Why Some Survivors of the Polio Epidemic Are Still Anxious Even After Being Vaccinated for Covid-19

Memories of the past have them worried about our future

Photo by Edwin Hooper on Unsplash

Karen Barone’s mother Pam lives in the apartment next door. “When Covid hit I’d go get her groceries or whatever she needed and then I’d wipe them down,” says Karen. “I’d leave everything outside and wave from the steps. I’d never go in.”

One day Karen found her mom in tears.

“She said to me ‘I can’t be isolated again. I would rather die of Covid than this.’ That’s where I saw the strong connection between my mom’s Covid experience and her polio experience.”

When Pam Barone was six years old, she told her parents she wasn’t feeling well. She was quickly rushed to the hospital and soon learned she had polio. Pam describes herself as impatient, both now and back then, and shortly after she arrived, she remembers telling the doctor she wanted to go home.

“I remember him saying, ‘Ok if you wanna go home, walk to me.’ So I got up and he caught me just before I crumbled to the floor.”

Pam made a relatively quick recovery and considers herself incredibly lucky; most polio victims are children. “I don’t remember many things from back then,” she says, “but I do remember my mother telling me that the boy across the hall was dying of polio.”

A deadly virus, striking fear for decades

Polio is caused by poliovirus, a highly infectious pathogen that spreads directly from person to person or through contact with contaminated feces.

Although the first major polio outbreak in the United States was in 1894, it was in 1952, three years before the polio vaccine became widely available, that the epidemic reached its peak. That year in the U.S. nearly 60,000 cases of polio were reported, over 3,000 people died, and over 20,000 were left with mild to severe paralysis.

Pam’s now vaccinated for Covid-19, but the anxiety she felt at the start of the pandemic hasn’t fully dissipated, although it’s now caused by something else: anti-vaxxers. “The foolishness of people who don’t feel like they need to comply with protecting humanity,” she says, “I’ve gotten quite upset about it because I feel what they’re doing is putting the whole society at risk.”

And she’s not the only person having lived through the polio epidemic who’s feeling that way.

“It seems to me that there are quite a few people who are saying no to this vaccine. This virus is transforming all the time and it makes you fearful,” says Nancy Magnussen, referencing the growing list of variants. “What’s going to happen in a year? Will we kind of go through the whole thing again?” By “the whole thing,” Nancy means the many lockdown cycles much of this country has experienced over the course of the last 16 months.

Decades of lockdowns

A lockdown was nothing new to Nancy, although it had been close to 70 years since her last experience with one.

“I remember being five years old and Pinocchio had just come out,” she says. “We had plans to see it and I still remember the day my dad came into the room and said we couldn’t go.” The movie theater was closed — there had been another polio outbreak nearby. “I can still picture where I was and just being so upset because I’d been looking forward to it for a long time.”

Like Covid-19, polio led to the temporary closing of movie theaters, schools, restaurants, pools, and other public places, but with polio, the cycle of temporary closings went on for decades. Then, in 1955, there was a vaccine, and that changed. Nancy recalls when the vaccine became available, “I was young, certainly, but I don’t remember there being any doubt in my parents’ minds that we would get the polio vaccine.” Their lack of hesitancy is not surprising given Nancy’s family’s first-hand experience with polio.

Nancy’s mother died just six days after giving birth to her. It was only once she was in the hospital, in labor, that the doctors realized she had polio. “She was very heroic in birthing me like that,” says Nancy, who didn’t realize her birth mother had died of polio until many years later. Her father remarried when Nancy was still very young. “As a kid, I thought I was just lucky that I had 3 sets of grandparents.”

Eight-year-old Kathy Calvin’s parents were also optimistic about the vaccine. So optimistic that they enrolled Kathy, then 8 years old, to be a Polio Pioneer, part of the first trial testing Jonas Salk’s polio vaccine. She was one of the close to two million children in first to third grade who participated. “When I was an adult I found my Polio Pioneer pin in a box,” Kathy recalls, “and I asked my mom, ‘how did you decide that you’d let me do it.’ She had a lot of faith in science. She knew there were concerns but the alternative was scarier.”

Eradicating disease requires a willingness to get vaccinated.

In an interview with NPR this past May, New York University medical historian and author of Polio: An American Story David M. Oshinsky said that the polio vaccine was first available during a “high point of respect for scientific discovery.” With the recent success of antibiotics during World War II, people believed humans were conquering infectious diseases, and so when the polio vaccine became available in 1955, “people couldn’t get it fast enough.”

On top of that were the devastating effects of polio — the risk of death and paralysis in young kids in particular — which had been scaring people in the U.S. since the late 1800s. In a 2015 article for Time Magazine, a publication that had Jonas Salk on its cover in 1954, Jennifer Latson wrote that when the polio vaccine became available, “the very real, utterly devastating effects of polio overshadowed any hypothetical questions of vaccine safety.” She went on to say that the “only fear most parents felt was that it wouldn’t become widely available fast enough to save their kids.”

Because so many people rushed to be vaccinated, the number of polio cases fell rapidly, from tens of thousands per year in the early 1950s to less than 100 per year in the 1960s and fewer than 10 per year in the 1970s. By 1979 polio was considered eradicated in the U.S. As of 2019, 92.6% of children in the U.S. have been vaccinated for polio by the time they’re two years old.

That’s looking unlikely to be the case for Covid-19.

Covid-19 vaccine hesitancy

According to a survey done in April by The University of Minnesota’s Center for Infectious Disease Research and Policy, one in five Americans says they won’t get the Covid-19 vaccine. An NPR/Marist poll done around the same time found that one in four Americans would refuse a coronavirus vaccine.

Opposition to vaccines has been around as long as vaccines have existed, but in the early 1980s, the U.S. saw a rise in anti-vaccination rhetoric, beginning with media attention directed at the diphtheria, pertussis, and tetanus (DPT) vaccine. The documentary DPT: Vaccine Roulette garnered a lot of attention, as did the book A Shot in the Dark. Then, in 1998, former physician and academic Andrew Wakefield published his now notorious study in The Lancet that falsely claimed there was a link between the measles, mumps, and rubella (MMR) vaccine and autism. Although the paper has since been retracted, it took 12 years for The Lancet to do so. Although the work was (and still is) largely criticized by the scientific community, it left a devastating mark on and emboldened public figures, often celebrities, to continue spreading misinformation about vaccines.

Right now the vaccines we have available in the U.S. are highly effective against current variants, but as long as there are people not getting vaccinated, SARS-CoV-2 — the virus that causes Covid-19 — can spread. The more it spreads, the more opportunities it has to mutate, and the more likely a mutation leads to a SARS-CoV-2 variant that our vaccines can’t handle. In that scenario, we’d likely be thrown back on the lockdown roller coaster.

If you’re vaccinated, don’t lose sleep over the current variants

In a publicly available Q&A from earlier this year, infectious disease doctor Robert Bollinger assured the public that we don’t need to overreact to these variants, but did say that, as is the case with every virus, the mutations need to be monitored “to ensure that testing, treatment, and vaccines are still effective,” and that’s something scientists are continuing to do. He stressed the importance of getting vaccinated to stop the virus from spreading.

In an interview with STAT, evolutionary virologist Jesse Bloom said that he believed SARS-CoV-2 would have to pick up multiple genetic mutations in very specific regions in order to seriously threaten the effectiveness of current vaccines. According to Andrew Joseph, who wrote the article, scientists do think SARS-CoV-2 could eventually change to the point where vaccine effectiveness will be threatened, but that could take years. And, if it does happen, at least one vaccine maker has claimed they could create new vaccines in less than two months.

So maybe there will be another lockdown in the not-too-distant future, but the promise of rapidly modifiable mRNA vaccine technology could mean we get out of that lockdown and back to “normal” much faster. That is, as long as enough people agree to be vaccinated.

But let’s imagine a world in which we’re all vaccinated tomorrow. There will still be people experiencing the health consequences of having SARS-CoV-2, including Covid-19 long-haulers — people who have symptoms 28 days or more after they’re first infected. They typically test negative for the virus but still feel its lingering effects, which can include but are not limited to neurologic, cardiopulmonary, psychiatric, and musculoskeletal impairments.

According to the American Medical Association (AMA), research has shown that 10–30% of people with Covid-19 reported at least one persistent symptom six months after clearing the infection. This is a big enough issue that the AMA recently adopted a new policy to better diagnose and treat long-haul COVID-19, including the associated behavioral health conditions.

The Office of National Statistics in the UK estimates that one million people living in the UK have self-reported “long Covid,” and the World Health Organization has said that around one in 10 Covid-19 patients in the WHO European Region still show symptoms 12 weeks after infection.

An ‘invisible disability’

The lingering symptoms are not only varied but often considered ‘invisible’ or ‘hidden’ disabilities — disabilities that often go unnoticed by an outsider, unlike the paralysis caused by polio. This worries David Magnussen, Nancy’s husband. “You read about people who have these secondary effects of having Covid, and a lot of people are not paying attention to them — maybe they’re not even willing to believe them,” he says. “Unless you have some sort of dramatic and obvious disability, there’s a question about whether you’re really sick or not.”

His worry stems from what he saw during and following the polio epidemic. “When kids got polio they disappeared,” he recalls. “They either died or if they were in recovery, they were in the hospital for a long time, a year or two. Afterward, if they were disabled, they were sent to a special school. It was terrifying.”

David’s uncle and his father’s best friend had polio as infants. Both were paralyzed from the waist down. He saw how they struggled — physically and emotionally — and he’s still noticeably frustrated thinking back on the lack of services available where he grew up in Boston. “There were no accommodations whatsoever for people who were paralyzed — there were no ramps, there were very few elevators. All of the apartment buildings I can think of in Boston — the old, simple deckers—there wasn’t an elevator in any of them,” he says. “And if you’ve ever seen someone who had polio trying to go up the stairs, it’s an awful thing to watch because it’s so painful for them.”

In 1990, the Americans with Disabilities Act (ADA) became law and was a massive step toward making sure that people with disabilities would have access to services and accommodations that would allow them the same opportunities as everyone else. One of the people credited for helping pave the way for the ADA was Ed Roberts, who had been paralyzed from the neck down by polio. Ed couldn’t breathe on his own, he needed an iron lung — a massive 800-pound ventilator that encloses most of a person’s body and varies air pressure to simulate breathing.

Roberts was planning on bringing the iron lung with him to the University of California, Berkeley in 1962, where he was enrolled, but when the university found out they tried to revoke his acceptance. Roberts joined forces with other disabled students with the mission of making academic and social life at UC Berkeley accessible to all. In 1972, they created the Center for Independent Living, which helped lay the groundwork for the independent living philosophy that played a big role in the creation of the ADA.

Many people, David included, are concerned that invisible disabilities caused by Covid-19 will leave the people experiencing them in a sort of gray zone, a currently undefined area in terms of disability protection.

Ensuring fair treatment and services for Covid long-haulers

In an opinion article for STAT, Harry T. Paul wrote about his experience with congenital scoliosis, a disease that meant he spent a lot of his childhood in a hospital. “I no longer use any mobility devices,” he writes, and his disease isn’t immediately apparent to most people, but that even those who do realize he’s disabled “rarely think about its non mobility components, such as my reduced ability to clear respiratory infections like Covid-19.”

He continues by saying that, although the ADA has been instrumental in protecting the rights of disabled people, its focus is mainly on disabilities related to mobility, “partially due to the large number of polio survivors who used aids like wheelchairs, canes, and braces.” He’s concerned that people with non-mobility-related disabilities, like long-haul Covid, are already being overlooked.

In the United States, to receive disability benefits (including disability pay), a person must have a physical or mental impairment lasting, or expected to last, at least a year, and it must make it so they are “unable to engage in substantial gainful activity.” With a disease whose long-term effects doctors — and their patients — are still trying to understand, proof of meeting these criteria can be complicated.

Groups of support and advocacy for these patients are cropping up throughout the country. The Long COVID Alliance, for example — a network of patient-advocates, scientists, disease experts, and drug developers working to educate policymakers and accelerate research on long-term Covid — has partnered with dozens of other organizations, including #MeAction, BodyPolitic, and the COVID-19 Longhauler Advocacy Project. And groups like Stop The Wait are fighting to get rid of the current 5-month waiting period for Social Security Disability Insurance (SSDI) and the 2-year waiting period for Medicare coverage.

And the fight for Covid-19-related disability rights isn’t just in the United States. In the UK, disabled people are protected by the Equality Act 2010, but if someone has a disability not explicitly covered by the act, then they must prove their condition would have a substantial effect on their ability to work and that it will last longer than a year. The Trades Union Congress recently called on the UK government to “strengthen the Equality Act 2010 by specifying that long Covid is a disability” so that sufferers would have immediate access to disability benefits.

The pandemic is not over. And how the United States and other countries will deal with its aftermath is still unfolding, but there are a few things that are clear. The Covid-19 vaccines work, and in places where vaccination rates are climbing, Covid cases, incidences of hospitalization, and deaths are falling. That means fewer opportunities for variants to crop up that might throw us back into lockdown, and fewer opportunities for people to develop long-haul Covid.

When Pam Barone is asked why she thinks people should get vaccinated she doesn’t hesitate. “How many chances do you have in life to make a mark on the lives of other people? Not many.” She chuckles, “I’m getting older, my social circle is getting smaller, so I have less chances to make a difference, but this is one.”

Here’s your chance.

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Sam Jones, PhD

Sam Jones, PhD

biomedical scientist turned science journalist & producer. based in washington, dc. sjoneswriting.com