Paralyzed from the chest down, Chris Stigas has to use catheters and other medical supplies to urinate – but the Toronto man says he has no choice but to roll the dice on his health by reusing the supplies because the system will not provide enough own supplies and it cannot afford to buy them.
Stigas suffered a serious spinal cord injury in 2014 after he slipped in his bathroom in the middle of the night and hit his neck against the tub.
He said he was forced to reuse the urine collection bags needed for his catheters – against medical warnings that reusing them can cause infection and other serious health complications.
“It makes me feel like a second-class citizen,” Stigas told Go Public. “It’s a constant source of anxiety, always having to wonder where I’m going to find the money to pay [for] my medical supplies.”
Stigas receives just over $1,000 a month from the Ontario Disability Support Program which is supposed to cover his medical supplies. This funding is about $600 less than the amount he needs to buy what is medically recommended each month.
Research studies show that approximately 47,000 Canadians with spinal cord injuries rely on catheters as essential medical equipment. But advocates say the Canadian medical system misses a lot because the ability to urinate without taking health risks depends on where you live and what you can afford.
Each province and territory decides which medical supplies it will cover and for how much, leaving many patients without, said Peter Athanasopoulos, director of public policy and government relations for Spinal Cord Injury Ontario.
“Just imagine having to negotiate the number of times you go to the bathroom based on the number of catheters you have. Imagine having a UTI where the solution is that you have to drink lots of water, but having to negotiate the number of cups you you can have because you don’t have enough catheters and you can’t afford to buy what you need,” he said.
Roll the dice
Stigas’ funding covers about a quarter of the cost of the catheters he needs, not including other related equipment. For that reason, he said, taking medical risks and shortcuts is the norm.
He is not the only one.
Go Public polled spinal cord injury patients and advocacy groups across the country who say some catheter users are also risking their health due to lack: intentionally dehydrating to avoid filling their bladder, boiling medical equipment to try to disinfect it or use cheaper, non-lubricated catheters, which research shows double the risk of urinary tract infections.
Several studies, including this one by a task force led by Urology Nurses of Canada, shows that the safest type of catheter is self-lubricating, which minimizes the risk of infection.
The average patient needs four or five a day, with a potential cost of $2,500 for bladder management supplies per month, according to a 2021 study guidance document by Spinal Cord Injury Ontario.
Some patients have their equipment covered by supplemental health insurance, workers’ compensation programs, or insurance settlements. Many others, however, are at the mercy of the provinces in which they live.
“It seems quite unbelievable that we all live in Canada and there are different levels of coverage for medical supplies when it should be the same for everyone. A spinal cord injury is a spinal cord injury… It needs to be fairer,” Stigas said. .
Spinal Cord Injury Ontario went from province to province trying to figure out eligibility and availability and found “they’re very inconsistent and difficult to determine,” Athanasopoulos said.
“There really is no standard of practice across Canada…supplies related to all [intermittent catheter] users, not just people with spinal cord injuries,” he said, referring to other people who need catheters, such as patients with multiple sclerosis or Parkinson’s disease. .
Since the launch of its #peeforfree In 2018, Spinal Cord Injury Ontario lobbied health authorities for a program that would cover home catheter use, regardless of income, location, or insurance status.
As it stands, Stigas’ home province of Ontario is among the least covered provinces, with no dedicated catheter supply program except for very low-income people on the welfare.
This is also the case in Manitoba and British Columbia. There is partial coverage in Alberta and New Brunswick that includes income-based and prescription programs.
Saskatchewan’s funding, on the other hand, is seen by advocates as the gold standard, based solely on patient need, where the medical provider bills the government directly and supplies are shipped directly to the patient’s doorstep.
It is not clear what fully funding these types of medical supplies would cost provinces and territories.
Another question is why there is so much inconsistency in funding and patient access across the country.
“The short answer is we really don’t know,” said Associate Professor Kristine Cowley, director of the University of Manitoba’s Center for Spinal Cord Research.
She said catheters aren’t the only example of essential medical items excluded from government funding. She cites insulin, for example, and the fact that type 1 diabetics do not have guaranteed funding across Canada.
Athanasopoulos suspects limiting coverage is a cost-cutting effort, but says the math doesn’t add up.
A program funded by Health Canada in 2013 study estimates the annual economic burden of traumatic spinal cord injury, including post-traumatic complications, at $2.67 billion.
The study indicates that better management of these complications could reduce costs.
Another one 2016 study shows that a single hospitalization following a complication of a urinary tract infection can cost the Canadian health care system from $5,000 to $190,000.
‘Improved quality of life’
An update of the study funded by Health Canada in 2013 is in preparation, but no publication date has been announced.
Athanasopoulos said that in addition to substantial savings to the healthcare system, improving access to catheters would also have a social benefit.
“Downstream of the savings made by going to the hospital, reducing infections, improving quality of life, increasing the capacity for sustainable gainful employment, the number of opportunities simply by giving people the opportunity to do pee for free is huge.”
Stigas received temporary cost relief for nearly two years. As a temporary solution to healthcare staffing issues, he received an “at-home” catheter during the pandemic, more commonly used in hospitals.
It is changed monthly by a nurse and covered by the health system, but this type of catheter has an even higher risk of infection and can become dislodged or clogged.
Stigas said that over the next few months he will likely start using intermittent catheters again, so he wants Health Canada and the provinces to step in and fund medically recommended catheters and related medical supplies — not just for himself, but for the thousands of other people in similar situations.
“In the early years when people had spinal cord injuries, they were dying of kidney failure because they couldn’t manage their bowels and bladders properly. So the fact that we still had to fight for this stuff in 2022 is completely outrageous,” he said.
Go Public asked the Ontario Ministry of Health and Health Canada about the health implications and financial hardship caused by the lack of universal coverage for catheter products for people with spinal cord injuries.
The Ontario Ministry of Health did not address the issues facing patients, saying only that “Ontario will continue to review evidence and funding models from other jurisdictions.”
Health Canada said “the health and safety of Canadians is the government’s top priority,” but said medical devices, including catheters, fall under provincial and territorial jurisdiction.
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