Evaluation of the Canadian Thalidomide Survivors Support Program – 2019 to 2024
Final Report – Executive Summary and Management Response and Action Plan
March 2025
Prepared by the Office of Audit and Evaluation
Health Canada and Public Health Agency of Canada
Note: The complete evaluation report is available upon request. Please send an email to oae-bae@phac-aspc.gc.ca.
On this page
List of acronyms
- CTSSP
- Canadian Thalidomide Survivors Support Program
- EMAF
- Extraordinary Medical Assistance Fund
- TVAC
- Thalidomide Victims Association of Canada
Executive summary
Background and evaluation scope
The Canadian Thalidomide Survivors Support Program (CTSSP) was established to provide financial support to thalidomide survivors and help them age with dignity. The evaluation, covering fiscal years 2019-2020 to 2023-2024, assessed the Program's continued relevance, effectiveness, and efficiency. The methodology included document and performance data reviews, interviews with confirmed thalidomide survivors, and a comparative analysis of international support programs.
Findings
Evolving needs of thalidomide survivors
Thalidomide survivors have reported significant health declines over the past five years. Factors that have contributed to this deterioration include:
- increased stress on the body from performing daily tasks;
- overuse of body parts in unintended ways;
- pre-existing and new medical conditions;
- mental stress; and
- financial strain.
COVID-19 exacerbated these health issues due to interrupted access to health care and community supports. The rising cost of living and inflation are also significant concerns for thalidomide survivors. The types of supports that would be beneficial for survivors as they age include health, medical, and financial supports to maintain their independence. Health supports focus on overall well-being, such as assistance with daily tasks, and medical supports refers to specialized treatments. The Program is contributing to meeting these needs.
Program effectiveness
The CTSSP has been effective in helping thalidomide survivors improve their access to private care and treatments, and age with dignity. Due to annual payments and access to the Extraordinary Medical Assistance Fund (EMAF), many survivors reported improved access to care and reduced financial stress. The Program's contribution to aging with dignity is evident, with most survivors finding it helpful, though some still faced challenges with accessing the EMAF through Epiq Class Action Services Canada (also known as Epiq), the transfer payment recipient.
Program resources
There were delays in the Program's implementation specific to the CTSSP application process, which launched in June 2019. Although this led to an unexpended balance in 2019-2020 and 2020-2021 by the transfer payment recipient, unused funds from the previous fiscal year were fully spent on CTSSP in April the year after. The EMAF was underspent each year for several reasons, such as low number of applications, fewer new confirmed survivors relative to the budgeted amount, and lack of awareness among thalidomide survivors about eligible expenses and the application process. In the past, several thalidomide survivors reported challenges in accessing and applying to the EMAF to Epiq, which then prompted changes to make EMAF more inclusive and easier to navigate over the years. On the other hand, the transfer payment recipient's administrative costs were significantly higher than forecasted primarily due to changes to the Program brought about as a result of litigation. Despite administrative challenges, payments issuance and health reassessments completion met service standards. The Program continues to strive for a balance between providing flexibility and ensuring proper fund stewardship.
Recommendations
Recommendation 1: Re-examine and clarify the purpose of the Extraordinary Medical Assistance Fund (EMAF).
The EMAF has expanded over the years to cover necessary expenses but its purpose has not been reassessed, leading to a lack of understanding about the Fund especially in terms of defining what qualifies as “extraordinary.” Some interviewees did not understand the EMAF, indicating a need for improved communication. A clear understanding of the EMAF's purpose would better support survivors to access the care and services to help them age with dignity. Despite being underused, recent changes, such as more comprehensive guidance and an annual lump sum payment, are expected to improve Fund usage and address some challenges. Additionally, being able to measure the effectiveness of the EMAF for accessing private care and treatments is important to ensure that the Fund is fulfilling its intended purpose.
Recommendation 2: Engage with Epiq, the transfer payment recipient, regarding enhanced sensitivity training for staff to communicate more effectively with, and serve, thalidomide survivors.
While confirmed survivors were generally satisfied with the telephone and e-mail communication provided by the transfer payment recipient, as per survey results, only about half of the interviewed survivors were satisfied with the program administration process. Many Thalidomide Victims Association of Canada (TVAC) survey respondents reported stress when dealing with the transfer payment recipient for claim reimbursements, describing the process as degrading. Sensitivity training for staff and having a consistent contact may help improve service, build relationships, and facilitate trust.
Management Response and Action Plan
Recommendation 1
Re-examine and clarify the purpose of the Extraordinary Medical Assistance Fund (EMAF).
Management response
Management agrees with the recommendation.
| Action Plan | Deliverables | Expected Completion Date | Accountability | Resources |
|---|---|---|---|---|
|
1.1 Engage Epiq and TVAC to:
|
Health Canada's records of decision (meetings with stakeholders) confirming the results of the assessment and communications plan | September 30, 2025 | DG, Programs, Planning and Horizontal Functions, Health Policy Branch | Existing resources |
| Health Canada's program web page to be updated | March 31, 2026 | DG, Programs, Planning and Horizontal Functions, Health Policy Branch | Existing resources | |
| 1.2 Engage Epiq to revise questions on the CTSSP annual survey, specific to access to care and aging with dignity, to better align with the Program's performance measurement strategy. | Health Canada's feedback and concurrence on revised Annual Outreach Survey to survivors for fiscal year 2024-2025 | February 28, 2025 | DG, Programs, Planning and Horizontal Functions, Health Policy Branch | Existing resources |
Recommendation 2
Engage with Epiq, the transfer payment recipient, regarding enhanced sensitivity training for staff to communicate more effectively with, and serve, thalidomide survivors.
Management response
Management agrees with the recommendation.
It should be noted that Epiq already provides sensitivity training as part of its curriculum for new and existing staff involved in the CTSSP. The training in place can be assessed for relevance and updated to better equip Epiq's staff to communicate more effectively with, and serve, survivors.
| Action Plan | Deliverables | Expected Completion Date | Accountability | Resources |
|---|---|---|---|---|
|
2.1 Consistent with Appendix A of the funding agreement, engage Epiq and recommend they:
|
Record of communication with Epiq summarizing Health Canada's recommendations | March 31, 2025 | DG, Programs, Planning and Horizontal Functions, Health Policy Branch | Existing resources |
| 2.2 Monitor implementation and impact of Epiq's revised processes for effective communication with survivors. | Review and approval of 2025-2026 Annual Plan | May 31, 2025 | DG, Programs, Planning and Horizontal Functions, Health Policy Branch | Existing resources |
| Review and approval of progress reports for 2025-2026 | May 31, 2026 | DG, Programs, Planning and Horizontal Functions, Health Policy Branch | Existing resources |