Canada as most of you know is having a conversation about national pharmacare. We believe SCI BC peers should pay attention and even join the conversation because, as new research demonstrates, they stand to benefit immensely.
Recently, Dr. Shikha Gupta, a Rehabilitation Sciences PhD graduate at Queen’s University, completed a national survey of 160 Canadians with SCI about their prescription drug use and the out-of-pocket costs they have no choice but to absorb. The findings, which were recently published in the journal Spinal Cord, are shocking: individuals with SCI have to pay five times more in out-of-pocket expenses than the average Canadian household. But that’s just one part of the story. The survey also revealed that these costs, particularly when combined with the other extraordinary out-of-pocket expenses related to life with SCI (such as adaptive equipment, mobility aids and continence supplies) and incomes that are far lower than the national average, too often have the disastrous consequence of people rationing or even not purchasing medications that their physicians clearly want them to take.
PRESCRIPTION MEDICINES SURVEY RESULTS
The survey, conducted online, revealed that the 160 participants used an average of five medications, for which they paid out of pocket a median of $197 per month (which is roughly five times the national average). This includes direct costs for those with no insurance, along with copayments, dispensing fees and deductibles for those who had some form of drug insurance (of which more than 90 percent of participants had some form of). Perhaps most alarmingly, 37 percent reported cost-related nonadherence (CRNA) to their prescription medications—in other words, almost 40 percent of participants simply could not afford their meds. For comparison, the national average for CRNA is less than 10 percent. The most common medications that were forgone due to cost included opioids, antidepressants, and drugs to control spasticity. Female participants, and those who had the highest monthly drug expenditures and additional healthcare costs, were more likely to report CRNA.
In addition to providing those eye-opening numbers, Gupta believes the study debunks three common myths. “The first,” she explains, “is that people with disabilities are ‘welfare’ recipients and, as such, benefit from full drug coverage. This study proved that many of them do not receive adequate drug coverage and spend a significant amount of money to purchase their medications.
As well, it seems to be widely believed that drug insurance alleviates the financial burden to access prescription medications. However, the study showed that people face financial barriers to obtaining medications despite having drug insurance, due primarily to out-of-pocket costs in the form of co-payments, deductibles and premiums.
Although these costs look nominal, they all add up and lead to CRNA. Finally, we tend to think that people don’t discuss cost-related nonadherence behaviours with their doctors. In this study, people with SCI tried to actively seek help from their prescribers and asked them to find low-cost therapeutic alternatives.”
The study also attempted to pinpoint the amount of money participants spent on additional healthcare above and beyond prescription medications. “On average, they spent around $400 per month on additional healthcare needs, which included costs for catheters, wheelchairs, special diet, or skincare supplies,” says Gupta. “Note that these costs did not include those for over-the-counter medications, home modifications, vehicle adaptations, attendant care, and the cost of other rehabilitation services that people with SCI may need.”
Not surprisingly, Gupta says all of this together combines to significantly impact the lives and wellbeing of people with SCI.
IMPACT ON PEOPLE WITH SCI
“In my view, this study concludes that the financial burden on Canadians with SCI is prohibitive, which has negative consequences—not only for their health but also for their overall quality of life. In a subsequent study, my participants shared that they felt they were trapped in a vicious cycle of financial scarcity and were facing constant stress about having enough money to pay for their medications and other essential needs such as food, clothing, wheelchairs, or catheters. These stressors deteriorated their health, caused exacerbation in their symptoms which ultimately impacted their quality of life, and caused them to use more healthcare services that could have been avoided.”
Her message to readers is that, as we wait for news of a national pharmacare program that levels the playing field, there may be options. “Forgoing your meds due to cost may have negative outcomes for your health,” she advises. “Talk to your doctor if you are facing financial barriers to pay for your medications. They may be able to help you—for example, by applying for provincial drug programs or prescribing lower-cost alternatives.”
Her message to pharmaceutical policy-makers at the provincial and federal levels is to eliminate the systemic barriers inherent in drug insurance schemes. “For example, the processes to get coverage through the provincial drug benefit programs should be simplified. Public formularies should provide generous coverage to the drugs that are required by people with diverse disabilities.“
The heavy deductibles to meet eligibility requirements for exceptional drug coverage should be reconsidered and wait times to get approvals should be minimized. People with disabilities may appear to have minimum basic income on paper, but in reality, they may not have enough money to meet the minimum standards of decent living. Therefore, any public assistance scheme, including national pharmacare, that does not consider the additional barriers faced by people with disabilities may not fulfill the intention of financial risk protection in a true manner.” For Gupta, who grew up and worked in India as an OT prior to coming to Canada in 2016, the subject has long been fascinating.
FUTURE RESEARCH
“In India, many low-income families incur catastrophic expenditures for basic essential healthcare, out of which around 60 to 70 percent goes to medications. This places most of families into debt. My interest in the topic of access to medicine emerged from there. When I came to Canada, I observed that health inequalities exist in every part of the world; that despite having free healthcare, Canada doesn’t provide complete coverage of prescription drugs. When I started to follow this issue closely, I found absolutely no literature that explores medication cost burden on people with disabilities, which is why I pursued this study.” Not surprisingly, it’s a line of research that she’s already exploring further.
“Presently, I’m analyzing the use of over the-counter medications by people with SCI and the associated costs. My big plan is to apply for post-doctoral funding to develop a cost-sensitive electronic tool for physicians that can bring drug cost information to them at the point of prescribing. This tool will be embedded into the native workflows of prescribers and help them choose low-cost alternatives for their patients who are at risk of forgoing their medications due to cost. I am hoping to create this tool, which will bring patient-specific cost information, coverage restrictions and therapeutic alternatives at the point of prescribing.”
This article originally appeared in the Fall 2020 issue of The Spin. Read more stories from this issue, including:
- Vancouver Musician with Adaptive Gear
- The Joy of Walking? Stories About Incomplete SCI
- Cannabis & Blood Pressure
And more!
