As COVID-19 precautions continue to erode, immunocompromised people are left even more isolated without a path forward to normalcy.
A regular part of having multiple sclerosis (MS) is having blood work done to make sure the immunosuppressants I take to keep it in check are doing their job. What was new this last visit was that some staff and patients were unmasked.
I hadn’t heard the announcement, but only a few days earlier, UW Health had rolled back masking requirements in many of its clinics. The sight of a nurse smiling would normally put people at ease, but as I watched this person show up in a good mood for work, all I could think about was how dangerous it could be for me to be stuck in a room with an unmasked healthcare worker.
I was diagnosed with MS in the height of the pandemic. A numb spot on the bottom of my foot slowly crept up my legs until I couldn’t really feel anything but my chest. As an autoimmune disorder, MS turns my B cells into assassins that target the protective sheath around my spinal cord, causing inflammation that triggers extreme nervous-system responses and partial shutdowns. Most people with MS experience some loss of coordination and movement. I’m one of the lucky ones—when my first flare-up passed, I regained most of my mobility. The drug I now inject into my thigh once a month is a type of monoclonal antibody that eradicates all of my B cells. It’s been effective at preventing any new flare ups, but B cells are what makes antibodies. Without them, I’m extremely vulnerable to infections.
The COVID-19 pandemic has been a nightmare for the immunocompromised. We make up around 3% of the United States population, close to 10 million people, and the last three years of our lives have been defined by one simple truth: any interaction with another person could kill you. At one point, a monoclonal antibody treatment called Evusheld was promoted to give us more protection, but this last February, it was ruled ineffective for modern strains and discontinued.
As if right on queue with disappearing protections for the immunocompromised, local and national governments started rolling back COVID-19 public services. In March, Public Health Madison & Dane County announced that it would close its free testing clinic as of April 14. In April, President Biden signed a bill that ended the COVID-19 national emergency declaration. And now, in May, the CDC has stopped reporting new COVID-19 infections. I would like to say that all of these measures are coming together to create a perfect storm of rampant COVID-19 spread, but without accessible PCR testing and new infections being reported, I don’t have access to data that could prove my hypothesis true or false.
As more and more people go about their lives without regular testing, masking, or getting vaccine boosters (which is a horrendously low rate for people under 65), the world has become more and more dangerous for the immunocompromised. I used to wonder if I’d be able to eat inside a restaurant again. Now I wonder if it’s even safe for me to go to the clinic for my regular check ups.
All facts and figures aside, it’s difficult being immunocompromised in Dane County. The county boasted extremely high vaccination rates when vaccines were first available, but the bivalent booster adoption rate is mostly in line with the national average. Businesses everywhere pulled their masking requirement when they were able to do so, and while more people in Madison voluntarily mask up than other cities I’ve been to, it’s still maybe one in five people at best.
Aside from a wave of general indifference sweeping the population, we also face outright hostility. On New Year’s Eve at the end of 2021, my partner went out to grab takeout from a fried chicken pop-up at a bar. When she walked up to the counter, fully masked, a guy who had been drinking told her to take her mask off. Taken aback, she explained that she had an immunocompromised partner at home. “Take it off anyway,” he said. “He’s just going to get it eventually and die so what’s the point?”
The end of masking and low booster rates are indicative of a type of individualistic mindset that’s impossible to avoid in the US. The discussion around COVID-19 precautions has been treated as a personal risk assessment instead of a matter of public health. Vaccines and boosters help protect you from severe illness, but they don’t prevent you from getting infected. People stopped getting their booster updates, but staying on top of boosters prevents you from spreading COVID to others.
The same selfish calculations apply to masking. We know that masking works extremely well at preventing you from spreading COVID-19 to others, but since it’s less effective at preventing infection from someone else, people abandoned masking as soon as they could. When curbing the pandemic relied most on people adopting a community mindset, there was one clear message that was projected by the general population: Fuck community, I’ll be fine.
It’s not like Wisconsinites aren’t able to adopt a community mindset altogether, however. When Aaron Rodgers contracted COVID-19 in the fall of 2021, there was a brief outrage about such a high-profile person intentionally skirting vaccine requirements. That didn’t stop people critical of his behavior from cheering for the Packers through the rest of the season. When Rodgers admitted to lying about his vaccination status last summer, people were more angry at his poor playoff performance. It’s hard to see friends and neighbors prioritize a sports team’s performance over my life, but the reality is that Aaron Rodgers refusing to get vaccinated opened him up as a potential superspreader vector in the state that I live in. I’m guessing the odds are extremely unlikely, but sure—there’s a chance that Aaron Rodgers could have killed me. The community spirit triumphed in support of the Packers, even when it fails to protect the immunocompromised.
Of course it’s easier to focus on Rodgers: he’s extremely high profile, and he got caught. But that still leaves thousands others who are still unvaccinated in Dane County who exist as invisible timebombs that I have to pass by daily. And then there’s also the total number of cases to contend with. As this is being written, 172,701 people in Dane County are reported to have COVID-19, at least that we know of. Without public testing sites, stay-home mandates, or widespread masking, what’s to keep them from being the person who checks me out at the grocery store? Or makes the sandwich I ordered for lunch? Or, in the worst-case scenario, visits Urgent Care for a broken finger at the same time I go to get blood work? When the county had testing sites, that data was logged and published to help people understand the risk of COVID-19 spread. Now, these numbers are a combination of self-reported positive tests, hospital data, and wastewater sampling. Even with a data dashboard that’s consistently updated, I don’t feel comfortable using it as an assessment of risk.
At the end of the day, I don’t have any options but to stay on top of my boosters, mask up wherever I go, and limit the amount of time I spend in public. Every day I see people in my neighborhood resume their normal lives, enjoying brunch in the window of the restaurant across the street from my home. Just know that I, too, would like to eat a plate of pancakes on a Sunday morning in a bustling diner. I just have to continually ask myself the same question: Are those pancakes worth dying for?