Hospital polls fail to ask diverse groups of patients whether they've received culturally competent care.
Each day, thousands of patients get a call or letter after being discharged from U.S. hospitals. How did their stay go? How clean and quiet was the room? How often did nurses and doctors treat them with courtesy and respect? The questions focus on what might be termed the standard customer satisfaction aspects of a medical stay, as hospitals increasingly view patients as consumers who can take their business elsewhere.
But other crucial questions are absent from these ubiquitous surveys, whose results influence how much hospitals get paid by insurers: They do not poll patients on whether they've experienced discrimination during their treatment, a common complaint of diverse patient populations. Likewise, they fail to ask diverse groups of patients whether they've received culturally competent care.
And some researchers say that's a major oversight.
Kevin Nguyen, a health services researcher at Brown University School of Public Health, who parsed data collected from the government-mandated national surveys in new ways, found that — underneath the surface — they spoke to racial and ethnic inequities in care.
Digging deep, Nguyen studied whether patients in one Medicaid managed-care plan from ethnic minority groups received the same care as their white peers. He examined four areas: access to needed care, access to a personal doctor, timely access to a checkup or routine care, and timely access to specialty care.
"This was pretty universal across races. So Black beneficiaries, Asian American, Native Hawaiian, and Pacific Islander beneficiaries; and Hispanic or Latino or Latinx/Latine beneficiaries reported worse experiences across the four measures," he said.
Nguyen said that the Consumer Assessment of Healthcare Providers and Systems surveys commonly used by hospitals could be far more useful if they were able to go one layer deeper — for example, asking why it was more difficult to get timely care, or why they don't have a personal doctor — and if the Centers for Medicare & Medicaid Services publicly posted not just the aggregate patient experience scores, but also showed how those scores varied by respondents' race, ethnicity, and preferred language. Such data can help discover whether a hospital or health insurance plan is meeting the needs of all versus only some patients.
Nguyen did not study responses of LGBTQ+ individuals or, for example, whether people received worse care because they were obese.
The CAHPS survey is required by the federal government for many health care facilities, and the hospital version of it is required for most acute care hospitals. Low scores can induce financial penalties, and hospitals reap financial rewards for improving scores or exceeding those of their peers.
The CAHPS Hospital Survey, known as HCAHPS, has been around for more than 15 years. The results are publicly reported by CMS to give patients a way to compare hospitals, and to give hospitals incentive to improve care and services. Patient experience is just one thing the federal government publicly measures; readmissions and deaths from conditions including heart attacks and treatable surgery complications are among the others.
Dr. Meena Seshamani, director of the Center for Medicare, said that patients in the U.S. seem to be growing more satisfied with their care: "We have seen significant improvements in the HCAHPS scores over time," she said in a written statement, noting, for example, that the percentage of patients nationally who said their nurses "always" communicated well rose from 74% in 2009 to 81% in 2020.
But for as long as these surveys have been around, doubts about what they really capture have persisted. Patient experience surveys have become big business, with companies marketing methods to boost scores. Researchers have questioned whether the emphasis on patient satisfaction — and the financial carrots and sticks tied to them — have led to better care. And they have long suspected institutions can "teach to the test" by training staff to cue patients to respond in a certain way.
National studies have found the link between patient satisfaction and health outcomes is tenuous at best. Some of the more critical research has concluded that "good ratings depend more on manipulable patient perceptions than on good medicine," citing evidence that health professionals were motivated to respond to patients' requests rather than prioritize what was best from a care standpoint, when they were in conflict. Hospitals have also scripted how nurses should speak to patients to boost their satisfaction scores. For example, some were instructed to cue patients to say their room was quiet by making sure to say out loud, "I am closing the door and turning out the lights to keep the hospital quiet at night."
About a decade ago, Robert Weech-Maldonado, a health services researcher at the University of Alabama-Birmingham, helped develop a new module to add to the HCAHPS survey "dealing with things like experiences with discrimination, issues of trust." Specifically, it asked patients how often they'd been treated unfairly due to characteristics like race or ethnicity, the type of health plan they had (or if they lacked insurance), or how well they spoke English. It also asked patients if they felt they could trust the provider with their medical care. The goal, he said, was for that data to be publicly reported, so patients could use it.
Some of the questions made it into an optional bit of the HCAHPS survey — including questions on how often staffers were condescending or rude and how often patients felt the staff cared about them as a person — but CMS doesn't track how many hospitals use them or how they use the results. And though HCAHPS asks respondents about their race, ethnicity and language spoken at home, CMS does not post that data on its public patient website, nor does it show how patients of various identities responded compared with others.
Without wider use of explicit questions about discrimination, Dr. Jose Figueroa, an assistant professor of health policy and management at the Harvard School of Public Health, doubts HCAHPS data alone would "tell you whether or not you have a racist system" — especially given the surveys' slumping response rates.
One exciting development, he said, lies with the emerging ability to analyze open-ended (rather than multiple-choice) responses through what's called natural language processing, which uses artificial intelligence to analyze the sentiments people express in written or spoken statements as an addendum to the multiple-choice surveys.
One study analyzing hospital reviews on Yelp identified characteristics patients think are important but aren't captured by HCAHPS questions — like how caring and comforting staff members were, and the billing experience. And a study out this year in the journal Health Affairs used the method to discover that providers at one medical center were much more likely to use negative words when describing Black patients compared with their white counterparts.
"It's simple, but if used in the right way can really help health systems and hospitals figure out whether they need to work on issues of racism within them," said Figueroa.
Press Ganey Associates, a company that a large number of U.S. hospitals pay to administer these surveys, is also exploring this idea. Dr. Tejal Gandhi leads a project there that, among other things, aims to use artificial intelligence to probe patients' comments for signs of inequities.
"It's still pretty early days," Gandhi said. "With what's gone on with the pandemic, and with social justice issues, and all those things over the last couple of years, there's just been a much greater interest in this topic area."
Some hospitals, though, have taken the tried-and-true route to understanding how to better meet patients' needs: talking to them.
Dr. Monica Federico, a pediatric pulmonologist at the University of Colorado School of Medicine and Children's Hospital Colorado in Denver, started an asthma program at the hospital several years ago. About a fifth of its appointments proved no-shows. The team needed something more granular than patient satisfaction data to understand why.
"We identified patients who had been in the hospital for asthma, and we called them, and we asked them, you know, ‘Hey, you have an appointment in the asthma clinic coming up. Are there any barriers to you being able to come?' And we tried to understand what those were," said Federico. At the time, she was one of the only Spanish-speaking providers in an area where pediatric asthma disproportionately affects Latino residents. (Patients also cited problems with transportation and inconvenient clinic hours.)
After making several changes, including extending the clinic's hours into the evening, the no-show appointment rate nearly halved.
CAHPS surveys are embedded in American health care culture and are likely here to stay. But CMS is now making tentative efforts in surveys to address the issues that were previously overlooked: As of this summer, it is testing a question for a subset of patients 65 and older that would explicitly ask if anyone from a clinic, emergency room, or doctor's office treated them "in an unfair or insensitive way" because of characteristics including race, ethnicity, culture, or sexual orientation.
Genesis attributes its large margins to excellent management and says it needs the money to expand and modernize services while being less reliant on government funding.
DARLINGTON, S.C. — Just off the deserted town square, with its many boarded-up businesses, people lined up at the walk-up pharmacy window at Genesis Health Care, a federally funded clinic.
Drug sales provide the bulk of the revenue for Genesis, a nonprofit community health center treating about 11,000 mostly low-income patients in seven clinics across South Carolina.
Those sales helped Genesis record a $19 million surplus on $52 million in revenue — a margin of 37% — in 2021, according to its audited financial statement. It was the fourth consecutive year the center’s surpluses had topped 35%, the records showed. The industry average is 5%, according to a federally funded report on health centers’ financial performance.
Genesis attributes its large margins to excellent management and says it needs the money to expand and modernize services while being less reliant on government funding. The center benefits financially from the use of a government drug discount program.
Still, Genesis’ hefty surplus stands out among nonprofit federally qualified health centers, a linchpin in the nation’s safety net for treating the poor.
The federal government pumped more than $6 billion in basic funding grants last year into 1,375 privately run centers around the country, which provide primary care for more than 30 million mostly low-income people. In 2021, the American Rescue Plan Act provided an additional $6 billion over two years for covid-19 care.
These community health centers must take all patients regardless of their ability to pay, and, in return, they receive annual government grants and higher reimbursement rates from Medicaid and Medicare than private physicians.
Yet a KHN analysis found that a handful of the centers recorded profit margins of 20% or more in at least three of the past four years. Health policy experts said the surpluses alone should not raise concerns if the health centers are planning to use the money for patients.
But they added that the high margins suggest a need for greater federal scrutiny of the industry and whether its money is being spent fast enough.
“No one is tracking where all their money is going,” said Ganisher Davlyatov, an assistant professor at the University of Oklahoma who has studied health center finances.
The federal Health Resources and Services Administration, which regulates the centers, has limited authority under federal law over how much the centers spend on services and how they use their surpluses, said James Macrae, an associate administrator.
“The expectation is they will take any profit and plow it back into the operations of the center,” Macrae said. “It’s definitely something we will look at and what they are doing with those resources,” he added about KHN’s findings.
Ge Bai, an accounting and health professor at Johns Hopkins University, questioned why some centers should be making profit margins of 20% or more over consecutive years.
A center with a high margin “raises questions about where did the surplus go” and its tax-exempt status, Bai said. “The centers have to provide enough benefit to deserve their public tax exemption, and what we are seeing here is a huge amount of profits,” she said.
Bai said centers must be able to answer questions about “why aren’t they doing more to help the local community by expanding their scope of service.”
Officials at the health centers defended their strong surpluses, saying the money allows them to expand services without being dependent on federal funds and helps them save for big projects, such as constructing new buildings. They pointed out that their operations are overseen by boards of directors, at least 51% of whom must be patients, ostensibly so operations meet the community’s needs.
“Health centers are expected to have operating reserves to be financially sustainable,” said Ben Money, a senior vice president at the National Association of Community Health Centers. Surpluses are necessary “as long as health centers have plans to spend the money to help patients,” he said.
Some center officials noted bottom-line profit margins can be skewed by large contributions earmarked for building projects. Grants and donations appear as revenue in the year they were given, but a project’s costs are allocated on financial statements over a longer period, often decades.
‘We Don’t Take Unnecessary Risks’
The annual federal base grant for centers makes up about 20% of their funding on average, according to HRSA. The grants have more than doubled over the past decade. These federal grants to the centers are provided on a competitive basis each year based on a complex formula that takes into account an area’s need for services and whether clinics provide care to specific populations, such as people who are homeless, agricultural workers, or residents of public housing.
The centers also receive Medicare and Medicaid reimbursements that can be as much as twice what the federal programs pay private doctors, said Jeffrey Allen, a partner with the consulting firm Forvis.
In addition, some health centers like Genesis also benefit from the 340B federal drug discount program, which allows them to buy medicines from manufacturers at deeply discounted rates. The patients’ insurers typically pay the centers a higher rate, and the clinics keep the difference. Clinics can reduce the out-of-pocket costs for patients but are not required to.
For its analysis, KHN started with research by Davlyatov that used centers’ tax filings to the IRS to identify the two dozen centers with the highest profit margins in 2019. KHN calculated bottom-line profit margin for each of the past four years (2018 through 2021) by subtracting total expenses from total revenue, which yields that year’s surplus, and then dividing that by total revenue. Money given by donors for restricted uses was excluded from revenue. After examining the centers’ finances, KHN found nine that had margins of 20% or more for at least three years.
North Mississippi Primary Health Care was one of them.
“We don’t take unnecessary risks with corporate assets,” said Christina Nunnally, chief quality officer at the center. In 2021, the center had nearly $9 million in surpluses on $36 million in revenue. More than $25 million of that revenue came from the sale of drugs.
Nunnally said the center is building a financial cushion in case the 340B program ends. Drugmakers have been seeking changes to the program.
The center recently opened a school-based health program, a dental clinic, and clinics in neighboring counties.
“There may come a day when this type of margin is not feasible anymore,” she said. If the center hits hard times, it would not want to “have to start cutting programs and people.”
In Montana, Sapphire Community Health in Hamilton, which accumulated nearly $3 million in surpluses from 2018 through 2020 and had a profit margin of more than 24% in each of those years, wants to move out of its rented quarters to a building that will cost at least $6 million to construct. “A new facility will enable us to provide services that we cannot provide due to lack of space, such as imaging, obstetrics, and dental services,” CEO Janet Woodburn said.
Outside Los Angeles, Friends of Family Health Center CEO Bahram Bahremand said his high margins are the result of good management and California’s broad Medicaid coverage for low-income residents.
The center — whose profit margins topped 25% from 2018 to 2020 — opened a $1.9 million facility in Ontario last year and purchased the building that houses its main clinic, in La Habra, for $12.3 million, with plans to expand it, he said.
Bahremand added that the center also keeps administrative costs down by focusing on having more providers in relatively fewer locations.
“You shouldn’t be asking: ‘Why are we making so much money?’ You should be asking: ‘How come other clinics are not making so much money?’” Bahremand said.
Concern About Paying the Bills
In South Carolina, Genesis began as an independent clinic and was sometimes barely able to make payroll, said Tony Megna, Genesis’ CEO and general counsel. Converting to a federally qualified health center about a decade ago brought federal funding and a more solid footing. It recorded more than $65 million in surpluses from 2018 to 2021.
“Our attitude toward money is different than most because it’s so ingrained in us to be concerned about whether we are going to pay our bills,” said Katie Noyes, chief special projects officer.
The center is spending $50 million to renovate and expand its aging facilities, Megna said. In Darlington, a new $20 million building that will more than double the facility’s space is scheduled to open in 2023. And its strong bottom line helps the center pay all its workers at least $15.45 an hour, more than twice the minimum wage in the state, Megna said. Darlington County’s annual median household income is a bit over $37,000.
Megna was paid nearly $877,000 in salary and bonuses in 2021, according to Genesis’ latest IRS tax filing, an amount nearly four times the industry average.
David Corry, chairman-elect of the Genesis board of directors, said in a memo to KHN that part of that compensation made up for several years when Megna was inadvertently underpaid. “We determined early on that providing Mr. Megna an ‘average’ compensation like those of other FQHCs CEOs was not what we wanted. Mr. Megna’s extensive legal experience and education as well as his institutional and regulatory knowledge set him apart from others.”
Megna said his base salary is $503,000.
Genesis officials said the financial security afforded by the center’s surpluses has allowed them to provide extra patient services, including foot care for people with diabetes. In 2020, Genesis used $2 million to create an independent foundation to help families with food and utility bills, among other needs.
Most of Genesis’ revenue comes from the 340B program, according to its audited financial statements. Many prescriptions filled at the clinic pharmacy are for expensive specialty drugs, which treat rare or complex conditions such as cancer. Getting accredited to dispense specialty drugs was expensive, Corry said, but “paid off because it gives our patients access to extremely high-priced, and often lifesaving prescription drugs that would not otherwise be available to many of them.”
Megna, 67, a former bankruptcy lawyer, said it’s vital to keep the center financially secure to stay open for patients.
“We are very careful in how we spend our money,” Megna said.
Gov. Gavin Newsom never publicly supported the initiative.
SACRAMENTO, Calif. — A ballot initiative that would have raised taxes on California millionaires and billionaires to fund public health programs and pandemic prevention is dead — at least for this year.
The Silicon Valley tech executives who bankrolled the measure, which had been targeted for the November ballot, said they aren’t giving up on their goal of creating the strongest state public health system in the country. But they acknowledge COVID-19 is no longer top of mind for most Americans.
"Our goal was to capture people's acute attention on the pandemic to get something done — but there are economic problems and it looks like we're headed for a recession, so things got more complicated," said Max Henderson, the startup investor and former Google executive spearheading the campaign. "People are expressing rising skepticism over higher taxes, and the economy is dominating the hearts and minds of the electorate."
Gov. Gavin Newsom never publicly supported the initiative. For Henderson and the other tech entrepreneurs pushing the measure, moving forward appeared too risky without support from Newsom and a broad coalition that includes state lawmakers and powerful health and business groups.
The initiative would have imposed an additional tax "at the rate of 0.75 percent on that portion of a taxpayer's taxable income" that exceeds $5 million. It would generate as much as $15 billion over 10 years, according to a state government analysis of the measure.
Even though the pandemic is not over and covid infections and hospitalizations are rising, the prospect of raising taxes — even on the wealthy — grew too politically toxic this year as inflation drove up the price of goods and Californians faced record-high gas prices.
"Voters are usually pretty comfortable taxing rich people, but inflation has driven voter concerns about the economy and a recession to very high levels," said Dan Schnur, a California political strategist.
Initiative backers said they had gathered the roughly 1 million signatures needed to qualify the California Pandemic Early Detection and Prevention Act for the November ballot, but intentionally missed a June 30 deadline to submit them to the California secretary of state.
They instead submitted the signatures one day later, on July 1, making the initiative eligible for the ballot in November 2024, although the secretary of state's office would still have to validate the signatures before placing it on the ballot.
"Voters may feel better about the economy in two years, and turnout is likely to be higher in a presidential election year — so it may be a more hospitable environment," Schnur said.
Meanwhile, campaign leaders are negotiating with the Newsom administration to try to reach an earlier deal for more state public health funding, avoiding the ballot box. "We have an opportunity to pursue a much broader coalition and get the governor on board," Henderson said. "If not, we'll push hard in 2024."
Campaign spokesperson Amelia Matier told KHN that organizers are willing to forgo the tax increases if they can strike a deal with the governor for the sweeping public health measures the initiative called for: more money for struggling local public health departments, funding for better air filtration and other safety upgrades in K-12 schools, and money to establish a California-based institute to detect and prevent emerging virus threats.
"It's not rocket science to see that the pandemic is not top of mind as the cost of living continues to go up," Matier said. "But we're confident that Californians want a good plan to protect themselves from the next pandemic."
Newsom spokesperson Alex Stack confirmed that the administration is in negotiations to reach a deal before 2024.
"The Newsom administration has committed billions of dollars to strengthen state and local pandemic response capacity, community resiliency and pioneering science through the University of California — all to make sure we're better prepared for the next pandemic. And we're doing that without raising taxes, which is a priority for the governor," Stack said in a statement.
That said, "we all remain in conversation about how we can collectively keep California on the leading edge of research and innovation," Stack said.
Amid pressure from public health officials, Newsom and state Democratic leaders infused California's public health agencies with new funding that kicked in July 1.
The $300 million annual general fund investment will help California fortify its public health system, said Kat DeBurgh, executive director of the Health Officers Association of California, which represents the state’s 61 local public health officers. It comes after decades of disinvestment in public health that has made detecting and preventing deadly outbreaks and responding to the coronavirus pandemic more difficult for public health officials, she said.
The proposed ballot measure would strengthen California's public health system and make it a leader nationally, she said, while other states are acting to weaken public health.
"There's absolutely still a need for additional funding," DeBurgh said, noting that her organization has formally endorsed the initiative. DeBurgh said she prefers that new public health funding be approved via the initiative rather than through the state budget process because voters’ decisions are harder to undo.
She rattled off a list of critical public health challenges across the state that included skyrocketing rates of sexually transmitted infections, intensifying heat waves, and the deadly opioid crisis. The state is also wrestling with the emerging monkeypox threat.
"We view the $300 million in annual funding from the governor as a foundational investment, but local health departments have more to work on than ever before," she said.
This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
If a screening returns an abnormal result and a provider orders more testing, patients may be on the hook for hundreds or even thousands of dollars for diagnostic services.
This article was published on Tuesday, June 14, 2022 in Kaiser Health News.
When Cynthia Johnson learned she would owe $200 out-of-pocket for a diagnostic mammogram in Houston, she almost put off getting the test that told her she had breast cancer.
"I thought, 'I really don't have this to spend, and it's probably nothing,'" said Johnson, who works in educational assessment at a university. But she decided to go forward with the test because she could put the copay on a credit card.
Johnson was 39 in 2018 when that mammogram confirmed that the lump she'd noticed in her left breast was cancer. Today, after a lumpectomy, chemotherapy, and radiation, she is disease-free.
Having to choose between paying rent and getting the testing they need can be a serious dilemma for some patients. Under the Affordable Care Act, many preventive services — such as breast and colorectal cancer screening — are covered at no cost. That means patients don't have to pay the normal copayments, coinsurance, or deductible costs their plan requires. But if a screening returns an abnormal result and a health care provider orders more testing to figure out what's wrong, patients may be on the hook for hundreds or even thousands of dollars for diagnostic services.
Many patient advocates and medical experts say no-cost coverage should be extended beyond an initial preventive test to imaging, biopsies, or other services necessary for diagnosing a problem.
"The billing distinction between screening and diagnostic testing is a technical one," said Dr. A. Mark Fendrick, director of the University of Michigan's Center for Value-Based Insurance Design. "The federal government should clarify that commercial plans and Medicare should fully cover all the required steps to diagnose cancer or another problem, not just the first screening test."
A study that examined more than 6 million commercial insurance claims for screening mammograms from 2010 to 2017 found that 16% required additional imaging or other procedures. Half the women who got further imaging and a biopsy paid $152 or more in out-of-pocket costs for follow-up tests in 2017, according to the study by Fendrick and several colleagues and published by JAMA Network Open.
People who needed testing after other preventive cancer screenings also racked up charges: half paid $155 or more for a biopsy after a suspicious result on a cervical cancer test; $100 was the average bill for a colonoscopy after a stool-based colorectal cancer test; and $424, on average, was charged for follow-up tests after a CT scan to check for lung cancer, according to additional research by Fendrick and others.
Van Vorhis of Apple Valley, Minnesota, did an at-home stool test to screen for colorectal cancer two years ago. When the test came back positive, the 65-year-old retired lawyer needed a follow-up colonoscopy to determine whether anything serious was wrong.
The colonoscopy was unremarkable: It found a few benign polyps, or clusters of cells, that the physician snipped out during the procedure. But Vorhis was floored by the $7,000 he owed under his individual health plan. His first colonoscopy several years earlier hadn’t cost him a cent.
He contacted his doctor to complain that he hadn't been warned about the potential financial consequences of choosing a stool-based test to screen for cancer. If Vorhis had chosen to have a screening colonoscopy in the first place, he wouldn't have owed anything because the test would have been considered preventive. But after a positive stool test, "to them it was clearly diagnostic, and there's no freebie for a diagnostic test," Vorhis said.
He filed an appeal with his insurer but lost.
Preventive care, like screening colonoscopies, is supposed to be free of charge to patients under the Affordable Care Act. But some hospitals haven't gotten the memo.
In a breakthrough for patients and their advocates, people who are commercially insured and, like Vorhis, need a colonoscopy after a positive stool test or a so-called direct visualization test like a CT colonography will no longer face out-of-pocket costs. According to federal rules for health plan years starting after May 31, the follow-up test is considered an integral part of the preventive screening, and patients can't be charged anything for it by their health plan.
The new rule may encourage more people to get colorectal cancer screenings, cancer experts said, since people can do a stool-based test at home.
Nine states already required similar coverage in the plans they regulate. Arkansas, California, Illinois, Indiana, Kentucky, Maine, Oregon, Rhode Island, and Texas don't allow patients to be charged for follow-up colonoscopies after a positive stool-based test, according to Fight Colorectal Cancer, an advocacy group. New York recently passed a bill that is expected to be signed into law soon, said Molly McDonnell, the organization's director of advocacy.
In recent years, advocates have also pushed to eliminate cost sharing for breast cancer diagnostic services. A federal bill that would require health plans to cover diagnostic imaging for breast cancer without patient cost sharing — just as they do for preventive screening for the disease — has bipartisan support but hasn’t made headway.
In the meantime, a handful of states — Arkansas, Colorado, Illinois, Louisiana, New York, and Texas — have moved ahead on this issue, according to tracking by Susan G. Komen, an advocacy organization for breast cancer patients that works to get these laws passed.
This year, an additional 10 states introduced legislation similar to the federal bill, according to Komen. In two of them — Georgia and Oklahoma — the measures passed.
These state laws apply only to state-regulated health plans, however. Most people are covered by employer-sponsored, self-funded plans that are regulated by the federal government.
"The primary pushback we get comes from insurers," said Molly Guthrie, vice president of policy and advocacy at Komen. "Their argument is cost." But, she said, there are significant cost savings if breast cancer is identified and treated in its early stages.
A study that analyzed claims data after a breast cancer diagnosis in 2010 found that the average overall costs for people diagnosed at stage 1 or 2 were just more than $82,000 in the year after diagnosis. When breast cancer was diagnosed at stage 3, the average costs jumped to nearly $130,000. For people with a stage 4 diagnosis, costs in the year afterward exceeded $134,000. Disease stages are determined based on tumor size and spread, among other factors.
When asked to provide health plans' perspective on eliminating cost sharing for follow-up testing after an abnormal result, a spokesperson for a health insurance trade group declined to elaborate.
"Health plans design their benefits to optimize affordability and access to quality care," David Allen, a spokesperson for AHIP, said in a statement. "When patients are diagnosed with medical conditions, their treatment is covered based on the plan they choose."
In addition to cancer screenings, dozens of preventive services are recommended by the U.S. Preventive Services Task Force and must be covered without charging patients under the Affordable Care Act if they meet age or other screening criteria.
But if health plans are required to cover diagnostic cancer testing without charging patients, will eliminating cost sharing for follow-up testing after other types of preventive screenings — for abdominal aortic aneurysms, for example — be far behind?
Bring it on, said Fendrick. The health system could absorb those costs, he said, if some low-value preventive care that isn't recommended, such as cervical cancer screening in most women older than 65, were discontinued.
"That is a slippery slope that I really want to ski down," he said.
A deal with Oak Street Health gives the primary care provider exclusive rights to use the trusted AARP brand in its marketing — for which the company pays AARP an undisclosed fee.
This article was published on Monday, June 6, 2022 in Kaiser Health News.
In September, AARP, the giant organization for older Americans, agreed to promote a burgeoning chain of medical clinics called Oak Street Health, which has opened more than 100 primary care outlets in nearly two dozen states.
The deal gave Oak Street exclusive rights to use the trusted AARP brand in its marketing — for which the company pays AARP an undisclosed fee.
AARP doesn’t detail how this business relationship works or how companies are vetted to determine they are worthy of the group’s coveted seal of approval. But its financial reports to the IRS show that AARP collects a total of about $1 billion annually in these fees — mostly from healthcare-related businesses, which are eager to sell their wares to the group’s nearly 38 million dues-paying members. And a paid AARP partnership comes with a lot: AARP promotes its partners in mailings and on its website, and the partners can use the familiar AARP logo for advertisements in magazines, online, or on television. AARP calls the payments “royalties.”
AARP’s 2020 financial statement, the latest available, reports just over $1 billion in royalties. That’s more than three times what it collected in member dues, just over $300 million, according to the report. Of the royalties, $752 million were from unnamed “health products and services.”
But controversy has long dogged these sorts of alliances, which have multiplied over the years, and the latest is no exception. Are the chosen partners actually a good choice for AARP’s members, or are they buying the endorsement of one of the country’s most respected organizations with lavish payments?
“I don’t have a problem with AARP endorsing travel packages,” said Marilyn Moon, a health policy analyst who worked for the group in the 1980s. But when AARP lobbies on Medicare issues while profiting off partnerships with those who are marketing to Medicare patients, “that certainly is a problem,” Moon said.
There are reasons for concern about the latest partnership. Less than two months after announcing the AARP deal, Oak Street revealed it was the subject of a Justice Department civil investigation into its marketing tactics, including whether it violated a federal law that imposes penalties for filing false claims for payment to the government. Oak Street has denied wrongdoing and says it is cooperating with the investigation.
Companies like Oak Street, whose funders have included private equity investors, have alarmed progressive Democrats and some health policy analysts, who worry the companies may try to squeeze excessive profits from Medicare with the services they market mainly to people 65 or older. Oak Street hopes it can cut costs by keeping patients healthy and in the process turn a profit, though it has yet to show it can do so.
AARP has stood for decades as the dominant voice for older Americans, though people of any age can join. Members pay $16 a year or less and enjoy discounts on hundreds of items, from cellphones to groceries to hotels. AARP also staffs a busy lobbying shop that influences government policy on a plethora of issues that affect older people, including the future and solvency of Medicare.
Perhaps not as well known: that AARP depends on royalty income to help “serve the needs of those 50-plus through education, programs and advocacy,” said Jason Young, a former AARP senior vice president.
“Since our founding, AARP has engaged with the private sector to help advance our nonprofit social mission, including by licensing our brand to vetted companies that are meeting the needs of people as they age,” Young told KHN in an email before leaving his AARP position last month.
For years, AARP has drawn intermittent scrutiny for its longtime partnership with UnitedHealthcare, which uses the AARP seal of approval to market products that fill gaps in the traditional Medicare program — gaps filled by private insurers.
The arrangement has brought in hundreds of millions of dollars in annual royalties, according to court records.
Young said AARP “advocates for policies that are in the best interests of seniors without regard to how it may impact revenue or any licensing agreements.” He said AARP “has taken many strong stands against the insurance industry,” citing opposition in 2017 to proposed legislation that AARP said could have hiked seniors’ premiums by as much as $3,000 a year.
John Rother, who left AARP in 2011 after more than two decades as its policy chief, said business interests were “never a consideration” in these decisions. “I can absolutely say that was never the case,” Rother said. “We separated those operations.”
But that alliance raises alarms among critics who see a conflict of interest that undermines the group’s credibility to speak for all seniors on critical Medicare policy issues.
AARP “is in the insurance business,” said Bruce Vladeck, who ran the Medicare program for several years during the Clinton administration. “There ought to be accountability and visibility about it,” he said.
In 2020, a conservative group called American Commitment went further, concluding that AARP “has grown into a marketing and sales firm with a public policy advocacy group on the side.”
Keeping People Healthy
In a November 2021 conference call with analysts, Oak Street Health CEO Mike Pykosz said he was “thrilled” to be the first primary care medical provider endorsed by AARP, a decision he said would “enhance our ability to attract and engage patients.”
The company offers “value-based” care to more than 150,000 Medicare patients. AARP officials would not discuss why the group had picked Oak Street Health, except to say that it favors experiments that could improve the quality of medical care and hold down costs.
Oak Street receives a flat monthly rate from insurers for each patient. That “allows us to focus on those services that have the greatest impact on keeping people healthy, such as behavioral health and screening 100% of our patients for the social determinants of health — including food and housing insecurity,” Erica Frank, the company’s vice president of public relations, said in an email.
Frank said Oak Street sees patients in many places where primary care is “either hard to come by or not available.” The company’s patients are seen almost eight times a year on average, versus just three visits for the average person on Medicare, Frank said.
Many of Oak Street’s treatment centers are in communities where poverty levels exceed national norms. The centers typically feature distinctive green and white colors throughout and contain a “community room” with a big-screen television that is also used for activities such as exercise, cooking, and computer classes.
Oak Street participates in a pilot project called “direct contracting,” which Medicare advanced in the final days of the Trump administration. In direct contracting, medical providers accept a set fee to cover all of a person’s medical needs.
In a Senate Finance Committee hearing on Feb. 2, Sen. Elizabeth Warren (D-Mass.) argued that direct contracting rewards “corporate vultures.” Warren said companies could pocket as much as 40% of their payments as profit.
Supporters argued these concerns were overblown, but the federal Centers for Medicare & Medicaid Services, or CMS, announced a redesign of the pilot program in late February.
The scope of the Justice Department review of Oak Street is unclear. According to the company, DOJ is investigating whether it violated the False Claims Act and is seeking documents related to “third-party marketing agents” and “provision of free transportation” to patients.
Amanda Davis, an AARP senior adviser for advocacy and external relations, said the group learned of the DOJ matter when Oak Street disclosed it publicly on Nov. 8, 2021 — less than seven weeks after their joint venture was announced. “We are closely monitoring this issue’s development and expect all providers to fully comply with all laws and regulations,” she wrote in an email.
Likewise, AARP will not say how much Oak Street paid to become a partner, only that the fee is “for the use of its intellectual property” and that “these fees are used for the general purposes of AARP.” Some feel that’s not enough.
“I think the vast majority of people signing up for these products are not aware that AARP is paid a very large amount for use of their name,” said Dr. David Himmelstein, a physician and professor in the City University of New York’s School of Urban Public Health at Hunter College. He added: “If you are making hundreds of millions selling [health] insurance, it gives you a strong interest in assuring that product remains attractive for people to buy.”
Promoting Independence
Since its founding in 1958 by a retired high school principal, AARP says it has acted “to promote independence, dignity and purpose for older persons.”
The AARP Foundation provides services such as passing out more than 3 million meals in low-income neighborhoods during the pandemic and assisting older people with tax preparation and legal matters. AARP also awards millions of dollars in annual grants to a wide range of organizations. (KFF, which operates KHN, received a $100,000 grant from the AARP Public Policy Institute for “general support” of KFF’s work on Medicare in 2020 and a similar amount the two previous years related to Medicare policy issues.)
Last year, AARP spent more than $13.6 million on lobbying, according to Open Secrets. More than 60 AARP lobbyists opined on dozens of legislative proposals, from bills intended to protect seniors from scammers to holding nursing homes accountable, according to the campaign finance watchdog group.
Although many supporters argue that AARP pursues worthy goals, criticism of its business dealings goes back years. A 2008 media exposé reported that some AARP members had overpaid for insurance policies because they assumed AARP had the cheapest deal. In 2011, a congressional investigation led by House Republicans found it “unlikely that AARP could survive financially, with its current expenses, if the hundreds of millions of dollars in annual insurance industry revenue disappeared.” The report also questioned whether AARP deserved its tax-exempt status as a nonprofit.
AARP’s health insurance pacts, which UnitedHealthcare refers to as a “strategic alliance,” have been challenged in nearly a dozen federal lawsuits as well — though AARP has prevailed so far.
One group of lawsuits has targeted a type of co-branded AARP-UnitedHealthcare policies called Medigap, which Medicare enrollees buy to pay for items such as copayments for hospital stays and doctor visits. These policies cover about 4.4 million people, according to the company.
AARP receives 4.95% of the premium, which it takes as its royalty, according to court filings. Several lawsuits have argued that amounts to an illegal commission because AARP is not licensed to sell insurance, court records show. The lawsuits cite AARP records showing annual income of hundreds of millions of dollars from the sales.
Federal judges have consistently dismissed such cases, however, ruling that state regulators had approved the rates or that buyers didn’t suffer any real damage.
Helen Krukas, a retiree who lives in Boca Raton, Florida, is appealing in the U.S. Court of Appeals for the District of Columbia Circuit. She claims AARP failed to disclose that it was “syphoning” 4.95% of what she paid for her policy.
In a deposition, Krukas testified that she “always thought of AARP as a club that negotiates on the behalf of retired people” and “it didn’t even occur to me to look anyplace else” for a policy. “Had I known that they were receiving money for it, I would have gone and shopped around with other brokers,” she said.
Calling for Transparency
AARP has also faced challenges for another type of UnitedHealthcare Medicare policy it has promoted in recent years, called Medicare Advantage.
Critics cite a range of fault-finding government reports, audits, and whistleblower lawsuits targeting such products.
Dr. Donald Berwick, a former administrator of CMS, said Medicare Advantage plans have devised “legal ways” to game the billing system so they get paid “a lot more for writing down things that don’t have much to do with the actual needs of the patients.”
AARP, which strongly supported the 2003 law that created Medicare Advantage, has received a fixed monthly fee from UnitedHealthcare for use of its name in marketing the health plans, according to the 2011 congressional investigation. How much AARP wouldn’t say, then or now.
Medicare pays the insurer a fixed monthly payment for each patient, which rises proportionally to each patient’s burden of illness. More than two dozen whistleblower lawsuits have accused health plans, including UnitedHealthcare, of ripping off Medicare by exaggerating how sick patients are.
Medicare Advantage plans offer tempting extra benefits, such as eyeglasses and hearing aids, and proponents say they cost seniors less than traditional Medicare. But many policy experts argue the plans soak taxpayers for billions of dollars in overpayments every year.
UnitedHealthcare spokesperson Heather Soule told KHN via email that the company “sees incredible value in Medicare Advantage.” When compared with original Medicare, Medicare Advantage “costs less, has better quality, access, and outcomes with greater coverage and benefits and nearly 100% consumer satisfaction,” according to the company.
But the Justice Department’s civil fraud case alleges that UnitedHealthcare reaped $1 billion or more in illegal overcharges. The company has denied the allegations, and the case is set for trial late next year.
As the debate over how to contain Medicare costs intensifies, reformers say AARP should be an ally, not a beneficiary of industry largess.
“It’s hard to know whether they’re advocating for their business interests or for the seniors that they are supposed to represent,” said Joshua Gordon, director of health policy for the Committee for a Responsible Federal Budget, a nonpartisan group.
Trainees are banding together in California and other states to demand higher wages and better benefits and working conditions amid intensifying burnout during the pandemic.
In the early weeks of the pandemic, Dr. Lorenzo González, then a second-year resident of family medicine at Harbor-UCLA Medical Center, ran on fumes, working as many as 80 hours a week in the ICU. He was constantly petrified that he would catch the COVID-19 virus and guilt-ridden for not having enough time to help his ailing father.
In April 2020, his father, a retired landscaper, died of heart and lung failure. González mourned alone. His job as a doctor-in-training put him at high risk of catching the virus, and he didn't want to inadvertently spread it to his family. Financial stress also set in as he confronted steep burial costs.
Now, González is calling for better pay and benefits for residents who work grueling schedules at Los Angeles County's public hospitals for what he said amounts to less than $18 an hour — while caring for the county's most vulnerable patients.
"They're preying on our altruism," González said of the hospitals. He is now chief resident of family medicine at Harbor-UCLA and president of the Committee of Interns and Residents, a national union that represents physician trainees and that is part of the Service Employees International Union.
"We need acknowledgment of the sacrifices we've made," he said.
Residents are newly minted physicians who have finished medical school and must spend three to seven years training at established teaching hospitals before they can practice independently. Under the supervision of a teaching physician, residents examine, diagnose, and treat patients. Some seek additional training in medical specialties as "fellows."
These trainees are banding together in California and other states to demand higher wages and better benefits and working conditions amid intensifying burnout during the pandemic. They join nurses, nursing assistants, and other healthcare workers who are unionizing and threatening to strike as staffing shortages, the rising cost of living, and inconsistent supplies of personal protective equipment and COVID vaccines have pushed them to the brink.
"Residents were always working crazy hours, then the stress of the pandemic hit them really hard," said John August, a director at Cornell University's School of Industrial and Labor Relations.
The Association of American Medical Colleges, a group that represents teaching hospitals and medical schools, did not address the unionization trend among residents directly, but the organization's chief healthcare officer, Dr. Janis Orlowski, said through a spokesperson that a residency is a working apprenticeship and that a resident's primary role is to be trained.
Residents are paid as trainees while they are studying, training, and working, Orlowski said, and the association works to ensure that they receive effective training and support.
David Simon, a spokesperson for the California Hospital Association, declined to comment. But he forwarded a study published in JAMA Network Open in September showing that surgery residents in unionized programs did not report lower rates of burnout than those in nonunionized programs.
So far, none of the new chapters have negotiated their first contracts, the national union said. But some of the longer-standing ones have won improvements in pay, benefits, and working conditions. Last year, a resident union at the University of California-Davis secured housing subsidies and paid parental leave through its first contract.
With more than 20,000 members, CIR represents about 1 in 7 physician trainees in the U.S. Executive Director Susan Naranjo said that before the pandemic one new chapter organized each year and that eight have joined in the past year and a half.
Residents' working conditions had come under scrutiny long before the pandemic.
The average resident salary in the U.S. in 2021 was $64,000, according to Medscape, a physician news site, and residents can work up to 24 hours in a shift but no more than 80 hours per week. Although one survey whose results were released last year found that 43% of residents felt they were adequately compensated, those who are unionizing say wages are too low, especially given residents' workload, their student loan debt, and the rising cost of living.
The pay rate disproportionately affects residents from low-income communities and communities of color, González said, because they have less financial assistance from family to subsidize their medical education and to pay for other costs.
But with little control over where they train — medical school graduates are matched to their residency by an algorithm — individual residents have limited negotiating power with hospitals.
For unionizing residents seeking a seat at the table, wage increases and benefits like housing stipends are often at the top of their lists, Naranjo said.
Patients deserve doctors who aren't exhausted and preoccupied by financial stress, said Dr. Shreya Amin, an endocrinology fellow at the University of Vermont Medical Center. She was surprised when the institution declined to recognize the residents' union, she said, considering the personal sacrifices they had made to provide care during the pandemic.
If a hospital does not voluntarily recognize a union, CIR can request that the National Labor Relations Board administer an election. The national union did so in April, and with a certified majority vote, the Vermont chapter can now begin collective bargaining, Naranjo said.
Annie Mackin, a spokesperson for the medical center, said in an email that it is proud of its residents for delivering exceptional care throughout the pandemic and respects their decision to join a union. Mackin declined to address residents' workplace concerns.
Dr. Candice Chen, an associate professor of health policy at George Washington University, believes that the federal Centers for Medicare & Medicaid Services also bears some responsibility for residents' working conditions. Because the agency pays teaching hospitals to train residents, it should hold the facilities accountable for how they treat them, she said. And the Accreditation Council for Graduate Medical Education, which sets work and educational standards for residency programs, is moving in the right direction with new requirements like paid family leave, she added, but needs to do more.
How far these unions will go to achieve their goals is an open question.
Strikes are rare among doctors. The last CIR strike was in 1975, by residents at 11 hospitals in New York.
Naranjo said a strike would be the last resort for its L.A. County members but blamed the county for continuously delaying and canceling bargaining sessions. Among its demands, the union is calling for the county to match the wage increase granted to members of SEIU 721, a union that represents other county employees, and for a $10,000 housing allowance.
The union's member surveys have found that most L.A. County residents report working 80 hours a week, Naranjo said.
A spokesperson for L.A. County's Department of Health Services, Coral Itzcalli, thanked its "heroic" front-line workforce for providing "best-in-class care" and acknowledged the significant toll that the pandemic has taken on their personal and professional lives. She said limits on hours are set by the Accreditation Council for Graduate Medical Education and that most trainees report working "significantly less" than 80 hours a week.
Jesus Ruiz, a spokesperson for the L.A. County Chief Executive Office, which manages labor negotiations for the county, said via email that the county hopes to reach a "fair and fiscally responsible contract" with the union.
Results of the strike vote are expected to be announced May 31, the union said.
Having just moved back to San Antonio, the 30-something searched for a doctor to manage her Crohn's disease, an inflammatory bowel condition that is successfully managed with medications and lifelong monitoring — including regular colonoscopies.
Mariel booked an appointment and learned she would be on the hook for a $1,100 colonoscopy — about three times what she had paid for the same test in a different state. Almost three-quarters of the bill would be a "facility fee" for the in-office procedure at a colonoscopy clinic. (KHN agreed not to disclose Mariel's last name because she is concerned speaking out might affect her doctor's willingness to manage her medical condition.)
Preventive colonoscopies are covered without patient cost sharing under the Affordable Care Act, but colonoscopies for patients with existing conditions, like Mariel, are not. A 2019 study found patients with inflammatory bowel diseases, including Crohn's disease, incur about $23,000 in healthcare costs a year. Medication treatments alone can cost tens of thousands of dollars annually.
But shopping around proved frustrating. Although San Antonio has plenty of gastroenterology offices, more than two dozen of them are controlled by the same private equity-backed group.
In 2018, one of the nation's largest independent gastroenterology practices, Texas Digestive Disease Consultants, announced a deal with the Chicago-based private equity firm Waud Capital to expand by offering management services to other physicians. At the time, the Dallas-based practice had 110 locations, mostly in Texas — including San Antonio. Today its management group, the GI Alliance, operates in a dozen states with more than 400 locations — and is growing fast.
With market dominance comes the business opportunity to set and maintain high prices. "It's pretty much the only game in town," Mariel said.
Private equity, known for making a profit on quick-turnaround investments in struggling businesses across many industries, has taken an increasingly active interest in healthcare in the past decade. It has invested in gastroenterology practices in recent years to tap into the revenue potential in meeting growing demand.
Tired of having to manage the increasingly complicated business of running a practice and, often, lured by the sweet deals investors offer, more and more doctors have partnered with or even sold their practices to private equity funds. So investment managers now control the financial decisions for many medical offices caring for patients with digestive ailments. With profit the primary driver, patients may find they pay much more for the same — or less — care.
The Centers for Disease Control and Prevention recently lowered the age at which healthy Americans are urged to begin routine screenings for colon cancer — ensuring that most will undergo regular colonoscopies beginning at age 45. And the population is aging, meaning more people will be needing the procedure.
For those 65 and older, Medicare picks up the tab. But even when a benign polyp is found during a simple screening, patients sometimes end up with an unexpected bill. And less-than-scrupulous providers often find ways to bill for some services, such as out-of-network anesthesia monitoring.
Studiesshow that private equity investment in healthcare results in more surprise bills and overall higher costs for patients. Surprise billing is the practice of charging insured patients for out-of-network care unknowingly received, including in emergencies and at otherwise in-network facilities.
Before a federal ban on surprise billing took effect this year, it was common for patients to get slapped with an expensive bill after being treated by an emergency room doctor employed by a private equity-owned staffing service — a problem that policy experts say was not a glitch but rather a business model for private equity companies.
Nearly 10% of the nation's 14,000 gastroenterologists were partners in or employed by a private-equity backed organization as of last fall, according to a report by Physician Growth Partners, which represents independent physician groups in transactions with private equity.
Complex government regulations, technological innovations, and insurance industry practices have driven many gastroenterologists to sell shares in their practices, said Praveen Suthrum, who runs a consulting company for physician practices. Many physicians argue reimbursement rates are too low to keep up with complex negotiations with insurers and the other rising costs of operating an independent practice.
Private equity typically purchases a stake in a healthcare practice, then adjusts its operations to make it more profitable. It may switch to cheaper suppliers, shorten appointment windows, bill aggressively, or lay off staff, to name a few strategies — the kind of changes that save money at the expense of patient care.
In December, NBC News reported on how one private equity-owned group of dermatology practices overbooked patients, lost test results, and leaned on cheaper labor from physician assistants and nurse practitioners who may miss critical diagnoses.
A study out last year from the National Bureau of Economic Research showed that when private equity owned a nursing home, patients were more likely to die in their first months there and much more likely to be prescribed antipsychotic drugs — which are known to increase mortality among the elderly. Taxpayer spending per procedure or service in a private equity-owned facility goes up about 11%.
Private equity has shown a lot of interest in healthcare practices that perform high-volume procedures, especially those with growth potential.
"Lots of people are needing injections in the eye for macular edema, and lots of people need colonoscopies, and lots of people need skin biopsies," said Dr. Jane Zhu, a health services researcher at Oregon Health and Science University in Portland who has studied the role of private equity in healthcare. "And these are things that will only grow in volume over time as the population ages."
Zhu said usually the investors start by acquiring a well-performing practice, or group of practices, in one geographic area — called a "platform practice."
"It's well established. It has some brand recognition," Zhu said. "It has good market reach. There may be multiple sites. It has lots of patients that are already affiliated with that practice, and they buy that up, and there are opportunities for consolidation."
Mergers create larger groups with more power to negotiate rates with insurance companies and charge what they'd like. The possibility of capitalizing on the good name of a respected practice alone may make it a valuable investment.
Zhu said these medical practices are considered a short- to medium-term investment, with an average period of three to eight years before the investors sell.
Suthrum said private equity firms are good at making their case to doctors, assuring them they'll let the doctors do the medicine while the businesspeople do the business.
Doctors think, "If I'm going to survive, then I will either have to sell myself to the hospital or, what is the alternative?" Suthrum said in an interview. "The alternative is private equity."
This article was adapted from a recent episode of "An Arm and a Leg," a podcast about the cost of healthcare, produced in partnership with KHN.
In this episode of the podcast, we find out why these doctors are selling their practices to private equity.
This podcast was released on Friday, May 27, 2022 by Kaiser Health News.
By Dan Weissmann
Private equity companies are the house-flippers of the investment world, and they’ve found their way into many areas of our lives. Now, they’re at gastroenterologists’ offices, too, hoping to change the way these doctors do business and make a quick buck selling the practice down the road.
In this episode of the podcast, we find out why these doctors are selling their practices to private equity to begin with, and what it could mean for the quality and cost of your healthcare.
When Melissa Boughton complained to her OB-GYN about dull pelvic pain, the doctor responded by asking about her diet and exercise habits.
The question seemed irrelevant, considering the type of pain she was having, Boughton thought at the time. But it wasn't unusual coming from this doctor. "Every time I was in there, she'd talk about diet and exercise," said Boughton, who is 34 and lives in Durham, North Carolina.
On this occasion, three years ago, the OB-GYN told Boughton that losing weight would likely resolve the pelvic pain. The physician brought up diet and exercise at least twice more during the appointment. The doctor said she'd order an ultrasound to put Boughton's mind at ease.
The ultrasound revealed the source of her pain: a 7-centimeter tumor filled with fluid on Boughton's left ovary.
"I hate that doctor for the way she treated me — like my pain was no big deal," Boughton said. "She seemed to make a decision about me based off of a very cursory look."
Research has long shown that doctors are less likely to respect patients who are overweight or obese, even as nearly three-quarters of adults in the U.S. now fall into one of those categories. Obesity, which characterizes patients whose body mass index is 30 or higher, is pervasive in the South and Midwest, according to the Centers for Disease Control and Prevention. The state with the highest rate is Mississippi, where 4 in 10 adults qualify as obese.
Obesity is a common, treatable condition linked to a long list of health risks, including Type 2 diabetes, heart disease, and some cancers. Despite obesity's prevalence, it carries a unique stigma.
Doctors often approach the practice of medicine with an anti-fat bias and struggle to communicate with patients whose weight exceeds what's considered the normal range. Some obesity experts blame a lack of focus on the subject in medical schools. Others blame a lack of empathy.
To counter that, the Association of American Medical Colleges plans to roll out in June new diversity, equity, and inclusion standards aimed at teaching doctors, among other things, about respectful treatment of people diagnosed as overweight or obese.
That's not happening for many patients, said Dr. Scott Butsch, director of obesity medicine at the Cleveland Clinic's Bariatric and Metabolic Institute. "This is almost like malpractice. You have these physicians or clinicians — whoever they are — relating everything to the patient's obesity without investigation," Butsch said. "The stereotypes and misperceptions around this disease just bleed into clinical practice."
The problem, Butsch argued, is that too little attention is paid to obesity in medical school. When he trained and taught at Harvard Medical School for several years, Butsch said, students received no more than nine hours of obesity education spread over three days in four years.
In 2013, the American Medical Association voted to recognize obesity as a disease. But, Butsch said, doctors often approach it with a one-size-fits-all approach. "Eat less, move more" doesn't work for everyone, he said.
Parents and medical providers need to take special care when talking to children who have been diagnosed with obesity about their weight, psychologists have warned. The way parents and providers talk to kids about their weight can have lifelong consequences and in some cases trigger unhealthy eating habits. For children who are obese, obesity experts agree, weight loss isn't always the goal.
"There are many different forms of obesity, but we're treating them like we're giving the same chemotherapy to all kinds of cancer," Butsch said.
All but four of the country's 128 M.D.-granting medical schools reported covering content related to obesity and bariatric medicine in the 2020-21 academic year, according to curriculum data provided to KHN by the Association of American Medical Colleges, which does not represent osteopathic schools.
Even so, research suggests that many physicians haven't been sufficiently trained to address weight issues with patients and that obesity education in medical schools across the world is "grossly neglected." A survey completed by leaders at 40 U.S. medical schools found that only 10% felt their students were "very prepared" to manage patients with obesity.
Meanwhile, "half of the medical schools surveyed reported that expanding obesity education was a low priority or not a priority," wrote the authors of a 2020 journal article that describes the survey's results.
Butsch wants Congress to pass a resolution insisting that medical schools incorporate substantive training on nutrition, diet, and obesity. He acknowledged, though, that the medical school curriculum is already packed with subject matter deemed necessary to cover.
Dr. David Cole, president of the Medical University of South Carolina, said plenty of topics should be covered more comprehensively in medical school but aren't. "There's this massive tome — it's about this big," Cole said, raising his hand about a foot off the top of a conference table in Charleston. "The topic is: Things I never learned in medical school."
The bigger issue, he said, is that medicine has historically been taught to emphasize memorization and has failed to emphasize culturally competent care. "That was valid 100 years ago, if you were supposed to be the fount of all knowledge," Cole said. "That's just not valid anymore."
The Association of American Medical Colleges is trying to tackle the problem in two ways.
First, it developed a professional readiness exam for aspiring medical school students, called PREview, designed to assess an applicant's cultural competence, social skills, and listening skills, as well as their ability to think through situations they may encounter in medical school and clinical settings. "We call them softer skills, but they're really the harder ones to learn," said Lisa Howley, an educational psychologist and senior director of strategic initiatives at the association. More than a dozen medical schools now recommend or require that applicants submit their PREview test scores with their Medical College Admission Test scores.
Second, the medical college association will roll out new competency standards for existing medical students, residents, and doctors related to diversity, equity, and inclusion in June. Those standards will address racism, implicit bias, and gender equality and will aim to teach doctors how to talk with people who are overweight.
"The bias toward those individuals is way too high," Howley said. "We have a lot more work to do in this space."
After the source of Melissa Boughton's pelvic pain was discovered, the OB-GYN who had recommended diet and exercise to ease her symptoms told Boughton the tumor was no big deal. "She acted like it was the most normal thing in the world," Boughton said.
Boughton sought a second opinion from a doctor who marketed her practice as a "Healthy at Every Size" office. That doctor referred Boughton to a surgical oncologist, who removed the tumor, her left ovary, and part of a fallopian tube. The tumor was large, but it wasn't cancerous. And although the surgery to remove it was considered successful, Boughton has since had trouble conceiving and is undergoing fertility treatment as she tries to have a baby.
"It's an emotional roller coaster," she said. "I feel very young at 34 to be going through this."
Boughton — who describes herself as someone who doesn't "fit into the BMI box" — said the experience taught her to choose her doctors differently.
"You can ask me if I diet and exercise like once," she said. Any more than that, and she starts shopping for a different doctor.
The Fierro family of Yuma, Arizona, had a string of bad medical luck that started in December 2020.
That's when Jesús Fierro Sr. was admitted to the hospital with a serious COVID-19 infection. He spent 18 days at Yuma Regional Medical Center, where he lost 60 pounds. He came home weak and dependent on an oxygen tank.
Then, in June 2021, his wife, Claudia, fainted while waiting for a table at the local Olive Garden. She felt dizzy one minute and was in an ambulance on her way to the same medical center the next. She was told her magnesium levels were low and was sent home within 24 hours.
The family has health insurance through Jesús Sr.'s job. But it didn't protect the Fierros from owing thousands of dollars. So, when their son Jesús Fierro Jr. dislocated his shoulder, the Fierros — who hadn't yet paid the bills for their own care — opted out of U.S. healthcare and headed south to the U.S.-Mexico border.
And no other bills came for at least one member of the family.
The Patients: Jesús Fierro Sr., 48; Claudia Fierro, 51; and Jesús Fierro Jr., 17. The family has Blue Cross Blue Shield of Texas health insurance through Jesús Sr.'s employment with NOV Inc., formerly National Oilwell Varco, a multinational oil company.
Medical Services: For Jesús Sr., 18 days of inpatient care for a severe COVID infection. For Claudia, less than 24 hours of emergency care after fainting. For Jesús Jr., a walk-in appointment for a dislocated shoulder.
Total Bills: Jesús Sr. was charged $3,894.86. The total bill was $107,905.80 for COVID treatment. Claudia was charged $3,252.74, including $202.36 for treatment from an out-of-network physician. The total bill was $13,429.50 for less than a day of treatment. Jesús Jr. was charged about $5 (70 pesos) for an outpatient visit that the family paid in cash.
Service Providers:Yuma Regional Medical Center, a 406-bed, nonprofit hospital in Yuma, Arizona. It's in the Fierros' insurance network. And a private doctor's office in Mexicali, Mexico, which is not.
What Gives: The Fierros were trapped in a situation that more and more Americans find themselves in: They are what some experts term "functionally uninsured." They have insurance — in this case, through Jesús Sr.'s job, which pays $72,000 a year. But their health plan is expensive, and they don't have the liquid savings to pay their "share" of the bill. The Fierros' plan says their out-of-pocket maximum is $8,500 a year for the family. And in a country where even a short stay in an emergency room is billed at a staggering sum, that means minor encounters with the medical system can take virtually all of the family's disposable savings, year after year. And that's why the Fierros opted out.
According to the terms of the insurance plan, which has a $2,000 family deductible and 20% coinsurance, Jesús Sr. owed $3,894.86 of a total bill of nearly $110,000 for his COVID care in late 2020.
The Fierros are paying off that bill — $140 a month — and still owe more than $2,500. In 2020, most insurers agreed to waive cost-sharing payments for COVID-19 treatment after the passage of federal COVID relief packages that provided emergency funding to hospitals. But waiving treatment costs was optional under the law. And although Blue Cross Blue Shield of Texas has a posted policy saying it would waive cost sharing through the end of 2020, the insurer didn't do that for Jesús Sr.'s bill. Carrie Kraft, a spokesperson for the insurer, wouldn't discuss why his COVID bill was not waived.
(More than two years into the pandemic and with vaccines now widely available to reduce the risk of hospitalization and death, most insurers again charge patients their cost sharing.)
On Jan. 1, 2021, the Fierros' deductible and out-of-pocket maximum reset. So when Claudia fainted — a fairly common occurrence and rarely indicative of a serious problem — she was sent by ambulance to the emergency room, leaving the Fierros with another bill of more than $3,000. That kind of bill is a huge stress on the average American family; fewer than half of U.S. adults have enough savings to cover a surprise $1,000 expense. In recent polling by KFF, "unexpected medical bills" ranked second among family budget worries, behind gas prices and other transportation costs.
The new bill for a fainting spell destabilized the Fierros' household budget. "We thought about taking a second loan on our house," said Jesús Sr., a Los Angeles native. When he called the hospital to ask for financial assistance, he said, people he spoke with strongly discouraged him from applying. "They told me that I could apply but that it would only lower Claudia's bill by $100," he said.
So when Jesús Jr. dislocated his shoulder boxing with his brother, the family headed south.
Jesús Sr. asked his son, "Can you bear the pain for an hour?" The teen replied, "Yes."
Father and son took the hourlong trip to Mexicali, Mexico, to Dr. Alfredo Acosta's office.
The Fierros don't consider themselves "health tourists." Jesús Sr. crosses the border into Mexicali every day for his work, and Mexicali is Claudia's hometown. They've been traveling to the neighborhood known as La Chinesca ("Chinatown") for years to see Acosta, a general practitioner, who treats the asthma of their youngest son, Fernando, 15. Treatment for Jesús Jr.'s dislocated shoulder was the first time they had sought emergency care from the physician. The price was right, and the treatment effective.
A visit to a U.S. emergency room likely would have involved a facility fee, expensive X-rays, and perhaps an orthopedic specialist's evaluation — which would have generated thousands of dollars in bills. Acosta adjusted Jesús Jr.'s shoulder so that the bones aligned in the socket and prescribed him ibuprofen for soreness. The family paid cash on the spot.
Although the Centers for Disease Control and Prevention doesn't endorse traveling to another country for medical care, the Fierros are among millions of Americans each year who do so. Many of them are fleeing expensive care in the U.S., even with health insurance.
Acosta, who is from the Mexican state of Sinaloa and is a graduate of the Autonomous University of Sinaloa, moved to Mexicali 20 years ago. He witnessed firsthand the growth of the medical tourism industry.
He sees about 14 patients a day (no appointment necessary), and 30% to 40% of those are from the U.S. He charges $8 for typical visits.
In Mexicali, a mile from La Chinesca, where the family doctors have their modest offices, are medical facilities that rival those in the United States. The facilities have international certification and are considered expensive, but they are still cheaper than hospitals in the U.S.
Resolution: Both Blue Cross Blue Shield of Texas and Yuma Regional Medical Center declined to discuss the Fierros' bills with KHN, even though Jesús Sr. and Claudia gave written permission for them to do so.
In a statement, Yuma Regional Medical Center spokesperson Machele Headington said, "Applying for financial support starts with an application — a service we extended, and still extend, to these patients."
In an email, Kraft, the Blue Cross Blue Shield of Texas spokesperson, said: "We understand the frustration our members experience when they receive a bill containing COVID-19 charges that they do not understand, or feel may be inappropriate."
The Fierros are planning to apply to the hospital for financial support for their outstanding debts. But Claudia said never again. "I told Jesús, 'If I faint again, please drive me home,'" rather than calling an ambulance, she said.
"We pay $1,000 premium monthly for our employment-based insurance," added Jesús. "We should not have to live with this stress."
The Takeaway: Be aware that your deductible "meter" starts over every year and that virtually any emergency care can generate a bill in the thousands of dollars and may leave you owing most of your deductible and out-of-pocket maximum.
Also be aware that even if you seem not to qualify for financial assistance based on a hospital's policy, you can apply and explain your circumstances. Because of the high cost of care in the U.S., even many middle-income people qualify. And many hospitals give their finance departments leeway to adjust bills. Some patients discover that if they offer to pay cash on the spot, the bill can be reduced dramatically.
All nonprofit hospitals have a legal obligation to help patients: They pay no tax in exchange for providing "community benefit." Make a case for yourself, and ask for a supervisor if you get an initial "no."
For elective procedures, patients can follow the Fierros' example, becoming savvy healthcare shoppers. Recently, Claudia needed an endoscopy to evaluate an ulcer. The family has been calling different facilities and discovered a $500 difference in the cost of an endoscopy. They will soon drive to a medical center in Central Valley, California, two hours from home, for the procedure.
The Fierros didn't even consider going back to their local hospital. "I don't want to say 'hello' and receive a $3,000 bill," joked Jesús Sr.
Stephanie O'Neill contributed the audio portrait with this story.
Bill of the Month is a crowdsourced investigation by KHN and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!