Post-COVID Implications

Post-COVID Implications for the Health Charity Sector

The impact of the COVID-19 pandemic in the spring of 2020 on Canada’s charitable sector including patient-focused charities was almost immediate and devastating.

Organizations suddenly found themselves severely constrained in their revenue-generating activities while at the same time trying to maintain daily activities while direct person-to-person contact was discouraged or forbidden. Patient-focused charities also found themselves struggling to inform their constituents in the face of a novel coronavirus whose signs and symptoms were soon found to impact several organ systems.

The pandemic also touched many patient groups beyond the coronavirus itself, as a group of 16 health charities outlined in an April report[22] summarized here:

“A key finding of the report is the impact of COVID-19 on Canadians with chronic diseases or an underlying medical condition. For example, Canadians with diseases that affect their ability to breathe, such as lung disease, cystic fibrosis and muscular dystrophy, are at severe health risk, as COVID-19 attacks the lungs. People with Crohn’s disease and diabetes, who rely on medications that suppress their immune system, are vulnerable to contracting COVID-19. People needing to have a cancerous tumour removed are on hold indefinitely, along with those requiring diagnostic services and transplants, as hospitals and critical care services redirect their resources to COVID-19 efforts.”

On the advocacy front, patient advocates and caregivers found themselves excluded from the decision-making processes for hospitals and long-term care homes as these groups battled to “flatten the curve” and prevent widespread transmission of COVID-19. Policies were determined at the highest levels without input from patients or caregivers. (It took a few months for it to be acknowledged that even with COVID-19 the patient perspective remained essential and that family caregivers were also a key part of patient-care teams).

On March 24, an Emergency Coalition of Canadian charities – which included some of Canada’s biggest health charities – wrote to Prime Minister Trudeau and his senior ministers requesting “urgent financial aid and federal action to prevent our organizations from irreparable collapse amid the COVID-19 pandemic, at a time when more and more Canadians and vulnerable families throughout the world will be in desperate need of our services.”

According to the Health Charities Coalition of Canada, “the ongoing COVID-19 crisis has created an unprecedented challenge for Canada’s health care system as well as the organizations that are actively supporting patients affected by cancer, ALS, heart disease, diabetes and many other debilitating diseases and conditions. As a result of efforts to bend the curve and impacts from the volatile economy, these essential health charities are reporting more than a 50% reduction in donation revenues.”

A third of the 414 organizations polled in these surveys estimated they would have to close down within 12 months if their financial situation remained unchanged.

Global surveys[23] of charitable organizations (including those focusing on healthcare) conducted over the summer months by CAF America showed that “while nonprofits worldwide are demonstrating great ingenuity in adapting their operations and programs, over 90% of the responding organizations in each survey … during the past three months report being negatively impacted by the coronavirus global pandemic”. A third of the 414 organizations polled in these surveys estimated they would have to close down within 12 months if their financial situation remained unchanged.

In Canada in April, Prime Minister Trudeau announced measures including a $350 million fund to support the charitable sector serving vulnerable populations affected by COVID-19 but this fell far short of the $10 billion stabilization fund requested by the emergency coalition. Patient-focused charities who had a mandate to fund research dealing with their condition also found themselves facing the prospect of not having sufficient funds to continue financing Canadian researchers. The Health Charities Coalition of Canada sent a letter[24] to the Prime Minister on May 21 signed by more than 1000 researchers explaining the essential role of funding from health charities “to the continuation of their ground-breaking and life-saving work.” The coalition requested direct investments of up to $28 million per month to allow organizations to continue their work in funding research.

One of the most comprehensive pictures of the impact of COVID-19 on charities (including patient-focused charities) and non-profit organizations in Canada comes from Imagine Canada, which advocates on behalf of both charities and non-profits.

In an April 30 blog post,[25] Emily Jensen, co-ordinator of network engagement for Imagine Canada, noted that revenue loss was threatening both charities and non-profit organizations.

“Across the country, fundraising galas are cancelled or postponed, charity runs and golf tournaments have been called off, and with many feeling the pinch on their own personal finances, individual donations are down.”

“When it comes to earned revenues, the sector is subject to the same challenges faced by the retail market. Many organizations rely on the sale of goods and services for income, but social distancing measures have made many revenue generating activities impossible.”

A major focus of Imagine Canada over the spring and summer of 2020 was the call for a Sector Resilience Grant Program to provide $3.75 billion in funding to cover core operating costs for charities not covered by the Canada Emergency Wage Subsidy program.

In late April, the largest health charities represented by the Health Charities Coalition of Canada had outlined a number of steps[26] taken by these organizations to meet the needs of their vulnerable populations. These included:

  • Transitioning services to virtual platforms to respond to need for disease-specific information for patients and their families in understanding risks, managing disease, and maintaining health in this new context.
  • Convening virtual support groups, connecting individuals living with disease to their care team and to each other during this time of social isolation.
  • Meeting the increased demand for health charities to supplement care, such as social workers and physical therapists due to the lack of capacity in the healthcare system.
  • Advocating for the needs of their communities in the midst of the triage of health care resources.
  • Elevating issues of access to community-based personal support workers and respiratory therapists.
  • Raising awareness of the need for personal protective equipment in community-based settings.
  • Working to pivot significant aspects of their revenue models – from seasonal in-person fundraising activities to virtual events.

An assessment[27] of the impact of COVID-19 on the charitable sector conducted with more than 1400 charity leaders in late April, 2020 and published by Imagine Canada in May contained the following findings:

  • 30% of charities have already laid off staff and 55% say new or additional layoffs are a possibility.
  • 49% reported difficulty engaging volunteers in current working conditions and 33% said volunteers were less available.
  • 20% believe they will be able to continue their current level of operations for 3 to 6 months; 25% for 6 to 12.

In looking at health charities specifically, this assessment found 9% of charities surveyed had ceased or suspended operations while 14% had cancelled programs due to lack of demand. Health-related charities were also significantly more likely than other types of charities (except those in education) to have moved their existing programs online.

Canadian Cancer Society expected a drop of between $80 and $100 million in donations this year as well as being forced to cancel hundreds of events.

By the middle of July it was being reported that health charities expected “historic losses” and would only raise less than half of usual revenues in 2020 because of the COVID-19 pandemic. A CBC report[28] noted that the Canadian Cancer Society expected a drop of between $80 and $100 million in donations this year as well as being forced to cancel hundreds of events. Its annual Relay for Life event, which was “reimagined” as a virtual Relay At Home version, only raised $4.2 million compared to more than $20 million in each of the last two years. The report also said smaller charitable organizations like the Sickle Cell Association of Ontario also faced a tough year and the $2,000 a month it usually received in donations has dropped to $400 since March.

At the time of publication of this report, the course of the COVID-19 pandemic remains uncertain as does its impact on the charitable sector. The initiation of new programs or continuation of existing programs from the federal government to support charities will be somewhat dependent on the scope and speed of the economic recovery as we enter a “post-COVID” period. As with for-profit and non-profit organizations it is probable some patient-focused charities will not be able to survive the economic challenges caused by the pandemic and will be forced to close their doors. Others will have to radically restructure in order to survive in whatever fund-raising environment they will have to function within under “new normal” conditions.

Forge new relationships with digital donors and volunteers.

In 2017, Christopher Barry who was working as an interim CEO to support not-for-profit organizations experiencing revenue challenges and transformational change wrote a column for The Globe and Mail Report on Business on the characteristics of successful charities. While pre-dating COVID-19, Barry’s four points seem to provide a useful roadmap for patient-focused charities hoping to thrive in the months and years to come:

  1. Execute and deliver to the organization’s mission.
  2. Adapt to change in stakeholders’ expectations.
  3. Address competition and declining revenue.
  4. Forge new relationships with digital donors and volunteers.

State of Patient Associations in Canada

  1. Executive Summary
  2. Introduction
  3. Revenue
  4. Fundraising
  5. Expenses
  6. Human Resources
  7. Public Policy Activity
  8. Post-COVID Implications
  9. How Patient-Focused Charities Describe Themselves
  10. Appendix A: Organizations reporting public policy dialogue and development activities
  11. Appendix B: Spending on Public Policy activities of every reporting organization
  12. Appendix C: Disease specific non-profit groups without charitable registration
  13. Appendix D: The differences between a registered charity and a non-profit organization
  14. Appendix E: Program areas and field codes
  15. Appendix F: Patient-Focused charities included in the report
  16. References
  17. Data