Health charities play a key role in changing the status quo in our healthcare system. The pandemic has shown us “on the widest scale possible” why these charities need to collaborate and work together. We talked to the CEO of the Health Charities Coalition of Canada, Connie Côté, and the leaders of several of the 24 national health charities that form its membership, about their work and what lies ahead.
A father in Saskatchewan tweets a photo of his smiling son holding up a box of pills like it’s a brand-new PlayStation. A mother in Alberta goes on national television with her 12-year-old daughter who hopes this same box of pills will allow her to “be just a normal kid for just one day.”
If ever there were a “good time” to be a genetic disease that causes persistent lung infections and cuts life spans in half, or more, this is it. This is “the time every disease wants to have happen to them,” says Kelly Grover, CEO of Cystic Fibrosis Canada. Grover can’t find words to describe how she felt the day Health Canada approved Trikafta, a “miracle drug” for the treatment of cystic fibrosis. “Just even telling you, I well up,” she says. “How lucky are we to be present, to witness a change of this magnitude for a disease?”
As anyone involved with a health charity knows, a box of Trikafta represents much more than a blister pack of pills. For health charities, whose main mission is, ultimately, to find a cure, such pills symbolize decades of patient-informed research, advocacy, and support undertaken by networks spanning coast to coast. They symbolize thousands of fundraisers, thousands of volunteer hours, and a constant stream of petitions, letters, and meetings with elected officials.
It’s tempting to say the pills symbolize hope, but it’s more than that, says Connie Côté, CEO of the Health Charities Coalition of Canada (HCCC) – a membership-based collective of 24 national health charities that she calls “a coalition of the willing.”
For the millions of patients HCCC members serve, the work they do is something bigger, Côté says. “You know, there was a time when we talked about it being hope, but for many of our patients this is everything. Because it means I might be able to attend my granddaughter’s wedding; it means I might be able to hold my first grandchild. It means I might be able to make strawberry jam next season.”
“It’s more than hope. It’s reality, and it allows them to have that one more hug. One more walk. One more kiss.”
Filling the gaps in the system
Canada’s healthcare system is in crisis. At an emergency summit convened in October, the Canadian Nurses Association said the system has been “brought to its knees.” A recent Canadian Medical Association statement and Care Economy mandate letter paint a bleak picture of “burned out, exhausted and demoralized” healthcare workers, chronic staff shortages, surgical backlogs, and “record high” numbers of Canadians without access to a family physician.
It’s against such a backdrop that the members of the HCCC go about their business, well aware that when such systems break down, few are more vulnerable than those with a chronic, life-threatening disease.
Nine months into the pandemic, when HCCC members were experiencing their own crisis – reporting revenue losses in the millions, laying off staff, and slashing research budgets – they formed a unified voice: “Illness and the need for social services and evidence-informed information doesn’t stop because of crisis,” reads the HCCC Response to the 2020 Fall Economic Statement, requesting $131 million in funding. In The Globe and Mail, Pamela Valentine, CEO of the MS Society of Canada, and Anthony Feinstein, an MS researcher at Sunnybrook Health Sciences Centre, wrote that “we are increasingly filling the gaps in the health system – and in a pandemic, these gaps can become chasms. Demand for our services is up just as charitable giving – the backbone of our funding model – has dried up.”
I always say to people, once you’ve been diagnosed, the next phone call should be to a health charity.Jennifer Nebesky, Canadian Liver Foundation
Filling the gaps is nothing new. In 1946, a Welsh Labour Party politician told the British House of Commons that a health system that still relied upon charitable fundraising was “repugnant to a civilised community.” A recent UK study examines how health charities mobilized during the pandemic, serving as both “wake up call” for the government and inspiration. “Far from simply ‘plugging gaps’ in the welfare state these charities often lead the way in improving standards of care, in professional collaborations, in reaching out into the community, and in making rapid adaptations when necessary,” the authors note.
Where health and systemic issues intersect
Governments don’t always appreciate the important role health charities play in this country, says Jennifer Nebesky, CEO of the Canadian Liver Foundation (CLF). If you remove health charities from the equation, “people are going to get left behind,” she says, or they’re going to turn to the healthcare system looking for help, even just trying to understand their disease.
Nebesky spends hours on the phone providing information and support about liver disease, which affects eight to nine million Canadians. “I always say to people, once you’ve been diagnosed, the next phone call should be to a health charity.”
Educating people about the more than 100 types of liver disease, only one of which, contrary to popular belief, is caused by excessive alcohol use, must be daunting enough. But Nebesky notes that liver disease also “intersects a wide spectrum of marginalized communities, from racialized to LGBTQ2S+ to Indigenous people to the food-insecure,” uncovering layers of systemic issues and stigma.
In Plain Sight, an independent review commissioned by the B.C. Ministry of Health, revealed “disturbing” results indicating widespread systemic racism against Indigenous people in the province’s healthcare system, with 26% of Indigenous survey respondents reporting “always” being asked about substance use when accessing healthcare, compared to 5% of non-Indigenous respondents.
CLF highlights stories of stigma in its blog. Doctors’ assumptions that Celina Thibault, a Cree woman from Alberta, drank too much when she barely drank at all caused such a delay in treatment that her disease progressed to stage four liver failure. “It was such a horrible stereotype and it made me angry,” Thibault writes.
Nebesky hears this type of story every day. You become attached, she says, especially with transplant recipients. She remembers hearing that Tara Bourque, one of “her CF people” from her years working at Cystic Fibrosis Canada, had received the call for a life-saving lung transplant: “It gives me goosebumps just thinking about it,” she says. “People trust us with their stories. They’re putting their hopes, their faith, whatever in us to make sure we will move mountains for them, that we will take what we learn to the HCCC and say, ‘Hey, this is what our community is experiencing.’”
Turning the personal into policy
As story after story from various health charities converge at the HCCC, Côté translates the personal into policy, into research initiatives and position statements and pre-budget submissions, even a guidebook to navigating a healthcare system with 13 provincial and territorial plans and widely varying coverage of medicines and treatments.
I would be willing to bet that any person that you bumped into walking down the street is affected by the work that one of the members of the HCCC does.Morgan Davidson, CLF
While charities are on the front lines, delivering care and support to families, “I’m the paper pusher,” Côté says. “Real life happens in the communities, and in many instances, our health charities are that life branch for people when they’re in early diagnosis.”
Morgan Davidson, director of marketing and communications at CLF, emphasizes the reach of HCCC, which serves millions of patients through its member organizations. “I would be willing to bet that any person that you bumped into walking down the street is affected by the work that one of the members of the HCCC does. Whether it’s yourself or your caregiver or a loved one, and someone who’s living with diabetes, liver disease, cystic fibrosis, cancer.”
One of the first things Nebesky did when she took the reins as CEO of CLF in January 2020, on the brink of a pandemic, was to “call Connie,” she says. She looked to the coalition for “sound, evidence-based” information about the virus, specifically how it affected liver disease patients, and for COVID-related advocacy.
With no in-house advocacy resources available at the CLF, the support of the HCCC is essential, says Nebesky, especially as they navigate a post-pandemic world. Recently, the coalition called for more clarity in response to the National Advisory Committee on Immunization’s recommendation for a third dose of COVID-19 vaccine in immunocompromised individuals. “Canadians who are moderately to severely immunocompromised remain confused and scared about how COVID-19 will impact them and the ones they love,” they write, noting that a booster “may be a matter of life or death for some of our most vulnerable Canadians.”
Power in numbers
Kelly Grover remembers thinking, at her first HCCC meeting years before she joined Cystic Fibrosis Canada, “This is where I need to be because this is where you learn what others are doing.” During COVID-19, this translated into sharing knowledge about vaccine policies, hybrid work models, and transitioning to virtual events. In terms of research, she says, approaching organizations such as the Canadian Institutes of Health Research as a collective has greater impact: “They’re not going to want to meet just with one group,” she says. “They want to hear more of a voice.”
Recently, Cystic Fibrosis Canada has worked to get Trikafta covered by provincial and territorial health plans. The coalition’s long-held position on access to medicines informs such advocacy – “All people living in Canada should have equitable and timely access to necessary prescription medications based on the best possible health outcomes rather than the ability to pay” – and is part of a bigger move to “drive system change,” including developing a funding strategy for drugs for rare diseases.
For Sara Aldrich, a 23-year-old with cystic fibrosis who was told by a doctor to “prepare for her death” when she was in high school, system change might come too late. Because of a “multi-layered” funding problem that’s not an easy fix, according to a Cystic Fibrosis Canada spokesperson, Aldrich was informed that Trikafta was not “cost-effective” and denied coverage in Ontario. “Imagine being told that there’s this amazing drug that’s going to save you and then have it ripped away from you,” Aldrich told the Ottawa Citizen. In 2018, half of cystic fibrosis deaths in Canada were people under the age of 33.
Unfortunately, the gap “between our values and our reality” has yet to be bridged, according to A Prescription for Canada: Achieving Pharmacare for All, the final report of the Advisory Council on the Implementation of National Pharmacare, for which the HCCC contributed patient perspectives, written submissions, and more.
Investing in health research
Karen Lee, CEO of Parkinson Canada, who has a PhD in cellular and molecular medicine and held research positions with the Multiple Sclerosis Society of Canada for nearly 12 years, recalls a “not very sexy” but important HCCC-led initiative from her days of doing “bench work” (a.k.a. lab work). An HCCC policy to ensure that 100% of donor funding went to researchers instead of into paying indirect costs, such as heating and lighting, to the academic institutions and hospitals hosting them, was part of a bigger message that health research deserves better.
An HCCC position statement lays this out: “We believe the funding of such costs is the responsibility of governments and/or research institutions and not donors.” In a 2018 pre-budget submission to the House of Commons Standing Committee on Finance, HCCC said research is “imperative to improving the lives of patients in that it creates new avenues of discovery and improves the shared knowledge-base of science.” Unfortunately, federal investments in health research have “flat-lined” since 2008, they noted.
For two decades the HCCC has followed a different trajectory, collectively investing (pre-pandemic) $155 million annually into health research, supporting more than 1,300 primary investigators and 2,500 trainees. Research institutes “rely heavily” on health charity funding, according to the more than 1,000 researchers who wrote to Prime Minister Justin Trudeau in 2020 requesting aid as charities struggled to stay afloat.
We’re always making sure that there is that patient voice in any initiative that we’re involved in.Connie Côté, HCCC
In March 2021, Paul-Émile Cloutier, CEO of HealthCareCAN, described the current research landscape as “a national embarrassment,” blaming decades of underinvestment and “rattletrap funding” that relies “far too heavily on the benevolence of private donors.” Investment in health research is “severely lacking,” he notes, just 0.43% of total health spending, compared to 3.8% in the United States and 2.4% in Australia. While the 2018 federal budget contained good news about health research investments, Cloutier is still waiting to see tangible results.
A philosophy of patient-centred research
Having transitioned from the lab to the non-profit world, from mice to CEOs, Lee jokes, gives her a unique perspective on the science behind HCCC’s research initiatives, especially their philosophy of patient-centred research. “We can’t find new treatments or cures without the patients,” she says, recalling her lab days, when she’d never meet the actual people living with the disease. “I would think I was working on the most amazing thing only to have a patient say, ‘Hey, this is not even relevant to me.’”
Patient-centred research is what sets the HCCC apart, says Côté. “We’re always making sure that there is that patient voice in any initiative that we’re involved in.” The genesis of health charities, beginning with the 120-year-old Canadian Lung Association, was rooted in this concept of patient voice, she says. They were formed by individuals who wanted to address a void – who wanted to find a cure.
Côté outlines a threefold approach to research: “We’ve got a patient who has identified a problem, a researcher who has the knowledge to find a solution, and a health charity who can go out there and communicate this.” The only thing missing is a funder.
Health charities provide support for their patients that may not be readily available at a doctor’s office.Karen Lee, Parkinson Canada
A recent initiative by Parkinson Canada, the Canadian Open Parkinson Network (C-OPN), spells this out on their website with three yellow push buttons: Participate, Research, Support. Dr. Davide Martino, who leads the Calgary Parkinson Research Initiative, praises C-OPN’s collaborative nature, writing that patient involvement is “vital” for researchers, as both advocates and advisors. “We can’t work in silos, we can’t collect large data in single institutions,” he notes. “You need different players at the table to be successful.”
Beyond the lab: Effecting real-life change
The power of the HCCC extends beyond research, says Lee. Health charities provide support for their patients “that may not be readily available at a doctor’s office.” Lee’s grandfather lived with Parkinson’s, and she remembers a childhood of driving back and forth from Ottawa to southern Ontario to support him. “It was a family disease,” she says, that left a lasting impact. “Normally neuroscientists don’t think about going to a health charity. You think about going to academia, but this has been really rewarding for me. Being able to lead Parkinson Canada is really an opportunity for me to honour my grandfather.”
At its core, the HCCC is a place where the personal, the political, and the scientific intersect. Although she calls herself a paper pusher, Côté knows her work is grounded in real-life experiences. She knows what it’s like to drive back and forth from her home in Ottawa to southern Ontario. “I’m talking to you as a caregiver today, who has displaced herself,” she says. The next morning, she will drive her aunt, a transplant recipient, from Bracebridge to Toronto for a medical appointment. In two weeks’ time, they will repeat this journey only to be turned back because of an unclear doctor’s note vis-à-vis her aunt’s eligibility to receive a COVID-19 booster.
These types of scenarios – the challenges rural communities face to receive medical care, uneven standards of care – don’t surprise Côté. “That’s just the state of our healthcare system,” she says.
COVID has shown us a spirit and level of collaboration and cooperation that we’ve never seen before. That is the platform from which I would love to see us move forward in the future.Connie Côté, HCCC
While the work of the HCCC aims big – to improve policies to change the system, to invest in ground-breaking research, to improve health outcomes for all Canadians – it starts small. Change is incremental, Côté says, bringing together various stakeholders’ perspectives to ask, “How can we really improve our system overall from our collective experiences?” Deciding where to begin can be daunting, she admits, especially because much of what they do relies on volunteers – from private sector partners who provide free data to consultants who do pro-bono work. She and her executive assistant, Nkeonye Aniagu, comprise the entire HCCC staff. “There’s just the two of us, but our power really comes from working together.”
While COVID-19 has affected health charities “quite significantly,” says Côté, it has also demonstrated “on the widest scale possible” why we need to work together. The swiftness of the scientific community to produce vaccines and roll them out “has shown us a spirit and level of collaboration and cooperation that we’ve never seen before. And to me, that is the platform from which I would love to see us move forward in the future.”
“If we were able to do what we did for COVID to find cures and treatments and options for so many other diseases, I think it would just be phenomenal,” she says. Even if this would put her out of a job? Côté laughs. “You know what? That would be glorious if I was out of a job because we cured all diseases.”
For now, Côté’s taking stock of the pandemic’s ongoing impact: prioritizing patient needs and support for caregivers, closing research gaps. There are glimmers of hope – a government promise to add 1,000 Canada Research Chairs, for example. Armed with reports and data, the HCCC stands poised to help guide such initiatives.
Côté is also taking stock of the bigger picture as a new era of health charities is ushered in, where century-old funding mechanisms have crashed and health system gaps have widened into chasms. “Do you know what keeps me up at night?” she asks. “Wondering what lessons we’re learning as we move through this pandemic. What can we do differently?”
She thinks of all those who died because of a system where people can slip through the cracks, especially those who died alone.
“Please let us be better than we were today,” she says. “Let me have learned the lessons from today so that tomorrow is better.”