Victims of the drug thalidomide emerged from lengthy talks with the Canadian government Monday night saying they've received assurances a $180-million financial package designed to support them for the rest of their lives will be "simple and easy to access," will help cover a broad range of living expenses – and will be tax-free.
Ottawa is now promising survivors will receive annual payments from this pool of funding and, in a significant move for many, that it will cover a wide variety of their expenses and not just medical needs.
The Canadian government originally announced the $180-million on Friday including a $125,000 tax-free lump-sum payment for all victims.
The initial March 6 unveiling came with little advance notice and insufficient detail about how continuing support would be administered – sowing fears among thalidomide survivors about how hard it might be to gain access to the money. The $168-million that will remain to be disbursed after lump-sum payments was thought to be only for medical expenses.
During nine hours of meetings Monday, the Thalidomide Victims Association of Canada and the federal government hammered out key principles that will govern the disbursement of the money.
"At the core of these principles is the guarantee that all survivors will receive the financial support they need to live the rest of their lives with dignity and that all federal government payments to survivors will be tax free," the group representing victims said.
Advocates for thalidomide survivors said Ottawa has now more clearly defined how the funding will be doled out, saying the $168-million that remains after lump-sum payments will be available for a variety of living expenses, including personal support workers – and not just medical needs.
"It has been confirmed that it won't be exclusively medical needs," said Mercédes Benegbi, head of the task force representing thalidomide victims.
"I am reassured that Health Canada is considering a broad range of needs of thalidomiders and they are open to developing this program with the collaboration of [our] task force."
Health Minister Rona Ambrose's office said the program will "recognize the broad range of support needs that survivors face in their everyday lives as a result of their disability."
Ms. Benegbi singled out Ms. Ambrose's role Monday, saying it is "thanks to her leadership that we clarified this important matter."
The federal government also announced Monday night that some of the $168-million will be set aside for a separate medical assistance fund to help cover the costs of any "extraordinary medical procedures required to treat thalidomide injuries."
As announced last week, the long-term support funding will be administered and delivered by an independent administrator that has yet to be chosen.
Canada's thalidomide survivors were born in the early 1960s with birth defects such as flipper-like hands, stunted legs, deafness and internal-organ damage. Their mothers, while pregnant, had been prescribed the federally approved drug for symptoms such as morning sickness. The victims are now in their early 50s, many are now unable to work as the costs of living and daily care are increasing rapidly.
The financial package was announced about three months after the Commons voted unanimously to provide "full support" to those suffering from the effects of the drug. The December Commons vote followed a special report in The Globe and Mail that chronicled the growing challenge facing survivors. Thalidomide victims had originally asked Ottawa to provide twice as much – $250,000 – as the government announced for a lump-sum payment, as well as an annual pension, allowing them to decide for themselves how to manage their health and financial needs.
Advocates for the survivors said Monday night that the way Canadian support is now defined – tax free and open to funding a broad range of expenses that victims incur – makes the assistance more closely resemble what those in other countries such as the U.K. and Germany have received.
Ms. Benegbi said a lot of work still remains, including more specific criteria on what will be covered.
"The task force remains committed to ensuring that the developments of the last few days turn into a reality for Canada's survivors."