Victory of the “Right the Wrong” campaign

Story of the “Right the Wrong” Campaign

After decades of struggling with thalidomide-related health challenges, Canada’s thalidomide survivors had defied all the odds. They had adapted by using their teeth and malformed feet, hands and fingers in extraordinary ways to perform daily tasks. But by 2013, 50 years of resiliency had taken its toll. Many survivors were now suffering from nerve damage and painful deterioration of their bodies. Their deteriorating health was amplified by the fact that many survivors relied on their aging parents for financial and physical support – a reality that was pushing many into crisis.

Successive governments had explored options to address the thalidomide catastrophe, but no long-term financial solution had ever been implemented. The only direct funding support from the federal government was in 1992, when Health Canada provided a one-time payment of $65,000 (on average) to each survivor to deal with urgent needs at that time, along with a waiver that removed the options of survivors to sue the government in the future for compensation.

By 2013, it was clear to TVAC that immediate action needed to be taken to address the crisis facing the thalidomide survivor community. Our team contacted several experts in law, communications and government relations to create a pro bono Thalidomide Survivors TaskForce to build the case for long-term financial support.

After many phone calls, emails and passionate discussions, the Thalidomide Survivors TaskForce held its first meeting on May 22, 2013. Members of the TaskForce included:

  • Stephen Raynes, a distinguished American lawyer who specializes in general personal injury, medical malpractice and product liability, whose father, Arthur G. Raynes, represented several Canadian families affected by the thalidomide tragedy in their claims against the manufacturer of the drug in the 1970s and 1980s.
  • Joe Fiorante, a Canadian lawyer specialized in product liability.
  • Christopher Holz, Natalie Dash, and Barry Campbell from Campbell Strategies, a leading government relations firm in Canada.
  • Mercédes Benegbi, Executive Director at TVAC.

Working together, the TaskForce conducted research and laid the foundation for the “Right The Wrong” campaign to draw public attention to the crisis facing Canada’s thalidomide survivors and to obtain long term funding support to help them age with dignity.

While the public campaign was launched in November 2014, the behind the scenes work began much earlier in 2013:

  • In the summer of 2013, the Task Force started working on the video edited by renowned videographer Shirley Ann Claydon “Right the Wrong: The Canadian Thalidomide Survivors Crisis”. This video, compiling testimonies from thalidomide victims and their families, played a crucial role in the “Right the Wrong” campaign by bringing the survivors’ stories directly to decision makers.
  • The TaskForce undertook extensive research of the support programs available to thalidomide survivors around the world, and a review of Canadian-based programs to support survivors from other tragedies, to help build the case for government support in Canada.
  • The Task Force commissioned a confidential Life Care report from April Belbeck, an expert in rehabilitation and costing, on the financial support required to support some of most severely affected survivors.

The “Right The Wrong” campaign was launched with a multi-page spread in the Globe and Mail detailing the ongoing struggles of Canada’s thalidomide survivors. Editor-in-chief David Walmsley, along with reporter Ingrid Peritz and columnist Andre Picard, shone a light on the crisis and their dedication to the story was an invaluable resource to the campaign.

Dennis Choquette (Globe and Mail), Ted Griffith (Campbell Strategies), Mercédes Benegbi (ACVT/TVAC), David Walmsley (Globe and Mail) & Natalie Dash (Campbell Strategies)
Ted Griffith (Campbell Strategies), Dennis Choquette (Globe and Mail), Mercédes Benegbi (TVAC), David Walmsley (Globe and Mail ) & Natalie Dash (Campbell Strategies)
Christine Moore (NDP), Murray Rankin (NDP), Mercédes Benegbi (ACVT/TVAC) & Thomas Mulcair (NDP)
Christine Moore (New Democratic Party), Murray Rankin (New Democratic Party), Mercédes Benegbi (TVAC) & Thomas Mulcair (New Democratic Party)

Within days of the campaign launch, the New Democratic Party of Canada (NDP) tabled an Opposition Day motion in the House of Commons in support of the TaskForce’s efforts. Led by Libby Davies and Murray Rankin, Parliament debated for a full day about supporting Canada’s thalidomide survivors. Following this debate, the House of Commons voted unanimously in favour of the following motion on December 1, 2014:

That, in the opinion of the House:

(a) full support should be offered to survivors of thalidomide;

(b) the urgent need to defend the rights and dignity of those affected by thalidomide should be recognized; and

(c) the government should provide support to survivors, in cooperation with  the Thalidomide Survivors Taskforce.

Picture of the front page of the Globe and Mail newspaper titled: Yea : 256 Nay : 0 MPs vote unanimously to provide "full support" to thalidomide survivors
Picture of an article in the Globe and Mail titled "I thought this day would never come" including three pictures of thalidomide survivors and their relatives

While the passage of this motion was a major achievement (and within one week of the campaign being launched), it could not compel the government to spend funds, due to its nature as an Opposition Motion. However the motion did ask the government to work in cooperation with the Taskforce, providing them with the authority to undertake direct discussions with the Minister of Health and department staff.

Numerous meetings and written communications between the TaskForce, Minister Ambrose, Health Canada and Prime Minister Stephen Harper occurred over the next few months to discuss the details of a potential support program. Supported by public pressure from the campaign’s public relations efforts in the media, and in particular the Globe and Mail, the government announced that they would fund a support program for thalidomide survivors on March 6, 2015.

The announcement was the first real public commitment (and evidence) that the government would provide funding support, but several details remained and there was concern by the Taskforce that the pending federal election would delay discussions, or that the issue would be put on the backburner.

Between March and May 2015, the TaskForce worked tirelessly to ensure that the program was as comprehensive and generous as possible to Canadian thalidomide survivors. The discussions were intense, but the efforts were not in vain. On May 22, 2015, Minister Ambrose announced:

  • a lump sum of $125,000 would be provided to each survivor as immediate assistance (tax free),
  • a $180 million (not capped) contribution program would be created to provide annual support payments to thalidomide survivors, as well as for $500,000 annual Emergency Medical Assistance Fund (EMAF)
  • all funding would be tax free and in the case of the annual payments, indexed to inflation
  • any survivor would have the ability to be reassessed at any time
  • the program would be administered by a third party
  • the entire program would be reviewed in 5 years to ensure it was working and that the funding levels were appropriate.

Although no amount of money will ever compensate for the suffering of those affected by the thalidomide tragedy, this announcement was a major win for the campaign. The primary objective of the campaign was to build the political, policy and public case for annual funding support payments so that Canadian thalidomide survivors could live and age with dignity.

Two thalidomide survivors hugging and other very happy people at a press conference in the Parliament of Canada
Picture of Stephen Raynes and Mercedes Benegbi with a thalidomide survivor and her husband. Photo taken in their home kitchen.
Picture of Stephen Raynes and Mercedes Benegbi with a thalidomide survivor and her husband. Photo taken in their home kitchen.

Special Thanks

TVAC would like to extend a warm thank you to all thalidomide survivors and their loved ones who have shared with the Canadian public their personal stories and struggles. We salute their courage, strength and determination.

We would also like to thank Stephen Raynes for his dedication and great generosity to the “Right The Wrong” campaign. It is through his leadership that the campaign was a success.

The Globe and Mail Rewarded for its Coverage of the Campaign

On June 18, 2015, at the Governor General of Canada’s invitation, the Globe and Mail team, along with the Director of TVAC, traveled to Rideau Hall to attend the Michener Award Ceremony, honoring public interest journalism. The Globe and Mail team, including Ingrid Peritz and David Walmsley, received an award for their exemplary coverage of the “Right the Wrong” campaign.

We urge you to check out the Globe and Mail’s excellent series on the tragedy of thalidomide. The articles are listed under the picture below. 

Photo of the Globe and Mail delegation, including David Walmsley and Ingrid Peritz, with Mercedes Benegbi and the Mitchener Award Jury Credit: Sgt Ronald Duchesne, Rideau Hall, OSGG