About a year into the process of redetermining Medicaid eligibility after the covid-19 public health emergency, more than 20 million people have been kicked off the joint federal-state program for low-income families.

A chorus of stories recount the ways the unwinding has upended people’s lives, but Native Americans are proving particularly vulnerable to losing coverage and face greater obstacles to reenrolling in Medicaid or finding other coverage.

“From my perspective, it did not work how it should,” said Kristin Melli, a pediatric nurse practitioner in rural Kalispell, Montana, who also provides telehealth services to tribal members on the Fort Peck Reservation.

The redetermination process has compounded long-existing problems people on the reservation face when seeking care, she said. She saw several patients who were still eligible for benefits disenrolled. And a rise in uninsured tribal members undercuts their health systems, threatening the already tenuous access to care in Native communities.

One teenager, Melli recalled, lost coverage while seeking lifesaving care. Routine lab work raised flags, and in follow-ups Melli discovered the girl had a condition that could have killed her if untreated. Melli did not disclose details, to protect the patient’s privacy.

Melli said she spent weeks working with tribal nurses to coordinate lab monitoring and consultations with specialists for her patient. It wasn’t until the teen went to a specialist that Melli received a call saying she had been dropped from Medicaid coverage.

The girl’s parents told Melli they had reapplied to Medicaid a month earlier but hadn’t heard back. Melli’s patient eventually got the medication she needed with help from a pharmacist. The unwinding presented an unnecessary and burdensome obstacle to care.

Pat Flowers, Montana Democratic Senate minority leader, said during a political event in early April that 13,000 tribal members had been disenrolled in the state.

Native American and Alaska Native adults are enrolled in Medicaid at higher rates than their white counterparts, yet some tribal leaders still didn’t know exactly how many of their members had been disenrolled as of a survey conducted in February and March. The Tribal Self-Governance Advisory Committee of the Indian Health Service conducted and published the survey. Respondents included tribal leaders from Alaska, Arizona, Idaho, Montana, and New Mexico, among other states.

Tribal leaders reported many challenges related to the redetermination, including a lack of timely information provided to tribal members, patients unaware of the process or their disenrollment, long processing times, lack of staffing at the tribal level, lack of communication from their states, concerns with obtaining accurate tribal data, and in cases in which states have shared data, difficulties interpreting it.

Research and policy experts initially feared that vulnerable populations, including rural Indigenous communities and families of color, would experience greater and unique obstacles to renewing their health coverage and would be disproportionately harmed.

“They have a lot at stake and a lot to lose in this process,” said Joan Alker, executive director of the Georgetown University Center for Children and Families and a research professor at the McCourt School of Public Policy. “I fear that that prediction is coming true.”

Cammie DuPuis-Pablo, tribal health communications director for the Confederated Salish and Kootenai Tribes in Montana, said the tribes don’t have an exact number of their members disenrolled since the redetermination began, but know some who lost coverage as far back as July still haven’t been reenrolled.

The tribes hosted their first outreach event in late April as part of their effort to help members through the process. The health care resource division is meeting people at home, making calls, and planning more events.

The tribes receive a list of members’ Medicaid status each month, DuPuis-Pablo said, but a list of those no longer insured by Medicaid would be more helpful.

Because of those data deficits, it’s unclear how many tribal members have been disenrolled.

“We are at the mercy of state Medicaid agencies on what they’re willing to share,” said Yvonne Myers, consultant on the Affordable Care Act and Medicaid for Citizen Potawatomi Nation Health Services in Oklahoma.

In Alaska, tribal health leaders struck a data-sharing agreement with the state in July but didn’t begin receiving information about their members’ coverage for about a month — at which point more than 9,500 Alaskans had already been disenrolled for procedural reasons.

“We already lost those people,” said Gennifer Moreau-Johnson, senior policy adviser in the Department of Intergovernmental Affairs at the Alaska Native Tribal Health Consortium, a nonprofit organization. “That’s a real impact.”

Because federal regulations don’t require states to track or report race and ethnicity data for people they disenroll, fewer than 10 states collect such information. While the data from these states does not show a higher rate of loss of coverage by race, a KFF report states that the data is limited and that a more accurate picture would require more demographic reporting from more states.

Tribal health leaders are concerned that a high number of disenrollments among their members is financially undercutting their health systems and ability to provide care.

“Just because they’ve fallen off Medicaid doesn’t mean we stop serving them,” said Jim Roberts, senior executive liaison in the Department of Intergovernmental Affairs of the Alaska Native Tribal Health Consortium. “It means we’re more reliant on other sources of funding to provide that care that are already underresourced.”

Three in 10 Native American and Alaska Native people younger than 65 rely on Medicaid, compared with 15% of their white counterparts. The Indian Health Service is responsible for providing care to approximately 2.6 million of the 9.7 million Native Americans and Alaska Natives in the U.S., but services vary across regions, clinics, and health centers. The agency itself has been chronically underfunded and unable to meet the needs of the population. For fiscal year 2024, Congress approved $6.96 billion for IHS, far less than the $51.4 billion tribal leaders called for.

Because of that historical deficit, tribal health systems lean on Medicaid reimbursement and other third-party payers, like Medicare, the Department of Veterans Affairs, and private insurance, to help fill the gap. Medicaid accounted for two-thirds of third-party IHS revenues as of 2021.

Some tribal health systems receive more federal funding through Medicaid than from IHS, Roberts said.

Tribal health leaders fear diminishing Medicaid dollars will exacerbate the long-standing health disparities — such as lower life expectancy, higher rates of chronic disease, and inferior access to care — that plague Native Americans.

The unwinding has become “all-consuming,” said Monique Martin, vice president of intergovernmental affairs for the Alaska Native Tribal Health Consortium.

“The state’s really having that focus be right into the minutiae of administrative tasks, like: How do we send text messages to 7,000 people?” Martin said. “We would much rather be talking about: How do we address social determinants of health?”

Melli said she has stopped hearing of tribal members on the Fort Peck Reservation losing their Medicaid coverage, but she wonders if that means disenrolled people didn’t seek help.

“Those are the ones that we really worry about,” she said, “all of these silent cases. … We only know about the ones we actually see.”

TURLOCK, Calif. — For much of his young life, Jorge Sanchez regularly gasped for air, at times coughing so violently that he’d almost throw up. His mother whisked him to the emergency room late at night and slept with him to make sure he didn’t stop breathing.

“He’s had these problems since he was born, and I couldn’t figure out what was triggering his asthma,” Fabiola Sandoval said of her son, Jorge, now 4. “It’s so hard when your child is hurting. I was willing to try anything.”

In January, community health workers visited Sandoval’s home in Turlock, a city in California’s Central Valley where dust from fruit and nut orchards billows through the air. They scoured Sandoval’s home for hazards and explained that harsh cleaning products, air fresheners, and airborne dust and pesticides can trigger an asthma attack.

The team also provided Sandoval with air purifiers, a special vacuum cleaner that can suck dust out of the air, hypoallergenic mattress covers, and a humidity sensor — goods that retail for hundreds of dollars. Within a few months, Jorge was breathing easier and was able to run and play outside.

The in-home consultation and supplies were paid for by Medi-Cal, California’s Medicaid health insurance program for low-income residents. Gov. Gavin Newsom is spearheading an ambitious $12 billion experiment to transform Medi-Cal into both a health insurer and a social services provider, one that relies not only on doctors and nurses, but also community health workers and nonprofit groups that offer dozens of services, including delivering healthy meals and helping homeless people pay for housing.

These groups are redefining health care in California as they compete with businesses for a share of the money, and become a new arm of the sprawling Medi-Cal bureaucracy that serves nearly 15 million low-income residents on an annual budget of $158 billion.

But worker shortages, negotiations with health insurance companies, and learning to navigate complex billing and technology systems have hamstrung the community groups’ ability to deliver the new services: Now into the third year of the ambitious five-year experiment, only a small fraction of eligible patients have received benefits.

“This is still so new, and everyone is just overwhelmed at this point, so it’s slow-going,” said Kevin Hamilton, a senior director at the Central California Asthma Collaborative.

The collaborative has served about 3,650 patients, including Sandoval, in eight counties since early 2022, he said. It has years of experience with Medi-Cal patients in the Central Valley and has received about $1.5 million of the new initiative’s money.

By contrast, CalOptima Health, Orange County’s primary Medi-Cal insurer, is new to offering asthma benefits and has signed up 58 patients so far.

“Asthma services are so difficult to get going” because the nonprofit infrastructure for these services is virtually nonexistent, said Kelly Bruno-Nelson, CalOptima’s executive director for Medi-Cal. “We need more community-based organizations on board because they’re the ones who can serve a population that nobody wants to deal with.”

Newsom, a Democrat in his second term, says his signature health care initiative, known as CalAIM, seeks to reduce the cost of caring for the state’s sickest and most vulnerable patients, including homeless Californians, foster children, former inmates, and people battling addiction disorders.

In addition to in-home asthma remediation, CalAIM offers 13 broad categories of social services, plus a benefit connecting eligible patients with one-on-one care managers to help them obtain anything they need to get healthier, from grocery shopping to finding a job.

The 25 managed-care insurance companies participating in Medi-Cal can choose which services they offer, and contract with community groups to provide them. Insurers have hammered out about 4,300 large and small contracts with nonprofits and businesses.

So far, about 103,000 Medi-Cal patients have received CalAIM services and roughly 160,000 have been assigned personal care managers, according to state data, a sliver of the hundreds of thousands of patients who likely qualify.

“We’re all new to health care, and a lot of this is such a foreign concept,” said Helena Lopez, executive director of A Greater Hope, a nonprofit organization providing social services in Riverside and San Bernardino counties, such as handing out baseball cleats to children to help them be active.

Tiffany Sickler runs Koinonia Family Services, which offers California foster children mental health and other types of care, and even helped a patient pay off parking tickets. But the program is struggling on a shoestring budget.

“If you want to do this, you have to learn all these new systems. It’s been a huge learning curve, and very time-consuming and frustrating, especially without adequate funding,” she said.

Brandon Richards, a Newsom spokesperson, defended CalAIM, saying that it was “on the cutting edge of health care” and that the state was working to increase “awareness of these new services and support.”

For nonprofits and businesses, CalAIM is a money-making opportunity — one that top state health officials hope to make permanent. Health insurers, which receive hefty payments from the state to serve more people and offer new services, share a portion with service providers.

In some places, community groups are competing with national corporations for the new funding, such as Mom’s Meals, an Iowa-based company that delivers prepared meals across the United States.

Mom’s Meals has an advantage over neighborhood nonprofit groups because it has long served seniors on Medicare and was able to immediately start offering the CalAIM benefit of home-delivered meals for patients with chronic diseases. But even Mom’s Meals isn’t reaching everyone who qualifies, because doctors and patients don’t always know it’s an option, said Catherine Macpherson, the company’s chief nutrition officer.

“Utilization is not as high as it should be yet,” she said. “But we were well positioned, because we already had departments to do billing and contracting with health care.”

Middleman companies also have their eye on the billions of CalAIM dollars and are popping up to assist small organizations to go up against established ones like Mom’s Meals. For instance, the New York-based Nonprofit Finance Fund is advising homeless service providers how to get more contracts and expand benefits.

Full Circle Health Network, with 70 member organizations, is helping smaller nonprofit groups develop and deliver services primarily for families and foster children. Full Circle has signed a deal with Kaiser Permanente, allowing the health care giant to access its network of community groups.

“We’re allowing organizations to launch these benefits much faster than they’ve been able to do and to reach more vulnerable people,” said Camille Schraeder, chief executive of Full Circle. “Many of these are grassroots organizations that have the trust and expertise on the ground, but they’re new to health care.”

One of the biggest challenges community groups face is hiring workers, who are key to finding eligible patients and persuading them to participate.

Kathryn Phillips, a workforce expert at the California Health Care Foundation, said there isn’t enough seed money for community groups to hire workers and pay for new technology platforms. “They bring the trust that is needed, the cultural competency, the diversity of languages,” she said. “But there needs to be more funding and reimbursement to build this workforce.”

Health insurers say they are trying to increase the workforce. For instance, L.A. Care Health Plan, the largest Medi-Cal insurer in California, has given $66 million to community organizations for hiring and other CalAIM needs, said Sameer Amin, the group’s chief medical officer.

“They don’t have the staffing to do all this stuff, so we’re helping with that all while teaching them how to build up their health care infrastructure,” he said. “Everyone wants a win, but this isn’t going to be successful overnight.”

In the Central Valley, Jorge Sanchez is one of the lucky early beneficiaries of CalAIM.

His mother credits the trust she established with community health workers, who spent many hours over multiple visits to teach her how to control her son’s asthma.

“I used to love cleaning with bleach” but learned it can trigger breathing problems, Sandoval said.

Since she implemented the health workers’ recommendations, Sandoval has been able to let Jorge sleep alone at night for the first time in four years.

“Having this program and all the things available is amazing,” said Sandoval, as she pointed to the dirty dust cup in her new vacuum cleaner. “Now my son doesn’t have as many asthma attacks and he can run around and be a normal kid.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

Jacqueline Saa has a genetic condition that leaves her unable to stand and walk on her own or hold a job. Every weekday for four years, Saa, 43, has relied on a home health aide to help her cook, bathe and dress, go to the doctor, pick up medications, and accomplish other daily tasks.

She received coverage through Florida’s Medicaid program until it abruptly stopped at the end of March, she said.

“Every day the anxiety builds,” said Saa, who lost her home health aide for 11 days, starting April 1, despite being eligible. The state has since restored Saa’s home health aide service, but during the gap she leaned on her mother and her 23- and 15-year-old daughters, while struggling to regain her Medicaid benefits.

“It’s just so much to worry about,” she said. “This is a health care system that’s supposed to help.”

Medicaid’s home and community-based services are designed to help people like Saa, who have disabilities and need help with everyday activities, stay out of a nursing facility. But people are losing benefits with little or no notice, getting bad advice when they call for information, and facing major disruptions in care while they wait for the issue to get sorted out, according to attorneys and advocates who are hearing from patients.

In Colorado, Texas, and Washington, D.C., the National Health Law Program, a nonprofit that advocates for low-income and underserved people, has filed civil rights complaints with two federal agencies alleging discrimination against people with disabilities. The group has not filed a lawsuit in Florida, though its attorneys say they’ve heard of many of the same problems there.

Attorneys nationwide say the special needs of disabled people were not prioritized as states began to review eligibility for Medicaid enrollees after a pandemic-era mandate for coverage expired in March 2023.

“Instead of monitoring and ensuring that people with disabilities could make their way through the process, they sort of treated them like everyone else with Medicaid,” said Elizabeth Edwards, a senior attorney for the National Health Law Program. Federal law puts an “obligation on states to make sure people with disabilities don’t get missed.”

At least 21 million people nationwide have been disenrolled from Medicaid since states began eligibility redeterminations in spring 2023, according to a KFF analysis.

The unwinding, as it’s known, is an immense undertaking, Edwards said, and some states did not take extra steps to set up a special telephone line for those with disabilities, for example, so people could renew their coverage or contact a case manager.

As states prepared for the unwinding, the Centers for Medicare & Medicaid Services, the federal agency that regulates Medicaid, advised states that they must give people with disabilities the help they need to benefit from the program, including specialized communications for people who are deaf or blind.

The Florida Department of Children and Families, which verifies eligibility for the state’s Medicaid program, has a specialized team that processes applications for home health services, said Mallory McManus, the department’s communications director.

People with disabilities disenrolled from Medicaid services were “properly noticed and either did not respond timely or no longer met financial eligibility requirements,” McManus said, noting that people “would have been contacted by us up to 13 times via phone, mail, email, and text before processing their disenrollment.”

Allison Pellegrin of Ormond Beach, Florida, who lives with her sister Rhea Whitaker, who is blind and cognitively disabled, said that never happened for her family.

“They just cut off the benefits without a call, without a letter or anything stating that the benefits would be terminating,” Pellegrin said. Her sister’s home health aide, whom she had used every day for nearly eight years, stopped service for 12 days. “If I’m getting everything else in the mail,” she said, “it seems weird that after 13 times I wouldn’t have received one of them.”

Pellegrin, 58, a sales manager who gets health insurance through her employer, took time off from work to care for Whitaker, 56, who was disabled by a severe brain injury in 2006.

Medicaid reviews have been complicated, in part, by the fact that eligibility works differently for home health services than for general coverage, based on federal regulations that give states more flexibility to determine financial eligibility. Income limits for home health services are higher, for instance, and assets are counted differently.

In Texas, a parent in a household of three would be limited to earning no more than $344 a month to qualify for Medicaid. And most adults with a disability can qualify without a dependent child and be eligible for Medicaid home health services with an income of up to $2,800 a month.

The state was not taking that into consideration, said Terry Anstee, a supervising attorney for community integration at Disability Rights Texas, a nonprofit advocacy group.

Even a brief lapse in Medicaid home health services can fracture relationships that took years to build.

“It may be very difficult for that person who lost that attendant to find another attendant,” Anstee said, because of workforce shortages for attendants and nurses and high demand.

Nearly all states have a waiting list for home health services. About 700,000 people were on waiting lists in 2023, most of them with intellectual and developmental disabilities, according to KFF data.

Daniel Tsai, a deputy administrator at CMS, said the agency is committed to ensuring that people with disabilities receiving home health services “can renew their Medicaid coverage with as little red tape as possible.”

CMS finalized a rule this year for states to monitor Medicaid home health services. For example, CMS will now track how long it takes for people who need home health care to receive the services and will require states to track how long people are on waitlists.

Staff turnover and vacancies at local Medicaid agencies have contributed to backlogs, according to complaints filed with two federal agencies focused on civil rights.

The District of Columbia’s Medicaid agency requires that case managers help people with disabilities complete renewals. However, a complaint says, case managers are the only ones who can help enrollees complete eligibility reviews and, sometimes, they don’t do their jobs.

Advocates for Medicaid enrollees have also complained to the Federal Trade Commission about faulty eligibility systems developed by Deloitte, a global consulting firm that contracts with about two dozen states to design, implement, or operate automated benefits systems.

KFF Health News found that multiple audits of Colorado’s eligibility system, managed by Deloitte, uncovered errors in notices sent to enrollees. A 2023 review by the Colorado Office of the State Auditor found that 90% of sampled notices contained problems, some of which violate the state’s Medicaid rules. The audit blamed “flaws in system design” for populating notices with incorrect dates.

Deloitte declined to comment on specific state issues.

In March, Colorado officials paused disenrollment for people on Medicaid who received home health services, which includes people with disabilities, after a “system update” led to wrongful terminations in February.

Another common problem is people being told to reapply, which immediately cuts off their benefits, instead of appealing the cancellation, which would ensure their coverage while the claim is investigated, said attorney Miriam Harmatz, founder of the Florida Health Justice Project.

“What they’re being advised to do is not appropriate. The best way to protect their legal rights,” Harmatz said, “is to file an appeal.”

But some disabled people are worried about having to repay the cost of their care.

Saa, who lives in Davie, Florida, received a letter shortly before her benefits were cut that said she “may be responsible to repay any benefits” if she lost her appeal.

The state should presume such people are still eligible and preserve their coverage, Harmatz said, because income and assets for most beneficiaries are not going to increase significantly and their conditions are not likely to improve.

The Florida Department of Children and Families would not say how many people with disabilities had lost Medicaid home health services.

But in Miami-Dade, Florida’s most populous county, the Alliance for Aging, a nonprofit that helps older and disabled people apply for Medicaid, saw requests for help jump from 58 in March to 146 in April, said Lisa Mele, the organization’s director of its Aging and Disability Resources Center.

“So many people are calling us,” she said.

States are not tracking the numbers, so “the impact is not clear,” Edwards said. “It’s a really complicated struggle.”

Saa filed an appeal March 29 after learning from her social worker that her benefits would expire at the end of the month. She went to the agency but couldn’t stand in a line that was 100 people deep. Calls to the state’s Medicaid eligibility review agency were fruitless, she said.

“When they finally connected me to a customer service representative, she was literally just reading the same explanation letter that I’ve read,” Saa said. “I did everything in my power.”

Saa canceled her home health aide. She lives on limited Social Security disability income and said she could not afford to pay for the care.

On April 10, she received a letter from the state saying her Medicaid had been reinstated, but she later learned that her plan did not cover home health care.

The following day, Saa said, advocates put her in touch with a point person at Florida’s Medicaid agency who restored her benefits. A home health aide showed up April 12. Saa said she’s thankful but feels anxious about the future.

“The toughest part of that period is knowing that that can happen at any time,” she said, “and not because of anything I did wrong.”

Have you or someone you know with disabilities unexpectedly lost Medicaid benefits since April 2023? Tell KFF Health News about it here.

KFF Health News correspondents Samantha Liss and Rachana Pradhan contributed to this report.

The Host

A new analysis finds that graduating medical students were less likely to apply this year for residency training in states that ban or restrict abortion. That was true not only for aspiring OB-GYNs and others who regularly treat pregnant patients, but for all specialties.

Meanwhile, another study has found that more than 4 million children have been terminated from Medicaid or the Children’s Health Insurance Program since the federal government ended a covid-related provision barring such disenrollments. The study estimates about three-quarters of those children were still eligible and were kicked off for procedural reasons.

This week’s panelists are Julie Rovner of KFF Health News, Lauren Weber of The Washington Post, Joanne Kenen of the Johns Hopkins University schools of nursing and public health and Politico Magazine, and Anna Edney of Bloomberg News.

Among the takeaways from this week’s episode:

• More medical students are avoiding applying to residency programs in states with abortion restrictions. That could worsen access problems in areas that already don’t have enough doctors and other health providers in their communities.
• New threats to abortion care in the United States include not only state laws penalizing abortion pill possession and abortion travel, but also online misinformation campaigns — which are trying to discourage people from supporting abortion ballot measures by telling them lies about how their information might be used.
• The latest news is out on the fate of Medicare, and a pretty robust economy appears to have bought the program’s trust fund another five years. Still, its overall health depends on a long-term solution — and a long-term solution depends on Congress.
• In Medicaid expansion news, Mississippi lawmakers’ latest attempt to expand the program was unsuccessful, and a report shows two other nonexpansion states — Texas and Florida — account for about 40% of the 4 million kids who were dropped from Medicaid and CHIP last year. By not expanding Medicaid, holdout states say no to billions of federal dollars that could be used to cover health care for low-income residents.
• Finally, the bankruptcy of the hospital chain Steward Health Care tells a striking story of what happens when private equity invests in health care.

Also this week, Rovner interviews KFF Health News’ Katheryn Houghton, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a patient who went outside his insurance network for a surgery and thought he had covered all his bases. It turned out he hadn’t. If you have an outrageous or incomprehensible medical bill you’d like to share with us, you can do that here.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Nation’s “The Abortion Pill Underground,” by Amy Littlefield.

Joanne Kenen: The New York Times’ “In Medicine, the Morally Unthinkable Too Easily Comes to Seem Normal,” by Carl Elliott.

Anna Edney: ProPublica’s “Facing Unchecked Syphilis Outbreak, Great Plains Tribes Sought Federal Help. Months Later, No One Has Responded,” by Anna Maria Barry-Jester.

Lauren Weber: Stat’s “NYU Professors Who Defended Vaping Didn’t Disclose Ties to Juul, Documents Show,” by Nicholas Florko.

Also mentioned on this week’s podcast:

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

President Joe Biden counts among his accomplishments the record-high number of people, more than 21 million, who enrolled in Obamacare plans this year. Behind the scenes, however, federal regulators are contending with a problem that affects people’s coverage: rogue brokers who have signed people up for Affordable Care Act plans, or switched them into new ones, without their permission.

Fighting the problem presents tension for the administration: how to thwart the bad actors without affecting ACA sign-ups.

Complaints about these unauthorized changes — which can cause affected policyholders to lose access to medical care, pay higher deductibles, or even incur surprise tax bills — rose sharply in recent months, according to brokers who contacted KFF Health News and federal workers who asked not to be identified.

Ronnell Nolan, president and CEO of the trade association Health Agents for America, said her group has suggested to the Centers for Medicare & Medicaid Services that it add two-factor authentication to healthcare.gov or send text alerts to consumers if an agent tries to access their accounts. But the agency told her it doesn’t always have up-to-date contact information.

“We’ve given them a whole host of ideas,” she said. “They say, ‘Be careful what you wish for.’ But we don’t mind going an extra step if you can stop this fraud and abuse, because clients are being hurt.”

Some consumers are pursued when they respond to misleading social media marketing ads promising government subsidies, but most have no idea how they fell victim to plan-switching. Problems seem concentrated in the 32 states using the federal exchange.

Federal regulators have declined to say how many complaints about unauthorized sign-ups or plan switches they’ve received, or how many insurance agents they’ve sanctioned as a result. But the problem is big enough that CMS says it’s working on technological and regulatory solutions. Affected consumers and agents have filed a civil lawsuit in federal district court in Florida against private-sector firms allegedly involved in unauthorized switching schemes.

Biden has pushed hard to make permanent the enhanced subsidies first put in place during the covid pandemic that, along with other steps including increased federal funding for outreach, helped fuel the strong enrollment growth. Biden contrasts his support for the ACA with the stance of former President Donald Trump, who supported attempts to repeal most of the law and presided over funding cuts and declining enrollment.

Most proposed solutions to the rogue-agent problem involve making it more difficult for agents to access policyholder information or requiring wider use of identity questions tied to enrollees’ credit history. The latter could be stumbling blocks for low-income people or those with limited financial records, said Sabrina Corlette, co-director of the Center on Health Insurance Reforms at Georgetown University.

“That is the knife edge the administration has to walk,” said Corlette, “protecting consumers from fraudulent behavior while at the same time making sure there aren’t too many barriers.”

Jeff Wu, acting director of the Center for Consumer Information & Insurance Oversight, said in a statement that the agency is evaluating options on such factors as how effective they would be, their impact on consumers’ ability to enroll, and how fast they could be implemented.

The agency is also working closely, he wrote, with insurance companies, state insurance departments, and law enforcement “so that agents violating CMS rules or committing fraud face consequences.” And it is reaching out to states that run their own ACA markets for ideas.

That’s because Washington, D.C., and the 18 states that run their own ACA marketplaces have reported far fewer complaints about unauthorized enrollment and plan-switching. Most include layers of security in addition to those the federal marketplace has in place — some use two-factor authentication — before agents can access policyholder information.

California, for example, allows consumers to designate an agent and to “log in and add or remove an agent at will,” said Robert Kingston, interim director of outreach and sales for Covered California, the state’s ACA marketplace. The state can also send consumers a one-time passcode to share with an agent of their choice. Consumers in Colorado and Pennsylvania can similarly designate specific agents to access their accounts.

By contrast, agents can more easily access policyholder information when using private-sector websites that link them to the federal ACA market — all they need is a person’s name, date of birth, and state of residence — to enroll them or switch their coverage.

CMS has approved dozens of such “enhanced direct enrollment” websites run by private companies, which are designed to make it easier and faster for agents certified to offer insurance through healthcare.gov.

Rules went into effect last June requiring agents to get written or recorded consent from clients before enrolling them or changing their coverage, but brokers say they’re rarely asked to produce the documentation. If CMS makes changes to healthcare.gov — such as adding passcodes, as California has — it would need to require all alternative-enrollment partners to do the same.

The largest is San Francisco-based HealthSherpa, which assisted 52% of active enrollments nationally for this year, said CEO George Kalogeropoulos.

The company has a 10-person fraud investigation team, he said, which has seen “a significant spike in concerns about unauthorized switching.” They report problems to state insurance departments, insurance carriers, and federal regulators “and refer consumers to advocates on our team to make sure their plans are corrected.”

Solutions must be “targeted,” he said. “The issue with some of the solutions proposed is it negatively impacts the ability of all consumers to get enrolled.”

Most people who sign up for ACA plans are aided by agents or platforms like HealthSherpa, rather than doing it themselves or seeking help from nonprofit organizations. Brokers don’t charge consumers; instead, they receive commissions from insurers participating in state and federal marketplaces for each person they enroll in a plan.

While California officials say their additional layers of authentication have not noticeably affected enrollment numbers, the state’s recent enrollment growth has been slower than in states served by healthcare.gov.

Still, Covered California’s Kingston pointed to a decreased number of uninsured people in the state. In 2014, when much of the ACA was implemented, 12.5% of Californians were uninsured, falling to 6.5% in 2022, according to data compiled by KFF. That year, the share of people uninsured nationwide was 8%.

Corlette said insurers have a role to play, as do states and CMS.

“Are there algorithms that can say, ‘This is a broker with outlier behavior’?” Insurance companies could then withhold commissions “until they can figure it out,” she said.

Kelley Schultz, vice president of commercial policy at AHIP, the trade association for large insurance companies, said sharing more information from the government marketplace about which policies are being switched could help insurers spot patterns.

CMS could also set limits on plan switches, as there is generally no legitimate need for multiple changes in a given month, Schultz said.

Marisol Pantoja Toribio se encontró un bulto en el pecho a principios de enero. Sin seguro y viviendo en California sin papeles, y sin su familia, la normalmente despreocupada mujer de 43 años se dio cuenta pronto de lo limitadas que eran sus opciones.

“Yo dije, ¿Qué voy a hacer? …. “, recordó emocionada. Inmediatamente le preocupó que pudiera tener cáncer. “Iba y venía: tengo [cáncer], no tengo, sí tengo, no tengo”. Y si estaba enferma, agregó, no podría trabajar ni pagar el alquiler. Al no tener seguro de salud, Pantoja Toribio no podía pagar para averiguar si tenía una enfermedad grave.

A partir de este año, Medi-Cal, el programa de Medicaid de California, se amplió para incluir a los inmigrantes que no tienen residencia legal, algo que podría haber funcionado perfectamente para Pantoja Toribio, que ha vivido en la ciudad de Brentwood, en el Área de la Bahía, durante tres años. Pero su solicitud de Medi-Cal fue rechazada rápidamente porque, como trabajadora agrícola que gana $16 la hora, sus ingresos anuales de unos $24,000 eran demasiado altos para calificar para el programa.

California es el primer estado en ampliar Medicaid a todos los adultos que reúnan los requisitos, independientemente de su estatus migratorio, una medida celebrada por los activistas de la salud y por líderes políticos de todo el estado. Pero muchos inmigrantes sin estatus legal permanente, especialmente los que viven en zonas de California donde el costo de vida es más alto, ganan demasiado dinero como para calificar para Medi-Cal.

El estado paga la factura de la expansión de Medi-Cal, pero la ley federal prohíbe a los que llama “indocumentados” recibir subsidios de seguros u otros beneficios de la Ley de Cuidado de Salud a Bajo Precio (ACA), dejando a muchos empleados, sin opciones viables médico.

Ahora, los mismos activistas de salud que lucharon por la expansión de Medi-Cal dicen que el siguiente paso para lograr la equidad en salud es ampliar Covered California, el mercado estatal de ACA, a todos los inmigrantes adultos mediante la aprobación de la AB 4.

“Hay personas en este estado que trabajan y son la columna vertebral de tantos sectores de nuestra economía y contribuyen con su trabajo e incluso con sus impuestos … pero están excluidos de nuestra red de seguridad social”, dijo Sarah Dar, directora del Centro de Política de Inmigración de California, una de las dos organizaciones que patrocinan el proyecto de ley, denominado #Health4All.

Para calificar para Medi-Cal, una persona no puede ganar más del 138% del nivel federal de pobreza, que actualmente es de cerca de $21,000 al año para un individuo. Una familia de tres miembros tendría que ganar menos de $35,632 al año.

Para las personas que superan esos umbrales, el mercado de Covered California ofrece varios planes de salud, a menudo con subsidios federales y estatales, con primas tan bajas como $10 al mes. La esperanza es crear lo que los activistas llaman un “mercado espejo” en el sitio web de Covered California para que a los inmigrantes, independientemente de su estatus, se les pueda ofrecer los mismos planes de salud que serían subvencionados sólo por el estado.

A pesar de la mayoría demócrata en la Legislatura, el proyecto de ley podría tener dificultades para ser aprobado, ya que el estado se enfrenta a un déficit presupuestario previsto para el próximo año de entre $38 mil millones y $73 mil millones. El gobernador Gavin Newsom y líderes legislativos anunciaron un paquete de $17 mil millones para empezar a reducir la brecha, pero parece inevitable que se produzcan recortes significativos en el gasto.

No está claro cuánto costaría extender Covered California a todos los inmigrantes, según el miembro de la Asamblea Joaquín Arambula, demócrata de Fresno que presentó el proyecto de ley.

El Centro de Política de Inmigración estima que la creación del mercado costaría al menos $15 millones. Si el proyecto de ley se aprueba, los patrocinadores tendrían que asegurar la financiación de los subsidios, que podrían ascender a miles de millones de dólares anuales.

“Es un momento difícil para pedir nuevos gastos”, señaló Dar. “El costo de la puesta en marcha del mercado espejo es una cifra relativamente baja. Así que tenemos esperanzas de que aún esté dentro de lo posible”.

Arambula dijo que es optimista en cuanto a que el estado continuará liderando en la mejora del acceso a la salud para los inmigrantes que no tienen residencia legal.

“Creo que seguiremos adelante, ya que estamos trabajando para hacer de ésta una California para todos”, expresó.

El proyecto de ley fue aprobado por la Asamblea en julio pasado en una votación de 64-9 y ahora falta la acción del Comité de Asignaciones del Senado, según la oficina de Arambula.

Se calcula que unas 520,000 personas en California podrían optar por un plan de Covered California si tuvieran un estatus legal, según el centro de investigación laboral de la Universidad de California-Berkeley. Pantoja Toribio, que emigró sola desde México huyendo de una relación abusiva, dijo que tuvo suerte. Se enteró de las opciones alternativas de atención médica cuando hizo su visita semanal a un banco de alimentos en Hijas del Campo, una organización de defensa de los trabajadores agrícolas del condado de Contra Costa, donde le dijeron que podría calificar para un plan que ayuda a personas de bajos ingresos a través de Kaiser Permanente.

Pantoja Toribio aplicó, justo antes que se cerrara el plazo de inscripción a finales de enero. Gracias al plan, supo que el bulto que tenía en el pecho no era canceroso.

“Diosito me oyó”, exclamó. “Gracias a Dios”.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

Marisol Pantoja Toribio found a lump in her breast in early January. Uninsured and living in California without legal status and without her family, the usually happy-go-lucky 43-year-old quickly realized how limited her options were.

“I said, ‘What am I going to do?’” she said in Spanish, quickly getting emotional. She immediately worried she might have cancer. “I went back and forth — I have [cancer], I don’t have it, I have it, I don’t have it.” And if she was sick, she added, she wouldn’t be able to work or pay her rent. Without health insurance, Pantoja Toribio couldn’t afford to find out if she had a serious condition.

Beginning this year, Medi-Cal, California’s Medicaid program, expanded to include immigrants lacking legal residency, timing that could have worked out perfectly for Pantoja Toribio, who has lived in the Bay Area city of Brentwood for three years. But her application for Medi-Cal was quickly rejected: As a farmworker earning $16 an hour, her annual income of roughly $24,000 was too high to qualify for the program.

California is the first state to expand Medicaid to all qualifying adults regardless of immigration status, a move celebrated by health advocates and political leaders across the state. But many immigrants without permanent legal status, especially those who live in parts of California where the cost of living is highest, earn slightly too much money to qualify for Medi-Cal.

The state is footing the bill for the Medi-Cal expansion, but federal law bars those it calls “undocumented” from receiving insurance subsidies or other benefits from the Affordable Care Act, leaving many employed but without viable health insurance options.

Now, the same health advocates who fought for the Medi-Cal expansion say the next step in achieving health equity is expanding Covered California, the state’s ACA marketplace, to all immigrant adults by passing AB 4.

“There are people in this state who work and are the backbone of so many sectors of our economy and contribute their labor and even taxes … but they are locked out of our social safety net,” said Sarah Dar, policy director at the California Immigrant Policy Center, one of two organizations sponsoring the bill, dubbed #Health4All.

To qualify for Medi-Cal, an individual cannot earn more than 138% of the federal poverty level, which currently amounts to nearly $21,000 a year for a single person. A family of three would need to earn less than $35,632 a year.

For people above those thresholds, the Covered California marketplace offers various health plans, often with federal and state subsidies, yielding premiums as low as $10 a month. The hope is to create what advocates call a “mirror marketplace” on the Covered California website so that immigrants regardless of status can be offered the same health plans that would be subsidized only by the state.

Despite a Democratic supermajority in the legislature, the bill might struggle to pass, with the state facing a projected budget deficit for next year of anywhere from $38 billion to $73 billion. Gov. Gavin Newsom and legislative leaders announced a $17 billion package to start reducing the gap, but significant spending cuts appear inevitable.

It’s not clear how much it would cost to extend Covered California to all immigrants, according to Assembly member Joaquin Arambula, the Fresno Democrat who introduced the bill.

The immigrant policy center estimates that setting up the marketplace would cost at least $15 million. If the bill passes, sponsors would then need to secure funding for the subsidies, which could run into the billions of dollars annually.

“It is a tough time to be asking for new expenditures,” Dar said. “The mirror marketplace startup cost is a relatively very low number. So we’re hopeful that it’s still within the realm of possibility.”

Arambula said he’s optimistic the state will continue to lead in improving access to health care for immigrants who lack legal residency.

“I believe we will continue to stand up, as we are working to make this a California for all,” he said.

The bill passed the Assembly last July on a 64-9 vote and now awaits action by the Senate Appropriations Committee, Arambula’s office said.

An estimated 520,000 people in California would qualify for a Covered California plan if not for their lack of legal status, according to the labor research center at the University of California-Berkeley. Pantoja Toribio, who emigrated alone from Mexico after leaving an abusive relationship, said she was lucky. She learned about alternative health care options when she made her weekly visit to a food pantry at Hijas del Campo, a Contra Costa County farmworker advocacy organization, where they told her she might qualify for a plan for low-income people through Kaiser Permanente.

Pantoja Toribio applied just before open enrollment closed at the end of January. Through the plan, she learned that the lump in her breast was not cancerous.

“God heard me,” she said. “Thank God.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

Oregon is shipping air conditioners, air purifiers, and power banks to some of its most vulnerable residents, a first-in-the-nation experiment to use Medicaid money to prevent the potentially deadly health effects of extreme heat, wildfire smoke, and other climate-related disasters.

The equipment, which started going out in March, expands a Biden administration strategy to move Medicaid beyond traditional medical care and into the realm of social services.

At least 20 states, including California, Massachusetts, and Washington, already direct billions of Medicaid dollars into programs such as helping homeless people get housing and preparing healthy meals for people with diabetes, according to KFF. Oregon is the first to use Medicaid money explicitly for climate-related costs, part of its five-year, $1.1 billion effort to address social needs, which also includes housing and nutrition benefits.

State and federal health officials hope to show that taxpayer money and lives can be saved when investments are made before disaster strikes.

“Climate change is a health care issue,” so helping Oregon’s poorest and sickest residents prepare for potentially dangerous heat, drought, and other extreme weather makes sense, said Health and Human Services Secretary Xavier Becerra on a visit to Sacramento, California, in early April.

Becerra said the Biden administration wants states to experiment with how best to improve patient health, whether by keeping someone housed instead of homeless, or reducing their exposure to heat with an air conditioner.

But Medicaid’s expansion into social services may duplicate existing housing and nutrition programs offered by other federal agencies, while some needy Americans can’t get essential medical care, said Gary Alexander, director of the Medicaid and Health Safety Net Reform Initiative at the Paragon Health Institute.

“There are 600,000 or 700,000 intellectually disabled people in the United States waiting for Medicaid services. They’re on a waitlist,” said Alexander, who oversaw state health agencies in Pennsylvania and Rhode Island. “Meanwhile Medicaid has money for housing and food and air conditioners for recipients. Seems to me that we should serve the intellectually disabled first before we get into all of these new areas.”

Scientists and public health officials say climate change poses a growing health risk. More frequent and intense floods, droughts, wildfires, extreme temperatures, and storms cause more deaths, cardiovascular disease from poor air quality, and other problems, according to the federal government’s Fifth National Climate Assessment.

The mounting health effects disproportionately hit low-income Americans and people of color, who are often covered by Medicaid, the state-federal health insurance program for low-income people.

Most of the 102 Oregonians who died during the deadly heat dome that settled over the Pacific Northwest in 2021 “were elderly, isolated and living with low incomes,” according to a report by the Oregon Health Authority, which administers the state’s Medicaid program, with about 1.4 million enrollees. The OHA’s analysis of urgent care and emergency room use from May through September of 2021 and 2022 found that 60% of heat-related illness visits were from residents of areas with a median household income below $50,000.

“In the last 10-plus years, the amount of fires and smoke events and excessive heat events that we’ve had has shown the disproportionate impact of those events on those with lower incomes,” said Dave Baden, the OHA’s deputy director for programs and policy.

And, because dangerously high temperatures aren’t common in Oregon, many residents don’t have air conditioning in their homes.

Traditionally, states hit by natural disasters and public health emergencies have asked the federal government for permission to spend Medicaid dollars on back-up power, air filters, and other equipment to help victims recover. But those requests came after the fact, following federal emergency declarations.

Oregon wants to be proactive and pay for equipment that will help an estimated 200,000 residents manage their health at home before extreme weather or climate-related disaster hits, Baden said. In addition to air conditioning units, the program will pay for mini fridges to keep medications cold, portable power supplies to run ventilators and other medical devices during outages, space heaters for winter, and air filters to improve air quality during wildfire season.

In March, the Oregon Health Plan, the state’s Medicaid program, began asking health insurers to find patients who might need help coping with extreme weather. Recipients must meet federal guidelines that categorize them as “facing certain life transitions,” a stringent set of requirements that disqualify most enrollees. For example, a person with an underlying medical condition that could worsen during a heat wave, and who is also at risk for homelessness or has been released from prison in the past year, could receive an air conditioner. But someone with stable housing might not qualify.

“You could be in a housing complex, and your neighbor qualified for an air conditioner and you didn’t,” Baden said.

At the offices of insurer AllCare Health in Grants Pass, Oregon, air conditioners, air filters, and mini fridges were piled in three rooms in mid-April, ready to be handed over to Medicaid patients. The health plan provided equipment to 19 households in March. The idea is to get the supplies into people’s homes before the summer fire season engulfs the valley in smoke.

Health plans don’t want to find themselves “fighting the masses” at Home Depot when the skies are already smoky or the heat is unbearable, said Josh Balloch, AllCare’s vice president of health policy.

“We’re competing against everybody else, and you can’t find a fan on a hot day,” he said.

Oregon and some other states have already used Medicaid money to buy air conditioners, air purifiers, and other goods for enrollees, but not under the category of climate change. For example, California offers air purifiers to help asthma patients and New York just won federal approval to provide air conditioners to asthma patients.

Baden said Oregon health officials will evaluate whether sending air conditioners and other equipment to patients saves money by looking at their claim records in the coming years.

If Oregon can help enrollees avoid a costly trip to the doctor or the ER after extreme weather, other state Medicaid programs may ask the federal government if they can adopt the benefit. Many states haven’t yet used Medicaid money for climate change because it affects people and regions differently, said Paul Shattuck, a senior fellow at Mathematica, a research organization that has surveyed state Medicaid directors on the issue.

“The health risks of climate change are everywhere, but the nature of risk exposure is completely different in every state,” Shattuck said. “It’s been challenging for Medicaid to get momentum because each state is left to their own devices to figure out what to do.”

A California state lawmaker last year introduced legislation that would have required Medi-Cal, the state’s Medicaid program, to add a climate benefit under its existing social services expansion. The program would have been similar to Oregon’s, but AB 586, by Assembly member Lisa Calderon, died in the Assembly Appropriations Committee, which questioned in a staff analysis whether “climate change remediation supports can be defined as cost-effective.”

The cost savings are clear to Kaiser Permanente. After the 2021 heat wave, it sent air conditioners to 81 patients in Oregon and southwest Washington whose health conditions might get worse in extreme heat, said Catherine Potter, community health consultant at the health system. The following year, Kaiser Permanente estimated it had prevented $42,000 in heat-related ER visits and $400,000 in hospital admissions, she said.

“We didn’t used to have extreme heat like this, and we do now,” said Potter, who has lived in the temperate Portland area for 30 years. “If we can prevent these adverse impacts, we should be preventing them especially for people that are going to be most affected.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

Cass Smith-Collins jumped through hoops to get the surgery that would match his chest to his gender.

Living in Las Vegas and then 50, he finally felt safe enough to come out as a transgender man. He had his wife’s support and a doctor’s letter showing he had a long history of gender dysphoria, the psychological distress felt when one’s sex assigned at birth and gender identity don’t match.

Although in-network providers were available, Smith-Collins selected Florida-based surgeon Charles Garramone, who markets himself as an early developer of female-to-male top surgery and says that he does not contract with insurance. Smith-Collins said he was willing to pay more to go out-of-network.

“I had one shot to get the chest that I should have been born with, and I wasn’t going to chance it to someone who was not an expert at his craft,” he said.

Smith-Collins arranged to spend a week in Florida and contacted friends there who could help him recover from the outpatient procedure, he said.

Garramone’s practice required that the patient agree to its financial policies, according to documents shared by Smith-Collins. One document stated that “full payment” of Garramone’s surgical fees is required four weeks in advance of surgery and that all payments to the practice are “non-refundable.”

Smith-Collins said he and his wife dipped into their retirement savings to cover the approximately $14,000 upfront. With prior authorization from his insurer in hand saying the procedure would be “covered,” he thought his insurance would reimburse anything he paid beyond his out-of-pocket maximum for out-of-network care: $6,900.

The day before surgery, Smith-Collins signed another agreement from the surgeon’s practice, outlining how it would file an out-of-network claim with his insurance. Any insurance payment would be received by the doctor, it said.

The procedure went well. Smith-Collins went home happy and relieved.

Then the bill came. Or in this case: The reimbursement didn’t.

The Patient: Cass Smith-Collins, now 52, who has employer-based coverage through UnitedHealthcare.

Medical Services: Double-incision top surgery with nipple grafts, plus lab work.

Service Provider: Aesthetic Plastic Surgery Institute, doing business as The Garramone Center, which is owned by Garramone, according to Florida public records.

Total Bill: The surgeon’s practice billed the patient and insurance a total of $120,987 for his work. It charged the patient about $14,000 upfront — which included $300 for lab work and a $1,000 reservation fee — and then billed the patient’s insurer an additional $106,687.

The surgeon later wrote the patient that the upfront fee was for the “cosmetic” portion of the surgery, while the insurance charge was for the “reconstructive” part. Initially, the insurer paid $2,193.54 toward the surgeon’s claim, and the patient received no reimbursement.

After KFF Health News began reporting this story, the insurer reprocessed the surgeon’s claim and increased its payment to the practice to $97,738.46. Smith-Collins then received a reimbursement from Garramone of $7,245.

What Gives: Many patients write to Bill of the Month each year with their own tangled billing question. In many cases — including this one — the short answer is that the patient misunderstood their insurance coverage.

Smith-Collins was in a confusing situation. UnitedHealthcare said his out-of-network surgery would be “covered,” then it later told Smith-Collins it didn’t owe the reimbursement he had counted on. Then, after KFF Health News began reporting, he received a reimbursement.

Adding to the confusion were the practice’s financial polices, which set a pre-surgery payment deadline, gave the doctor control of any insurance payment, and left the patient vulnerable to more bills (though, fortunately, he received none).

Agreeing to an out-of-network provider’s own financial policy — which generally protects its ability to get paid and may be littered with confusing insurance and legal jargon — can create a binding contract that leaves a patient owing. In short, it can put the doctor in the driver’s seat, steering the money.

The agreement Smith-Collins signed the day before surgery says that the patient understands he is receiving out-of-network care and “may be responsible for additional costs for all services provided” by the out-of-network practice.

Federal billing protections shield patients from big, out-of-network bills — but not in cases in which the patient knowingly chose out-of-network care. Smith-Collins could have been on the hook for the difference between what his out-of-network doctor and insurer said the procedure should cost: nearly $102,000.

Emails show Smith-Collins had a couple of weeks to review a version of the practice’s out-of-network agreement before he signed it. But he said he likely hadn’t read the entire document because he was focused on his surgery and willing to agree to just about anything to get it.

“Surgery is an emotional experience for anyone, and that’s not an ideal time for anyone to sign a complex legal agreement,” said Marianne Udow-Phillips, a health policy instructor at the University of Michigan School of Public Health.

Udow-Phillips, who reviewed the agreement, said it includes complicated terms that could confuse consumers.

Another provision in the agreement says the surgeon’s upfront charges are “a separate fee that is not related to charges made to your insurance.”

Months after his procedure, having received no reimbursement, Smith-Collins contacted his surgeon, he said. Garramone replied to him in an email, explaining that UnitedHealthcare had paid for the “reconstructive aspect of the surgery” — while the thousands of dollars Smith-Collins paid upfront was for the “cosmetic portion.”

Filing an insurance claim had initially led to a payment for Garramone, but no refund for Smith-Collins.

Garramone did not respond to questions from KFF Health News for this article or to repeated requests for an interview.

Smith-Collins had miscalculated how much his insurance would pay for an out-of-network surgeon.

Documents show that before the procedure Smith-Collins received a receipt from Garramone’s practice marked “final payment” with a zero balance due, as well as prior authorization from UnitedHealthcare stating that the surgery performed by Garramone would be “covered.”

But out-of-network providers aren’t limited in what they can charge, and insurers don’t have a minimum they must pay.

An explanation of benefits, or EOB, statement shows Garramone submitted a claim to UnitedHealthcare for more than $106,000. Of that, UnitedHealthcare determined the maximum it would pay — known as the “allowed amount” — was about $4,400. A UnitedHealthcare representative later told Smith-Collins in an email that the total was based on what Medicare would have paid for the procedure.

Smith-Collins’ upfront charges of roughly $14,000 went well beyond the price the insurer deemed fair, and UnitedHealthcare wasn’t going to pay the difference. By UnitedHealthcare’s math, Smith-Collins’ share of its allowed amount was about $2,200, which is what counted toward his out-of-pocket costs. That meant, in the insurer’s eyes, Smith-Collins still hadn’t reached his $6,900 maximum for the year, so no refund.

Neither UnitedHealthcare nor the surgeon provided KFF Health News with billing codes, making it difficult to compare the surgeon’s charges to cost estimates for the procedure.

Garramone’s website says his fee varies depending on the size and difficulty of the procedure. The site says his prices reflect his experience and adds that “cheaper” may lead to “very poor results.”

Though he spent more than he expected, Smith-Collins said he’ll never regret the procedure. He said he had lived with thoughts of suicide since youth, having realized at a young age that his body didn’t match his identity and feared others would target him for being trans.

“It was a lifesaving thing,” he said. “I jumped through whatever hoops they wanted me to go through so I could get that surgery, so that I could finally be who I was.”

The Resolution: Smith-Collins submitted two appeals with his insurer, asking UnitedHealthcare to reimburse him for what he spent beyond his out-of-pocket maximum. The insurer denied both appeals, finding its payments were correct based on the terms of his plan, and said his case was not eligible for a third, outside review.

But after being contacted by KFF Health News, UnitedHealthcare reprocessed Garramone’s roughly $106,000 claim and increased its payment to the practice to $97,738.46.

Maria Gordon Shydlo, a UnitedHealthcare spokesperson, told KFF Health News the company’s initial determination was correct, but that it had reprocessed the claim so that Smith-Collins is “only” responsible for his patient share: $6,755.

“We are disappointed that this non-contracted provider elected to charge the member so much,” she said.

After that new payment, Garramone gave Smith-Collins a $7,245 refund in mid-April.

The Takeaway: Udow-Phillips, who worked in health insurance for decades and led provider services for Blue Cross Blue Shield of Michigan, said she had never seen a provider agreement like the one Smith-Collins signed.

Patients should consult a lawyer before signing any out-of-network agreements, she said, and they should make sure they understand prior authorization letters from insurers.

The prior authorization Smith-Collins received “doesn’t say covered in full, and it doesn’t say covered at what rate,” Udow-Phillips said, adding later, “I am sure [Smith-Collins] thought the prior authorization was for the cost of the procedure.”

Patients can seek in-network care to feel more secure about what insurance will cover and what their doctors might charge.

But for those who have a specific out-of-network doctor in mind, there are ways to try to avoid sticker shock, said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University:

• Patients should always ask insurers to define what “covered” means, specifically whether that means payment in full and for what expenses. And before making an upfront payment, patients should ask their insurer how much of that total it would reimburse.
• Patients also can ask their provider to agree in advance to accept any insurance reimbursement as payment in full, though there’s no requirement that they do so.
• And patients can try asking their insurer to provide an exact dollar estimate for their out-of-pocket costs and ask if they are refundable should insurance pick up the tab.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!