Additional Expenses and Out-of-Pocket Care Costs

The people we spoke with told us about the additional expenses and out-of-pocket care costs they faced as they lived with long COVID. Some had to take taxis to get to appointments because they could no longer drive. Others had to travel long distances for treatment which meant they faced costs for travel and overnight accommodation. There were people who required adaptive devices like wheelchairs or mobility scooters because they could no longer walk without experiencing exhaustion. And several people living with long COVID needed outside help with cleaning, cooking and childcare. Special diets were sometimes suggested and could be costly. In addition, some of our participants faced out-of-pocket costs for prescription and over the counter medications, treatments, and services that were not covered under provincial healthcare programs.

 

Additional expenses

Several of the people we spoke with described the additional expenses they faced because of long COVID. Carrie 1 told us “There was nobody in [city] at all, any specialist knowledgeable about long COVID. A lot of that was out of pocket, I had to have friends drive me [to another city]. I had to stay in hotels.” Christine lives in a rural area. She found it helpful to access services such as massage therapy and chiropractic care but her “shortest distance … would be an hour and a half round trip.” One 15-minute test she required involved a “four hour round trip.” And because the price of gas was so high, travel had become a considerable expense. She estimated that “Over the course of two years,” she had spent, “at least $5,000.00 in gas.” 

Jennifer 1 was having digestive problems. Her dietician suggested she try the FODMAP diet, a diet often used to manage stomach pain and irritable bowel syndrome. But, as Jennifer explained, “The FODMAP diet is extremely expensive … you have to be lactose free, gluten free, onion and garlic free … I’m finally seeing some improvements, but it’s stressful because … gluten free things are still more expensive than regular things … it’s definitely adding to the financial stress.” Tanya was also “testing out to see if different foods are bothering me.” She said, “I mean, prices have gone up a lot anyways, but when you’re buying specialty items they’re just that much more expensive … It’s definitely created a financial burden.” Paulina was receiving workers’ compensation that covered her physio and occupational therapy. However, it didn’t cover other health-related expenses. She needed compression stockings and told us, “They did cover one pair, although I do need more than one pair and they’re expensive. They’re like $120 a pair. And I need at least three to alternate so I can wash them and dry them. So that was out of pocket.”

 

Cost of prescription medications and over-the-counter products

Some of the people we spoke with were taking many different prescription medications to manage their long COVID symptoms. For Aislene, “a three-month supply of all of my medications is over $1,000. And when you don’t have insurance that’s almost impossible.” Lesley is self-employed and has no insurance coverage for medications. She told us, “These experimental drugs that I tried, $100 for a bottle of pills – you take one, you have a reaction, you give them back to the pharmacy.”  Nicole had sought care in the United States because she felt there was more available there. She was prescribed an HIV medication off label which was costing her $1,100 per month. But, she said, “I wasn’t functioning without it, so for me it’s a no-brainer.”

Many of the people we spoke with were also trying out supplements and other non-prescription products to try and manage their symptoms because they felt that conventional medicine had been unable to help them. Wayne told us he was spending “hundreds of dollars” on supplements. This was “more money than [he] could afford” but he felt he had no other option. Tanya was similarly “paying out of pocket” for “all kinds of … vitamins and supplements.”

 

Out-of-pocket costs for medical care

Several of the people we spoke with had been referred to conventional specialist care that was not available in the public system or had sought out private practitioners because they couldn’t get help within the mainstream system. Katherine had been referred to a neuro-ophthalmologist because of problems with her vision. She was “in a holding pattern” waiting to find out whether workers’ compensation would pay for this very expensive treatment. Jean had a similar experience. She was referred to a neurological eye clinic but, discovered, “Unfortunately, they don’t work with OHIP (Ontario Health Insurance Plan) and I checked with my insurance and they don’t cover anything like that either and it’s pricey.” Elaine needed a diagnosis in order to qualify for support services. “There was a 20-month waiting list” at the only clinic that offered what she needed. She told us, “I’m looking elsewhere and I’m looking at paying out of pocket to get the kind of treatment I need and get a diagnosis so that I can get things like homecare.”

 

Mental health care not covered

One of the most widely shared concerns among the people we spoke with, was the fact that there was almost no coverage for psychological services or other forms of mental health support in the public system. The stress of living with long COVID was often overwhelming and many people were struggling with anxiety and depression.

 

Costs of rehabilitative care

Some of the people we spoke with had been referred to, or had sought out physiotherapy, osteopathy, massage therapy, chiropractic and other forms of rehabilitative care. A few of these people had workers’ compensation support because they were infected at work. Some had private insurance that offered coverage, although this was often limited. Others had no financial support and had to pay for these services out of pocket. As Lesley explained, “You often get referred to physiotherapists for pain management or chiropractors for pain management – again not covered by OHIP (Ontario Health Insurance Plan) – super-expensive.” 

Valérie had seen a kinesiologist but only because her parents had been able to cover the cost. « J’ai été vue par une kinésiologue, ouais, c’est ça, une kinésiologue là-bas. Il a fallu que mes parents défraient les coûts parce que moi je n’ai naturellement pas aucun salaire entre-temps. »  [I was seen by a kinesiologist, yeah, that’s right, a kinesiologist there. My parents had to cover the costs because I naturally don’t have any salary in the meantime.] Translation from original French. Violaine was paying out of pocket for physiotherapy because she felt it was necessary for her recovery. « Donc pour ma part, il a fallu aussi que je paie certains services en physiothérapie, je paie de ma poche. Ce n’était pas couvert par mes assurances du tout, pour continuer à avoir des trucs, des moyens d’essayer de récupérer. » [So for me, I also had to pay for certain physiotherapy services out of my own pocket. It wasn’t covered by my insurance at all, so I could continue to have things, ways of trying to recover.] Translation from original French. While Angela told us, “I’m probably at this point spending $600 a week on other therapies, chiropractor and stuff like that. Thankfully, my husband has really good benefits. Most people would have been out of benefits by now. And what do you do then?”

 

Alternative care costs

Many of the people we spoke with had sought care from alternative health practitioners including naturopaths, reiki practitioners, reflexologists, and acupuncturists because they were hoping for answers and relief from symptoms which conventional healthcare providers had not been able to help them with. As Valérie put it, « On essaie de trouver des moyens en dehors de la médecine traditionnelle pour nous aider, puis de la réadaptation puis là finalement je me retrouve que je ne peux pas nécessairement me payer des soins que j’aurais besoin. » [We try to find ways outside traditional medicine to help us, then rehabilitation, then finally I find I can’t necessarily afford the care I would need.] Translation from original French. While some had a certain amount of coverage for these services, it was often limited. Out-of-pocket costs for alternative care could be considerable. For example, Christine estimated she had spent $6,000-7,000 on naturopathic care but says, “I’m glad I did it at the beginning because it maybe helped – all the supplements and things that I had right from the get-go.”

 

Inequity of access to care

Because out-of-pocket care costs are so high, some people simply could not afford them. This led to inequitable access to care, fewer options and, as the people we spoke with often observed, poorer health outcomes for people who have limited income.