In the Blog
We Can’t Afford to Be Sick: Chronic Illness and Poverty
Illustration by Erin McPhee
Over the summer, I was fortunate to attend the Special Olympics World Games in Los Angeles as a spectator. As I walked around the Festival Village at the Games, I stopped at one of the sponsors’ booths to sign up for a promotion.
The young woman who was taking my information stopped typing on her tablet and cleared her throat. “Sorry about that,” she said. “I’m sick right now.”
“Got a cold?” I asked.
“No, strep throat. I should really have started taking my antibiotics today.”
My first reaction: panic, because strep is highly infectious and I really didn’t want it. Second: sadness that this young woman had to work when she was ill. Third: full understanding of why she was there. A vast majority of American employees – 90%, according to one study – go to work when they’re sick, if they possibly can. They can’t afford to do otherwise.
Being sick in North America is expensive, and for those who have chronic or long-term illness and are out of work for extended periods of time – or permanently – it’s often financially devastating. The Council of Canadians with Disabilities reports that about 14.4% of disabled Canadians live in poverty. For those with cognitive or psychological disabilities, that figure rises to 22.3%. In the USA, a study by the U.S. Senate’s Health, Education, Labor and Pensions Committee found that about 29% of disabled Americans live in poverty. Many chronically ill individuals, including me, have turned to fundraising because their financial situations are dire. Some ill individuals lose their homes. Others sell their possessions in a desperate attempt to make ends meet.
Why is the picture for chronically ill people in North America so bleak? Here are several reasons.
There isn’t much job protection.
There are laws on the books in both Canada and the USA that protect people from discrimination based on disability. However, it’s very common for employees who need to take time off to handle a medical issue to find themselves out of a job.
The Canadian Labour Code offers federal workers 17 weeks of unpaid sick leave, during which time they cannot be fired or disciplined for their absence. After that, however, their job is no longer protected. Employees who are not covered by those rules have to rely on their province’s labour standards. In Ontario, employees are entitled to exactly ten days of paid personal time. That’s it. While there are measures in place to protect those who act as caregivers for ill loved ones, there isn’t any provision for those who need to deal with their own health issues.
In the USA, the Family Medical Leave Act (http://www.dol.gov/whd/fmla/) guarantees that eligible workers can take up to 12 weeks of leave either to act as a caregiver or treat their own illness. Two catches here: not every employee is eligible for the FMLA. There are workers in America who have been fired when they’ve taken a few days off to recover from the flu. Second: when those 12 weeks are up, if someone’s still out sick, their employer is legally allowed to fire them. Unfortunately, this happened to me.
Even if they’re not fired, people with chronic illness might end up resigning because their condition leaves them unable to work. If they are in remission and can take on a job, they might not be able to work a full schedule. They might need to leave during working hours to go doctor’s appointments or supportive care, such as physiotherapy. And of course, flare-ups and relapses might happen. Needless to say, finding employment that can accommodate this and pay a living wage is easier said than done.
It can take months or years to be approved for long-term disability coverage, and in the meantime, there’s no source of income. Paid sick leave isn’t really a thing here.
I’ve heard from friends in Europe who have extended periods of mandatory paid sick leave. That’s not the case in either Canada or the USA. Ontario only mandates ten days of paid personal time. In the USA, only a handful of states and individual cities require employers to provide paid sick days, and then, it’s usually only a few. For the most part, it’s left up to the employer. The last job I had didn’t give us any paid time at all.
The Canada Pension Plan (CPP) Disability Benefit is a monthly payment for individuals with severe or long-term illness or disability, who were previously in the workforce. In the USA, Social Security Disability Insurance (SSDI) covers the same ground. Five US states, plus Puerto Rico, also provide disability payments, but the programs are intended for short-term coverage.
Being approved for either CPP or SSDI can take months or even years. While both programs do have fast-track approval for certain severe or terminal illnesses, it doesn’t apply to most cases. The CPP website states that applications take about four months to be processed. SSDI takes even longer: one must wait six months after becoming ill or disabled to even apply, and applications typically take several months for the initial decision. Less than half of SSDI applications are approved on the first go-round and the appeals process can take months or years to complete.
What is a person who is too disabled or ill to work supposed to do to pay their bills while they are waiting for their CPP or SSDI case to be approved? Your guess is as good as mine.
If a person does receive long-term disability, it is often barely enough to live on.
CPP and SSDI payments are often less than $1000 a month in their respective currencies. On top of that, there’s a limit to the amount of monthly or annual income a disabled person can earn from any other source. Paying for housing, food, transportation and other essentials on $1000/month in Canada or the USA can be a daunting challenge. Every now and then there is help for some of those needs– for instance, in the USA, a chronically ill person might be approved for food stamps due to their low income; and in both Canada and the USA, disabled fare programs exist on many public transportation systems – but assistance can be minimal or hard to obtain.
Health care costs can lead to financial ruin.
The World Health Organization notes, “People who fall ill often face a dire choice: either to suffer and perhaps die without treatment, or to seek treatment and push their family into poverty. Those who suffer from long-standing chronic diseases are in the worst situation, because the costs of medical care are incurred over a long period of time.”
In both Canada and the USA, the health care one receives depends greatly on where one lives. In Canada, each province has its own system. In Ontario, OHIP (Ontario Health Insurance Plan) takes care of most medically necessary services…but not all. Outpatient prescription drugs are notably not covered under OHIP, and while there are several other programs that help, some of which are geared toward those with ongoing illness or exceptionally high prescription costs, they take some effort to navigate.
In the USA, the cost of healthcare makes it prohibitive for many individuals. CNBC reports that 1.7 million people in the USA file for bankruptcy every year due to medical bills. It’s the most common cause of bankruptcy in the country. It’s not hard to imagine that for someone with a chronic, serious and/or long-term illness, debt can accrue quickly and have devastating effects.
The Affordable Care Act mandates that everyone in the USA must buy health insurance, however, that does not mean that one can actually afford medical treatment. It’s not uncommon for plans to have four-figure deductibles before coverage kicks in. Insurance premiums, including those for Medicare, the government insurance for the elderly and disabled, frequently cost hundreds of dollars a month. Certain drugs might not be covered by insurance at all, and might cost thousands out of pocket. This isn’t limited to rare drugs, either: earlier this month I was astounded to discover that my prescription insurance would not cover a basic generic antibiotic without special authorization.
Other insurance plans work on an 80/20 scheme, which means that the patient is responsible for 20% of their bills. This doesn’t sound so bad until one remembers that there aren’t any price caps on medical costs in the USA. It’s not unusual to rack up a $10,000 or $250,000 hospital bill, and 20% of that is still horrifically expensive.
Everyday life can cost more.
Here’s an experiment: go to GoFundMe and count the number of fundraising campaigns for wheelchairs, mobility scooters, prostheses, hearing aids, accessible vehicles, home health aides and voice-to-text software. Health insurance doesn’t necessarily pay for those items, even though they might be critical to a disabled or chronically ill person’s well-being and ability to function.
Day to day expenses can be higher when you’re disabled, too. For instance, you might find that you have less choices – and end up paying more for housing – because you need a ground floor apartment or a building with an elevator. You might have to add a wheelchair ramp or otherwise modify your home. You might have to pay for grocery delivery because you just can’t get to the store or carry shopping bags. You might require paid help with other tasks, such as cleaning or doing the laundry.
Chronically ill individuals struggle to maintain the best health and quality of life they possibly can. When they also have to struggle to afford housing, food and medical care, it puts undue stress on them and their families. Chronic illness shouldn’t lead to poverty. Right now that’s the case for many, and that’s not okay.