Public Health
Michael Warner defines a public, as “an ongoing space of encounter”. A public can be “a concrete audience, a crowd witnessing itself in visible space”, the audience for a lecture or a performance, or “a space of discourse organized by nothing other than discourse itself” – the readership of a publication and the analysis, gossip, and response that swirls around it. The public of an essay might be a few hundred people, or millions of views for the viral main-character-of-the-day, spiralling out until people are engaging with its secondary or tertiary commentary without having read the original. In technology, we use the term to mean “unlocked”, as in a public social media profile. In government, we use it to mean the people of this country, or the province, a more inclusive, flexible, replacement for “citizen”.
The public of public health is equally broad, the population or community as a whole, the diseases that could feasibly pass amongst them, and the programs and measures to protect them. Public health policies seek to protect the body politic (e.g., mass vaccination or water filtration) but are communicated as though the recommendations are in the best interest of every individual — a standard body that needs only generic guidance to be well. It is based, in part, on what public health agencies think the public will respond to and comply with, not necessarily the most evidence-based option. Public health considers the human response to information, but not individual health and information needs. In a crisis, it trends to the declarative and the mandatory to enforce broad compliance, making it harder to opt-out or adapt requirements for your own unique complex body.
I have a regular economic debate with my cardiology department. The front staff won’t let me book an appointment without a 24-hour blood pressure monitor, using a device that inevitably stops working several hours into the test, never produces results that change my treatment plan, and requires two trips to the hospital. In the meantime, I’m redirected to the ER for issues that should be managed by my medical team; request prescription renewals and dosage changes through my pharmacist. As a Long COVID patient, you often live in the almost-urgent category, with damage and dysfunction too subtle for most emergency medicine tests; too complex for family medicine, which is either not permitted to prescribe what we need or unwilling to take on the risk of monitoring the latticework of interconnected mechanisms and side effects.
As patients, we cost the health care system considerably, even the components of our condition with clear clinical guidelines require trial and error prescriptions and ongoing monitoring. Not treating us is also exorbitantly expensive. Nothing about how the cardiology department treats me, administratively, organizationally, is specific to me; it is a policy intended for the most common cardiology patient, with the most common conditions and demographics.
It is uncouth to say, as someone who works in public policy, who believes in public health interventions, but most public health mandates in the pandemic made me sicker. Requiring only surgical masks in medical settings meant seeking care risked exposure and immune system flares. Restrictions around cross-household contact cost me in-person support. Virtual medicine meant my case was only taken as seriously as I could self-report. Vaccination rules that didn’t consider prior infections or dosages based on individual immune system responses, exacerbated my condition. General clinical guidance on post-covid treatment has been initially wrong on nearly every count. My long-term relationship ended when my once girlfriend had to choose between an international work trip and a two-week travel quarantine or visiting me, a policy out of line with incubation periods and designed in part to counterweight the failure of masking policies and the inaccuracy of tests.
When the pandemic first hit, I pivoted the research program I was running to study covid as an occupational disease, gaps in our health and social safety nets, and how to help the economy recover post-lockdown. I muddled my way through two published papers, before I acknowledged I’d all but lost the ability to read and write to neuro-inflammation and impaired blood flow to the brain. You cannot study any illness, without considering the socio-economic factors, the cost and insurability of treatment, the degree to which it weights the decision scale for workers leaving their employment. You especially cannot study an illness that was, in the early days, heavily spread through work, schools, and commutes, with widespread population-level impacts, without looking at numbers beyond prevalence. If I had received treatment sooner, instead of a year after my first cardiology referral and two years after viral onset, I would have cost the system far less money, contributed more to the economy and my communities.
In grad school, microeconomics was taught by a professor who specialized in the measurement of poverty, with papers on “estimating the marginal effect of income on material deprivation” and absolute vs relative poverty. Our final project was a cost-benefit analysis of a socioeconomic policy intervention: how much does it cost, and how much money does it save when looked at holistically? If the municipal government offers a Housing First program to people who are homeless, how much does the city save in policing costs for the crime of not having a home to sleep in? How much does the Ministry of Health save in emergency room visits? I liked the clean math of it, the slick algebra of microeconomics reducing the world down to measurable variables, the idea that there might be a right answer and a way to force collaboration. Today, economic media still publishes some of the best coverage on long covid because the labour data is unavoidable: people are sick, and they are not returning to the same job, or schedule, or to work at all, and the loss of trained experienced professionals is damaging productivity and burning out healthy colleagues. In any large workplace, the statistics of illness among your colleagues is unmistakable.
The challenge is that very little actual policy is developed by weighting the benefits that further another ministerial mandate or reduce another department’s budget. Most complex problems sit at the messy intersection of jurisdictions. Different departments are responsible for monitoring workers leaving the labour market due to illness and overall sectoral productivity. Others set budgets for long covid treatment programs or funding for residencies for medical specialists, immigration policies for internationally-trained doctors, or labour laws on sick days.
If you get sick in Canada, in a unionized job with long term disability insurance, you might get up to 80% of your salary. If you are less lucky, you might qualify for EI sickness benefits, at 55% of your income to a maximum of $668/week. Canada Pension Plan Disability Benefits pays an average of $1176.98/month and maxes out at $1606.78. If you were not working, provincial disability assistance in Ontario is $1,368/month and comes with significant limits on assets, savings, medical purchases, and household income. For those ineligible, which is many, social assistance is $733. It’s not a cohesive or fair policy system and the disparities are in part due to which level of government or department your situation falls under. The recently-working body (both mechanically and economically) is literally, measurably, worth more to the government than one that does not work, because you are a more insurable investment with the potential of future productivity. In the social service world, we call this “distance from the labour market”, a euphemism used to describe income assistance recipients who need more supports than are readily accessible to start or return to work, such as addictions counselling, Canadian certifications of international training, or language classes.
In an argument, my once girlfriend told me that no matter how sick I got, no matter how expensive my health bills, she would not contribute money or resources to help. At the time, she was stricken with irrational fear that her nuclear family might need the resources someday, that my unpredictable health would outweigh my contributions to our community. Her wife’s cancer had been diagnosed and surgically removed in private practice for sake of speed and the ability to schedule at least one element of treatment definitively. Money was a defence against unimaginable loss and public health failures, a magic spell to get more individualized care. When we are scared like that, our emotional math is exponential, not additive; we hoard, we hide, we remove variables and recalculate, we redraw boundaries, we make impossible bargains with capitalism like we’re negotiating with jinn or shedim, the countless ephemeral demons behind the seemingly natural and unnatural forces of the world.
Being sick is a constant tabulation of cost-benefit and cause and effect. Will taking a cab instead of transit cushion the symptom flare the activity will trigger? Are a medications’s side effects worth the potential benefits? Will asking for help yet again strain my remaining relationships? Patients are encouraged to calculate steps, effort levels, pulse pressure, sleep quality, nutrition, to do the math of measuring how badly things are going, to substitute self-monitoring for effective follow-up and timely tests. It can feel almost superstitious or religious, the small prayers and ritual motions and documentation of a life, but I never feel I sufficiently understand the problem to map the whole calculation the way I know how to do in economics.
Science-minded friends trade studies with me, puzzling over increasingly interconnected and microscopic mechanisms of a body unwell, the unspoken and conflicting conjurings of the medications our doctors were too busy to explain, the cascading variables that can spiral into severity. Slowly, we’re building a theory of what goes wrong in the body that belies the distinctions between the medical specialties that fail to treat us, and the diagnoses we have on paper. Journalist Ed Yong, says, “A field that stigmatizes the admission of ignorance, will shunt the uncertainty of complex diseases onto patients….a field that divies the body up into organ-specific specialities will struggle to understand conditions that ravage the entire body.”
Long COVID ravaged my life and cost me more things than I can count. A relationship in which we’d talked of growing old together and the community that grew around and held us. A profession I could no longer perform well in and public talks my once girlfriend petitioned to have cancelled for fear I would speak too honestly about illness and loss. Lovers and would-be-lovers who mistook my waxing and waning capacity for fluctuating interest or misunderstood me when I was struggling with words. Invitations to activities it is presumed I’m too sick to attend, and the friendships those activities sustained. The kind of visibility in community that requires you to show up, regularly, in the ongoing space of encounter, until you become recognizably approachable or connect your way into more solid social webs. I lost momentum on every aspect of life, in areas I’d sunk costs and years into.
The socio-economic cost of every long covid patient leaving work and public spheres should be a public policy alarm, demanding whole-of-government actions: prevention, treatment, disability accommodations, labour laws, retraining programs, a fundamental change in how we think about the binary of sickness and health. But instead patients are mostly fending for ourselves. Ironically, we’re still the ones most likely to be following now-defunct public health guidelines: masking in indoor crowds and isolating when symptomatic, navigating the ongoing space of encountering disease. And so, in the fifth year of the pandemic, as waste water testing is shuttered, as the public sector is returning to the unfiltered air of the congregate office more days of the week, I keep writing to recirculate ideas into the public sphere that many patients are still too sick to enter.
The Impairing Curse is a long-form, serialized experiment in personal essay, science journalism, policy analysis, and poetry. To start at the beginning and read it in order, go to the first essay or read about fainting, water therapy, and the aesthetics and labour of illness. To support this project, share it online or subscribe.