Tracey Thompson, a Toronto woman in her fifties, caught COVID-19 two years ago but hasn’t yet recovered. She has since been diagnosed with myalgic encephalomyelitis (a more modern label for chronic fatigue syndrome), postural tachycardia syndrome (which causes dizziness and fainting upon standing up), and mast cell activation syndrome (which causes severe allergic-like responses). All of these conditions have been observed in cases of long COVID.
Her severe fatigue makes her unable to work. Her newly developed mold and food sensitivities make finding appropriate housing and preparing meals even more difficult and expensive. The application process for disability payments is complicated. Even with a successful application, the $1,169 CAD monthly stipend wouldn’t be enough to cover all of her costs. As a result, Thompson has launched a GoFundMe page to pay for care and housing.
“I won’t be able to maintain housing and I’m not well enough to live on the street,” Thompson told The Daily Beast. With money running low, and no cure for long COVID in the crosshairs, she has applied for medical assistance in dying, or MAiD. “I don’t understand how a society that supposedly has universal health care gets an international reputation for taking care of its citizenry, when that is obviously not true for poor, disabled people.”
Despite Canada’s reputation for universal health care, many of its citizens with manageable health conditions have turned to crowdfunding campaigns to afford treatment, medical support, and the cost of living. When that fails, they turn to MAiD. “These are people who do want to live but they can no longer go on,” Naheed Dosani, palliative care physician and lead for health equity at Kensington Health, told The Daily Beast. “Because structurally, the society they live in will not support them with the bare minimum resources that they need.”
Canada made international headlines in 2016 when its government passed MAiD legislation, allowing people with terminal illnesses (categorized as “Track One” under the law) the choice to end their lives. Per Health Canada data, 7,595 people opted for medically assisted deaths in 2020, accounting for 2.5 percent of deaths that year, a substantial increase from the year before.
The pool of eligible applicants has grown significantly since then. MAiD legislation was amended in March 2021, allowing people with intolerable and irreversible illness, disease or disability (called “Track Two”) to qualify—though without introducing substantial improvements to social assistance programs. “Publicly, the data around Track Two requests have not been reported in a meaningful way,” Dosani said. “In public discourse on social media, the media, and some of my own experiences, I have seen people with disabilities who are talking about pursuing MAiD.”
(Mona Gupta, a psychiatrist and ethicist at the University of Montreal who serves as the chair on a current MAiD advisory panel, did not respond to The Daily Beast’s request for an interview.)
The World Health Organization estimates that 10 to 20 percent of people infected with COVID-19 will experience long-haul symptoms (often referred to as long COVID) that can last for years and include fatigue, neurological symptoms, and significant impairment, with varied severity across different individuals. The causes are still unclear, with leading theories ranging from immune system dysfunction, to persistent viral particles, to tiny blood clots. Long-haul COVID symptoms are more common in women—especially women of color.
Many of those symptoms overlap with myalgic encephalomyelitis (ME), itself a poorly understood and frequently dismissed condition that disproportionately affects more women than men, and is still treated with skepticism by some doctors (it was originally labeled as hysteria by two psychiatrists in 1970). ME’s origin story harkens back to the experience of many women early in the pandemic who reported that their doctors did not take their symptoms seriously in part due to gender biases.
One Canadian woman first profiled by Chatelaine in 2019 described the hell she has experienced since being diagnosed with ME, including having a doctor suggest graded-exercise therapy (a debunked treatment that some doctors have also prescribed for long COVID recovery despite concerns it may worsen symptoms). Saddled with debt and relying on experimental treatments not covered by the country’s healthcare, she has turned to MAiD as a last resort, for which she was recently approved.
Broken Social Net
The increase in MAiD applicants is not a huge surprise for many who are more intimately familiar with Canada’s social assistance programs for people with disabilities. Thompson, for instance, described applying for disability in Ontario as a “nightmare.” She added, “People usually are rejected the first time around,” often after a year of waiting.
Helaine Boyd from the Disability Alliance told The Daily Beast she believes this “convoluted” system is no accident.
“I think it's done on purpose to reduce the amount of people who are applying,” she said. “Liaising with doctors can be quite a challenging experience. The doctor may not believe that a person has a disability and may not want to help with the application.”
Though this is a requirement for the application, Boyd explained that doctors aren’t adequately compensated by the government to fill out these forms. Her organization claims to have found there are a number of doctors who will refuse to help their patient. Exacerbating the challenge is that Canada is currently facing a shortage of family doctors.
“Structurally, our society is designed such that people with disabilities lack adequate access to support, and resources they need to live well,” Dosani said, adding that many people who receive disability payments in Ontario are also homeless. “They don't have a choice to be able to live well because they don’t have access to the resources that they need to be able to live well.” Overall, more than 1.4 million Canadians with disabilities live in poverty according to a 2017 census—that’s roughly 1 in 25 Canadians. According to Dosani, MAiD becomes “the only option left to many people.”
Living with disabilities is simply more expensive. Accessible housing is rarer and therefore often more costly; finding adequate transportation usually requires signing up for premium services or retrofitting existing vehicles with other accommodations; and the costs of medical equipment can add up quite rapidly. Data from 2015 from the Council of Canadians with Disabilities indicates that people with disabilities need an average of $750 more per year to cover necessary costs.
“I do think that the result [of MAiD] will be an attack on poor people,” Thompson said, adding that middle-class folks who become disabled will likely face poverty. “I know people who are selling their homes and they're selling off their assets because they have no income.” Eventually, even that money starts to dwindle until there is nothing left.
One of the obstacles preventing substantial increases in social assistance money is that public misconceptions run rampant. Thompson argues that many people believe that the $1,169 in disability payments provided by the Ontario government is in addition to funding for housing. In actuality, the $1,169 is all that individuals on disability will receive, which is lower than the average monthly rent in Toronto. “They think we’re sort of living this easy life when it’s destroying people who are guilty of not being perfectly healthy,” Thompson said.
The Ontario provincial government promised to raise disability payments 5 percent by the end of the year. That extra $58.45 CAD a month still leaves recipients who live exclusively on that money more than 25 percent below the poverty line. In British Columbia, a recent increase added $175 CAD per month. These increases are paltry in comparison to what advocates are asking for: doubling disability assistance so recipients aren’t left living below the poverty line. Spokespersons from the provincial governments of Ontario and British Columbia did not respond to questions from The Daily Beast about disability payments.
“People can’t thrive further in life because they’re stuck in the welfare system,” Boyd said, adding that there are so many different complexities and restrictions on disability payments. “It’s become legislated poverty, and as a result it’s not allowing people with disabilities to live full lives.” Getting a part-time job that pays too much, for example, would lower the overall payments a person receives and could ironically make it harder for an individual to make ends meet. In addition to increasing funding, Boyd said that reducing the complexity of applications would also be beneficial.
Advocates believe that long COVID isn’t being taken seriously by government officials. A spokesperson from Ontario’s ministry of health told The Daily Beast that hospitals can dedicate and fund COVID-19 clinics through their existing budgets and also released clinical guidelines for primary care providers. In Ontario there are only seven outpatient clinics supporting people with long COVID symptoms though waitlists are months long.
We’re learning more and more each day that long COVID and other post-viral conditions pose a risk to seemingly anyone—which will force more and more people to rely on inadequate disability payments, dwindling savings, and crowdfunding to treat manageable conditions. When that runs out, their lack of viable options may force them to seek MAiD—not out of choice, but out of grim necessity.
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