claims.

“That was an insult,” said Fiona Sampson, one of six thalidomide victims who have organized to advocate for change. “The injury to us was a result of the federal government’s negligence. For them to break the promise and then force us to have to fight for the last three years to secure our right to full support has really compounded that insult.”

The group also alleges that during a recent meeting with Kent Hehr, Minister of Sport and Persons with Disabilities, Hehr made insensitive statements and “managed to insult and degrade” four members.

A press release for the group alleges Hehr said, “Lots of people have it bad in Canada — poor people, other disabled people, not just you.”

Further, the group alleges in the release, “When it was made clear to the Minister that thalidomide victims are not looking for new money, just the money promised, and that the life expectancy of thalidomiders is apx. 10-15 years less than the average person, he exclaimed with apparent delight ‘Then you’ve only got maybe 10 years left — that’s good for us as the government.’ ”

A spokesperson for Hehr told the Star that the first quote attributed to Hehr was misconstrued, and that upon hearing that the group members were offended, he called them to apologize on Nov. 17.

Hehr denied making the alleged statement about the survivors having 10 years left, saying in a statement: “I respectfully disagree as I did not say these words nor do I share this sentiment.”

“My heart goes out to thalidomide survivors. I have listened to their stories and I know our government, led by the Minister of Health, is taking the concerns very seriously,” his statement said. “As someone with a disability myself, it was certainly not my intention to offend anyone. While some of my comments were misconstrued, as soon as I learned that my comments were felt to be offensive, I immediately called the organization directly and apologized.”

Thalidomide was a government-approved anti-nausea drug prescribed to pregnant women in the 1950s and 1960s. Children of those mothers were born with a range of problems including missing or malformed limbs, deafness, blindness, disfigurement and other disabilities. There are currently around 120 victims receiving support from the federal government, Health Canada said.

A Health Canada spokesperson said the government is “committed to providing support to confirmed Canadian thalidomide survivors so that they may age with dignity.” Health Canada said it “will consider (Sampson’s) views along with other input on the effectiveness of the program.”Mercedes Benegbi, head of Thalidomide Victims Association of Canada (TVAC), which was instrumental in pressuring the government in 2014, said in a prepared statement that the original support request was a “starting point for discussions” and that the motion in the House of Commons “was not a vote on our specific proposal and more a general commitment to provide support.

“While no amount of financial support will ever be enough to compensate these individuals for the pain and suffering they’ve endured, the program that exists today is making a significant difference in the lives of thalidomide survivors and is allowing them to live with dignity.”

In a statement Tuesday, TVAC said: “These individuals do not speak on behalf of TVAC or the Thalidomide Survivors Taskforce (created by TVAC). Their actions are as individuals and do not reflect the work and achievements of the Thalidomide Survivors Taskforce that successfully obtained the $180M (est.) settlement for thalidomide survivors in Canada.”

It would cost the government about $4.8 million more per year to provide the full amount that was originally requested and, the group says, endorsed by the unanimous Parliamentary motion in 2014.

“They ought to get their pen out and write a cheque for what they originally said they would give,” said victim Lianne Powell, 55, of London, Ont.

Colleen Gallagher of Surrey, B.C., agreed. “We’re not asking for new money, just asking for what was voted for.”

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An email from Health Canada’s Strategic Policy Branch to Sampson in October called the approved support package “voluntary.”

“While parliamentary motions may enjoy the support of the government, they are declarations of opinion or purpose and are not binding,” says the email, which Sampson provided to the Star. “As you may be aware, there was no legal obligation to provide support to thalidomide survivors. However, it was agreed that there was a moral obligation to help meet their changing needs.”

Survivor Lee Ann Dalling said she appreciated TVAC’s efforts to get the current support package, but she is frustrated with the level of annual support payments.

“To only come through with $25,000 a year for some people? That’s just not even respectable,” Dalling said.

The effort to get Ottawa’s attention continued Tuesday with a press conference, where four survivors — including Sampson, Alexandra Niblock of Chilliwack, B.C., Lee Ann Dalling of New Glasgow, N.S., and Mary Ryder of Tillsonburg, Ont. — attended to give testimonials.

Given the shortened average lifespan of a thalidomide survivor, it would cost the government a projected $50 million in total to top up the support package over the next 10 years, Sampson’s group said.

Powell told the Star her message to the government is simple: “There are so few of us . . . . Just take care of us. You can afford it.”

Powell, who is missing her right leg and had to have a deformed kidney removed at 13 months old, said she just got out of hospital after she fell seriously ill following a routine surgery. She said her already-compromised lungs filled with fluid, and it took medical staff one week to stabilize her condition.

Her daughter Madison Powell said: “I’ve spent many nights unable to sleep worrying about how my mother will be cared for as she ages . . . . I felt betrayed by the Canadian government when I heard that the amount was lowered despite a unanimous vote.”

Niblock said the government needs to act now.

“Our financial needs are increasing,” she said. “I struggle very much with the fear that I will be able to remain independent . . . living in a fashion that I determine, not what somebody else determines.”

Correction – December 7, 2017: This article was edited from a previous version to update an incorrect photo caption. Two members of the Thalidomide Survivors Task Group, Alexandra Niblock and Lee Ann Dalling, were misidentified.

With files from The Canadian Press