Jennie Sparaga had spent most of her life "not feeling well." Plagued by mysterious abdominal pain that would leave her in the ER for days at a time, low blood platelets and anxiety attacks, she spent the better part of 35 years mystifying doctors and seeking answers.
So, in 2006, when an internist said she suspected Sparaga had lupus, a chronic, autoimmune disease in which the body attacks healthy organs and tissues. Sparaga, then in her mid 30s, suddenly had a frightening diagnosis with an uncertain future.
She also had a family to raise: Sparaga had a son from her first marriage and a baby girl with her new partner. She had just been hired as an addictions counsellor, a job she loved. Although she had medical coverage at work, her benefits were short-lived.
Things suddenly took a turn for the worse. In 2012, right after her maternity leave, Sparaga had a serious flare-up. "My body just attacked itself," Sparaga says. "I ended up in the hospital for 17 days."
Once discharged, Sparaga couldn't walk, let alone work. She required a walker to move around and spent two years sleeping in a recliner due to pain. She was incontinent. She was unable to care for her children. And due to her mobility challenges, she was forced to sell the townhouse she shared with her partner and move to a rental apartment.
While the numbers of younger people struggling with chronic illness like Sparaga are not well-documented, many face the costs of the medications, treatments, accommodations, home care costs and child care expenses – as well as the impact of lost income. Often, an illness strikes just as their careers are advancing, moving into more senior roles and earning higher incomes. However, with more buying power, they also have taken on big financial burdens, such as car payments, mortgages and child care expenses.
With more than one in five Canadian adults living with cardiovascular disease, cancer, chronic respiratory disease or diabetes, according to the Public Health Agency of Canada (PHAC), stories such as Sparaga's are increasingly common. And they will continue. Since 2000, the numbers of Canadians with chronic conditions have been going up consistently. Nearly one in eight (11.7 per cent) of Canadians 65 and older have at least two of the four major chronic diseases: cardiovascular disease, cancer, chronic respiratory disease and diabetes.
Many Canadians falsely believe that their drugs will be covered by their provincial drug plan, which is often not the case, says Deb Maskens, co-founder at CanCertainty, a coalition of cancer groups advocating for access to medications. If a person has cancer and is prescribed chemotherapy medications that are administered in pill form rather than intravenously in a hospital setting, those drugs are no longer covered by the province.
"People then look to private insurance," says Maskens, herself a cancer patient. "But increasingly, private insurance plans are putting limitations on what they will cover." She says many employers cap drugs costs annually, leaving patients to pick up the remaining costs.
Maskens says products such as disability insurance can save the day, but should ideally be purchased at a young age to ensure lower premiums and avoid pre-existing conditions clauses. "Get as much insurance as you can," she advises.
Ultimately, if a person is permanently disabled, they can apply for disability from the federal government.
Now 41, Sparaga is in that situation. "I own nothing," she says, "no assets, no savings – and I'm on a seven-year lease for a used car." She lives on $3,600 a month, receiving $666.21 in Ontario Disability Support Payments for shelter, basic needs, her special diet and incontinence supplies and $1,995 per month in CPP payments, as well as $1,000 a month in child credits.
Her son, now 16, was diagnosed with cancer when he was 12 and now receives $480 a month in cancer benefits. For her daughter, whom she had with her second partner, she receives $200 in child support payments.
Now a single mother, she is required to provide a bedroom for each child and rents a three-bedroom in Burlington, Ont. for $1,403 a month. That leaves $2,197 for groceries, her supplies, her car and school supplies for her kids.
Sparaga never thought she would be faced with a lifetime of counting pennies and wondering about her future. "I've been working since I was 12 … it is so upsetting."
Lots of paperwork
Becky Knifton, 36, saw her life change five months ago. On Jan 27, she was diagnosed with a rare form of blood cancer called chronic myelogenous leukemia, which though incurable, can be managed with drugs.
But the drugs are costly and despite working two jobs, she can't afford them. "My cancer drugs cost $4,000 a month," says Knifton, who is a single mom living in Shakespeare, Ont. She says that as an insurance underwriter she thought her drugs would automatically be covered under her employer's drug plan. But because her employer has put in provisions to manage drugs costs, she was granted coverage for six months, which is up for review this July.
Worse was the application process for the coverage, which required assembling masses of documents from physicians and hospitals and submitting them – while coping with a life-changing diagnosis as well as symptoms. "It took two weeks," Knifton says. "I was sitting at home and freaking out. It was two weeks of pure terror."
Knifton says her critical illness policy that she had purchased through her employer, has paid her out $25,000, which has helped defray some costs. But she's anxious about the future.
"I'm only 36 and I have to take this for the rest of my life," Knifton says. "Never in a million years did I think I would be facing thousands of dollars in medical costs that might not be covered." She says if her employer denies the coverage, she will apply to the Ontario Trillium program, which will still require her to pay 4 per cent of her annual income towards the payment of the drugs, a cost she worries about.
"You can't take blood from a stone," she says.