When I was notified that my preschooler may have been exposed to COVID-19, the very first thing I did was arrange for him to get tested. After all, public health officials pleaded with Americans to control the contagion by getting tested. The U.S. Congress even passed a law to make testing “free” to individuals with health insurance.

Instead, I spent three months, and made more phone calls than I can count, trying to determine why my health insurer — a relatively comprehensive, employer-sponsored plan — did not fully pay for my son’s testing bill. The failure stemmed from a health care provider incorrectly billing for the testing, which was a problem the provider did not have good processes to fix and which my health insurer left me to resolve largely on my own.

For myself, a health policy researcher who typically works with survey data and spreadsheets — including a recent focus on challenges to COVID vaccination efforts — it was a visceral symbol not only of how the U.S. public health and health care systems stumbled when confronted with a devastating pandemic but also a reminder that Americans have concrete reasons to be skeptical of assurances that COVID-related health care won’t empty their wallets.

I had the resources to pay the testing bill up-front and spend hours talking with billing and insurance representatives for reimbursement, but for millions of Americans with low incomes or without health insurance, those barriers could shift the decision toward going without a test and just hoping for the best. Now, as the focus has shifted from testing to vaccination, that experience has caused me to worry many people could delay or go without a COVID vaccine due to similar concerns about cost.

Irrespective of my personal experiences, surveys show that cost is a real concern among people considered to be “vaccine hesitant” or who haven’t yet gotten a shot. For instance, a Kaiser Family Foundation (KFF) poll from April 2021 found that roughly one in three people who hadn’t yet been vaccinated reported concerns that they might have to pay for a COVID vaccine.

Similarly, an analysis of the U.S. Census Bureau’s Household Pulse Survey (HPS) by my colleagues at the University of Minnesota’s State Health Access Data Assistance Center (SHADAC) found that cost has consistently been cited as a concern among people considered vaccine hesitant. It equates to millions of U.S. adults who say they weren’t getting vaccinated, at least in part, because they’re worried about a medical bill. And news reports from multiple states have shown that fear isn’t unfounded, as vaccine providers have billed patients for costs associated with their COVID vaccines — and those people are mostly left to their own devices to get those improper bills fixed.

There also is cause to believe that worries about vaccine-related costs are impacting the U.S. population inequitably. In the April 2021 KFF survey, about one in four white adults reported concerns about out-of-pocket costs for a COVID vaccine, while more than one in three Black adults reported concerns about COVID vaccine costs, and roughly one in two Hispanic adults reported those concerns.

The federal government’s decision to purchase vaccines for the entire U.S. population is an important step toward mitigating cost as a barrier to vaccination, but there are additional steps that could be considered. For instance, officials could do more to employ trusted community institutions with a reputation for providing free or low-cost health care, such as federally qualified health centers, rather than relying mostly on the same clinics, hospitals, pharmacies and other health care businesses that commonly present uninsured or underinsured people with large bills. Additionally, government agencies could take a greater oversight role to ensure people aren’t billed for COVID vaccines — and to help people resolve improper bills rather than leaving individuals to navigate byzantine health care and insurance systems on their own.

Fortunately, my son never developed COVID symptoms, and his test came back negative. And I was finally reimbursed for his entire bill. However, this experience has since given me pause in seeking out further testing, and it has unfortunately caused me to doubt promises that COVID vaccines would truly be free for everyone in the U.S.

Colin Planalp is a senior research fellow at the State Health Access Data Assistance Center (SHADAC), a health policy research and technical assistance center within the University of Minnesota’s School of Public Health. He studies and advises states on ways to use data to inform policy decisions on issues such as the opioid crisis and growing rates of alcohol-involved deaths, reforming health care payment and delivery systems, and enhancing health equity in the response to the COVID-19 pandemic.

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