How can health policies be crafted to support people coping with long COVID?
An interview with Alyssa Minor, a physiotherapist from the pandemic front lines
Kerry Kittson is a graduate student at the Max Bell School of Public Policy at McGill University and is from Ottawa, Ontario. Kerry is a registered physiotherapist and has a keen interest in health policy. Her recent work includes serving as part of the Ontario Ministry of Health’s COVID-19 workforce. She also serves as Academic Director with the Public Policy Association of Graduate Students.
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THE WORLD HEALTH ORGANIZATION (WHO) declared COVID-19 a pandemic on March 11, 2020; the two-year mark has passed, ushering in a mixed bag of emotions. Despite the onslaught of pandemic-related media, a cohort of COVID survivors who are seldom discussed are the estimated 150,000 Canadians coping with long COVID. Those diagnosed with post-COVID-19 condition, as it is officially referred to by the WHO, have not returned to full health after contracting COVID-19.
Cohort studies have found that up to one-third of COVID-19 outpatients (patients who were not hospitalized) experienced at least one persisting COVID-like symptom, but up to 200 long COVID symptoms have been characterized. Many people with long COVID have been unable to return to work or other daily activities. To support this growing, equity-seeking cohort, solutions are needed at all levels of government. Pertinent solutions include patient-led research, the education of health care professionals, improving disability insurance policy, and centering people with lived experience at the decision-making table.
What is long COVID and who is most affected?
Before policy solutions can be crafted, policymakers must seek to understand long COVID. According to the WHO, long COVID is a constellation of mid- and long-term effects including fatigue, breathlessness, and cognitive dysfunction (e.g. confusion and forgetfulness). Long COVID symptoms can affect a person’s ability to work and perform household chores, and some symptoms may come and go, or relapse overtime.
About half of long COVID presents like myalgic encephalomyelitis (M.E.), characterized by post-exertional malaise. The majority of those affected by long COVID are working-aged women between the ages of 30 and 60. Many contracted COVID-19 while working as health care professionals.
A Physiotherapist’s Journey with Long COVID
Alyssa Minor is a physiotherapist in Calgary, Alberta — a classmate of mine from Queen’s University. After working in a hospital on the front lines of the pandemic for close to a year, Alyssa contracted COVID-19 at work in January 2021. After her initial isolation period, she worked half-days for a week, but her symptoms prevented her from continuing to work. The Worker’s Compensation Board (“worker’s comp”), fortunately, accepted her claim. She has been receiving supports ever since and is not yet able to return to work:
“There are people with long COVID without the security of worker’s comp who are losing their jobs and homes. I am in a position of privilege because I have been able to receive disability benefits.” – Alyssa Minor, PT
Now one year later, though in her mid-thirties, Alyssa can only walk 1-2 blocks before experiencing symptoms. Alyssa’s experience with the worker’s comp rehabilitation program in Alberta also involved a role-reversal, as she helped to educate her health professionals:
“As a physiotherapist, I helped my team understand the care I needed. As rehab professionals, we think we understand energy impairment and energy conservation, but this is more than ‘just take a break.’ You have to cut your activity level in order to live below symptom thresholds and avoid triggering post-exertional malaise.” – Alyssa Minor, PT
This speaks to the need for education for all health care professionals on long COVID, ideally with help from professional associations and governing bodies. Alyssa holds that though governments have been quiet on the topic of long COVID, professional associations don’t have to be. One thing that Alyssa wants to stress is:
“It is important to recognize that long COVID, and other post-infectious illnesses, are biomedical illnesses. Our symptoms are too often and incorrectly psychologised. While mental health supports are important, mental health is not the underlying mechanism of illness, here.”– Alyssa Minor, PT
People with physical or mental illness should be free from stigma. However, it is important that education on long COVID stresses the biology of the illness first, to garner appropriate research and medical interventions.
Applying the Equity Lens to Potential Solutions
Considering that the majority of people with long COVID are women, programs and policies need to be developed using Gender Based Analysis Plus (GBA+), an analytical process that assesses how women, men, and gender diverse people may experience health initiatives differently. There are intersectionalities, including poverty, race, and gender, that need to be addressed:
“We need to build solutions and partnerships with intersectionalities in mind. Women are historically at risk of being harmfully and incorrectly labelled and psychologised. This especially happens to racialized women. This misogyny and racism in medicine has been around for so long and is so harmful. And now it's being applied to long COVID, too.” – Alyssa Minor, PT
Long COVID has also been exposing gaps in the health care system that were there before the pandemic. One potential challenge for policymakers to consider is how to connect the public-private health care divide. Specialized COVID-19 clinics have started to open in Canada, but the need is too great – the supports are simply not enough, stressing the education piece even further:
“We need to think beyond long COVID clinics built on annual funding models. Instead, addressing education gaps is more realistic to ensure health professionals in every practice setting have some understanding of how to help.” – Alyssa Minor, PT
Patient-led Research
Policymakers often look to evidence and experts to craft policies. However, it is difficult to determine the best evidence, and what an ‘expert’ really is. Researchers should consider patient partnerships:
“People with lived experience should be embedded at every level – policy writing, research design, education and resource development. Building from existing information is also necessary. Unfortunately, we have already seen a duplication of work and a waste of time and money in long COVID research from those not learning from related illnesses. Post-infectious illness isn’t new. We must learn from pre-pandemic experts in the field.” – Alyssa Minor, PT”
Patient-led research would represent a powerful paradigm shift in how research is conceptualized and conducted and may ensure research outcomes that are more helpful for patients.
The Understanding of Disability
There also needs to be a better understanding of what disability looks like not only for long COVID but for all disabilities. Funding policies for mobility aids (e.g. wheelchairs) often take a black-and-white approach; if a patient has paralysis and cannot walk, for example, there is no question that they would receive an appropriate wheelchair for their needs. It is a grey area, however, when it comes to illnesses like long COVID:
“Funding policies do not often reflect the lived reality of those with disability and illness, yet a change in policy to meet our needs would be more fiscally responsible. For example, funding power mobility aids can make access to employment more feasible for people who cannot walk consistently but could otherwise be in a work environment. While funding for power chairs is typically reserved for full-time users, some ambulatory wheelchair users [wheelchair users who have the ability to walk] cannot independently use a manual chair due to energy impairment and post-exertional malaise. Without funding power wheelchairs for this cohort, they cannot independently access the community.” – Alyssa Minor, PT
Policies of mobility aid funders, therefore, need to evolve in tandem with an evolving understanding of disability, including long COVID. People with lived experience should help develop the definition of disability and to help dispel stigma.
Disability Insurance
Another issue to consider is that many insurance companies deny disability benefits due to the lack of a positive COVID-19 test. Payouts should instead be guaranteed by insurance companies as long as symptoms meet the definition of disability as set out in the policy. Denying claims adds financial stress on top of the physical and mental stress of long COVID. Also, the WHO definition of post COVID-19 condition is “the illness that occurs in people who have a history of probable or confirmed SARS-CoV-2 infection.” Even in the absence of a positive COVID-19 test, if it is probable, there need to be other mechanisms to receive disability benefits:
“In the absence of a positive test, a doctor's note confirming long COVID should be sufficient. This doesn't fully address barriers for those without a physician or who have difficulty accessing healthcare, but the point is that a PCR test benchmark doesn't make sense.” – Alyssa Minor, PT
There is some good news: as of March 1st, 2022, BC’s Ministry of Health no longer requires a positive PCR test for patients to access long COVID recovery clinics. Disability insurers in Canada should follow suit.
The Importance of the Lived Experience
Researchers, and policymakers at every level of government, need patient partnerships to help produce more impactful research and enact equitable solutions. Alyssa also stressed that lived experience should not be tokenized or treated as a checkbox at decision-making tables:
“There is a big difference between trying to make someone feel heard, and actually listening to, learning from, and applying the lessons from that experience.” – Alyssa Minor, PT
Policymakers not only need skills related to economics and the machinery of government, but they also need empathy. Alyssa asserts, however, that decision-makers must go beyond empathy:
“The only way to get it right is by centering marginalized experiences like long COVID and M.E., but also racialized minorities, women, LGBTQ+, and people experiencing poverty or houselessness. Empathy will only take decision-makers so far. You need the lived experience.” – Alyssa Minor, PT
A Call to Action
In closing, considering that an ounce of prevention is worth a pound of cure, Alyssa leaves us with a call to action:
“The best way to prevent long COVID is to not contract COVID. It is critical for public health guidelines to remain vigilant, and for the public to continue to heed these guidelines.” – Alyssa Minor, PT
A special thank you to Alyssa Minor for participating in the interview for this article of The Bell and sharing her breadth and depth of insights from navigating long COVID.
The Bell is edited by Jaclyn Victor, Jason Kreutz, Shweta Menon and Phaedra de Saint-Rome of the Max Bell School of Public Policy at McGill University.