For over a year now, COVID-19 has been a household name. 

As the pandemic has taken the spotlight in the media, and resources are being redirected towards its study and treatment, other causes — including healthcare for Canadians with pre-existing illnesses — have taken a backseat. 

Cancer patients for instance, have struggles with accessing treatments for decades prior to the COVID-19 pandemic. But the pandemic not only made it significantly harder for patients to access treatment, but to also receive critical timely diagnosis as Canada’s healthcare system became quickly inundated with care for COVID patients. 

Louise Binder, a lawyer and health advocate, says that she has witnessed this first-hand in her work as a health policy consultant for Save Your Skin Foundation — a non-profit that is “dedicated to the fight against non-melanoma skin cancers, melanoma and ocular melanoma,” according to their website. 

“At one point in the pandemic, we had three patients who were supposed to get cancer treatment. We were supposed to send patients from one province to another for treatment, so we flew them out and we set it all up for them,” Binder says. “But at the last second, the very last second, it was cancelled.” 

She explains: “This was because of COVID — because the people who have this kind of cancer treatment had to be kept one night in an ICU, and there were no beds available in the ICU hall of the hospital where they were going to go. It was very, very serious because they had metastasized melanoma, which means it had gone into other parts of the body. And that’s when you’re seriously at risk of not a very good outcome at all.”

Many such patients, suffering from terminal illnesses for instance, cannot afford a delay in diagnosis or treatment according to Binder. Because of this, organizations representing patients with non-COVID illnesses have faced increased demand for their advocacy work.

“The minute COVID hit us, people started phoning,” Binder says, “Not patients, but the patient groups were calling us, saying, ‘Our patients can’t get to their doctors, because they don’t have the money to pay for transportation. They don’t know which stores are delivering food to people’s homes and they need some support in that area. Everybody was needing mental health support, and basic facts about COVID and cancer, and what government programs were available and which weren’t to patients living with cancer.” 

Evidently, the pandemic has not only affected patients, but also the organizations that work to serve them, within Canada’s healthcare non-profit sector. According to Connie Cote, the CEO of Health Charities Coalition Canada (HCCC), “What we’re seeing from an organization’s perspective is a real shift in how we do our business, and providing services that have traditionally been offered in a face-to-face environment.” Yet, these organizations have kept up the fight for their patients’ interests for nearly two years now amidst a global pandemic. 

The shift in the way health charities and non-profits in Canada operate, however, was not born out of choice but circumstance. And the circumstances presented by the COVID-19 pandemic, were riddled with challenges facing the sector. 

Challenges faced by the sector

According to Martine Elias, the executive director for Myeloma Canada, a national non-profit working to support multiple-myeloma patients, one of the first challenges presented by the pandemic to organizations advocating for patients’ interests, was the inability for people to meet face-to-face. 

When governments implemented stringent social distancing measures implemented in Canada and across the world, Elias says that her organization, like many others, felt its impact profoundly. “The ability for patients to connect is really important. They gain a lot out of it — being able to talk to somebody with their condition, when they meet at support groups, meetings, conferences, etc. So that whole physical or in person interaction is really important. And we lost that,” she explains.

Elias says that in the case of multiple-myeloma for instance, the condition’s onset is accompanied by “vague symptoms” like “tiredness, bone pain, kidney problems” — symptoms that are not immediately recognized or investigated by general practitioners. This means that such patients would need further in-person medical consultation and testing in order to receive a timely diagnosis. 

Elias says, “Especially in the beginning of COVID and today, as well, patients were worried about putting pressure on the healthcare system. Everybody was saying ‘Don’t go to the hospital, you know a mask isn’t enough and there’s not enough beds, there’s not enough resources. So unless you have an emergency, stay away and don’t put pressure on the healthcare system.’.” 

Elias says the combined effect of social distancing and an inundated Canadian healthcare system, is organizations like hers are now faced with a challenge in connecting patients with the appropriate resources, treatments and doctors — and ultimately diagnoses. 

Pushing for policy changes in the healthcare system — changes that would make life easier for patients to receive support and treatment — during the pandemic was the next challenge that organizations in the sector faced, says Elias. “At first Canada was saying, ‘No, you have to be 65 or over to be classified as immunocompromised. It was based on age and wasn’t based on health status,” she says. “So we had to push hard to advocate for the federal and provincial governments to change that and recognize these patients as immunocompromised, so that patients could get their second dose of the vaccine sooner than four months within their first first dose as the National Advisory Committee on Immunisation had prescribed for the public.”

Social distancing made pushing for policy change even harder, Binder says. “Normally, we would have gone down to speak to policy-makers and explained the situation to them kind of face to face, which is obviously a much better meeting. But we couldn’t do that.” 

It wasn’t just the government’s support that organizations like Elias’s and Binder’s were missing, when the pandemic struck Canada in March of 2020. 

Binder says funding for organizations within the sector was massively affected by the pandemic, as previously generous pharmaceutical companies began to focus their efforts and resources toward COVID-19.According to her, big pharma-companies are the primary and largest donors to health advocacy groups in Canada. 

“We didn’t get as much funding last year as we have got in other years, but I certainly understood why. I mean, the fact of the matter was that there were so many organizations that needed help, right? And they just couldn’t give everything to everybody. That’s just the way it was,” she says, “and I know that a number of organizations like ours have complained that they had significant reductions in funding.”

Elias says this is because pharma-companies provide funding in a program-centric fashion. “If we put a proposal to do 10 info sessions, for example, they’d fund us for those 10 info sessions. So we’d put a budget together with how much it costs to run these events, and then they’d fund us based on those costs. But if they’re not done in person, like if you’re not buying people lunch, then their funding will go down, because they find costs based on market value,” she says. 

But today, the ‘market value’ or cost of a Zoom call — the preferred method to facilitate dialogue for advocacy purposes — is near nothing for most Canadians, meaning that pharma companies no longer saw the need to invest in the programs that were run on this platform. 

Previously in-person fundraising events are a second source of income to complement pharmaceutical company donations for health advocacy organizations like hers, according to Elias; who recalls that such events were put on indefinite hold early last year.

Despite the many challenges posed by the pandemic, Cote who works at the national level with HCCC in collaboration with its member organizations, says she has seen an unwavering level of resilience from the sector as they have found ways to workaround the hurdles. 

A ‘new’ approach

“It’s vitally important for us to keep up the fight for our patients’ needs right now,” Cote insists. 

Cote says that health charities and advocacy groups are in a unique position to understand some of the struggles that patients and their families are going through when they’re living with a disease, especially when they’re in active treatment or trying to receive diagnoses.

She explains: “Especially during the pandemic, we’d like to do everything that we can to be able to support these individuals and their families so that they can manage their disease, and that they can get as healthy as possible and ultimately, find a cure.”

Cote says, “We really want to be able to give folks hope. We want them to know that we’re there to support them, to be able to make the best choices that they can for their own health. And that often means having new innovations, new approaches to be able to manage that.”

Like the rest of the world, health charities in Canada found respite in the online world as many of them began to look for innovative virtual solutions for advocacy and fundraising. 

According to Binder, Save Your Skin Foundation began finding creative ways to approach the online world as soon as the pandemic struck. “What I did was, I pulled together 14 [patient] groups [who wanted to participate] and we created what we called the ‘Patient Hub’,” she says. 

Representatives of the 14 patient groups who participated were broken into three working groups who each took on an issue or challenge facing their patients in the thick of the pandemic, according to Binder. The three focus areas that each group took on were: supporting patients’ mental health, facilitating a taxi service to help combat transport-related challenges that patients faced in accessing healthcare, and general links to resources ranging from COVID-19 and cancer, to how one navigates applying for the Canada Emergency Response Benefit (CERB). 

“We did the fundraising for this ourselves,” says Binder, “we went out and raised funds for this and the result was that in Montreal and Toronto, we were able to coordinate and pay for taxi services for people to get to and from their doctor’s treatments or doctor’s appointments, etc.” She adds, however, that for lack of partners willing to sponsor the initiative, the taxi-service eventually ran out of funds to fuel it. 

Despite this challenge, Binder says that her organization has been working to advance patients’ ability to advocate for themselves in the face of Canada’s complex healthcare system. “I was getting all these emails from people saying things like, ‘I don’t know what to do to prepare for these online visits with this doctor’,” she says. According to her, this was due to a variety of reasons: ranging from nervousness surrounding navigating the online environment, to concerns from patients about being to advocate for their best interests like they could in-person. 

Binder explains: “So I created a checklist of how to prepare for, have and follow up on virtual care meetings. It’s up on the [Save Your Skin Foundation] website and it’s available to everybody. I don’t pretend it’s perfect, but I think at least it gives people some things to work with.” 

Elias says  Myeloma Canada sought to deploy similar virtual strategies to advance patients’ ability for self-advocacy. But with the phenomenon of ‘Zoom fatigue’ hitting people across the world, Myeloma Canada decided to put their own unique twist on virtual advocacy, awareness-creation and fundraising. 

In March 2020, Elias’s organization was set to host a series of awareness and fundraising marches in collaboration with patient-led support groups for people whose lives had been touched by multiple-myeloma, across Canada. But when the pandemic struck, she recounts, “We said right away, well, we’re going to need to move the marches to a virtual platform. I don’t care how it’s done, let’s do it.”

The result was a program called the ‘Personal Distance Tracker’. According to Elias, in June of 2020, patients and their families and friends were brought together by the organization to set “distance goals”. “We went to our previous march participants and leaders that were involved in our 2019 march, and we did some demonstrations online for how to use the tracker. And, you know, it was fairly simple,” she says. The idea was that those marching would pledge to walk a “goal distance” of certain kilometres, in return for their network of supporters to pledge to match the distance in dollars, for Myeloma Canada to advance their services to patients through advocacy, support and research. 

Elias says the initiative was so successful that her organization decided to repeat the virtual march this year (with an in-person gathering, also, for those who were comfortable attending). 

“One of the things that we know for sure is that there’s still a need to be able to fund vital research for a particular condition. So if you’re someone who’s living with cancer, you’re going to want to make sure that there’s continued investments in cancer research,” Cote says. “Continual investment in research in our various priority areas is how we know that there is hope for the future.”

Binder, on the other hand, says that when it became clear to her organization that the pandemic was here to stay, more research needed to be done beyond the medical. She says that her organization decided to carry out a research project that is currently underway, surrounding cancer patients’ experience through COVID using virtual care. Binder says eventually, a full report will be developed with recommendations about “how virtual care should and shouldn’t be used within the cancer community of patients.”

But Cote notes, “We are certainly looking to the public to continue to support their charitable giving, because we really do rely on that to be able to make advances in any kind of health research.”

Staying ahead of the curve

Despite the dip in funding that many health charities and non-profits across Canada saw in the face of the COVID-19 pandemic, Elias says that the 2020 calendar year was her organization’s “most successful one so far” — making the organization an outlier. This has been the case not just figuratively: “We’ve had our best year in terms of funding,” she says. 

Elias says that this is because when the pandemic struck, “We assumed right away that this was going to be here to stay.” She says, “So we decided we had to get ahead of the curve, because if you’re at the end of the curve you can’t be a leader for these patients.” 

This approach inspired Elias to apply to not one or two, but “many” pharmaceutical companies for funding — in order to stay ‘ahead of the curve’. She says every company, due to the redirection of resources as a result of COVID-19, has less to give each individual organization that asks them for support. But applying to many pharma-companies means that the probability of receiving more funds is higher. “Spread your peanut butter thin,” Elias advises. 

Elias also attributes Myeloma Canada’s success this year to the continued close contact maintained by her organization with patients. “During the pandemic, we knew that our patients were going through a very stressful event. They wanted to be closer to friends and family but that wasn’t possible so we became the touch points and contacts that they needed,” she says. “Because we were so responsive to our community, they thanked us by giving us more donations.”

Binder says in order for organizations within Canada’s health charitable sector to fully succeed, they must “look for partners.”

She explains: “I sometimes think that we don’t do enough thinking about partnerships. And I don’t mean just within the obvious patient community but I mean those working in areas that are ultimately social determinants of health — like groups that advocate for housing, food or income distribution. What they don’t have, we may have; or what we don’t have, they may have, and we can support one another.”

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