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hundreds of canadian kidney and liver transplant patients crowdfund to cover costs
people requiring a new liver earned much more than those awaiting kidney transplants, while children did better than adults, the study found
jan 8 2020
4 minute read
hundreds of canadians have launched crowd-funding campaigns in recent years to support their organ transplants, asking for help financing drugs, transportation and lost income — and raising thorny ethical questions, a new study indicates.
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for a victoria, b.c., woman suffering from end-stage liver disease, there was some good news: she had been deemed a candidate to undergo transplantation.
the bad news? when an organ became available, the patient and her spouse would have to pay for a three-month stay near the transplant centre in vancouver, one of canada’s most expensive cities.
so she set up a crowd-funding page, aiming to raise $10,000 and “relieve this stressful financial situation for my husband and myself.”
the woman, who eventually got her new kidney — and raised $6,100 — was not alone.
soliciting money for medical needs on the internet may seem like a quintessentially american phenomenon, unnecessary in a country like canada that boasts a universal, government-paid health care system.
but hundreds of canadians have launched crowd-funding campaigns in recent years to support their organ transplants, asking for help financing drugs, transportation and lost income — and raising thorny ethical questions, a new study indicates.
the more than 400 kidney and liver campaigns on gofundme.com alone underline the financial burden that’s imposed on transplant recipients — and not covered by medicare, note the researchers from toronto’s sickkids hospital.
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what’s more, the informal web-based system for raising money to cover those costs produces unequal results, often unrelated to medical need, they conclude.
people requiring a new liver earned much more than those awaiting kidney transplants, while children did better than adults, the study’s authors found.
to win donors’ sympathy, “campaign recipients were painted as morally worthy of donation” — victims of medical bad luck rather than poor personal behaviour — and much-loved pillars of their community, notes the paper in the journal plos one.
“this, of course, problematically presumes that some individuals are more worthy of medical care than others, violating norms of treating medical care as an entitlement and human right,” the authors say. “it is ethically problematic to shift to a system of distribution that awards individuals according to perceived moral worthiness or socioeconomic advantage.”
the paper also noted that crowdfunding patients often must sacrifice considerable privacy, revealing personal medical and financial information to bolster their pitch, sometimes at the urging of funding websites.
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the study was prompted by what seemed to be an “increasing trend” toward such campaigns, mostly launched by transplant patients’ family and friends, said samantha anthony, a sickkids’ scientist and social worker.
the research, led by anthony, wasn’t meant to pass judgment on the phenomenon, just highlight some of the issues around it, she said in an email interview. as to whether government should cover the costs the campaigns try to finance, that’s a complex question and “up to society to decide how to distribute scarce resources,” anthony said.
the authors looked at kidney and liver transplant patients who had used gofundme. they found 258 kidney cases and 171 liver patients.
for reasons that were not clear, liver patients received more and bigger donations on average and more facebook shares than those waiting for a new kidney, the study found.
the campaigns were varied, but all underscored the personal ordeal that comes with such severe illness.
they included one that was for an eight-year-old alberta girl suffering acute liver and heart failure due to a rare cardiac condition. her family asked for help to pay for “transportation, accommodations, food, lost wages (and) enrichment items” for the patient. they raised $21,040 of a $35,000 goal, the girl receiving a potentially life-saving heart transplant a year later.
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a charlottetown woman with kidney failure managed to raise $3,311 to pay for “medical bills, food, accommodation, loss of wages and other related costs” to undergo a transplant in halifax, and help others who were part of a chain organ-donation process.
most asked for money to cover the costs of attending a hospital outside of where they lived, lost income and medication not reimbursed by medicare or private insurance.
one suggested that drugs could cost $5,000 a month. another patient said a hospital social worker had suggested she start fundraising, warning the procedure would leave her out of pocket $10,000.
in an effort to boost the patient’s perceived “worthiness,” the study said, about a third of campaigners described the recipient as an “amazing person,” “caring’, “loveable,” or “kind.”
but relatively few of the crowd-funding requests criticized the health care system for allowing patients to face financial risk. that’s concerning, the authors argue.
“it encourages the public to view crowd funding as a solution to the needs of canadians in need of kidney and liver transplants,” they say. “by generally ignoring the systemic causes of these needs and demonstrating discrete cases where canadians are meeting these needs via crowd funding, donors… may be less likely to view the health system as in need of reform.”
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for patients like the victoria woman, who announced last july she was closing her gofundme page, there is mostly just gratitude to donors.
“i have been able to recover completely with a great amount of help from each of you,” she wrote.
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