'You have your science, and I have mine': COVID-19 scourge exposes distrust of medicine

From the classroom where she taught high school English, Margie Satterwhite Brown watched parents and their children lining up across the street in the parking lot of Bradford Regional Medical Center, in northern Pennsylvania.

The first vaccine against the most common cause of cervical cancer was approved in 2006, and in the years that followed, parents were eager to get their daughters protected.

More than a decade later, that kind of anticipation for a vaccine would be hard to imagine. Two years into the COVID-19 pandemic, fewer than half of McKean County residents were fully inoculated, according to the Centers for Disease Control and Prevention, and just 38% had received a booster shot by early March—among the lowest rates in Pennsylvania.

This rural Central Pennsylvania county is hardly an outlier: Among adults in the U.S., only about 4 in 10, or 42%, had gotten a booster as of January, according to an ongoing study by the Kaiser Family Foundation.

Two years of a pandemic tearing a path of sickness and death through the U.S.—surging, ebbing, then surging again—eroded trust in medicine along the way, doctors and others say.

Low U.S. rates for booster shots are a reflection of that wariness.

The numbers are not much better in urban Allegheny County. Fewer than half of those eligible—46.7%—had gotten a COVID-19 booster shot by the end of February. That's a month shy of the two-year anniversary of Gov. Tom Wolf's closure of schools statewide because of the pandemic, keeping more than 1.7 million kids out of the classroom.

Doctors are pushing back against the distrust, as they have always done, with candor and science, but also by building trust one patient at a time through new professional relationships with patients. Discouraged by health insurers' growing control of medical care, a group of Pittsburgh-area doctors has created a new model for the patient-doctor relationship, one they say is the future of medicine.

In the mid-20th century, the response to medical advances was different.

The peak of the polio outbreak in the U.S. came in 1952, when about 58,000 cases were reported. Children with parents' permission packed school auditoriums to get polio shots in 1955—and vaccinations against measles, mumps, rubella and HPV in the decades that followed.

But in early 2020, as a new disease quickly spread around the world, so did the rumors and sometimes contradictory information about what to do about it. Individual interpretations of scientific evidence became the norm, and distrust of medicine rose—even as COVID-19 became the third leading cause of death in the U.S. that year with 350,831 recorded fatalities, trailing only heart disease and cancer.

A pre-existing distrust of science was "exacerbated by conflicting messages, questionable treatments reported in research publications, concerns about political interference in public health recommendations and decisions regarding the efficacy of therapeutics, and pseudoscience and conspiracy theories," a 2020 column in the Journal of the American Medical Association noted.

Among the confusing issues:

— Face masks were discouraged to save supplies, then recommended for everyone, then later sometimes mandated.

— Officials said COVID-19 was spread by close contact, then it turned out getting infected didn't have to mean close contact at all.

— Even after vaccines were made available, people who were fully vaccinated sometimes died, feeding an alternative narrative about the shots.

And the situation grew worse as the pandemic wore on. A Pew Research Center study in February found 60% of U.S. adults said they have felt confused by changing public health recommendations on how to curb COVID-19 cases, up 7 percentage points from August.

"Everybody feels really lied to," said the 53-year-old Brown, who lives in Elk County and who recalled a time when people seemed more confident in their doctors. The office of her physician grandfather was attached to his house into the 1970s, a time when trust in doctors was high.

The shift began before COVID.

In a 1966 survey of adults in the U.S., 73% said they had great confidence in the leaders of the medical profession, according to a Journal of American Medical Association column in 2020. A survey done in 2012 found only 34% expressing such confidence.

The fall from embracing science to "pseudoscience and conspiracy theories" was steep.

"We had problems with people using too many antibiotics," Brown said. "Now they turn to essential oils. We have essential oils and this YouTube guy. These are societal failures."

Through February, the COVID-19 pandemic had taken 824,708 lives in the U.S., including 42,247 Pennsylvanians, according to a new survey by Kaiser Health News and PolitiFact.

The start of the pandemic in the U.S. brought with it an "historic level of disregard of scientific advice" about the disease, Naomi Oreskes, professor of the history of science at Harvard University, wrote in Scientific American magazine in 2020. That made the outbreak "worse in the U.S. than in many other countries."

She compared the message that presented use of face masks as an issue of personal freedoms to Big Tobacco's longtime marketing of cigarettes.

Brown, for her part, blames the distrust of medicine on the opioid epidemic, which took the lives of many of her friends and former students. Trust in medicine and corporate America was easier before the overdose deaths began piling up, she said.

The opioid epidemic began in the 1990s with doctors writing more prescriptions for the medicine, having been given assurances of safety from the drug industry. But overdoses began spiking by 1999, leading to the declaration of a public health emergency in 2017.

In 2021, U.S. overdose deaths topped 100,000 for the first time.

Hampton family physician Kirsten Lin says the distrust of medicine was there all along—the pandemic just brought it to light.

In 2016, for the first time, fewer than half of practicing physicians had an ownership stake in their practice as health systems snapped up medical practices, turning doctors into employees. The shift meant pumped-up patient volume requirements for doctors as health systems sought to juice revenue.

The result was shorter office visits and a deterioration in the doctor-patient relationship.

"People are more easily able to access information on the internet than from their physician," Dr. Lin said. "Trust is really the issue."

The shift helped prompt Dr. Lin and family practice partner Natalie Gentile in 2017 to form Direct Primary Care Physicians, which operates outside the traditional health care system by eliminating barriers to patient care they say health insurers can create.

Direct Primary Care offers patients office visits that can last 45 minutes rather than the standard 10- to 15-minute increments. The doctors make house calls. The practice doesn't accept Medicare, Medicaid or commercial insurance, so the service may not be for everyone.

The concept has been around for about 10 years but has been getting traction recently. There are 22 independent direct primary care offices in the state, according to the Pennsylvania Direct Primary Care Association.

Drs. Lin and Gentile say they've counseled people who distrusted the COVID vaccines.

Whatever the reasons, recent studies showing booster shots provide the best protection against infection did not seem to resonate among those who were already wary—some of whom had to be convinced earlier to get the first two rounds of COVID vaccinations.

Only 1% of those eligible in January said they would get a booster "as soon as possible," down sharply from 34% who said they would in December 2020 before the sense of urgency about the virus waned, according to the Kaiser study. About 34% of adults had received two shots, but not a third.

Only 10 of Pennsylvania's 67 counties exceeded 50% for residents getting boosted, including Beaver County with 50.6%—the highest in Western Pennsylvania, according to CDC data from early March.

In four Pennsylvania counties, the booster rate was under 40%.

The issue is bigger than Western Pennsylvania. A New York Times analysis in January found that the U.S. lagged well behind Belgium, Britain, Germany and five other countries for share of the population getting booster shots, pushing up death rates in the U.S. from COVID-19.

The digital era has supercharged the speed at which information—and disinformation—spreads, feeding the belief that science is a matter of personal opinion, said Kenneth Behrend, a Downtown lawyer who has represented students at North Allegheny and other school districts in court who challenged the lifting of mask mandates in schools.

Recently, a man asked Behrend to represent him in a case fighting mask use before realizing that Behrend very much believes in the value of face masks in curbing the spread of COVID-19.

"Well, you have your science," the man told Behrend, who remembers standing in line as a child for sugar cubes containing the polio vaccine. "And I have mine."

Meanwhile, on a recent weekday, Direct Primary Care Physicians of Pittsburgh co-founder Dr. Gentile drove to the O'Hara home of Megan and Greg Hilkert, both 35, to see their son, 2-month-old Owen. It was a well-baby visit, where he would be weighed, measured—and get four vaccines.

Dr. Gentile, 33, reassured Hilkert about a light rash on the infant's scalp and marveled at the child's size, tugging at his foot on a long measuring tape to get a reading.

Later, the doctor said she believes she can build a trusting relationship with patients minus the treatment limitations health insurers can impose. Personal trust fosters trust in science and medicine.

"The dissolution of trust in the health care system—where are you going to go for answers?" Dr. Gentile said. "How are you going to expect them to trust you when you recommend a vaccine?"

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