Employers Use Patient Assistance Programs to Offset Their Own Costs

KFF Health News, December 6, 2022

Employers are using a new strategy to deal with the high cost of drugs prescribed to treat conditions such as arthritis, psoriasis, cancer, and hemophilia.

This article was published on December 6, 2022 in Kaiser Health News.

By Julie Appleby, Kaiser Health News

Anna Sutton was shocked when she received a letter from her husband's job-based health plan stating that Humira, an expensive drug used to treat her daughter's juvenile arthritis, was now on a long list of medications considered "nonessential benefits."

The July 2021 letter said the family could either participate in a new effort overseen by a company called SaveOnSP and get the drug free of charge or be saddled with a monthly copayment that could top $1,000.

"It really gave us no choice," said Sutton, of Woodinville, Washington. She added that "every single FDA-approved medication for juvenile arthritis" was on the list of nonessential benefits.

Sutton had unwittingly become part of a strategy that employers are using to deal with the high cost of drugs prescribed to treat conditions such as arthritis, psoriasis, cancer, and hemophilia.

Those employers are tapping into dollars provided through programs they have previously criticized: patient financial assistance initiatives set up by drugmakers, which some benefit managers have complained encourage patients to stay on expensive brand-name drugs when less expensive options might be available.

Now, though, employers, or the vendors and insurers they hire specifically to oversee such efforts, are seeking that money to offset their own costs. Drugmakers object, saying the money was intended primarily for patients. But some benefit brokers and companies like SaveOnSP say they can help trim employers' spending on insurance — which, they say, could be the difference between an employer offering coverage to workers or not.

It's the latest twist in a long-running dispute between the drug industry and insurers over which group is more to blame for rising costs to patients. And patients are, again, caught in the middle.

Patient advocates say the term "nonessential" stresses patients out even though it doesn't mean the drugs — often called "specialty" drugs because of their high prices or the way they are made — are unnecessary.

Some advocates fear the new strategies could be "a way to weed out those with costly healthcare needs," said Rachel Klein, deputy executive director of the AIDS Institute, a nonprofit advocacy group. Workers who rely on the drugs may feel pressured to change insurers or jobs, Klein said.

Two versions of the new strategy are in play. Both are used mainly by self-insured employers that hire vendors, like SaveOnSP, which then work with the employers' pharmacy benefit managers, such as Express Scripts/Cigna, to implement the strategy. There are also smaller vendors, like SHARx and Payer Matrix, some of which work directly with employers.

In one approach, insurers or employers continue to cover the drugs but designate them as "nonessential," which allows the health plans to bypass annual limits set by the Affordable Care Act on how much patients can pay in out-of-pocket costs for drugs. The employer or hired vendor then raises the copay required of the worker, often sharply, but offers to substantially cut or eliminate that copay if the patient participates in the new effort. Workers who agree enroll in drugmaker financial assistance programs meant to cover the drug copays, and the vendor monitoring the effort aims to capture the maximum amount the drugmaker provides annually, according to a lawsuit filed in May by drugmaker Johnson & Johnson against SaveOnSP, which is based in Elma, New York.

The employer must still cover part of the cost of the drug, but the amount is reduced by the amount of copay assistance that is accessed. That assistance can vary widely and be as much as $20,000 a year for some drugs.

In the other approach, employers don't bother naming drugs nonessential; they simply drop coverage for specific drugs or classes of drugs. Then, the outside vendor helps patients provide the financial and other information needed to apply for free medication from drugmakers through charity programs intended for uninsured patients.

"We're seeing it in every state at this point," said Becky Burns, chief operating officer and chief financial officer at the Bleeding and Clotting Disorders Institute in Peoria, Illinois, a federally funded hemophilia treatment center.

The strategies are mostly being used in self-insured employer health plans, which are governed by federal laws that give broad flexibility to employers in designing health benefits.

Still, some patient advocates say these programs can lead to delays for patients in accessing medications while applications are processed — and sometimes unexpected bills for consumers.

"We have patients get billed after they max out their assistance," said Kollet Koulianos, vice president of payer relations at the National Hemophilia Foundation. Once she gets involved, vendors often claim the bills were sent in error, she said.

Even though only about 2% of the workforce needs the drugs, which can cost thousands of dollars a dose, they can lead to a hefty financial liability for self-insured employers, said Drew Mann, a benefits consultant in Knoxville, Tennessee, whose clientele includes employers that use variations of these programs.

Before employer health plans took advantage of such assistance, patients often signed up for these programs on their own, receiving coupons that covered their share of the drug's cost. In that circumstance, drugmakers often paid less than they do under the new employer schemes because a patient's out-of-pocket costs were capped at lower amounts.

Brokers and the CEOs of firms offering the new programs say that in most cases patients continue to get their drugs, often with little or no out-of-pocket costs.

If workers do not qualify for charity because their income is too high, or for another reason, the employer might make an exception and pay the claim or look for an alternative solution, Mann said. Patient groups noted that some specialty drugs may not have any alternatives.

How this practice will play out in the long run remains uncertain. Drugmakers offer both copay assistance and charity care in part because they know many patients, even those with insurance, cannot afford their products. The programs are also good public relations and a tax write-off. But the new emphasis by some employers on maximizing the amount they or their insurers can collect from the programs could cause some drugmakers to take issue with the new strategies or even reconsider their programs.

"Even though our client, like most manufacturers, provides billions in discounts and rebates to health insurers as part of their negotiations, the insurers also want this additional pool of funds, which is meant to help people who can't meet the copay," said Harry Sandick, a lawyer representing J&J.

J&J's lawsuit, filed in U.S. District Court in New Jersey, alleges that patients are "coerced" into participating in copay assistance programs after their drugs are deemed "nonessential" and therefore are "no longer subject to the ACA's annual out-of-pocket maximum."

Once patients enroll, the money from the drugmaker goes to the insurer or employer plan, with SaveOnSP retaining 25%, according to the lawsuit. It claims J&J has lost $100 million to these efforts.

None of that money counts toward patients' deductibles or out-of-pocket maximums for the year.

In addition to the lawsuit over the copay assistance program efforts, there has been other reaction to the new employer strategies. In an October letter to physicians, the Johnson & Johnson Patient Assistance Foundation, a separate entity, said it will no longer offer free medications to patients with insurance starting in January, citing the rise of such "alternative funding programs."

Still, J&J spokesperson L.D. Platt said the drugmaker has plans, also in January, to roll out other assistance to patients who may be "underinsured" so they won't be affected by the foundation's decision.

In a statement, SaveOnSP said that employers object to drug companies' "using their employees' ongoing need for these drugs as an excuse to keep hiking the drugs' prices" and that the firm simply "advises these employers on how to fight back against rising prices while getting employees the drugs they need at no cost to the employees."

In a court filing, SaveOnSP said drugmakers have another option if they don't like efforts by insurers and employers to max out what they can get from the programs: reduce the amount of assistance available. J&J, the filing said, did just that when it recently cut its allotted amount of copay assistance for psoriasis drugs Stelara and Tremfya from $20,000 to $6,000 per participant annually. The filing noted that SaveOnSP participants would still have no copay for those drugs.

For Sutton's part, her family did participate in the program offered through her husband's work-based insurance plan, agreeing to have SaveOnSP monitor their enrollment and payments from the drugmaker.

So far, her 15-year-old daughter has continued to get Humira, and she has not been billed a copay.

Even so, "the whole process seems kind of slimy to me," she said. "The patients are caught in the middle between the drug industry and the insurance industry, each trying to get as much money as possible out of the other."

Julie Appleby: jappleby@kff.org, @Julie_Appleby

As STDs Proliferate, Companies Rush to Market At-Home Test Kits. But Are They Reliable?

KFF Health News, November 18, 2022

The issue for regulators is whether sampling kits can be reliably adapted for in-home use.

This article was published on Friday, November 18, 2022 in Kaiser Health News.

By Liz Szabo 

Among the more remarkable legacies of the COVID-19 pandemic is how quickly federal regulators, the healthcare industry, and consumers moved to make at-home testing a reliable tool for managing a public health crisis.

But that fast-track focus is missing from another, less publicized epidemic: an explosion in sexually transmitted diseases that can cause chronic pain and infertility among infected adults and disable or kill infected newborns. The disparity has amplified calls from researchers, public health advocates, and healthcare companies urging the federal government to greenlight at-home testing kits that could vastly multiply the number of Americans testing for STDs.

Online shoppers can already choose from more than a dozen self-testing kits, typically ranging in price from $69 to $500, depending on the brand and the variety of infections they can detect.

But, except for HIV tests, the Food and Drug Administration hasn't approved STD test kits for use outside a medical setting. That leaves consumers unsure about their reliability even as at-home use grows dramatically.

The STD epidemic is "out of control," said Dr. Amesh Adalja, a senior scholar at the Johns Hopkins University Center for Health Security. "We know we are missing diagnoses. We know that contact tracing is happening late or not at all. If we're really serious about tackling the STD crisis, we have to get more people diagnosed."

Preliminary data for 2021 showed nearly 2.5 million reported cases of chlamydia, gonorrhea, and syphilis in the U.S., according to the Centers for Disease Control and Prevention. Reported cases of syphilis and gonorrhea have been climbing for about a decade. In its most recent prevalence estimate, the agency said that on any given day, 1 in 5 Americans are infected with any of eight common STDs.

The push to make at-home testing for STDs as easy and commonplace as at-home COVID and pregnancy testing is coming from several sectors. Public health officials say their overextended staffers can't handle the staggering need for testing and surveillance. Diagnostic and pharmaceutical companies see a business opportunity in the unmet demand.

The medical science underpinning STD testing is not particularly new or mysterious. Depending on the test, it may involve collecting a urine sample, pricking a finger for blood, or swabbing the mouth, genitals, or anus for discharge or cell samples. Medical centers and community health clinics have performed such testing for decades.

The issue for regulators is whether sampling kits can be reliably adapted for in-home use. Unlike rapid antigen tests for COVID, which produce results in 15 to 20 minutes, the home STD kits on the market require patients to collect their own samples, and then package and mail them to a lab for analysis.

In the past three years, as the pandemic prompted clinics that provide low-cost care to drastically curtail in-person services, a number of public health departments — among them state agencies in Alabama, Alaska, and Maryland — have started mailing free STD test kits to residents. Universities and nonprofits are also spearheading at-home testing efforts.

And dozens of commercial enterprises are jumping into or ramping up direct-to-consumer sales. Everly Health, a digital health company that sells a variety of lab tests online, reported sales for its suite of STD kits grew 120% in the first half of this year compared with the first half of 2021.

CVS Health began selling its own bundled STD kit in October, priced at $99.99. Unlike most home kits, CVS' version is available in stores.

Hologic, Abbott, and Molecular Testing Labs are among the companies urgently developing tests. And Cue Health, which sells COVID tests, is poised to launch a clinical trial for a rapid home test for chlamydia and gonorrhea that would set a new bar, providing results in about 20 minutes.

Alberto Gutierrez, who formerly led the FDA office that oversees diagnostic tests, said agency officials have been concerned about the reliability of home tests for years. The FDA wants companies to prove that home collection kits are as accurate as those used in clinics, and that samples don't degrade during shipping.

"The agency doesn't believe these tests are legally marketed at this point," said Gutierrez, a partner at NDA Partners, a consulting firm that advises companies seeking to bring healthcare products to market.

"CVS should not be selling that test," he added.

In response to KHN questions, the FDA said it considers home collection kits, which can include swabs, lancets, transport tubes, and chemicals to stabilize the samples, to be devices that require agency review. The FDA "generally does not comment" on whether it plans to take action on any specific case, the statement said.

CVS spokesperson Mary Gattuso said the pharmacy chain is following the law. "We are committed to ensuring the products we offer are safe, work as intended, comply with regulations, and satisfy customers," Gattuso said.

Everly Health and other companies described their kits as laboratory-developed tests, akin to the diagnostics some hospitals create for in-house use. And they contend their tests can be legally marketed because their labs have been certified by a different agency, the Centers for Medicare & Medicaid Services.

"The instruments and assays used by the laboratories we use are comparable to — and often the same as — those used by the labs a doctor's office uses," said Dr. Liz Kwo, chief medical officer at Everly Health. "Our at-home sample collection methods, like dried blood spots and saliva, have been widely used for decades."

Home collection kits appeal to Uxmal Caldera, 27, of Miami Beach, Florida, who prefers to test in the privacy of his home. Caldera, who doesn't have a car, said home testing saves him the time and expense of getting to a clinic.

Caldera has been testing himself for HIV and other STDs every three months for more than a year, part of routine monitoring for people taking PrEP, a regimen of daily pills to prevent HIV infection.

"Doing it by yourself is not hard at all," said Caldera, who is uninsured but receives the tests free through a community foundation. "The instructions are really clear. I get the results in maybe four days. For sure, I would recommend it to other people."

Dr. Leandro Mena, director of the CDC's Division of STD Prevention, said he would like to see at-home STD testing become as routine as home pregnancy tests. An estimated 16 million to 20 million tests for gonorrhea and chlamydia are performed in the U.S. each year, Mena said. Widespread use of at-home STD testing, he said, could double or triple that number.

He noted that doctors have years of experience using home collection kits.

The Johns Hopkins Center for Point-of-Care Technologies Research for Sexually Transmitted Diseases has distributed roughly 23,000 at-home STD kits since 2004, said Charlotte Gaydos, a principal investigator with the center. The FDA generally allows such use if it's part of research overseen by medical professionals. The center's tests are now used by the Alaska health department, as well as Native American tribes in Arizona and Oklahoma.

Gaydos has published dozens of studies establishing that home collection kits for diseases such as chlamydia and gonorrhea are accurate and easy to use.

"There's a huge amount of data showing that home testing works," said Gaydos.

But Gaydos noted that her studies have been limited to small sample sizes. She said she doesn't have the millions of dollars in funding it would take to run the sort of comprehensive trial the FDA typically requires for approval.

Jenny Mahn, director of clinical and sexual health at the National Coalition of STD Directors, said many public health labs are reluctant to handle home kits. "The public health labs won't touch it without FDA's blessing," Mahn said.

Public health clinics often provide STD testing at little to no cost, while health insurance typically covers in-person testing at a private practice. But most consumers pay out-of-pocket for direct-to-consumer kits. Commercial pricing puts them out of reach for many people, particularly teens and young adults, who account for nearly half of STDs.

Adalja, at Johns Hopkins, said the FDA has a history of moving slowly on home testing. The agency spent seven years evaluating the first home HIV test it approved, which hit the market in 2012.

"Home testing is the way of the future," said Laura Lindberg, a professor of public health at Rutgers University. "The pandemic opened the door to testing and treatment at home without traveling to a healthcare provider, and we aren't going to be able to put the genie back in the bottle."

Liz Szabo: lszabo@kff.org, @LizSzabo

How Banks and Private Equity Cash in When Patients Can't Pay Their Medical Bills

KFF Health News, November 17, 2022

As Americans are overwhelmed with medical bills, patient financing is now a multibillion-dollar business.

This article was published on Thursday, November 17, 2022 in Kaiser Health News.

By Noam N. Levey and Aneri Pattani 

Patients at North Carolina-based Atrium Health get what looks like an enticing pitch when they go to the nonprofit hospital system's website: a payment plan from lender AccessOne. The plans offer "easy ways to make monthly payments" on medical bills, the website says. You don't need good credit to get a loan. Everyone is approved. Nothing is reported to credit agencies.

In Minnesota, Allina Health encourages its patients to sign up for an account with MedCredit Financial Services to "consolidate your health expenses." In Southern California, Chino Valley Medical Center, part of the Prime Healthcare chain, touts "promotional financing options with the CareCredit credit card to help you get the care you need, when you need it."

As Americans are overwhelmed with medical bills, patient financing is now a multibillion-dollar business, with private equity and big banks lined up to cash in when patients and their families can't pay for care. By one estimate from research firm IBISWorld, profit margins top 29% in the patient financing industry, seven times what is considered a solid hospital margin.

Hospitals and other providers, which historically put their patients in interest-free payment plans, have welcomed the financing, signing contracts with lenders and enrolling patients in financing plans with rosy promises about convenient bills and easy payments.

For patients, the payment plans often mean something more ominous: yet more debt.

Millions of people are paying interest on these plans, on top of what they owe for medical or dental care, an investigation by KHN and NPR shows. Even with lower rates than a traditional credit card, the interest can add hundreds, even thousands of dollars to medical bills and ratchet up financial strains when patients are most vulnerable.

Robin Milcowitz, a Florida woman who found herself enrolled in an AccessOne loan at a Tampa hospital in 2018 after having a hysterectomy for ovarian cancer, said she was appalled by the financing arrangements.

"Hospitals have found yet another way to monetize our illnesses and our need for medical help," said Milcowitz, a graphic designer. She was charged 11.5% interest — almost three times what she paid for a separate bank loan. "It's immoral," she said.

MedCredit's loans to Allina patients come with 8% interest. Patients enrolled in a CareCredit card from Synchrony, the nation's leading medical lender, face a nearly 27% interest rate if they fail to pay off their loan during a zero-interest promotional period. The high rate hits about 1 in 5 borrowers, according to the company.

For many patients, financing arrangements can be confusing, resulting in missed payments or higher interest rates than they anticipated. The loans can also deepen inequalities. Lower-income patients without the means to make large monthly payments can face higher interest rates, while wealthier patients able to shoulder bigger monthly bills can secure lower rates.

More fundamentally, pushing people into loans that threaten their financial health runs against medical providers' first obligation to not harm their patients, said patient advocate Mark Rukavina, program director at the nonprofit Community Catalyst.

"We're dealing with sick people, scared people, vulnerable people," Rukavina said. "Dangling a financial services product in front of them when they're concerned about their care doesn't seem appropriate."

Debt Upon Debt

Nationwide, about 50 million people — or 1 in 5 adults — are on a financing plan to pay off a medical or dental bill, according to a KFF poll conducted for this project. About a quarter of those borrowers are paying interest, the poll found.

Increasingly, those interest payments are going to financing companies that promise hospitals they will collect more of their medical bills in exchange for a cut.

Hospital officials defend these arrangements, citing the need to offset the cost of offering financing options to patients. Alan Wolf, a spokesperson for the University of North Carolina's hospital system, said that the system, which reported $5.8 billion in patient revenue last year, had a "responsibility to remain financially stable to assure we can provide care to all regardless of ability to pay." UNC Health, as it is known, has contracted since 2019 with AccessOne, a private equity-backed company that finances loans for scores of hospital systems across the country.

This partnership has had a substantial impact on patient debt, according to a KHN analysis of billing and contracting records obtained through public records requests.

UNC Health, which as a public university system touts its commitment "to serve the people of North Carolina," had long offered payment plans without interest. And when AccessOne took over the loans in September 2019, most patients were in no-interest plans.

That has steadily shifted as new patients enrolled in one of AccessOne's plans, several of which have variable interest rates that now charge 13%.

In February 2020, records show, just 9% of UNC patients in an AccessOne plan were in a loan with the highest interest rate. Two years later, 46% were in such a plan. Overall, at any given time more than 100,000 UNC Health patients finance through AccessOne.

The interest can pile on debt. Someone with a $7,000 hospital bill, for example, who enrolls in a five-year financing plan at 13% interest will pay at least $2,500 more to settle that debt.

Rukavina, the patient advocate, said adding this burden on patients makes little sense when medical debt is already creating so much hardship. "It may seem like a short-term solution, but it leads to longer-term problems," he said. Health care debt has forced millions of Americans to cut back on food, give up their homes, and make other sacrifices, KHN found.

UNC Health disavowed responsibility for the additional debt, saying patients signed up for the higher-interest loans. "Any payment plans above zero-interest terms/conditions in place with AccessOne are in place at the request of the patient," Wolf said in an email. UNC Health would only provide answers to written questions.

UNC Health's patients aren't the only ones getting routed into financing plans that require substantial interest payments.

At Atrium Health, a nonprofit system with roots as Charlotte's public hospital that reported more than $7.5 billion in revenues last year, as many as half of patients enrolled in an AccessOne loan were in one of the company's highest-interest plans, according to 2021 billing records analyzed by KHN.

At AU Health, Georgia's main public university hospital system, billing records obtained by KHN show that two-thirds of patients on an AccessOne plan were paying the highest interest rate as of January.

'Empathetic Patient Financing'

AccessOne chief executive Mark Spinner, who in an interview called his firm a "compassionate, empathetic patient financing company," said the range of interest rates gives patients and medical systems valuable options. "By offering AccessOne, you're creating a much safer, more mission-aligned way for consumers to pay and help them stay out of medical debt," he said. "It's an alternative to lawsuits, legal action, and things like that."

AccessOne, which doesn't buy patient debt from hospitals, doesn't run credit checks on patients to qualify them for loans. Nor will the company report patients who default to credit bureaus. The company also frequently markets the availability of zero-interest loans.

Some patients do qualify for no-interest plans, particularly if they have very low incomes. But the loans aren't always as generous as company and hospital officials say.

AccessOne borrowers who miss payments can have their accounts returned to the hospital, which can sue them, report them to credit bureaus, or subject them to other collection actions. UNC Health refers unpaid bills to the state revenue department, which can garnish patients' tax refunds. Atrium's collections policy allows the hospital system to sue patients.

Because AccessOne borrowers can get low interest rates by making larger monthly payments, this financing system can also deepen inequalities. Someone who can pay $292 a month on a $7,000 hospital bill, for example, could qualify for a two-year, interest-free plan. But a patient who can pay only $159 a month would have to take a five-year plan with 13% interest, according to AccessOne. 

"I see wealthier families benefiting," said one former AccessOne employee, who asked not to be identified because she still works in the financing industry. "Lower-income families that have hardship are likely to end up with a higher overall balance due to the interest."

Andy Talford, who oversees patient financial services at Moffitt Cancer Center in Tampa, said the hospital contracted with AccessOne to make it easier for patients to manage their medical bills. "Someone out there is helping them keep track of it," he said.

But patients can get tripped up by the complexities of managing these plans, consumer advocates say. That's what happened to Milcowitz, the graphic designer in Florida.

Milcowitz, 51, had set up a no-interest payment plan with Moffitt to pay off $3,000 she owed for her hysterectomy in 2017. When the medical center switched her account to AccessOne, however, she began receiving late notices, even as she kept making payments.

Only later did she figure out that AccessOne had set up two accounts, one for the cancer surgery and another for medical appointments. Her payments had been applied only to the surgery account, leaving the other past-due. She then got hit with higher interest rates. "It's crazy," she said.

Growing Business Opportunities

While financing plans may mean more headaches and more debt for patients, they're proving profitable for lenders.

That's drawn the interest of private equity firms, which have bought several patient financing companies in recent years. Since 2017, AccessOne's majority owner has been private equity investor Frontier Capital.

Synchrony, which historically marketed its CareCredit cards in patient waiting rooms, is now also inking deals with medical systems to enroll patients in loans when they go online to pay bills.

"They're like pilot fish eating off the back of the shark," said Jonathan Bush, a founder of Athenahealth, a health technology company that has developed electronic medical records and billing systems.

As patient bills skyrocket, hospitals face mounting pressure to collect more, which can make financing arrangements seem appealing, industry experts say. But as health systems go into business with lenders, many are reluctant to share details. Only a handful of hospitals contacted by KHN agreed to be interviewed about their contracts and what they mean for patients.

Several public systems, including Atrium and UNC Health, disclosed information only after KHN submitted public records requests. Even then, the two systems redacted key details, including how much they pay AccessOne.

AU Health, which did not redact its contract, pays AccessOne a 6% "servicing fee" on each patient loan the company administers. But like Atrium and UNC Health, AU Health refused to provide any on-the-record interviews.

Other hospital systems were even less transparent. Mercyhealth, a nonprofit with hospitals and clinics in Illinois and Wisconsin that routes its patients to CareCredit, would not discuss its lending practices. "We do not have anyone available for this," spokesperson Therese Michels said. Allina Health and Prime Healthcare also wouldn't talk about their patient financing deals.

Bush said there's a reason so few hospitals want to discuss their financing deals: They're embarrassed. "It's like they quietly write someone's name on a piece of paper and slide it across the table," he said. "They don't want to be a part of it because they have in their institutional memory that they are supposed to look after patients' best interests."

Some Hospitals Choose Another Path

Not all hospitals expose their patients to extra costs to finance medical bills.

Lake Region Healthcare, a small nonprofit with hospitals and clinics in rural Minnesota that contracts with Missouri-based Commerce Bank, charges no interest or fees on payment plans. That's a decision that spokesperson Katie Johnson said was made "for the benefit of our patients."

Even some AccessOne clients such as the University of Kansas Health System shield patients from interest. But as providers look to boost their bottom lines, it's unclear how long these protections will last. Colette Lasack, who oversees financing for the Kansas system, noted: "There's a cost associated with that."

Meanwhile, large national lenders such as Discover Financial Services are looking at the patient financing business.

"I've had to become more of a health care marketer," said Matt Lattman, vice president for personal loans at Discover, which is pitching the loans to people with unexpected medical bills. "In a world where many people are ill prepared to cover their health care costs, the personal loan can provide an opportunity."

About This Project

"Diagnosis: Debt" is a reporting partnership between KHN and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on the "KFF Health Care Debt Survey," a poll designed and analyzed by public opinion researchers at KFF in collaboration with KHN journalists and editors. The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers' balances may be affected by major medical expenses.

Reporters from KHN and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

Noam N. Levey: nlevey@kff.org, @NoamLevey

Aneri Pattani: apattani@kff.org, @aneripattani

Pfizer's Covid Cash Powers a 'Marketing Machine' on the Hunt for New Supernovas

KFF Health News, November 8, 2022

The company is inundating doctors and pharmacists — and consumers — with advertising touting its COVID drug Paxlovid.

This article was published on Tuesday, November 8, 2022 in Kaiser Health News.

By Arthur Allen

For drugmaker Pfizer, a fortune amassed in the COVID pandemic is now paving the path to pharma nirvana: a weight loss pill worth billions.

The company has reaped nearly $100 billion from selling COVID-19 vaccines and treatments to U.S. taxpayers and foreign governments. With that windfall, it plans to get richer, sinking the cash into developing and marketing potential blockbusters for conditions like migraines, ulcerative colitis, prostate cancer, sickle cell disease, and obesity.

It just announced it will triple or even quadruple the price of its COVID vaccine once it goes on the commercial market next year. Meanwhile, the company is inundating doctors and pharmacists — and consumers — with advertising touting its COVID drug Paxlovid.

"Pfizer is a remarkable marketing machine. They have an incredible ability to make the most of molecules and get them adopted," said Timothy Calkins, a professor of marketing at Northwestern University's Kellogg School of Management.

The federal government is helping Pfizer with its marketing, urging people to get boosters targeting the omicron variants, although early data has been mixed on whether the shots work better than the earlier version. But even with a 66% drop in COVID vaccine sales in the past quarter, the company made about $4.4 billion in those three months. Pfizer has a deep stream of cash to finance its future. COVID has been very good for business.

The company appears most excited — judging from its messages to investors — about two experimental diabetes pills, "me too" drugs in the class known as GLP-1 agonists. As Pfizer competitors have already discovered, they double as weight-loss drugs. In one trial, more than half of obese patients on a high-dose Eli Lilly and Co. injectable lost a fifth of their body weight — results that have raised the drugs' cachet as a diet aid in Hollywood, Silicon Valley, and other social niches where cost is no issue and being thin is always in.

Wall Street analysts are predicting such massive demand for these drugs that Pfizer "can find a place there with marketing" if its version works, though it is at least two years from licensure, said Mohit Bansal, a Wells Fargo analyst. By 2035, the Lilly drug alone could earn $100 billion a year for its formulation, according to one Bank of America analysis.

Pfizer still sees COVID as a "multibillion-dollar franchise" long term, Chief Financial Officer David Denton told a Nov. 1 earnings call, since COVID "is going to be somewhat like a flu, sustained flu, but actually more deadly than the flu."

The company announced Oct. 20 that it would charge $110 to $130 a shot once government contracts run out next year, more than double what investors were expecting. The U.S. government paid $30.50 per shot in its latest contract with Pfizer, according to Zaid Rizvi, a researcher for the advocacy group Public Citizen.

Pfizer was a good citizen in keeping prices down during the worst of the pandemic, CEO Albert Bourla told investors. Now payers will pick up the added cost, while consumers "wouldn't see the difference" because there's generally no copay for vaccines.

Still, unless new mutations are dangerous enough to scare enough people, Wall Street analysts expect sales to lag, as the public loses interest, Republican politicians discourage booster shots, and concerns continue about rare heart damage in young people getting the shots. Pfizer said in July it had taken "a $450 million write-off of inventory related to COVID-19 products" that exceeded "approved shelf-lives." And Moderna on Nov. 3 lowered sales predictions for its COVID vaccine.

"Not many people are going to go out and get their fourth, fifth, and sixth boosters if there's no major new variant," said Geoff Meacham, an analyst at Bank of America. "If you've had the two mRNAs and a booster, you are pretty well protected. Do you need it annually?"

That lagging interest in COVID products has investors pushing Pfizer to show where it can make up revenue for three bestsellers — the breast cancer drug Ibrance, the rheumatoid arthritis drug Xeljanz, and Eliquis, a blood thinner — whose patents run out this decade.

While conducting its own research, Pfizer fattened its development portfolio in the past two years by buying companies that already had developed promising drugs. The company hopes these purchases, and its own work, will give it $25 billion in new annual revenue by 2030.

Meanwhile, the company has treated investors to $25 billion in dividends over the past three years and spent $9 billion jacking up share prices with stock buybacks.

All this is due to the huge profit bulge from its COVID products, which has enabled Pfizer to outpace Johnson & Johnson as the biggest industry revenue earner so far in 2022. From late 2020 through September, Pfizer earned about $80 billion from sales of 3.8 billion COVID vaccines and Paxlovid, and the company expects an additional $15 billion in the remainder of this year. Until recently, investors had been predicting that number would fall to around $11 billion annually by 2026, but Pfizer's recent commercial pricing announcement increased that figure, potentially, by up to $3 billion, according to a Wells Fargo analysis.

Still, "from the investor's point of view, the focus is not on COVID as much at this point. The focus is, what do they do with this money and expertise?" Bansal said, and how to "use it to grow their core business."

To grow that core, Pfizer since last year has acquired several midsize companies with promising or licensed drugs. It spent $11.6 billion for Biohaven, whose migraine drug Nurtec ODT brought in $324 million in the first half of 2022. Pfizer predicts up to $6 billion in annual revenue from the drug.

Its hopes are also high for Oxbryta, a sickle cell anemia drug produced by Global Blood Therapeutics, which Pfizer bought for $5.4 billion. Priced at $125,000 a year, the drug, which raises oxygen levels in patients, earned $100 million in the first two quarters of the year but might be worth $2.5 billion annually with a powerful marketing engine behind it, according to Wall Street analysts.

Pfizer is strengthening its franchise in respiratory vaccines and treatments, Dr. Mikael Dolsten, the chief scientific officer, said on the Nov. 1 call. It's racing against GSK and Moderna to be first to license a vaccine that protects older adults as well as pregnant women and their newborns against RSV, a respiratory virus that has overwhelmed children's hospitals this fall. The company also has released an updated version of its bacterial pneumonia vaccine, which brought in $5.3 billion in 2021.

The other mRNA vaccine companies are also rolling in cash but have narrower strategies. Moderna is testing 32 infectious-disease vaccines and developing a long-shot individualized cancer vaccine. Pfizer's German partner, BioNTech, which did most of the original development of their COVID vaccine, has a similar focus.

Pfizer and Moderna both began advanced clinical trials this year for their first non-COVID mRNA vaccines — against influenza. If flu season is widespread enough, the tests could show whether the vaccines are any better than standard flu shots, and whether one works better than the other.

Investors expect a lot from Pfizer, with its 80,000 employees and $81 billion in 2021 revenue. And they are likely to get it.

Nurtec, the migraine drug it acquired with Biohaven, will be a good test case. Pfizer and giants like it each have at least 2,000 sales reps marketing to primary care physicians in the United States, Calkins said. An operation like that probably costs $400 million a year, he said, far more than a company like Biohaven could afford.

Pfizer will use its marketing prowess, particularly among primary care physicians, to "build the world's leading migraine franchise," CEO Bourla said on the Nov. 1 call. Pfizer has the resources to flood the media with direct-to-consumer ads and negotiate with insurers and pharmacy benefit managers to make sure patients can get this and other drugs, said Bansal, the Wells Fargo analyst.

Sickle cell patients are harder to reach, but Pfizer "has relationships in the hospital setting, the heft of their investment in commercialization" to increase sales of Oxbryta, said Evan Seigerman, a research analyst at BMO Capital Markets.

Pfizer also plans to make a blockbuster of etrasimod, an experimental drug against ulcerative colitis that it acquired with its $6.7 billion purchase of Arena Pharmaceuticals.

Pfizer's GLP-1 formulation is key to its goals. The GLP-1 drugs are similar to a gut peptide, or small protein, that stimulates biochemical pathways that help release insulin, diminish appetite, and lower certain immune responses. While the drugs were invented and licensed to fight Type 2 diabetes, the FDA has approved one of them for obesity treatment as well, and companies are testing GLP-1 formulations against fatty liver disease, sleep apnea, kidney disease, congestive heart failure, and even Alzheimer's and Parkinson's.

Pfizer executives said they hope to decide by 2024 which of two candidate drugs to take into large clinical trials. The company sees itself finding a niche with a pill that can be taken with or without food, according to Dolsten. Most of the current products are injectables, which turn off many people.

Assuming one of the drugs gets licensed, marketing will do the rest.

Arthur Allen: ArthurA@kff.org, @ArthurAllen202

Haven't Seen Your Doctor in a Few Years? You May Need to Find a New One

KFF Health News, November 3, 2022

Since many primary care doctors have a waiting list, removing those they rarely see opens up patient slots and improves access for others.

This article was published on Thursday, November 3, in Kaiser Health News.

By Michelle Andrews, Kaiser Health News

When Claudia Siegel got a stomach bug earlier this year, she reached out to her primary care doctor to prescribe something to relieve her diarrhea. The Philadelphia resident was surprised when she received an online message informing her that because she hadn't visited her doctor in more than three years, she was no longer a patient.

And since he wasn't accepting new patients, she would have to find a new primary care physician.

"I think it's unconscionable," Siegel said, noting that many patients may have stayed away from the doctor's office the past few years because of the COVID pandemic. "There was no notification to patients that they're on the verge of losing their doctor."

Though it is dismaying to learn you've been dropped from a physician's practice because a few years have passed since your last visit, the approach isn't uncommon. Exactly how widespread the experience is, no one can say. But specialists also do this.

The argument for dropping the occasional patient makes some sense. Since many primary care doctors have a waiting list of prospective patients, removing those they rarely see opens up patient slots and improves access for others.

"Most primary care practices are incredibly busy, in part due to pent-up demand due to COVID," said Dr. Russell Phillips, director of Harvard Medical School's Center for Primary Care and a general internist at Beth Israel Deaconess Medical Center.

"Even though continuity of care is important, if the patient hasn't been in and we don't know if they're going to come in, it's hard to leave space for them," he said.

Patients often move away or find a different doctor when their insurance changes without notifying the practice, experts say. In addition, physicians may seek to classify people they haven't seen in a long time as new patients since their medical, family, and social history may require a time-consuming update after a lengthy break. Patient status is one element that determines how much doctors get paid.

Still, the transition can be trying for patients.

"I can completely understand the patient's perspective," said Courtney Jones, a senior director of case management at the Patient Advocate Foundation. "You believe you have a medical team that you've trusted previously to help you make decisions, and now you have to find another trusted team."

Siegel said she rarely went to the doctor, adhering to her physician father's counsel that people shouldn't go unless they're sick. Although she hadn't been to her doctor's office in person recently, Siegel said she had corresponded with the practice staff, including keeping them up to date on her COVID vaccination status.

After receiving the online dismissal through the patient portal for the Jefferson Health system, Siegel called the family medicine practice's patient line directly. They told her three years was the protocol and they had to follow it.

"I asked, ‘What about the patient?'" Siegel said. "They didn't have an answer for that."

It was a month before Siegel, who has coverage under Medicare's traditional fee-for-service program, could see a doctor who was accepting new patients. By that time, her stomach virus symptoms had resolved.

Jefferson Health doesn't have a policy that patients lose their doctor if they're not seen regularly, according to a statement from spokesperson Damien Woods.

However, he said, "Patients not seen by their provider for three years or more are classified in the electronic medical records as new patients (rather than established patients), per Center for Medicare and Medicaid Services (CMS) guidance. Whenever possible, Jefferson works with these patients to keep them with their primary care provider and offers options for new providers in certain circumstances."

American Medical Association ethics guidelines recommend that physicians notify patients in advance when they're withdrawing from a case so they have time to find another physician.

But the organization, which represents physicians, has no guidance about maintaining a panel of patients, said AMA spokesperson Robert Mills.

The American Academy of Family Physicians, which represents and advocates for family physicians, declined to comment for this story.

A primary care physician's panel of patients typically includes those who have been seen in the past two years, said Phillips, of Harvard. Doctors may have 2,000 or more patients, studies show. Maintaining a workable number of patients is crucial, both for effective patient care and for the doctors.

"Practices realize that a major contributor to physician burnout is having more patients than you can deal with," Phillips said.

Demand for physician services is expected to continue to outstrip supply in the coming decades, as people age and need more care at the same time the number of retiring physicians is on the upswing. According to projections from the Association of American Medical Colleges, by 2034 there will be a shortage of up to 48,000 primary care physicians.

Maintaining a regular relationship with a primary care provider can help people manage chronic conditions and promptly identify new issues. Regularly checking in also helps ensure people receive important routine services such as immunizations and blood pressure checks, said Dr. David Blumenthal, a former primary care physician who is president of the Commonwealth Fund, a research and policy organization.

healthcare organizations increasingly focus on requiring doctors to meet certain quality metrics, such as managing patients' high blood pressure or providing comprehensive diabetes care. In this environment, "it could be problematic for physicians to be accountable for the health of patients who do not see them," Blumenthal said.

Money also figures into it. Steady visits are good for a practice's bottom line. Practices may also decide to avoid new Medicare patients or those with certain types of insurance because the payments are too low, said Owen Dahl, a consultant with Medical Group Management Association, an organization for healthcare managers.

In general, doctors aren't obligated to continue seeing a patient. A doctor might dismiss patients because they aren't following clinical recommendations or routinely cancel or miss appointments. Belligerent or abusive behavior is also grounds for dropping a patient.

In certain instances, physicians may be legally liable for "patient abandonment," a form of medical malpractice. State rules vary, but there are common elements. Those rules generally apply when a doctor harms a patient by dropping them abruptly at a critical stage of treatment. It would generally not apply if a patient has not seen the physician for several years.

Even though quietly dropping a seldom-seen patient might not have an immediate medical consequence, patients ought to be informed, experts said.

"It's really good customer service to explain the situation," said Rick Gundling, senior vice president at the Healthcare Financial Management Association, an organization for finance professionals. As for Siegel, he said, "This woman should not be left hanging. If you're the patient, the physician should be proactive."

Montana Backs Away From Innovative Hospital Payment Model. Other States Are Watching.

KFF Health News, October 27, 2022

The plan established maximum amounts the health plan would pay for all inpatient and outpatient services.

This article was published on Thursday, October 27, 2022 in Kaiser Health News.

By Katheryn Houghton

Montana is signaling it might step away from an innovative way of setting the prices its public employee health plan pays hospitals for services, an approach that has saved the state millions of dollars and become a model for health plans nationwide.

The plan gained national renown among employers and healthcare price reform advocates when, in 2016, it established maximum amounts the health plan would pay for all inpatient and outpatient services. Those amounts were pegged to Medicare reimbursement rates. The adoption of that model, known as reference-based pricing, has saved the state tens of millions of dollars. Taxpayers help fund the medical plan, which insures public employees and their families, for a total of about 28,800 people.

Montana didn't invent reference-based pricing, but the state made waves by having a healthcare plan of that size set prices for all services, not just certain procedures, such as knee replacements.

Now, Montana is positioning itself to tweak its model, just as more states and employers, seeking to cut costs, consider adopting it. That has health economists and those working to lower hospital prices elsewhere wondering whether the state is once again moving ahead of the curve — or setting itself up for a setback.

"We look to Montana for the success story," said Gloria Sachdev, president of the Employers' Forum of Indiana, a nonprofit that tries to improve healthcare pricing. "Now that it's doing something new, I think a lot of eyes will be on Montana."

In September, the state awarded Blue Cross and Blue Shield of Montana a contract to take over administration of the public employee health plan starting next year. The contract calls for using Medicare's rates as a baseline to set overall targets for the amounts the plan will reimburse hospitals. It gives Blue Cross the ability to meet those goals with reference-based pricing — but also by negotiating deals with individual healthcare providers using a mix of reimbursement models.

The state said in a news release announcing the contract that its new reimbursement targets will save $28 million over the next three years. But the details in the contract on how that will be achieved are vague.

Blue Cross, one of Montana's largest insurers, won't elaborate on its plans while Allegiance Benefit Plan Management, the public employee health plan's current administrator, challenges the state's contracting decision. Allegiance had held the contract since the state adopted the reference-based pricing model.

John Doran, a Blue Cross spokesperson, said state officials instructed company officials to direct all questions to the Montana Department of Administration.

Asked how upcoming changes will affect the health plan's existing model, Montana officials pointed to the state's contract with Blue Cross. According to that document, Blue Cross can create "custom alternative payment arrangements with providers" with state approval.

In the state's news release, officials said the goal is to "modernize" its six-year-old reimbursement strategy. Department of Administration Director Misty Ann Giles said in the release that the state picked a vendor to help it "become more flexible to reach its goals efficiently."

The U.S. has struggled to respond to the rising cost of healthcare. The Centers for Medicare & Medicaid Services estimated that in 2020, health spending grew nearly 10%, reaching $4.1 trillion, or $12,530 per person. More than 160 million people in the U.S. have employer-sponsored health insurance. Historically, the prices that employee health plans pay have been privately negotiated between healthcare providers and third-party administrators like Blue Cross, with negotiations often starting at the prices that hospitals propose.

That process has exacerbated the lack of transparency in the cost of care and has contributed to wide variation in the prices that private insurance plans pay. In a study of medical claims data from 2018 to 2020, think tank Rand Corp. found that private insurers in some states, such as Washington, paid hospital prices that were less than 175% of what Medicare would have paid for the same services at the same facilities, while in other states, they paid prices that were 310% of the Medicare rate or higher.

In 2016, Montana took a bold leap. Instead of negotiating down from hospitals' listed prices, the state set a range for what hospitals can charge for services, establishing maximum costs as a set percentage above Medicare rates. If hospitals refused to negotiate through that model, they risked losing access to the patients insured through the state's largest employer.

Marilyn Bartlett, who led the change to reference-based pricing when she worked for Montana, said that at that time, the plan had been losing money for years and risked its reserves dropping into the negatives. By 2017, Bartlett said, the plan's reserves had accumulated more money than the state's general fund, and the premiums state employees paid stayed level.

"We had flattened the price curve, and in fact we had a negative," said Bartlett, now a senior policy fellow with the National Academy for State Health Policy advising other states on how to lower healthcare costs. "That was unheard of."

Dr. Stephen Tahta, president of Allegiance Benefit Plan Management, said that while Allegiance was administrator of the health plan, it saved more than $48 million.

Hospital representatives have said a growing number of employer-based plans are considering increasing their reliance on reference-based pricing.

In recent years, California's retirement plan that offers insurance benefits to public employees has worked to expand reference pricing for certain medications.

And the state of Colorado joined a purchasing alliance to negotiate with hospitals over pricing for its public employee medical plan this year, seeking to use Medicare rates as a baseline. Bob Smith, executive director of that alliance, the Colorado Business Group on Health, said that while major health systems have bucked that process so far, patients also have a healthcare price comparison tool to pick providers that charge reasonable prices and offer high-quality care.

The American Hospital Association opposes reference-based pricing, saying it can increase the amount patients must pay for care. One way that could happen is through balance billing, when a provider charges a patient for the difference between the cost set by the plan and the amount the provider charges.

Those advocating for pricing reform have said that hospitals' initial prices before negotiations can be arbitrary and that Medicare's rates are a fair starting point. Medicare reimbursements can be adjusted if a provider faces steep expenses such as operating in a rural place or hiring staffers to offer specialty care.

In the contract awarded in September, the state set a ceiling of no more than 200% of Medicare rates for the amounts the Blue Cross plan would pay providers overall in its first year. The contract says Blue Cross will target reimbursing providers an overall rate of 180% of Medicare's rates by year three of the agreement.

The state left it to Blue Cross to find a way to reach those goals.

After KHN shared Blue Cross' reimbursement details in the state contract with Chris Whaley, a health economist and policy researcher for Rand, he said it's hard to know how the new approach will work out. Blue Cross' plan doesn't say how often the company will negotiate deals with providers outside of reference-based pricing. Whaley said that could lead Montana to lose focus on its reimbursement strategy.

"It seems like the model is already working really well," Whaley said. "Is the reference-based pricing model something that's going to be developed and improved upon? Or is it something that is maybe going to be stripped down and not have the same impact as before?"

Allegiance is alleging that the contract was awarded through an illegal bidding process and that it could end up raising healthcare costs for state employees and taxpayers.

Belinda Adams, a Department of Administration spokesperson, said state officials are reviewing the issues raised by Allegiance but believe the hiring process was fair and legal.

The state has 30 days from when Allegiance submitted its protest to issue a decision on the company's claims if the two sides don't reach an agreement that settles the dispute. In the meantime, Adams said, Blue Cross is preparing to take over administration of the public employee health plan in January.

Katheryn Houghton: khoughton@kff.org, @K_Hought

Campaigning ramps up as South Dakota voters decide on Medicaid expansion

KFF Health News, October 18, 2022

South Dakota is one of 12 states that have not expanded eligibility for their Medicaid programs, and the only state where voters will decide in November whether to do so.

By Arielle Zionts

CUSTER, S.D. — A silver minivan decorated with a large sticker reading “Love Your Neighbor Tour" recently circumnavigated South Dakota.

Catholic nuns, Protestant pastors, a synagogue president, and a Muslim nonprofit professional were among the interfaith leaders who packed into the rented six-seater or caravanned behind.

The road trip's mission: to register voters and urge them to support expansion of the state's Medicaid program to cover thousands more low-income adults.

“If we are living our faith, then we have a serious obligation to love our neighbor and to show that in very practical ways," Sister Teresa Ann Wolf, a Benedictine nun, said at one of the convoy's stops. “And one very simple, concrete thing we can do to help our neighbor — like 40,000 neighbors in South Dakota who need health care — is to vote yes for Amendment D."

Many South Dakotans are people of faith and might find this argument from religious leaders convincing, said Brenda Handel-Johnson, a Lutheran deacon.

South Dakota is one of 12 states that have not expanded eligibility for their Medicaid programs, and the only state where voters will decide in November whether to do so.

Medicaid, the nation's leading public health insurance program for low-income and disabled Americans, covers more than 82 million people and is jointly financed and operated by the federal and state governments. The 2010 Affordable Care Act allows states to offer coverage to more people, with the federal government paying 90% of the costs.

More than a dozen interfaith leaders participated in the recent Love Your Neighbor Tour. Group members traveled more than 1,400 miles across South Dakota, an expansive but sparsely populated state with fewer than 900,000 residents. The group visited 25 towns in five days, meeting with people in restaurants, grocery and convenience stores, a library, and a church.

One stop was at a senior center in Custer, a small town in the Black Hills that teems with tourists during the summer but is home to only about 2,000 year-round residents.

Tour members and a small group of locals sat in a circle as they exchanged stories about loved ones and acquaintances who lack insurance. Some stressed how Medicaid expansion would help rural residents and health care services. One attendee, the chair of the local Republican Party, said it's inappropriate to insert a policy issue like Medicaid expansion into the state constitution.

South Dakotans will decide on Nov. 8, when they vote on the proposed constitutional amendment. The proposal would offer Medicaid coverage to an estimated 42,500 low-income South Dakotans ages 18 to 64.

About 16,000 of those people don't currently qualify for any government assistance with health coverage even though their income falls below the federal poverty level.

Some are parents who earn too little to qualify for federal subsidies to buy private insurance on the Affordable Care Act's marketplace but earn too much to qualify for South Dakota's Medicaid program. Others are adults without children or disabilities, who aren't allowed to enroll in Medicaid no matter how low their income.

Nationally, people of color are disproportionately represented within this “Medicaid coverage gap," according to a KFF analysis of census data. About half the people in the gap are working; others include students and caregivers.

Jennifer Green, a Rapid City mother of three, lives below the federal poverty level and has no health insurance. The 46-year-old said she has no public coverage options and can't afford the premiums to buy her husband's workplace insurance.

Green said she has two hernias, which prevent her from lifting more than 10 pounds, and a back injury from a car crash that makes it painful to sit long.

“With my situation, I'm not lazy. I know a lot of people think I might be, but I'm not. It's because of the amount of pain I'm in. … In fact, my leg is going numb now," Green said while standing outside her rental house. “I would work if I could."

Green would qualify for Medicaid under the expansion proposal. She said she would use the insurance for hernia and back surgery.

Americans for Prosperity, a conservative, libertarian organization that has campaigned against expansion proposals nationwide, was the lead fundraiser in an earlier effort to prevent the change in South Dakota.

The group supported an effort to create a 60% approval threshold for constitutional ballot questions that cost $10 million or more to implement, which would have included Medicaid expansion. In June, voters overwhelmingly defeated that proposal, so the expansion amendment will need only a simple majority to pass in November.

Keith Moore, director of Americans for Prosperity in South Dakota, said he opposes expanding Medicaid because the taxpayer-funded program has been victim to billions of dollars in fraud and error. Moore also pointed to states that ended up spending more than expected on expanded coverage.

The Medicaid expansion campaign is backed by the progressive Fairness Project, which has supported expansion ballot campaigns across the country. But the largest funders are South Dakota-based health care organizations, AARP, and the National Farmers Union. Other endorsers include Indigenous groups and the state's chamber of commerce, teachers union, and municipal league.

Supporters cite studies showing that Medicaid expansion increases the number of people covered by insurance, improves health outcomes, and saves money. Expansion could have a profound impact on Indigenous communities in the state. Native Americans in South Dakota are more than three times as likely to be uninsured as the overall state population.

Expansion supporters have been campaigning through the Love Your Neighbor Tour, TV ads, documentary screenings, and other methods. The opposition has been less visible but includes some Republican lawmakers, Americans for Prosperity, and the Farm Bureau, which offers health plans.

John Wiik, a Republican state senator, said opponents had expected voters to pass the June proposal to raise the approval threshold for constitutional amendments. After that ballot measure failed, he said, some opponents doubted it was worth spending money to try to defeat the Medicaid expansion proposal.

“I mean, let's face it. We are David versus three Goliaths wrapped in media armor," he said in a phone interview.

Wiik said everyone in the opposition assumed someone else would lead the campaign against expansion. He recently took charge by registering a committee to raise money for the cause. The committee formed after early voting began, and nearly two years after the pro-expansion campaign began raising money.

Opponents say it's unfair that, under expansion, some people who are happy with their federally subsidized private insurance would be forced onto Medicaid instead.

“You're going to cut into their quality of care really bad in a rural state like South Dakota, because we don't have enough providers that still accept Medicaid," Wiik said.

The pro-expansion campaign decided to propose a constitutional amendment, rather than a statute, and inserted deadlines into the text to ensure it is implemented. They wanted to make it harder for South Dakota legislators to block the ballot measure, as has happened on previous issues. Gov. Kristi Noem, a Republican running for reelection, opposes Medicaid expansion but said the state will implement the will of the voters.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Arielle Zionts: azionts@kff.org, @Ajzionts

Centene Gave Thousands to Georgia Leaders' Campaigns While Facing Medicaid Overbilling Questions

KFF Health News, October 18, 2022

St. Louis-based Centene Corp. says it's working to settle Medicaid billing issues with nine states.

By Maya T. Prabhu, Atlanta Journal-Constitution and Andy Miller, Kaiser Health News.

A health insurance giant that has paid out more than $485 million in legal settlements with states over pharmacy billing allegations has also been a major donor to Georgia's Republican Gov. Brian Kemp and Attorney General Chris Carr, according to campaign finance records.

St. Louis-based Centene Corp. said Monday in a statement that it's working to settle Medicaid billing issues with Georgia and eight other states, beyond the 13 states it has already agreed to pay. In the public agreements so far, state attorney general offices have been involved in setting the agreements' terms and have announced the settlement amounts.

According to Carr's campaign filings, Centene-related donations included spending around an event for him in late August. Carr's campaign did not respond to requests for comment on the donations. Kemp's campaign declined to comment.

Centene is the parent company of Peach State Health Plan, which delivers managed-care services to about 1 million low-income Georgians enrolled in Medicaid and PeachCare for Kids. It is one of three companies that typically receive more than $4 billion, combined, from the state annually to run the public health insurance programs.

Centene has settled with 13 states over allegations the conglomerate overbilled state Medicaid programs for prescription drug services. It has paid a total of at least $489 million to 10 states, with the other three not yet publicly announced, KHN has reported.

A spokesperson for Carr's office said Friday that it was waiting for direction from the state Department of Community Health, or DCH, Georgia's Medicaid agency, before the state pursues a settlement with Centene. "The state is aware of other settlements in other states involving Centene, and the Law Department understands that DCH is conducting a review of its relevant information," Kara Richardson said. "Once DCH comes to a decision, the Law Department stands ready to provide legal representation in any potential settlement negotiation or litigation."

A spokesperson for the Community Health Department, David Graves, told The Atlanta Journal-Constitution on Monday that the agency "can confirm that we will be thoughtful and intentional with our approach in a way that ensures the taxpayers of Georgia are best protected." The governor's office did not respond directly to questions about possible settlement negotiations.

Centene is the national leader in Medicaid managed care, with more than 15 million members. The company earns about two-thirds of its revenue from Medicaid, which is jointly funded by state and federal taxpayers.

In many states, insurance companies such as Centene also administer Medicaid enrollees' prescription medications through what is called a pharmacy benefit manager. These benefit managers act as middlemen between drugmakers and health insurers and as intermediaries between health plans and pharmacies. In some cases, Centene acted as both the Medicaid managed-care provider and the pharmacy benefit manager for those plans.

The company, in a statement on Monday, said that it donates to candidates of both parties and is generally supportive of incumbents: "As a member of the healthcare community, we work with elected representatives to help improve quality of care and access to services for the communities we serve."

Kemp's reelection campaign has received more than $100,000 in contributions from Centene, its subsidiaries, and its employees since 2018, according to state campaign records, with heavy giving after the first publicly announced settlements, with Ohio and Mississippi in 2021.

Most of the more than $70,000 in Centene-related giving to Carr's campaign this year came from company executives, including $10,000 from CEO Sarah London. Carr's campaign also got $6,000 from Centene general counsel Chris Koster, a former Missouri attorney general who has signed pharmacy billing settlements on behalf of the company.

Much of the Centene-related donations to Carr's campaign occurred in late August, according to the campaign records. They include $3,097 for a venue rental Aug. 26 and catering costs of $3,000 on Aug. 24. The latter was paid by Kelly Layton, wife of Centene President Brent Layton, a former staffer at the Georgia insurance department. Five out-of-state Centene employees donated a total of $13,000 during that three-day period.

In previously announced settlements, Centene has not admitted any wrongdoing. Centene set aside $1.25 billion in 2021 to resolve the pharmacy benefit manager settlements in "affected states," according to a July filing with the U.S. Securities and Exchange Commission that did not specify how many states were involved.

In January, Wade Rakes, president and CEO of Centene subsidiary Peach State Health Plan, alerted Community Health officials that the company, after an analysis of its pharmacy cost reporting, "may have a remittance obligation" to the state Medicaid program, according to an email obtained by KHN through a public records request.

William Perry, founder of Georgia Ethics Watchdogs, pointed out that nothing in state law bars Kemp or Carr from accepting donations from companies like Centene that do business with the state. "They'll sit there and say they've done nothing unethical under the law, but if you come from an ethically moral position, it's horrible," he said. "It's bad optics, and it just really makes me sick."

The campaign of Carr's Democratic opponent in the November election, Jen Jordan, criticized the attorney general for accepting the Centene contributions to his campaign. A Centene subsidiary donated $1,500 to Jordan in 2019, when she was running for reelection to the Georgia Senate, but the conglomerate doesn't appear to have given to her campaign this cycle.

"This is yet another example of how Chris Carr prioritizes special interests over the people of Georgia, and the culture of corruption that characterizes the current office of the attorney general," said Caroline Korba, a spokesperson for Jordan. "Our attorney general should not be bought and sold."

A Centene subsidiary gave a total of $6,600 to Stacey Abrams, the Democrat running against Kemp, in three separate donations since 2015, the last coming in October 2018, during Abrams' previous campaign for governor.

Maya T. Prabhu is a state government reporter for The Atlanta Journal-Constitution.

Andy Miller: amiller@kff.org, @gahealthnews

Embedded Bias: How Medical Records Sow Discrimination

KFF Health News, September 26, 2022

Researchers are increasingly finding that doctors can transmit prejudice under the guise of objective descriptions.

This story was published on Monday, September 26, 2022 in Kaiser Health News.

By Darius Tahir, Kaiser Health News.

David Confer, a bicyclist and an audio technician, told his doctor he "used to be Ph.D. level" during a 2019 appointment in Washington, D.C. Confer, then 50, was speaking figuratively: He was experiencing brain fog — a symptom of his liver problems. But did his doctor take him seriously? Now, after his death, Confer's partner, Cate Cohen, doesn't think so.

Confer, who was Black, had been diagnosed with non-Hodgkin lymphoma two years before. His prognosis was positive. But during chemotherapy, his symptoms — brain fog, vomiting, back pain — suggested trouble with his liver, and he was later diagnosed with cirrhosis. He died in 2020, unable to secure a transplant. Throughout, Cohen, now 45, felt her partner's clinicians didn't listen closely to him and had written him off.

That feeling crystallized once she read Confer's records. The doctor described Confer's fuzziness and then quoted his Ph.D. analogy. To Cohen, the language was dismissive, as if the doctor didn't take Confer at his word. It reflected, she thought, a belief that he was likely to be noncompliant with his care — that he was a bad candidate for a liver transplant and would waste the donated organ.

For its part, MedStar Georgetown, where Confer received care, declined to comment on specific cases. But spokesperson Lisa Clough said the medical center considers a variety of factors for transplantation, including "compliance with medical therapy, health of both individuals, blood type, comorbidities, ability to care for themselves and be stable, and post-transplant social support system." Not all potential recipients and donors meet those criteria, Clough said.

Doctors often send signals of their appraisals of patients' personas. Researchers are increasingly finding that doctors can transmit prejudice under the guise of objective descriptions. Clinicians who later read those purportedly objective descriptions can be misled and deliver substandard care.

Discrimination in healthcare is "the secret, or silent, poison that taints interactions between providers and patients before, during, after the medical encounter," said Dayna Bowen Matthew, dean of George Washington University's law school and an expert in civil rights law and disparities in healthcare.

Bias can be seen in the way doctors speak during rounds. Some patients, Matthew said, are described simply by their conditions. Others are characterized by terms that communicate more about their social status or character than their health and what's needed to address their symptoms. For example, a patient could be described as an "80-year-old nice Black gentleman." Doctors mention that patients look well-dressed or that someone is a laborer or homeless.

The stereotypes that can find their way into patients' records sometimes help determine the level of care patients receive. Are they spoken to as equals? Will they get the best, or merely the cheapest, treatment? Bias is "pervasive" and "causally related to inferior health outcomes, period," Matthew said.

Narrow or prejudiced thinking is simple to write down and easy to copy and paste over and over. Descriptions such as "difficult" and "disruptive" can become hard to escape. Once so labeled, patients can experience "downstream effects," said Dr. Hardeep Singh, an expert in misdiagnosis who works at the Michael E. DeBakey Veterans Affairs Medical Center in Houston. He estimates misdiagnosis affects 12 million patients a year.

Conveying bias can be as simple as a pair of quotation marks. One team of researchers found that Black patients, in particular, were quoted in their records more frequently than other patients when physicians were characterizing their symptoms or health issues. The quotation mark patterns detected by researchers could be a sign of disrespect, used to communicate irony or sarcasm to future clinical readers. Among the types of phrases the researchers spotlighted were colloquial language or statements made in Black or ethnic slang.

"Black patients may be subject to systematic bias in physicians' perceptions of their credibility," the authors of the paper wrote.

That's just one study in an incoming tide focused on the variations in the language that clinicians use to describe patients of different races and genders. In many ways, the research is just catching up to what patients and doctors knew already, that discrimination can be conveyed and furthered by partial accounts.

Confer's MedStar records, Cohen thought, were pockmarked with partial accounts — notes that included only a fraction of the full picture of his life and circumstances.

Cohen pointed to a write-up of a psychosocial evaluation, used to assess a patient's readiness for a transplant. The evaluation stated that Confer drank a 12-pack of beer and perhaps as much as a pint of whiskey daily. But Confer had quit drinking after starting chemotherapy and had been only a social drinker before, Cohen said. It was "wildly inaccurate," Cohen said.

"No matter what he did, that initial inaccurate description of the volume he consumed seemed to follow through his records," she said.

Physicians frequently see a harsh tone in referrals from other programs, said Dr. John Fung, a transplant doctor at the University of Chicago who advised Cohen but didn't review Confer's records. "They kind of blame the patient for things that happen, not really giving credit for circumstances," he said. But, he continued, those circumstances are important — looking beyond them, without bias, and at the patient himself or herself can result in successful transplants.

The History of One's Medical History

That doctors pass private judgments on their patients has been a source of nervous humor for years. In an episode of the sitcom "Seinfeld," Elaine Benes discovers that a doctor had condescendingly written that she was "difficult" in her file. When she asked about it, the doctor promised to erase it. But it was written in pen.

The jokes reflect long-standing conflicts between patients and doctors. In the 1970s, campaigners pushed doctors to open up records to patients and to use less stereotyping language about the people they treated.

Nevertheless, doctors' notes historically have had a "stilted vocabulary," said Dr. Leonor Fernandez, an internist and researcher at Beth Israel Deaconess Medical Center in Boston. Patients are often described as "denying" facts about their health, she said, as if they're not reliable narrators of their conditions.

One doubting doctor's judgment can alter the course of care for years. When she visited her doctor for kidney stones early in her life, "he was very dismissive about it," recalled Melina Oien, who now lives in Tacoma, Washington. Afterward, when she sought care in the military healthcare system, providers — whom Oien presumed had read her history — assumed that her complaints were psychosomatic and that she was seeking drugs.

"Every time I had an appointment in that system — there's that tone, that feel. It creates that sense of dread," she said. "You know the doctor has read the records and has formed an opinion of who you are, what you're looking for."

When Oien left military care in the 1990s, her paper records didn't follow her. Nor did those assumptions.

New Technology — Same Biases?

While Oien could leave her problems behind, the health system's shift to electronic medical records and the data-sharing it encourages can intensify misconceptions. It's easier than ever to maintain stale records, rife with false impressions or misreads, and to share or duplicate them with the click of a button.

"This thing perpetuates," Singh said. When his team reviewed records of misdiagnosed cases, he found them full of identical notes. "It gets copy-pasted without freshness of thinking," he said.

Research has found that misdiagnosis disproportionately happens to patients whom doctors have labeled as "difficult" in their electronic health record. Singh cited a pair of studies that presented hypothetical scenarios to doctors.

In the first study, participants reviewed two sets of notes, one in which the patient was described simply by her symptoms and a second in which descriptions of disruptive or difficult behaviors had been added. Diagnostic accuracy dropped with the difficult patients.

The second study assessed treatment decisions and found that medical students and residents were less likely to prescribe pain medications to patients whose records included stigmatizing language.

Digital records can also display prejudice in handy formats. A 2016 paper in JAMA discussed a small example: an unnamed digital record system that affixed an airplane logo to some patients to indicate that they were, in medical parlance, "frequent flyers." That's a pejorative term for patients who need plenty of care or are looking for medications.

But even as tech might amplify these problems, it can also expose them. Digitized medical records are easily shared — and not merely with fellow doctors, but also with patients.

Since the '90s, patients have had the right to request their records, and doctors' offices can charge only reasonable fees to cover the cost of clerical work. Penalties against practices or hospitals that failed to produce records were rarely assessed — at least until the Trump administration, when Roger Severino, previously known as a socially conservative champion of religious freedom, took the helm of the U.S. Department of Health and Human Services' Office for Civil Rights.

During Severino's tenure, the office assessed a spate of monetary fines against some practices. The complaints mostly came from higher-income people, Severino said, citing his own difficulties getting medical records. "I can only imagine how much harder it often is for people with less means and education," he said.

Patients can now read the notes — the doctors' descriptions of their conditions and treatments — because of 2016 legislation. The bill nationalized policies that had started earlier in the decade, in Boston, because of an organization called OpenNotes.

For most patients, most of the time, opening record notes has been beneficial. "By and large, patients wanted to have access to the notes," said Fernandez, who has helped study and roll out the program. "They felt more in control of their healthcare. They felt they understood things better." Studies suggest that open notes lead to increased compliance, as patients say they're more likely to take medicines.

Conflicts Ahead?

But there's also a darker side to opening records: if patients find something they don't like. Fernandez's research, focusing on some early hospital adopters, has found that slightly more than 1 in 10 patients report being offended by what they find in their notes.

And the wave of computer-driven research focusing on patterns of language has similarly found low but significant numbers of discriminatory descriptions in notes. A study published in the journal Health Affairs found negative descriptors in nearly 1 in 10 records. Another team found stigmatizing language in 2.5% of records.

Patients can also compare what happened in a visit with what was recorded. They can see what was really on doctors' minds.

Oien, who has become a patient advocate since moving on from the military healthcare system, recalled an incident in which a client fainted while getting a drug infusion — treatments for thin skin, low iron, esophageal tears, and gastrointestinal conditions — and needed to be taken to the emergency room. Afterward, the patient visited a cardiologist. The cardiologist, who hadn't seen her previously, was "very verbally professional," Oien said. But what he wrote in the note — a story based on her ER visit — was very different. "Ninety percent of the record was about her quote-unquote drug use," Oien said, noting that it's rare to see the connection between a false belief about a patient and the person's future care.

Spotting those contradictions will become easier now. "People are going to say, ‘The doc said what?'" predicted Singh.

But many patients — even ones with wealth and social standing — may be reluctant to talk to their doctors about errors or bias. Fernandez, the OpenNotes pioneer, didn't. After one visit, she saw a physical exam listed on her record when none had occurred.

"I did not raise that to that clinician. It's really hard to raise things like that," she said. "You're afraid they won't like you and won't take good care of you anymore."

Darius Tahir: DariusT@kff.org, @dariustahir

Patient Satisfaction Surveys Earn a Zero on Tracking Whether Hospitals Deliver Culturally Competent Care

KFF Health News, September 8, 2022

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.

Rae Ellen Bichell: rbichell@kff.org, @raelnb

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