Nicole Buchanan for NPR
When the pandemic began, Tomeka Kimbrough-Hilson knew she had a small growth inside her uterus. She was first diagnosed with uterine fibroids in 2006 and was able to have the non-cancerous mass removed through outpatient laser surgery. Over the years, she would also be able to manage her symptoms with medication and lifestyle changes.
But when those symptoms — a bloated belly, irregular periods, nausea — returned in 2020, Kimbrough-Hilson was unable to get an appointment with a specialist.
“March 27 came and everything shut down,” says Kimbrough-Hilson, 47, of Stone Mountain, Georgia. “I was not at the level of care that was needed [immediate attention]because of all the precautions that had to be taken.”
But even after the lockdown was lifted in the spring of 2020, Kimbrough-Hilson, a mother of five who works in the health insurance industry, was unable to see a gynecologist.
She left message after message with providers. But her calls went unreturned, or providers were booked up for months on end. “I couldn’t get the appointments,” she says. “I can’t follow.”
These days her stomach is swollen and she says that she often feels tired and nauseous: “It makes me want to poop a lot.”
She also struggled to get appointments for other members of her family. Her 14-year-old daughter had brain surgery before the pandemic, but then couldn’t get follow-up appointments until recently.
Kimbrough-Hilson’s family’s experience is not unusual, according to a new survey by NPR, the Robert Wood Johnson Foundation and the Harvard TH Chan School of Public Health.
Among families who had a serious illness in the past year, one in five respondents said they had problems accessing care during the pandemic.
That’s a “tremendous” number of people unable to access care, says Mary Findling, associate director of Harvard’s Opinion Research Program. “From a health and well-being point of view, this is very high.”
Other recent studies have found significant delays in cancer screenings and disruptions in routine diabetes, pediatric and mental health care. While it’s still too early to know the long-term impacts on people’s health, researchers and doctors are concerned, especially as disruptions continue as the nation’s health care system struggles to recover from the pandemic.
The new survey also found that disruptions in caregiving hit some racial and ethnic groups harder. Among households where someone had been seriously ill in the past year, 35% of American Indian and Alaska Native households and 24% of black households had problems accessing critical illness care, compared with only 18% of white households.
Among black respondents who had seen a provider in the past year, 15% said they were disrespected, turned away, treated unfairly, or received poor treatment because of their race and ethnicity, compared to only 3% of white respondents said the same.
“What’s really sad is that racial disparities in health care between black and white Americans remain,” Findling says. “And looking at a wide range of measures, it’s better to be a white patient than a black patient in America today. And when you just stop and think about it, it’s terrifying.”
Health insurance was not a barrier to access
The vast majority of people—of all racial and ethnic groups—who experienced delays in care reported having health insurance.
“One thing it tells us is that just providing more health care insurance is not going to close some of these gaps and holes that we’re seeing in terms of individuals getting more care,” says Loren Saulsberry, a health policy researcher. in. University of Chicago, who worked closely with Findling on the survey.
“There are broader issues at play here,” says Findling, such as the historic workforce shortage among health systems. “The pandemic continues and is wreaking havoc on everyone.”
Saulsberry, who studies health disparities in vulnerable populations, says the pandemic has exacerbated those disparities due to a number of barriers, including a person’s zip code.
For example, the state of Georgia, where Kimbrough-Hilson lives, has had one of the lowest numbers of OB-GYNs in the country for years. Now, she’s finding it harder than ever to get a date with one.
“I was able to get my teeth done, my eyes checked,” she says. “But I can’t afford women’s health.”
She has a referral from her primary care provider, she says, but it’s for a practice “30 to 40 miles away.”
Health systems are overburdened for routine care
While the pandemic exacerbated disparities in care, it also overwhelmed the health care system, causing delays and disruptions across the board, says Cassie Sauer, CEO of the Washington State Hospital Association.
And it has also taken a heavy financial toll, says Dr. Arif Kamal, chief patient officer at the American Cancer Society. “Some of it has to do with actually caring for patients who are very complex, who have very severe disease because of COVID-19,” he says. “But even during that time there was also a loss of income because other activities had to be stopped, for example, elective operations.”
As a result, preventive services and early detection activities — not the “highest margin activities” for health systems — have taken a back seat, he adds.
“Over the past two years we estimate that about 6 million women, for example, have missed routine cancer screening,” says Kamal. This includes missed mammograms to detect breast cancer and Pap tests to check for cervical cancer.
Kamal is concerned that in a year or two, providers will begin to detect cancers at later stages due to missed screenings, making them harder to treat or cure.
Meanwhile, health systems continue to feel the effects of the pandemic, causing ongoing delays in what was once routine care.
Sauer has experienced this at work and in her personal life.
“In my family, we’ve struggled to get access to health care for my children and my parents,” says Sauer.
Her 80-year-old father, who has Parkinson’s disease, suffered a fall during the winter holidays and was hospitalized. “I was with him, taking care of him in the hospital. My mom had COVID at the time, so she wasn’t able to be there,” she says. “And I couldn’t figure out how to get him out of the hospital.”
He needed to go to a skilled nursing facility, but she couldn’t get him into one. “I found two nursing homes that seemed like good fits,” says Sauer. “And they both closed because they had outbreaks of COVID on the same day.”
This is still one of the biggest problems that state hospitals are currently facing, she adds. “We can’t get people out of hospitals right now. There’s no back door, but the front door is open to the emergency room.”
There are patients who spend up to 90 days in the hospital, she says, when the average hospital stay is three days. “So they have taken the space of 30 patients who needed care.”
That’s why, more than two years after the pandemic, she says, people are still unable to schedule regular procedures, everything from knee and heart valve replacements to cancer treatments.
These procedures may be considered “elective,” but postponing them can have major consequences on a patient’s health and quality of life, she adds.
“You’re likely to lose weight, maybe you’ll gain weight,” says Sauer. “You’re going to lose flexibility. You know, all these things contribute to a possible fall, cardiac problems, respiratory problems.” Which in turn can also increase one’s risk of serious illness from COVID.
“I think the number of this delayed care is incredible,” she says.