If you have seen a television commercial or billboard advertisement exhorting people to help “find a cure” for a certain disease you have been exposed to a patient-focused charity. Similarly, if you have sought health information or care at a small regional centre you may be benefitting from the same type of charity.

A new roadmap is needed to enable the sector to continue to build on its strengths and adapt to new and emerging realities. The charitable and non-profit sector has suffered from benign neglect for too long.

Canadian charities that focus on specific diseases and health conditions make up just a small percentage of all registered charities operating in Canada. However, in common with the larger sector of all charities, while the COVID-19 pandemic is putting unprecedented pressure on the many organizations, these charities were facing significant financial challenges and an uncertain future even before the pandemic. One of the most recent and comprehensive overviews of the charitable sector in Canada as a whole comes from a report titled “Catalyst for Change: A Roadmap to a Stronger Charitable Sector” [3] tabled by a special Senate committee in June, 2019. That report noted that an estimated 86,000 registered charities and 85,000 non-profit organizations generate more than 7% of Canada’s gross domestic product and employ more than 2 million people.

The report stated:

“Demand for services has increased, yet funding is constrained. In addition, technology has disrupted traditional models of service delivery and changed the way in which charities and non-profit organizations interact with volunteers and donors. A new roadmap is needed to enable the sector to continue to build on its strengths and adapt to new and emerging realities. The charitable and non-profit sector has suffered from benign neglect for too long. Legal rules have been reformed in a piecemeal fashion; task force recommendations have gone unimplemented; and kind words have all too often served as a substitute for meaningful action. The time for real change has come.”

The committee stated the sector relied on three main sources of funding: government funding, donations and earned income and that innovative approaches were needed in each of these areas to guarantee their future viability as sources of funding. It added “there is no single strategy or quick fix that would ensure the sector can continue to thrive and play its vital role at the heart of Canadian communities” but made a number of recommendations. “To continue its good work, the sector needs meaningful law and policy reform, as well as a renewed relationship with the federal government,” the report concluded.

To continue its good work, the sector needs meaningful law and policy reform, as well as a renewed relationship with the federal government.

A report by Imagine Canada looking specifically at donations from Canadians to charities between 1985 and 2014 spotlighted another specific challenge facing charities – namely a decline in the number of people making donations. According to Thirty Years of Giving in Canada[4]: “We estimate that in 2014, Canadians gave approximately
$14.3 billion in receipted and unreceipted donations to registered charities. Claimed donations have increased 150% in real terms since 1984. However, the proportion of taxfilers claiming donations has been falling steadily since 1990, which means that charities are relying on an ever-decreasing proportion of the population for donations.”

“Donors, as a group, have become much older and wealthier,” the report continued. “The giving behaviours of Generation Y are particularly worrisome; both the donation rates and average donations of this group are low and increasing very slowly…There is a limited amount of time left to tap into the philanthropic impulses of (the Baby Boomer generation) and it is unclear if younger generations will be willing or able to take their place.”

This uneasiness has also been expressed at the regional level. A 2019 report[5] from the Ontario Non-Profit Network representing charities and non-profit organizations in the province noted that “organizations aren’t just worried about having their funding streams cut, but also the speed and uncertainty of the decision-making process, as well as the lack of information, details, and engagement with the sector by the provincial government. The responses from nonprofits underscore the challenges they face and the concern they have for the communities they serve.”

Imagine Canada describes health charities as organizations that “provide both in-patient care (e.g., hospitals, nursing homes) and a broad range of out-patient care and services including rehabilitation, mental health treatment, emergency medical services, crisis intervention, public health and wellness education.” The heterogeneous nature of patient-focused charities is one of the most noteworthy characteristics of this sector – comparable in many ways to the diversity of diseases and health conditions with which the charities are concerned. Each with more than $100 million in income annually and hundreds of full-time employees, the Canadian Cancer Society and The Heart and Stroke Foundation of Canada dominate the sector. However, between these two charities and the many charities with few if any full-time employees who rely on volunteers and focus their efforts in a specific region or program, there lies a spectrum of many other organizations with a wide range of annual income and expenditures.

Map of Canada with the number of charities per province listed

Many of the most well-known patient-focused charities are national in scope and concern themselves with common conditions such as cancer, heart disease or diabetes. Others focus their communications and fund-raising activities on diseases that are much less common such as genetic disorders with only a few dozen sufferers in Canada. Not surprisingly more than half of all patient-focused charities are based in either Ontario (40%), Quebec (20%) or British Columbia (14%) as these provinces have the largest populations and also serve as a natural home base for many national charities.

Patient-focused charities must compete for revenues and attention with a number of other organizations dealing with health issues ranging from non-profit patient advocate groups, to hospital foundations and social enterprises working in the health sector. While patient-focused charities often have strong foundations and commendable reputations many people do not or cannot differentiate between them and other organizations when deciding who to support. The growth of the patient advocacy movement and creation of non-profit organizations to support this advocacy has made the field even more crowded. An environment which was already highly competitive and challenging was made much worse by the outbreak of the COVID-19 pandemic in the spring of 2020 creating a situation that will be explored in more depth at the conclusion of this report.

Scope of report 

This is the first report to specifically analyze the financial, operational, and human resource capacity of 1004 patient-focused health charities. The report is based on data submitted to Canada Revenue Agency (CRA) in annual returns for the year prior to December 2019 for charities designated as Charitable Organization (C) registered under the promotion of health (category codes 0100, 0110, 0120 and 0140). Just predating the onset of the COVID-19 pandemic, the report captures an accurate picture of the state of these organizations when it was “business as usual.” As such the report offers a baseline by which to compare the impact of COVID-19 on this sub-sector of charitable organizations as stakeholders emerge into a post-COVID-19 period and begin to reassess partner relationships in light of these organizations’ capacity to continue their work. 

The report is based on the data submitted by charities to the CRA in their annual T3010 Registered Charity Information Return. The form collects key information including:

  • Ongoing and new charitable programs the charity carried on during this fiscal period to further its purpose 
  • Descriptions of public policy dialogue and development activities
  • Fund raising activities and expenditures, including the use of external fundraisers
  • Financial position including assets and liabilities
  • Revenue derived from tax receipted and non-tax receipted sources
  • Revenue derived from all levels of government funding
  • Compensation amounts and pay scales for senior executives,
    full-time and part-time employees
  • Grants and other investments in research
  • Expenditures on management, administration, advertising, staff training etc.

How to use this report

This report provides a comprehensive overview of patient-focused charities operating in Canada up to the end of 2019. Data included in the report allow for a comparison of the various charitable organizations in terms of size and scope of operations and current activities of interest.

It should be noted that due to the nature of calendar year campaigning versus fiscal year spending, it sometimes appears that charities spend more than their income and appear to be operating in a deficit situation. It is important to compare a couple of years of data if a more granular look at an individual charity is required.

Throughout the report, where comparative data to the broad charitable sector are available, they are presented graphically to indicate how the patient-focused charities are performing relative to the rest of the sector.

Defining qualifying organizations

The CRA charity database comprises over 16,000 health-related charities. This list has been reviewed to limit the report analysis to qualifying organizations based on specific criteria, which will be referred to as patient-focused organizations in this report. Charitable organizations included in the report are based on the following definition: 

Social purpose organizations that exclusively provide services, support, education, research, and/or advocacy to patients, caregivers and families in crisis or need, marginalized populations, at-risk and complex care needs, disabilities and those suffering from acute or chronic health challenges.

The social determinants of health (SDOH) broadly help identify qualified organizations as they are unequivocally associated with health outcomes and managing illness successfully. Organizations addressing the special needs of single pregnant women, homeless persons, new immigrants, culturally sensitive communities, First Nations, remote and rural areas, housing and food insecurity, while not necessarily tackling patient-focused issues are, nonetheless, providing key support services to enhance the health outcomes of these populations and due to the isolated nature of these cohorts and the general lack of more specific supports, are included within our definition.

However, they are not included in this report as we have concentrated on patient-focused organizations of which there are 1004 (see Appendix F). The next phase of this report will focus on organizations that represent the greater ecosystem of support available for patients including those referenced above. 

Exclusion criteria

Charitable organizations with the following characteristics or activities were excluded from the analysis:

  • Those affiliated with religious organizations or groups. 
  • Activities focused on programs or populations outside of Canada.
  • Hospital foundations or non-arm’s length hospital charities such as hospital auxiliaries or community organizations whose only purpose is to raise money for equipment acquisition for local hospitals or long term care.
  • Government Health authorities that deliver care.
  • Professional membership-based organizations.
  • Third-party care delivery organizations providing care in hospitals.
  • Organizations that have discontinued operations due to lack of funding.
  • Organizations focusing on Public Health versus the provision of patient or individual support.

There are a number of organizations in Canada that focus on patients and their families or caregivers but do not operate as charities but rather as non-profit organizations. These are not included in our study cohort but feature in some analysis detailed later in the report dealing with advocacy and public policy activities.

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