‘A Bottomless Pit’: How Out-of-Pocket TMJ Costs Drive Patients Into Debt

Over three decades of relentless pain, Jonna Tallant has tried about every TMJ treatment: mouthguards, six sets of braces, dental crowns and appliances, drugs, physical therapy, Botox, massage, acupuncture, chiropractic care, and surgery.

Nothing has helped. Tallant, 51, of Knoxville, Tennessee, said she lives in agony and cannot eat any food that must be chewed. Despite spending a small fortune on treatment, she can barely open her mouth enough to squeeze in a toothbrush.

Tallant estimates she has paid at least $200,000 for TMJ care. She provided medical records showing more than $60,000 in out-of-pocket spending in just the past decade. She has exhausted her savings and borrowed money, she said, and her family sold a plot of land to help pay the bills.

Tallant will need another jaw surgery later this year, which could cost as much as $75,000. Her insurance is unlikely to pay for any of it, she said.

“It’s a bottomless pit,” Tallant said, choking up, as she leafed through a pile of medical records splayed on her dining table. “It has consumed so much of my life that there is not much left.”

Temporomandibular joint disorders, known as TMJ or TMD, cause pain and stiffness in the face and jaw and are believed to afflict as many as 33 million Americans. Scientific studies have found that women experience TMJ disorders two to nine times as often as men, and while minor symptoms may not require treatment, severe symptoms can include disabling pain that makes it challenging to eat, work, talk, or sleep.

Despite the commonness of TMJ disorders, treatments are often not covered by medical or dental insurance, leaving patients with out-of-pocket bills that can range from a few hundred dollars to tens of thousands of dollars. Many medical insurers consider TMJ treatment too dental-focused for medical insurance, while dental insurers consider it too medical for dental insurance, leaving patients stuck in a “medical-dental divide” that hinders care and increases cost, according to the National Academies of Science, Engineering, and Medicine.

Worse still, researchers warn that the meager insurance coverage available for TMJ often excludes the safest forms of care while steering patients toward surgery — a riskier and irreversible option that the National Institutes of Health recommends “staying away” from.

Terrie Cowley, a longtime TMJ patient who leads the TMJ Association, an advocacy group, has spoken with patients who refinanced their homes and cashed out retirement accounts to afford the out-of-pocket costs for their care.

“It bankrupts them,” Cowley said. “But it isn’t nearly as horrible as when the treatments go wrong.”

Insurance woes are just one facet of the problems with TMJ care in the United States. In April, a joint investigation by KFF Health News and CBS News found that TMJ disorders have been widely misunderstood by many dentists for decades, so some patients fall into a spiral of ineffective care and futile surgeries that do more harm than good. Dentistry has tried to correct course in recent years with the promising new specialty of orofacial pain, which treats TMJ disorders with a more conservative approach, but these specialists are few and rarely covered by insurance, so their services remain beyond the reach of many patients.

Tony Schwartz, president of the American Board of Orofacial Pain, said the specialty is still fighting for widespread acceptance from insurance companies and some dentists, who cling to “old, debunked theories” that TMJ disorders are caused by misaligned teeth or a bad bite.

“This is the basis for why insurance companies have been so reluctant to, over the years, pay for any treatment,” Schwartz said. “Because there has been so much controversy about what works and what doesn’t work.”

For this article, KFF Health News and CBS News interviewed 10 patients with severe TMJ disorders who have been in treatment for years, if not decades. Almost all the patients described spending thousands of dollars out-of-pocket at every stage of their care, usually because treatment fell outside their medical and dental insurance coverage. Some patients said their medical bills mounted just as debilitating pain forced them to leave jobs or abandon careers. Some underwent expensive TMJ surgeries offered by only a small group of surgeons who generally do not accept insurance.

Kyra Wiedenkeller, 45, of New York state, said she worked as a manager in the music industry, including on “American Idol,” before her “unrelenting pain” became too great.

Kyra Wiedenkeller, of New York, with her dog, Frankie. She has spent at least $100,000 out-of-pocket on TMJ treatment, but says she remains in “unrelenting pain.”(Anna Werner/CBS News)

Wiedenkeller, who is now on disability, said she’s spent at least $100,000 out-of-pocket on TMJ treatment and provided medical documents showing she had been billed for at least that much.

“Every doctor I’ve seen has made me progressively worse,” Wiedenkeller said. “I paid an exorbitant amount of money. I wiped out my 401(k) for these treatments in hopes of getting better time and time again. And just get worse and worse. I feel like there is no end.”

Wiedenkeller’s story echoes findings of the national academies, which conducted a comprehensive study of TMJ in 2020 that included input from more than 110 patients. The study found that TMJ patients are “often harmed” during “overly aggressive” treatment, which frequently falls into a chasm between medical and dental insurance, leaving most bills paid out-of-pocket at costs of up to tens of thousands of dollars.

As an example, the study describes how dental splints — a common TMJ treatment — have been considered to be medical care by some dental insurers and considered dental care by some medical insurance programs, and are “therefore not covered” by either.

And when TMJ is covered by insurance, it tends to exclude “low-risk, effective treatments,” like those used by orofacial pain specialists, but covers “higher-risk” options, like jaw surgery, according to the national academies study. This leads to patients receiving “the care that is best reimbursed, rather than the care that is best,” the study said.

Other researchers have come to the same conclusion.

James Fricton, an orofacial pain specialist who studies the lack of insurance coverage for TMJ care, said that even though surgery is appropriate for few patients, it is the only treatment covered by most insurance plans in most states.

“Patients will assume that insurance companies know what they’re doing,” Fricton said. “If that’s all that’s covered, what do you think they are going to get? Surgery.”

In contrast, insurance coverage appears to be weakest at the other end of the treatment spectrum.

“Orofacial pain,” officially recognized by the American Dental Association in 2020, is now taught in residency programs at a dozen U.S. colleges at least, including the universities of Michigan, Minnesota, and North Carolina. The specialty avoids making irreversible changes to the bite or jaw and instead treats TMJ disorders with tools like counseling, dietary changes, medication, physical therapy, and removable dental splints. Many TMJ patients can be treated by orofacial pain specialists for a few thousand dollars.

The national academies study describes this approach as one of the few promising options for TMJ patients, citing studies that showed improvement among patients who are taught how to manage their pain. But the national academies also said it is a “particular challenge” that this treatment is “often not considered reimbursable by insurance.”

In separate interviews, six orofacial pain specialists with clinics around the country said insurance coverage for this specialty care is patchy, poor, or nonexistent. Several said their specialty is often absent from dropdown menus on standard insurance forms. Most said the insurance industry had fallen behind on the evolving science of TMJ, missing a chance to help patients and cut costs.

“It’s a no-brainer,” said Jeffrey Okeson, dean of the University of Kentucky’s College of Dentistry. “If I was an insurance person, I’d want to supply $1,000 to a patient to do conservative treatment … instead of $15,000 or $30,000 for surgery. Think of the money that can be saved there.”

Okeson and the other orofacial pain specialists said unreliable insurance coverage has hamstrung the specialty by making it less attractive to the next generation of dentists.

Currently there are fewer than 300 certified orofacial pain specialists in the United States, according to a database maintained by the American Board of Orofacial Pain. At least 20 states have no certified specialists, and eight other states have only one or two.

Deepika Jaiswal, the only certified specialist in Iowa, said some patients with TMJ disorders drive across the state to see her.

However, most of her patients — and many of her fellow dentists — remain unaware of the orofacial pain specialty, Jaiswal said, so insurance companies likely feel little pressure to include it in their coverage.

“People don’t even know around the area that we exist,” Jaiswal said. “When there are more providers providing this service, I think at that point there will be more insurance.”

CBS News producer Nicole Keller contributed to this article.

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If Lawsuit Ends Federal Mandates on Birth Control Coverage, States Will Have the Say

David Engler had been pretty sure he didn’t want children. Then a frustrating school day two years ago helped seal the deal for the now 43-year-old substitute teacher.

“It was wild. I had to call the office seven times to get kids pulled out,” he said. “The next day, I called Kaiser and said, ‘I’d like to know how much a vasectomy is.’”

A representative with Engler’s insurer, Kaiser Permanente, told him the procedure would be free because it was a form of birth control, he said. But after undergoing the vasectomy last winter, he received a bill for $1,080.

“I felt defeated, tricked, and frustrated,” said Engler, who lives in Portland, Oregon.

Engler’s experience highlights how a labyrinthine patchwork of insurance coverage rules on reproductive health care creates confusion for patients. Oregon requires that vasectomies be covered for most people who work in the public sector. But the federal Affordable Care Act — which mandates that most health plans cover preventive health services, such as contraception, at no cost to the consumer — does not require vasectomies to be covered.

And that perplexity surrounding coverage may get more complicated.

An ongoing federal lawsuit aims to strike down the ACA’s preventive care coverage requirements for private insurers. If the case knocks out the mandates, state-level laws — which vary widely across the country — would carry more weight, a change that would resume the “wild West” dynamic from before Obamacare, said Zachary Baron, a health policy researcher at Georgetown Law.

It would create an environment “in which insurers and employers pick and choose which services they want to cover or which services they want to charge for,” Baron said. “It would certainly threaten access to care for millions of Americans.”

Studies have shown the requirements to cover preventive care have reduced consumers’ out-of-pocket costs and increased their use of short- and long-term birth control methods.

More men are opting for vasectomies since the Supreme Court overturned federal abortion protections. While the federal Affordable Care Act doesn’t require that insurers cover vasectomies, some state laws do.(Kristina Barker for KFF Health News)

The job of defining which contraceptive services should be covered falls to the Health Resources and Services Administration, or HRSA. Two other groups — the U.S. Preventive Services Task Force, or USPSTF, and the Advisory Committee on Immunization Practices, or ACIP — make recommendations on other kinds of care that the ACA requires insurers to cover.

The plaintiffs in the lawsuit, a group of individuals and Christian-owned businesses, argue the members of these three panels haven’t been properly appointed by Congress. They also say the recommendations for insurance plans to cover medication for HIV prevention violate their religious rights.

On June 21, the U.S. Court of Appeals for the 5th Circuit issued what it called a “mixed bag” opinion in the case. It said one group — the USPSTF — had not been properly appointed, and therefore its recommendations made after the ACA was signed into law were unconstitutional. The plaintiffs had asked for a nationwide ruling, but the court said only the plaintiffs’ organizations could be exempted from its recommendations.

The court then sent the plaintiffs’ challenges to the recommendations made by HRSA and ACIP — including those on contraception — back to a lower court to consider.

The case is likely headed to Reed O’Connor, a federal judge in Texas who has issued decisions undermining the ACA — including a ruling striking down the entire law that the U.S. Supreme Court later overturned.

“O’Connor is a judge notoriously hostile to the Affordable Care Act,” said Gretchen Borchelt, vice president of reproductive rights and health at the National Women’s Law Center. “He is someone who is willing to impose remedies where he takes access to care away from everybody in the country based on what’s happening in one situation.”

A win for the plaintiffs, she worried, could create confusion about what kind of contraception is covered and how much it costs, which would ultimately lead to more unintended pregnancies — all at a time when women have less access to abortions.

Nearly two dozen organizations — including the American Medical Association, the American Public Health Association, and the Blue Cross Blue Shield Association — have joined Borchelt’s group in filing briefs warning about the potential disruptions a ruling for the plaintiffs could cause.

Jay Carson, an attorney with the Buckeye Institute, a conservative think tank, said he’s happy with the court’s ruling. His group, along with the state of Texas, filed briefs in support of the plaintiffs.

“Unelected bureaucrats” shouldn’t have the power to decide what insurance plans should be required to cover, said Carson. “We’ve gotten so far afield of Congress actually making the laws and, instead, relying on Congress to just empower some agency to do the heavy lifting.”

What power agencies do have is likely to be curtailed in the wake of a June 28 U.S. Supreme Court decision that overturned a decades-old precedent dictating that courts should defer to federal agencies when it comes to regulatory or scientific decisions.

“Courts are going to be more able to scrutinize experts,” said Richard Hughes, a health care regulatory attorney with the firm Epstein, Becker, and Green. “It’s a vibe shift — we’re moving in the direction of the administrative state being curtailed.”

Eliminating federal coverage requirements for contraception would leave it up to states to determine what services health insurance plans would be required to provide.

Fourteen states and Washington, D.C., currently protect the right to contraception. But states can go only so far with those rules, said Baron, because a federal statute prevents them from regulating self-funded health plans, which cover about 65% of workers.

“It would leave significant gaps in coverage,” Baron said.

A group of Democratic-led states made such an argument in a court brief last year, arguing for the mandates to be upheld to discourage self-funded plans from declining to offer preventive services, as they often did before the ACA.

Even when states can regulate what health plans cover, people still fall through the cracks. “I see denials all the time in instances where the treatment clearly is covered,” said Megan Glor, a health insurance attorney in Oregon.

Patients can appeal their insurers’ decisions, but that’s not easy. And if a patient’s appeals fail, litigation is generally the only option — but that’s a long, complicated, costly process, Glor said. Likely, the best outcome for a patient is an insurer covering what should have been covered in the first place.

A photo of David Engler sitting on a sofa next to a dog.
Oregon law mandates that public sector employees have access to vasectomies at no cost, a provision that goes beyond the federal Affordable Care Act. But Engler, a substitute teacher in Portland, was billed $1,080 by his health plan provider after the procedure.(Kristina Barker for KFF Health News)

When Engler called Kaiser Permanente about his vasectomy charge, he said a representative told him the bill was sent by mistake. Still, he said, the insurer kept asking for money. Engler filed and lost multiple appeals and eventually settled the charge for $540.

Engler’s vasectomy likely should have been free, Glor said. As a teacher, Engler is a public sector employee, which means his insurance would be subject to an Oregon law that mandates no-cost coverage for vasectomies.

Kaiser Permanente told KFF Health News that state law does not apply because of a federal rule for high-deductible health plans paired with health savings accounts. That rule requires patients to cover out-of-pocket costs until their deductible is met.

However, after KFF Health News contacted Kaiser Permanente about Engler’s situation, he said the company promised to issue a full refund for the $540 he had paid to settle his case.

“Although we administered the benefit correctly, an employee who spoke with Mr. Engler told him incorrectly that he would not have” to share the cost, said Debbie Karman, a Kaiser Permanente spokesperson.

Engler said he’s happy with the outcome, though he’s still unsure how Kaiser Permanente’s staff was confused about his insurance coverage.

He worries that others don’t have the means he had to advocate for himself.

“It’s scary,” he said. “So many people are limited in their resources or their understanding of how to fight — or even who to fight.”

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Lack of Affordability Tops Older Americans’ List of Health Care Worries

What weighs most heavily on older adults’ minds when it comes to health care?

The cost of services and therapies, and their ability to pay.

“It’s on our minds a whole lot because of our age and because everything keeps getting more expensive,” said Connie Colyer, 68, of Pleasureville, Kentucky. She’s a retired forklift operator who has lung disease and high blood pressure. Her husband, James, 70, drives a dump truck and has a potentially dangerous irregular heart rhythm.

Tens of millions of seniors are similarly anxious about being able to afford health care because of its expense and rising costs for housing, food, and other essentials.

A new wave of research highlights the reach of these anxieties. When the University of Michigan’s National Poll on Healthy Aging asked people 50 and older about 26 health-related issues, their top three areas of concern had to do with costs: of medical care in general, of long-term care, and of prescription drugs. More than half of 3,300 people surveyed in February and March reported being “very concerned” about these issues.

In fact, five of the top 10 issues identified as very concerning were cost-related. Beyond the top three, people cited the cost of health insurance and Medicare (52%), and the cost of dental care (45%). Financial scams and fraud came in fourth place (53% very concerned). Of much less concern were issues that receive considerable attention, including social isolation, obesity, and age discrimination.

In an election year, “our poll sends a very clear message that older adults are worried about the cost of health care and will be looking to candidates to discuss what they have done or plan to do to contain those costs,” said John Ayanian, director of the University of Michigan’s Institute for Healthcare Policy and Innovation.

Older adults have good reason to worry. One in 10 seniors (about 6 million people) have incomes below the federal poverty level. About 1 in 4 rely exclusively on Social Security payments, which average $1,913 a month per person.

Even though inflation has moderated since its 2022 peak, prices haven’t come down, putting a strain on seniors living on fixed incomes.

Meanwhile, traditional Medicare doesn’t cover several services that millions of older adults need, such as dental care, vision care, or help at home from aides. While private Medicare Advantage plans offer some coverage for these services, benefits are frequently limited.

All of this contributes to a health care affordability squeeze for older adults. Recently published research from the Commonwealth Fund’s 2023 Health Care Affordability Survey found that nearly a third of people 65 or older reported difficulty paying for health care expenses, including premiums for Medicare, medications, and expenses associated with receiving medical services.

One in 7 older adults reported spending a quarter or more of their average monthly budget on health care; 44% spent between 10% and 24%. Seventeen percent said they or a family member had forgone needed care in the past year for financial reasons.

The Colyers in Pleasureville are among them. Both need new dentures and eyeglasses, but they can’t afford to pay thousands of dollars out-of-pocket, Connie said.

“As the cost of living rises for basic necessities, it’s more difficult for lower-income and middle-income Medicare beneficiaries to afford the health care they need,” said Gretchen Jacobson, vice president of the Medicare program at the Commonwealth Fund. Similarly, “when health care costs rise, it’s more difficult to afford basic necessities.”

This is especially worrisome because older adults are more prone to illness and disability than younger adults, resulting in a greater need for care and higher expenses. In 2022, seniors on Medicare spent $7,000 on medical services, compared with $4,900 for people without Medicare.

Not included in this figure is the cost of assisted living or long-term stays in nursing homes, which Medicare also doesn’t cover. According to Genworth’s latest survey, the median annual cost of a semiprivate room in a nursing home was $104,000 in 2023, while assisted living came to $64,200, and a week’s worth of services from home-health aides averaged $75,500.

Many older adults simply can’t afford to pay for these long-term care options or other major medical expenses out-of-pocket.

“Seventeen million older adults have incomes below 200% of the federal poverty level,” said Tricia Neuman, executive director of the Program on Medicare Policy for KFF. (That’s $30,120 for a single-person household in 2024; $40,880 for a two-person household.) “For people living on that income, the risk of a major expense is very scary.”

How to deal with unanticipated expenses in the future is a question that haunts Connie Colyer. Her monthly premiums for Medicare Parts B and D, and a Medigap supplemental policy come to nearly $468, or 42% of her $1,121 monthly income from Social Security.

With a home mortgage of $523 a month, and more than $150 in monthly copayments for her inhalers and her husband’s heart medications, “we wouldn’t make it if my husband wasn’t still working,” she told me. (James’ monthly Social Security payment is $1,378. His premiums are similar to Connie’s and his income fluctuates based on the weather. In the first five months of this year, it approached $10,000, Connie told me.)

The couple makes too much to qualify for programs that help older adults afford Medicare out-of-pocket costs. As many as 6 million people are eligible but not enrolled in these Medicare Savings Programs. Those with very low incomes may also qualify for dual coverage by Medicaid and Medicare or other types of assistance with household costs, such as food stamps.

Older adults can check their eligibility for these and other programs by contacting their local Area Agency on Agency, State Health Insurance Assistance Program, or benefits enrollment center. Enter your ZIP code at the Eldercare Locator and these and other organizations helping seniors locally will come up.

Persuading older adults to step forward and ask for help often isn’t easy. Angela Zeek, health and government benefits manager at Legal Aid of the Bluegrass in Kentucky, said many seniors in her area don’t want to be considered poor or unable to pay their bills, a blow to their pride. “What we try to say is, ‘You’ve worked hard all your life, you’ve paid your taxes. You’ve given back to this government so there’s nothing wrong with the government helping you out a bit.’”

And the unfortunate truth is there’s very little, if any, help available for seniors who aren’t poor but have modest financial resources. While the need for new dental, vision, and long-term care benefits for older adults is widely acknowledged, “the question is always how to pay for it,” said Neuman of KFF.

This will become an even bigger issue in the coming years because of the burgeoning aging population.

There is some relief on the horizon, however: Assistance with Medicare drug costs is available through the 2022 Inflation Reduction Act, although many older adults don’t realize it yet. The act allows Medicare to negotiate the price of prescription drugs for the first time. This year, out-of-pocket costs for medications will be limited to a maximum $3,800 for most beneficiaries. Next year, a $2,000 cap on out-of-pocket drug costs will take effect.

“We’re already seeing people who’ve had very high drug costs in the past save thousands of dollars this year,” said Frederic Riccardi, president of the Medicare Rights Center. “And next year, it’s going to get even better.”

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Meet the Middleman’s Middleman – KFF Health News

Some people who expected their health insurance to cover some out-of-network care have been getting stuck with enormous bills.

One Kansas City, Kansas, couple paid thousands of dollars out-of-pocket and up-front for care. They expected to get a partial reimbursement from their insurer. So, they were shocked when instead they got a bill saying they owed even more than what they’d already paid.

It turns out, a little-known data firm called MultiPlan was working with their insurance company to suggest cuts to their coverage. MulitPlan says it’s helping control ballooning health care costs by keeping hospitals and providers from overbilling. But it’s often patients left paying the difference.In this episode of “An Arm and a Leg,” host Dan Weissmann breaks down this confusing world of out-of-network care with New York Times reporter Chris Hamby, who recently published an investigation into MultiPlan.

Dan Weissmann


@danweissmann

Host and producer of “An Arm and a Leg.” Previously, Dan was a staff reporter for Marketplace and Chicago’s WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.

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Transcript: Meet the Middleman’s Middleman

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there! Paul and Kristin live in Kansas City with their two kids. Kristin and their daughter, the older kid– they have some complex medical issues, need to see some specialized folks. And some of those folks don’t take Kristin and Paul’s insurance. They’re “out of network,” so Kristin and Paul pay out of pocket– a lot. Maybe $20,000 a year. BUT their health insurance plan does reimburse some out-of-network care. 

o, in January 2023, Kristin called a help line connected with the insurance plan to find out how that was gonna work. 

Kristin H: They basically said, sure, easy peasy, you pay and then you get online and you click this form, you show what you paid, and then we send you a check and reimburse you. 

Dan: Kristin was on it. She built a whole spreadsheet to track every bill she paid, every reimbursement form she’d submitted. And she waited for the checks. The insurance company gave itself months just to process the claims. And when they finally sent statements, the statements seemed … weird. They were like: 

Kristin H: Here’s what you paid, and here’s your discounts, and here’s what you may owe. 

Dan: And Kristin was like … what? 

Kristin H: Because I was thinking, well, I don’t owe anything. We paid out of pocket, but then I was thinking, well, this must be the portion that they’re paying us back. But then the math didn’t add up. 

Dan: Yeah. Not at all. Kristin was expecting to get 50 percent back, like her plan said she would. But this amount wasn’t anything like 50 percent. And what’s this “discount” business? 

It took months– and a lot of digging from Paul, and ultimately a talk with a NewYork Times reporter– before Kristin and Paul understood what was going on, and why it was costing them thousands of dollars. 

What they didn’t know until that New York Times story came out was: Someone was making a multi-billion dollar business out of experiences like theirs. As that story made clear, LOTS of people who expected their insurance to cover them for expensive out-of-network care ended up on the hook for a lot more than they’d expected. 

That story introduced readers to a character who’s become kind of a TYPE on this show. Not a type of person, but a type of business: A middleman that works behind the scenes with insurance companies. So we’ve seen that dynamic with pharmacy benefit managers– the folks who decide what drugs you can get and for how much– and more recently, we looked at a company that uses an algorithm to justify kicking folks out of nursing homes. The middleman in this New York Times story was a company called MultiPlan. 

Reporter Chris Hamby found MultiPlan and insurance companies they worked with were leaving patients on the hook for huge amounts that they absolutely had not expected to pay. MultiPlan was also, along with those insurance companies, pocketing big fees. That story got some folks’ attention. A U.S. Senator has called for action from antitrust regulators. Those regulators might get interested. And we may wanna egg them on– so we’re gonna need to understand the whole scheme. Whothis middleman is– MultiPlan– and how they got themselves in the middle of 60 million people’s health insurance, by their own estimate … and how they make a lot of money. 

This is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So, our job on this show is to take one of the most enraging, terrifying, depressing parts of American life– and bring you a show that’s entertaining, empowering, and useful. 

And this time, I’ve got help. 

Chris Hamby: My name is Chris Hamby. I’m a reporter on the investigations desk at the New York Times. 

Dan: Yeah, and of course, Chris is the one who spent months figuring out the story of this middleman company, MultiPlan. 

Chris Hamby: I was poking around a number of areas related to health insurance, and this name just kept coming up. 

Dan: Like in lawsuits. 

Chris Hamby: And it wasn’t always terribly clear what they did exactly or how they were compensated. 

Dan: Or how doctors and patients– regular people– were affected. 

Chris Hamby: So that’s why I decided to try and figure this out, and it’s sort of an opaque space as so many areas of health care are these days. 

Dan: Yeah. In fact, in order to understand this story at all– to understand who’s doing WELL in this scenario– we’ve gotta peel back a layer. It’s something we’ve talked about here before, but not for a while, and you know, not even my mom remembers everything I’ve ever said here. 

This is about the mechanics of how most health insurance people get from their job actually works: about who actually pays medical bills when your insurance settles a claim. It’s not the insurance company. It’s actually the employer paying those bills. 

Of course, employers don’t know how to actually RUN an insurance plan. [Unless the employer is Aetna, I guess]. So they hire insurance companies to administer them. You get a card that says Cigna or Blue Cross, but your employer’s funds actually pay the medical bills, so these are called “self-funded” plans. But this is all stuff most of us are just not aware of. 

Here’s Chris Hamby: 

Chris Hamby: I hadn’t, until about a year ago, even heard of a self-funded plan. And I like to think that I’m reasonably well informed on this stuff. 

Dan: Yeah, that is putting it mildly. Chris made his name and won a Pulitzer Prize covering workplace health issues. So, just park that for a minute: self-funded plan, where the employer is the “self,” actually paying the bills, and paying the insurance company a fee. The insurance company is a middleman. 

OK, now, next layer: The middleman’s middleman. In this case, the company MultiPlan that Chris wrote about. What’s their job? So in this story, the job they’re doing– their middleman job– is to address what is admittedly kind of a tough question: If you go see somebody– a doctor, a therapist– who doesn’t take your insurance, what happens? 

Chris Hamby: How do you determine what a fair amount to pay the provider is? And by extension, how much is the patient potentially on the hook for the unpaid balance? And that has long been a contentious issue. 

Dan: Because, if they don’t take your insurance, a provider could charge … absolutely anything. So is your insurer– and again, that’s often actually your employer– supposed to pay absolutely anything? How much are they supposed to pay? Figuring that out, it’s a job. 

About 15 years ago, another middleman company doing that job got sued by the NewYork state attorney general. The state said this earlier middleman’s way of figuring out what to pay was screwing over both providers and patients. And the state’s lawsuit produced a solution. 

Chris Hamby: The insurance companies agreed to fund the creation of a nonprofit entity that was going be sort of an independent, neutral arbiter of fair prices. It was going to collect data from all the insurers and just make it publicly available. Make sure it was transparent to everyone. 

Dan: This nonprofit is called FAIR Health, and its data is actually public. It still exists. Like, you can use it yourself — you can look up the going rate for a knee replacement, a blood test, whatever. 

Chris Hamby: You can plug in your zip code, plug in your medical procedure and see an estimate of what, you know, typical out-of-network charges and in-network charges would be for these. 

Dan: It’s cool! Check it out yourself; it’s useful. And all the major insurance companies agreed to use it– to use FAIR Health’s benchmarks– to decide what to pay for out-of-network stuff. But, those agreements only committed insurance companies to using FAIR Health for … five years. They expired in 2014. 

Enter middleman companies like MultiPlan, saying to insurance companies: Hey, you COULD use FAIR Health– or you could route out-of-network bills to us: Hire us to get you an even better deal– better prices. 

Chris Hamby: And it’s important to note also that this is a time when private equity is investing in healthcare, and there are some legitimate concerns about driving up those list prices to ridiculously high levels in a lot of cases. So, there were real issues that insurers were saying that they were responding to at the time.

Dan: OK, so that’s the pitch. MultiPlan is saying to insurance companies: We’ll help you hold the line. We can save you more money than if you used FAIR Health. Well, kind of. Because here’s where we come back to the whole thing about self-funded insurance. MultiPlan isn’t saying, “We can save YOU, insurance company, more money than if you used FAIR Health.” They’re saying, “We can help you save your CLIENTS– employers who do self-funded health insurance– more money. And when you save them money, you’re gonna make money. Because you can charge them a percentage of what you’re saving them. And we’ll get a percentage too.” A percentage of the savings. On every single bill. That’s a very different deal than just using FAIR Health’s data. 

Chris Hamby: FAIR Health is not taking a percentage of the savings that they obtain. They’re just selling you their data. And the insurers typically are not charging employers a fee for using FAIR Health’s data. But if they use MultiPlan’s data, both MultiPlan and the insurer typically charge a fee. 

Dan: A percentage. In examples from Chris’s story, the insurance company gets 35 percent of those savings. 

Chris Hamby: And this has become a significant amount of money for a lot of insurance companies. Overall, UnitedHealthcare, is up to, you know, around a billion dollars per year in recent years. 

Dan: UnitedHealthcare collects like a billion dollars in fees for these services, basically, for using MultiPlan specifically? 

Chris Hamby: And they couch that by saying some other out-of-network savings programs, but yes. 

Dan: Whooh! 

Chris Hamby: One thing that the insurers say is that the employers are aware of this; they’ve signed up for it. 

Dan: That employers are hiring, say, Cigna, with MultiPlan to find savings. And employers are agreeing to the fees. 

Chris Hamby: Where it gets a little bit dicier from the employer’s perspective is when you see claims where, for instance, you end up paying the insurance company more in fees than you paid the doctor for treating your employee. 

Dan: yeah, one example from Chris’s story: An out-of-network provider wanted more than $150,000 on one bill. And after the insurance company and MultiPlan did their bit, the employer, a trucking company, ended up paying $58,000. Eight thousand for the provider, and $50,000 to the insurance company and MultiPlan. So, on the one hand, the employer maybe saved $90,000. But paying $50,000 for “cost containment?” Maybe doesn’t sound like such a bargain. 

Some employers and a union that runs a health plan have filed lawsuits looking for some of that money back. And there’s also a big irony here because MultiPlan’s pitch is, you need us because sticker prices are super-wildly high. But MultiPlan isn’t doing anything to contain the sticker prices as a systemic problem. In fact, the higher providers crank up their sticker prices, the more money MultiPlan and the insurance companies they work with can make. But then there’s a big question too, which is, what happens to the rest of that bill for the sticker price? Who pays that? That’s next … 

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News. The folks at KFF Health News are amazing journalists. Their work wins all kinds of awards, every year. We’re honored to work with them. 

So, a provider sends a bill. MultiPlan and the insurance company say, “Woah, way too much.” And then what happens? Well, it depends. Sometimes, MultiPlan negotiates with the provider. They’ve got people who do this. And those negotiators drive hard bargains. According to Chris’s story, negotiators sometimes tell providers: Here’s my offer, you’ve got a few hours to take it or leave it, and my next offer might be lower. 

Chris talked with a pediatric therapist who said an offer based on MultiPlan’s calculation was less than half of what Medicaid pays. Less than half. And Medicaid rates– they’re notoriously pretty low. Chris talked with some of MultiPlan’s negotiators too. 

Chris Hamby: It was interesting because some of the negotiators felt that they were doing their part to hold down costs and really sort of stick it to providers and hospitals that were price gouging. 

Dan: But …one told Chris she knew the offers she made– they weren’t fair. “It’s just a game,” another one said. “It’s sad.” And maybe the difference is that some of these negotiators were thinking of a big hospital charging $150,000  for something. And maybe some of them were thinking of someone like that therapist– the one who got offered less than half of Medicaid’s rate. 

And I’m not gonna get into the question of who should be doing this kind of negotiating, or what’s fair. I mean, not today, anyway. Because: in a lot of cases with MultiPlan, there’s no negotiation at all. Negotiation only happens when the employer has told the insurance company, look, protect my people. Figure out SOMETHING with the provider so they don’t go after my workers for the rest. 

But that doesn’t always happen. A lot of the time, what happens is: The provider sends a bill. The insurance company kicks in whatever it decides to … and that’s it. 

So Chris’s story opens with a woman who had surgery. With MultiPlan’s help, her insurance company decided to pay about $5,400. And she got stuck with a bill for more than $100,000. 

And then there’s Kristin and Paul in Kansas City. They paid their bills upfront and then looked to get reimbursed– kept a spreadsheet. But when their claims finally got processed, the numbers didn’t add up. Here’s what they saw: Like pretty much every insurance plan, Kristin and Paul’s had a “deductible”– an amount they had to pay out of pocket before insurance would reimburse anything. 

Kristin H: Then I started watching the deductible and you know, when I calculated my spreadsheet of how much we had paid out of pocket, and when we saw what was on like our out-of-network spend, those two weren’t matching. 

Dan: She really couldn’t figure this out. 

Kristin H: I just kind of handed over all of my spreadsheets to Paul, and so that’s when he started digging into the “your discount.” 

Dan: “Your discount…” That was this mysterious number on all the statements from the insurance company. In addition to the provider’s rate, and what insurance might pay, the statements listed, quote, “your discount.” 

Paul H: And I’m like, what is this? I don’t understand why it’s talking about a discount. We are paying cash out of pocket to the provider at their billed rate, and our insurance is saying that there’s some sort of discount. 

Dan: After a bunch of phone calls, he figured it out: The discount was … the difference between the amount on the bill and what the insurance company– with MultiPlan’s help– had decided was a “fair price.” 

Paul H: For example, an occupational therapy bill that might be $125, this third party adjuster might come back and say, essentially what the market rate for that should be is $76. And so, your discount, quote, unquote, is $49. 

Dan: Except of course, it wasn’t a discount for Kristin and Paul. They had already paid that $49, when they paid the provider upfront. Once Kristin and Paul learned what the “discount” actually meant, they started to understand who actually got the benefit– the insurer. Because … 

Kristin H: That discounted rate is actually what will be applied to your deductible. So you’re not going to hit your deductible nearly as quickly as you think. Right? Because we’ve essentially ignored half of your payment. 

Dan: This hits Kristin and Paul in two ways. 

First, it means they’re actually spending a lot more before their insurance kicks in. It also means that when their insurance does start reimbursing them a percentage of what they’ve spent, the insurance is only paying a percentage of that lower amount. Overall, it means the reimbursements Kristin and Paul get are gonna be thousands of dollars less than they’d expected. 

I mean, it took a LOT of work for Kristin and Paul to figure this out. At one point, Paul posted to Reddit asking for help– that’s where Chris Hamby found him. In Paul’s post, he noted how nobody ever even mentioned this third-party adjuster– not until he had already talked to his insurance company for what he said was “about 18 times.” Frequently on hold for 45 minutes or more. 

Kristin says once they finally figured out what was going on, they could figure out how to budget for it. There were sacrifices. She stopped seeing one of her providers as often. But finally figuring out what was going on also allowed them to live with it. 

Kristin H: The infuriating part was telling, like doing exactly what we were told to do, following the process, and then feeling like you are crazy. Like why, why doesn’t this make sense? You know? And so I think I’m fortunate that Paul just wouldn’t let it die and was gonna research until he figured it out. 

Dan: You did all of the work, you tracked it down, you identified the problem, and you, as you say, kind of resigned yourself to it. You’re like, okay, this Goliath is not– we don’t have the slingshot for this. Goliath is stomping all over our town, and we have to live in that reality. Having the knowledge, having done that work, gives you, it sounds like, an ability to have some peace. Like having tracked it down means that this sucks, but it’s not the same as living in a situation where like, now what? Like anything could happen.

Kristin H: Yeah, you feel crazy or hopeless. You know? Like I’ve done everything and this doesn’t … So there’s just the sense of like, am I missing something? You know, is there anything left for me to do? I recognize that everyone is not like this, but for me, knowledge is a gift. 

Dan: Chris Hamby says there’s rarely a way to get this kind of knowledge in advance. He says you’re unlikely to find these kinds of details in your insurance plan document. 

Chris Hamby: It typically will not say when you go out of network, we’re going to send your claim to a third party that you’ve never heard of to price it. It will just give some sort of vague language about competitive rates in your geographic area. And if you call up in advance of seeking the care to try and get an estimate, most of the time you will not get much more specifics than that. They tell you you have to just go and they’ll process the claim and you’ll see when the explanation of benefits comes through. 

Dan: Yeah, and look, I hate to get you even angrier, but Chris says the rules can change on you, without notice. 

Chris Hamby: A lot of people that I talk with also have seen no change in their insurance plan, but they’ve seen their reimbursement rates decline over time. 

Dan: Turns out, behind the scenes, their insurance made a switch from a service like FAIR Health, which looks at what’s getting paid in general, to a service like MultiPlan, which looks for the steepest possible price cuts. 

Chris Hamby: And the difference between those two amounts can be vast. So you have people who in some cases stop seeing their doctors because their costs doubled almost overnight. 

Dan: Oh god. And still. Better to know. Better that as many of us know as possible. That’s why Chris reviewed more than 50,000 pages of documents, and interviewed more than a hundred people for that story. And why lawyers for the New York Times helped get courts to agree to give him documents that had been under seal. 

Kristin and Paul– who had figured most of this out for themselves– they definitely appreciated all that work. 

Paul H: When Chris published the article that he did, it was very validating to know we’re not the only ones who are in this same boat. And there’s actually people who have had far worse experiences than ours. Like, ours kind of pale in comparison. And then immediately, like, within 24 hours to see 1,500 or 1,600 comments on the article talking about it. It’s like, okay, I might not have the stone that can slay the giant, but maybe The NewYork Times has the right sling and they might have the right stone to at least start the conversation. 

Dan: A few weeks after Chris’s article came out, U.S. Senator Amy Klobuchar sent the top federal antitrust regulators a letter: She wanted them to take a hard look at MultiPlan. 

Chris Hamby: She expressed concern about the potential for price fixing here. 

Dan: Actually, Chris says some providers have already filed lawsuits against MultiPlan based on antitrust allegations. 

Chris Hamby: The idea is that all the insurance companies outsource their pricing decisions to a common vendor. They’re essentially fixing prices via algorithm is the allegation. 

Dan: As we noted here a few episodes ago, these antitrust regulators in the Biden administration have gotten pretty feisty. [That was the episode about the cyberattack on a company called Change Healthcare. It was called “The Hack,” if you missed it. Pretty fun!] 

And I mean, those antitrust regulators have their work cut out for them. And a lot of targets. But I do want to egg them on here. I suspect you do too. Meanwhile, you’re egging US on. 

Listener 1: The first thought that went through my head was I’m going to fight this because this is absolutely ridiculous. I’ve already paid for this. 

Dan: A few weeks ago, we asked you for stories about your experiences with sneaky fees, often called facility fees. 

Listener 2: When the facility fee is twice the office visit fee, it’s just crazy. I mean, it’s a 10-minute appointment for a prescription. 

Dan: You came through, and now we’re making some calls, digging in for more details, and learning so much. We’re gonna have a sneak preview for you in a few weeks. Till then, take care of yourself. 

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Emily Pisacreta and Claire Davenport– our summer intern. Welcome aboard, Claire!– and edited by Ellen Weiss. Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Gabe Bullard is our engagement editor. Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling and journalism. Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. 

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about INN at INN.org. Finally, thanks to everybody who supports this show financially. You can join in any time at https://armandalegshow.com/support/

Thanks for pitching in if you can, and thanks for listening.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

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A Tale of Two States: Arizona and Florida Diverge on How To Expand Kids’ Health Insurance

Arizona and Florida — whose rates of uninsured children are among the highest in the nation — set goals last year to widen the safety net that provides health insurance to people 18 and younger.

But their plans to expand coverage illustrate key ideological differences on the government’s role in subsidizing health insurance for kids: what to charge low-income families as premiums for public coverage — and what happens if they miss a payment.

“It’s a tale of two states,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families.

That divergence represents more than just two states taking their own path. It showcases a broader breakthrough moment, Alker said, as the nation rethinks how government works for families following the covid-19 pandemic.  The divide also underscores the policies at stake in the 2024 presidential election.

Republican-led legislatures in Florida and Arizona worked across party lines in 2023 to pass bills to expand their states’ Children’s Health Insurance Program — widely known as CHIP — which covers anyone younger than 19 in families earning too much to be eligible for Medicaid.

Florida Republican Gov. Ron DeSantis and Arizona Democratic Gov. Katie Hobbs then signed bills into law last year that increased the amount of money a family can make and still be eligible for their states’ CHIP programs. That’s where the similarities end.

Arizona began to enroll newly eligible children in March. That state has adopted policies that align with the Biden administration’s efforts to apply Affordable Care Act-style protections to CHIP, such as eliminating annual and lifetime limits on coverage and lockouts if families don’t pay premiums.

Arizona’s CHIP plan, called KidsCare, suspended its monthly premiums in 2020 and has yet to reinstate them. State officials are considering whether it’s worth the expense to manage and collect the payments given that new federal rules forbid the state from disenrolling children for nonpayment, said Marcus Johnson, a deputy director for the state’s Medicaid agency.

“We’re trying to understand if the juice is worth the squeeze,” he said.

By contrast, Florida has yet to begin its expanded enrollment and is the only state to file a federal lawsuit challenging a Biden administration rule requiring states to keep kids enrolled for 12 months even if their families don’t pay their premiums.

A judge dismissed Florida’s lawsuit on May 31, saying the state could appeal to federal regulators. The state’s CHIP expansion now awaits federal regulatory approval before newly eligible children can be enrolled.

“No eligible child should face barriers to enrolling in CHIP or be at risk of losing the coverage they rely on,” said Sara Lonardo, a spokesperson for the federal Department of Health and Human Services.

Florida’s CHIP expansion calls for significantly raising premiums and then boosting them by 3% annually. The state estimates expansion will cost an additional $90 million in its first full year and expects to collect about $23 million in new premiums to help fund the expansion of what it calls Florida KidCare.

But Florida officials have said that complying with a provision that bars children from being disenrolled for unpaid premiums would cause the state to lose $1 million a month. The state’s 2024 budget allocates $46.5 billion to health care and projects a $14.6 billion surplus.

Florida officials have flouted federal regulations and removed at least 22,000 children from CHIP for unpaid premiums since the rule banning such disenrollments took effect on Jan. 1, according to public records obtained by the Florida Health Justice Project, a nonprofit advocacy group.

DeSantis’ office and Florida’s Medicaid administration did not respond to KFF Health News’ repeated requests for comment about CHIP. But in legal filings, Florida said its CHIP plan is a “personal responsibility program.” It is “a bridge from Medicaid to private insurance,” the administration said on social media, to get families used to premiums, cost sharing, and the risk of losing coverage when missing a payment.

For some Floridians, like Emily Dent in Cape Coral, the higher premiums proposed in the state’s expansion plan would create a financial burden, not open a path to self-sufficiency.

Dent, 32, said her 8-year-old son, James, was disenrolled from Medicaid in April because the family’s income was too high. Although James would qualify for CHIP under Florida’s proposed expansion, Dent said the $195 monthly premium would be a financial struggle for her family.

Leaving James uninsured is not an option, Dent said. He is severely disabled due to a rare genetic disorder, Pallister-Killian syndrome, and requires round-the-clock nursing.

James Dent, of Cape Coral, Florida, has a rare genetic disorder, Pallister-Killian syndrome, which requires round-the-clock nursing. His mother, Emily Dent, says the 8-year-old was disenrolled from Medicaid in April because the family’s income was too high.(Emily Dent)

“He has to have health insurance,” she said. “But it’s going to drain my savings, which was going to be for a house one day.”

Research shows the cost of premiums can block many families from obtaining and maintaining CHIP coverage even when premiums are low.

And premiums don’t offset much of a state’s costs to operate the program, said Matt Jewett, director of health policy for the Children’s Action Alliance of Arizona, a nonprofit that promotes health insurance coverage for kids in the Grand Canyon State.

He noted that the federal government pays 70% of Florida’s program costs and 75% of Arizona’s — after deducting all premiums collected.

“Premiums are more about an ideological belief that families need to have skin in the game,” he said, “rather than any practical means of paying money to support the program.”

Republican-leaning states are not alone in implementing monthly or quarterly premiums for CHIP. Twenty-two states, including Democratic-leaning states such as New York and Massachusetts, charge premiums.

States have had wide discretion in how they run CHIP since the program became law in 1997, including the ability to charge such premiums and cut people’s access if they failed to pay. That’s been part of its success, said Jennifer Tolbert, deputy director of the Program on Medicaid and the Uninsured at KFF.

“Especially in more conservative states, the ability to create CHIP as a separate program — independent from Medicaid — enabled and fostered that bipartisan support,” Tolbert said.

But in the decades since CHIP was enacted, government’s role in health insurance has evolved, most significantly after President Barack Obama in 2010 signed the Affordable Care Act, which introduced coverage protections and expanded assistance for low-income Americans.

Former President Donald Trump didn’t prioritize those things while in office, Tolbert said. He has suggested that he is open to cutting federal assistance programs if reelected, while the Biden administration has adopted policies to make it easier for low-income Americans to enroll and keep their health coverage.

Just as for Dent, the question of CHIP premiums in this debate isn’t abstract for Erin Booth, a Florida mom who submitted a public comment to federal regulators about Florida’s proposed CHIP expansion. She said she would have to pay a high premium, plus copayments for doctor visits, to keep her 8-year-old son covered.

“I am faced with the impossible decision of whether to pay my mortgage or to pay for health insurance for my son,” she wrote.

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Super Bowl Parade Shooting Survivors Await Promised Donations While Bills Pile Up

Abigail Arellano keeps her son Samuel’s medical bills in a blue folder in a cabinet above the microwave. Even now, four months after the 11-year-old was shot at the Kansas City Chiefs Super Bowl parade, the bills keep coming.

There’s one for $1,040 for the ambulance ride to the hospital that February afternoon. Another for $2,841.17 from an emergency room visit they made three days after the shooting because his bullet wound looked infected. More follow-ups and counseling in March added another $1,500.

“I think I’m missing some,” Arellano said as she leafed through the pages.

The Arellanos are uninsured and counting on assistance from the fund that raised nearly $2 million in the aftermath of the shooting that left one dead and at least 24 other people with bullet wounds. She keeps that application in the blue folder as well.

The medical costs incurred by the survivors of the shooting are hitting hard, and they won’t end soon. The average medical spending for someone who is shot increases by nearly $30,000 in the first year, according to a Harvard Medical School study. Another study found that number goes up to $35,000 for children. Ten kids were shot at the parade.

Then there are life’s ordinary bills — rent, utilities, car repairs — that don’t stop just because someone survived a mass shooting, even if their injuries prevent them from working or sending kids to school.

The financial burden that comes with surviving is so common it has a name, according to Aswad Thomas of the nonprofit Alliance for Safety and Justice: victimization debt. Some pay it out-of-pocket. Some open a new credit card. Some find help from generous strangers. Others can’t make ends meet.

“We’re really broke right now,” said Jacob Gooch Sr., another survivor, who was shot through the foot and has not yet been able to return to work.

“We’re, like, exhausting our third credit card.”

As is common after mass shootings, a mosaic of new and established resources emerged in this Missouri city promising help. Those include the #KCStrong fund established by the United Way of Greater Kansas City, which is expected to begin paying victims at the end of June.

Survivors must navigate each opportunity to request help as best they can — and hope money comes through.

GoFundMes, Generous Strangers, and a New Line of Credit

Mostly, it’s the moms who keep the bills organized. Tucked above the microwave. Zipped inside a purse. Screenshots stored on a phone. And then there’s a maze of paperwork: The Missouri state victims’ compensation form is five pages, including instructions. It’s another six pages for help from the United Way.

Emily Tavis keeps stacks of paperwork with color-coded binder clips in her basement: Black for her partner, Gooch Sr.; blue for her stepson, Jacob Gooch Jr.; pink for herself. All three were shot at the parade.

Tavis was able to walk after a bullet ripped through her leg, and she considered declining the ambulance ride because she was worried about the cost — she lacked insurance at the time.

Gooch Sr. was unable to walk because he’d been shot in the foot. So they shared an ambulance to the hospital with two of their kids.

“I’m not paying for this s—. I didn’t ask for this life,” Tavis, laughing, recalled thinking at the time. They soon realized 14-year-old Gooch Jr. had a bullet in his foot as well.

Tavis and Gooch Sr. received separate $1,145 bills for the ambulance. Gooch Jr. did not, possibly because he has health coverage through Medicaid, Tavis said.

She sends the medical bills to victims’ compensation, a program to help with the economic losses from a crime, such as medical expenses and lost wages. Even though Tavis and Gooch live in Leavenworth, Kansas, their compensation comes from the program in Missouri, where the shooting occurred.

The program pays only for economic losses not covered by other sources like health insurance, donations, and crowdsourced fundraisers. Gooch Sr. and Jr. both had health insurance at the time of the parade, so the family has been sending only the uncovered portion to victims’ compensation.

The family initially received a lot of support. Friends and relatives made sure they had food to eat. The founder of an online group of Kansas City Chiefs fans sent $1,000 and gifts for the family. A GoFundMe page raised $9,500. And their tax refund helped.

They knew money might get tight with Gooch Sr. unable to work, so they paid three months’ rent in advance. They also paid to have his Ford Escape fixed so he could eventually return to work and bought Tavis a used Honda Accord so she could drive to the job she started 12 days after the parade.

And because the donations were intended for the whole family, they decided to buy summer passes to the Worlds of Fun amusement park for the kids.

But recently, they’ve felt stretched. Gooch Sr.’s short-term disability payments abruptly stopped in May when his health insurance prompted him to see an in-network doctor. He said the short-term disability plan initially didn’t approve the paperwork from his new doctor and started an investigation. The issue was resolved in June and he was expecting back pay soon. In the interim, though, the couple opened a new credit card to cover their bills.

In the interim, the couple opened a new credit card to cover their bills.

“We’ve definitely been robbing Peter to pay Paul,” Tavis said.

Ideally, the money that eventually comes from the United Way, victims’ compensation, and, they hope, back pay from short-term disability will be enough to pay off their debts.

But, Tavis said, “You gotta do what you gotta do. We’re not going to go without lights.”

United Way Payout Expected at End of June

With every mass shooting, donations for survivors inevitably flow in, “just like peanut butter goes with jelly, because people want to help,” said Jeff Dion, executive director of the Mass Violence Survivors Fund, a nonprofit that has helped many communities manage such funds.

Typically, he said, it takes about five months to disburse the money from these large community funds. Victims can potentially get money sooner if their community has a plan in place for these types of funds before a mass shooting. Funds may also advance money to people with urgent financial needs who are certain to qualify.

The United Way hung banners in the Chiefs colors on Kansas City’s Union Station with its #KCStrong campaign within days of the shootings. Driven by large donations from the team, the NFL, quarterback Patrick Mahomes, other individuals, and local companies, it ultimately raised more than $1.8 million.

The promise of a large payout has kept the injured hopeful, even as many felt confused by the process. Some people interviewed for this story did not wish to say anything negative, fearing it would hurt their allocation.

United Way officials announced in April that donations would be closed at the end of that month. On May 1, the organization posted a notice saying it would issue “claimant forms” and that the Jackson County Prosecutor’s Office was helping verify shooting victims. The United Way affiliate’s board of trustees plans to meet June 26 to determine allocations, with payments arriving as early as June 27.

Kera Mashek, a spokesperson for United Way of Greater Kansas City, said payouts will be made to 20 of the 24 shooting survivors. The other four either couldn’t be verified as victims or turned down the funds, she said. Claimants do not include the 67 people prosecutors say were trampled in the melee, she said.

Pending board approval, money will also be disbursed to 14 community groups that support nonviolence initiatives, mental health concerns, and first responders, Mashek said.

To criticism that the United Way didn’t communicate well with the victims, Mashek said it tried to respond in a timely manner.

“We’ve tried to keep that line of communication open as fast as possible and most people have been very patient,” she said. “I think that they will be very grateful and very, I believe, pleasantly surprised with the amount of funding that they receive.”

Other Resources Available

Abigail Arellano hadn’t heard of victims’ compensation, which is common. A 2022 survey from the Alliance for Safety and Justice found that 96% of victims did not receive that support and many didn’t know it existed.

Arellano and her husband, Antonio, didn’t attend the parade but they’ve had medical expenses as well. Antonio has been going to therapy at a local health center to help with the stressful task of guiding his son through the trauma. It’s been helpful. But he’s been paying around $125 out-of-pocket for each session, he said, and the bills are mounting.

One of Samuel’s sisters set up a GoFundMe that raised $12,500, and Abigail said it helped that the family shared their story publicly and that Abigail reached out to help others in the Latino community affected by the shooting.

It was Abigail, for instance, who connected 71-year-old Sarai Holguin with the Mexican Consulate in Kansas City. The consulate, in turn, helped Holguin register as an official victim of the shooting, which will enable her to receive assistance from the United Way. Holguin’s bills now include a fourth surgery, to remove the bullet lodged near her knee that she had previously made peace with living with forever — until it began protruding through her skin.

‘Generous and Quick’ Relief to Victims

Several survivors were relieved and grateful to receive funds from a less high-profile, nondenominational group called “The Church Loves Kansas City.

The day after the shooting, Gary Kendall, who ran a Christian nonprofit called “Love KC,” started a text chain at 6 a.m. with city leaders and faith-based groups, and eventually received pledges of $184,500. (Love KC has now merged with another nonprofit, “Unite KC,” which is disbursing its funds.)

The first payout went to the family of Lisa Lopez-Galvan, the 43-year-old mother of two and popular DJ who was the sole fatality during the parade shootings. Unite KC spent $15,000 on her burial expenses.

Unite KC spent $2,800 so James and Brandie Lemons could get their health insurance restored because James couldn’t work. Unite KC also paid $2,200 for the out-of-pocket surgical costs when James decided to get the bullet removed from his leg.

“I appreciate it,” an emotional James Lemons said. “They don’t have to do that, to open their hearts for no reason.”

Erika Nelson was struggling to pay for household expenses and had to take time off from her home health care job to take her injured daughter, 15-year-old Mireya, to doctor appointments. Mireya was shot in the chin and shoulder and is recovering.

A GoFundMe page set up by Nelson’s best friend raised about $11,000, but it was frozen after Nelson tried to get into the account and GoFundMe thought it was being hacked. She feared the lights would be shut off in their apartment, because of unpaid electric bills, and was feeling desperate.

“I’m struggling with, like, you know, groceries,” Nelson said. “People were like, ‘Oh, go to food pantries.’ Well, the food pantries are not open the times I can get off. I can’t just take off work to go to a food pantry.”

After meeting with Gary Kendall, Nelson received three months of rent and utility payments, about $3,500.

“A weight off my shoulder. I mean, yeah. In a big way,” she whispered. “’Cause you never know. You never know what can happen in two days, five days, two weeks, two months.”

Samuel Arellano’s family recently connected with Unite KC, which will pay for his ambulance bill, one of the hospital bills, and some therapy, worth about $6,000. The bill for the initial emergency room trip was about $20,000, his parents said, but the hospital had been reluctant to send it and ultimately covered the cost.

And Unite KC also intends to pay off a $1,300 credit card bill for Emily Tavis and Jacob Gooch Sr.

Unite KC has disbursed $40,000 so far and hopes to connect with more of the injured families, hoping to be as “generous and quick as we can,” Kendall said. United Way will be like a “lightning bolt” for victims’ relief, Kendall said, but his group is aiming for something different, more like a campfire that burns for the next year.

“We agree this is a horrific thing that happened. It’s a sad state of humanity but it’s a real part,” he said. “So we want to remind them that God has not forgotten you. And that although he allowed this, he has not abandoned them. We believe we can be like an extension of his love to these people.”

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Sobrevivientes del tiroteo en el desfile de los Chiefs esperan las donaciones prometidas mientras acumulan cuentas médicas

Abigail Arellano tiene todas las facturas médicas de su hijo Samuel en una carpeta azul en un armario arriba del microondas. Incluso ahora, cuatro meses después que el niño de 11 años fuera herido de bala en el desfile del Super Bowl de los Kansas City Chiefs, las facturas siguen llegando.

Hay una de $1,040 por el traslado en ambulancia al hospital aquella tarde de febrero. Otra de $2,841,17 por una visita a la sala de emergencias tres días después del tiroteo porque la herida de bala parecía infectada. En marzo, más seguimientos y consejería agregaron otros $1,500.

“Creo que me faltan algunas”, dijo Arellano mientras hojeaba las páginas.

Los Arellano no tienen seguro y están contando con la asistencia del fondo que recaudó casi $2 millones después del tiroteo que dejó un muerto y al menos 24 personas con heridas de bala. También guarda esa solicitud en la carpeta azul.

Los costos médicos para los sobrevivientes del tiroteo son muy altos y no terminarán pronto. Según un estudio de la Escuela de Medicina de Harvard, el gasto médico promedio para alguien que recibió un disparo se eleva a casi $30,000 el primer año. Otro análisis halló que esa cifra sube a $35,000 en el caso de los niños. Diez menores fueron heridos por balas en el desfile.

Luego están las facturas regulares que forman parte de la vida —alquiler, servicios públicos, reparaciones del auto— que no dejan de llegar solo porque alguien sobrevivió a un tiroteo masivo, incluso si sus lesiones les impiden trabajar o mandar a los niños a la escuela.

La carga financiera que conlleva la supervivencia es tan común que tiene un nombre, según Aswad Thomas de la organización sin fines de lucro Alliance for Safety and Justice: deuda por victimización. Algunos la pagan de su bolsillo. Otros solicitan una nueva tarjeta de crédito. Algunos reciben ayuda de desconocidos generosos. Otros no pueden llegar a fin de mes.

“Ahora mismo estamos realmente en bancarrota”, dijo Jacob Gooch Sr., otro sobreviviente, quien fue herido en el pie y aún no ha podido volver a trabajar.

“Estamos, como, agotando nuestra tercera tarjeta de crédito”.

Samuel Arellano (centro) junto a sus padres, Abigail y Antonio, afuera de su casa en Kansas City, Kansas. La familia no tenía seguro cuando Samuel recibió un disparo en el desfile del Super Bowl de los Kansas City Chiefs en febrero. La familia cuenta con la ayuda del fondo que recaudó casi $2 millones después del tiroteo que dejó un muerto y al menos otras 24 personas con heridas de bala.(Bram Sable-Smith/KFF Health News)

Como es común después de tiroteos masivos, en esta ciudad de Missouri surgió un abanico de recursos nuevos y establecidos prometiendo ayuda. Entre ellos, el fondo #KCStrong creado por United Way of Greater Kansas City, que se espera comience a pagar a las víctimas a finales de junio.

Los sobrevivientes deben navegar cada oportunidad para solicitar ayuda lo mejor que puedan, y esperar que el dinero llegue.

GoFundMe, desconocidos generosos y una nueva línea de crédito

Tradicionalmente, son las mamás quienes mantienen las facturas organizadas. Apiladas sobre el microondas. En una cartera. En capturas de pantalla guardadas en el celular. Y luego hay un laberinto de papeleo: el formulario de compensación para víctimas del estado de Missouri tiene cinco páginas, incluidas las instrucciones. Son otras seis páginas para la ayuda de United Way.

Emily Tavis mantiene pilas de papeleo con diferentes clips de colores en su sótano: negro para su pareja, Gooch Sr.; azul para su hijastro, Jacob Gooch Jr.; rosa para ella misma. Los tres fueron heridos de bala en el desfile.

Tavis pudo volver a caminar después que una bala atravesara su pierna y consideró rechazar el viaje en ambulancia porque estaba preocupada por el costo; en ese momento no tenía seguro.

Gooch Sr. no podía caminar porque le habían disparado en el pie. Así que compartieron una ambulancia al hospital con dos de sus hijos.

“No voy a pagar por esta m…. No pedí esta vida”, recordó Tavis, riendo. Pronto se dieron cuenta que el joven Gooch Jr., de 14 años, también tenía una bala en el pie.

Abigail Arellano, standing in her kitchen, looks over a stack of bills in a blue folder.
Abigail Arellano guarda la pila de facturas médicas, acumuladas desde que le dispararon a su hijo, Samuel, de 11 años, en una carpeta azul en un gabinete encima del microondas en la cocina. (Peggy Lowe/KCUR 89.3)

Samuel Arellano (center) lifts his shirt with help from his mother, Abigail Arellano (left), and aunt Eunice Salas (right), to reveal where he was shot at the Kansas City Chiefs Super Bowl. There is a bandage on the right side of his ribcage.
Samuel Arellano (centro) levanta su camiseta con la ayuda de su madre, Abigail Arellano (izq.), y su tía Eunice Salas (der.), para mostrar en dónde le dispararon en el desfile del Super Bowl de los Kansas City Chiefs en febrero. (Bram Sable-Smith/KFF Health News)

Tavis y Gooch Sr. recibieron facturas separadas de $1,145 por la ambulancia. Gooch Jr. no, posiblemente porque tiene cobertura de salud a través de Medicaid, dijo Tavis.

Ella envía las facturas médicas a la compensación para víctimas, un programa para ayudar con las pérdidas económicas derivadas de un crimen, como los gastos médicos y los salarios perdidos. Aunque Tavis y Gooch viven en Leavenworth, Kansas, su compensación proviene del programa en Missouri, donde ocurrió el tiroteo.

El programa paga solo por pérdidas económicas no cubiertas por otras fuentes como el seguro de salud, donaciones y recaudaciones de fondos colectivas. Gooch Sr. y Jr. tenían cobertura médica al momento del desfile, por lo que la familia ha estado enviando solo la porción no cubierta a la compensación para víctimas.

Al principio, la familia recibió mucho apoyo. Amigos y familiares se aseguraron de que tuvieran siempre comida. El fundador de un grupo en línea de fanáticos de los Kansas City Chiefs envió $1,000 y regalos para la familia. Una página de GoFundMe recaudó $9,500. Y su reembolso de impuestos ayudó.

Con Gooch Sr. sin poder trabajar sabían que el dinero podía comenzar a faltar, así que pagaron tres meses de alquiler por adelantado. También gastaron en el arreglo de su Ford Escape para que eventualmente pudiera volver a trabajar y compraron un Honda Accord usado para que Tavis pudiera conducir al trabajo, al que volvió 12 días después del desfile.

Jacob Gooch Sr. (left) and Emily Tavis (right) sit beside each other in their home, with arms linked. Gooch Sr. is sitting in a recliner with his injured leg raised. His foot is wrapped in a white bandage.
Jacob Gooch Sr. y Emily Tavis recibieron una gran cantidad de apoyo emocional y financiero en los días posteriores a que ambos recibieran disparos en el desfile del Super Bowl de los Kansas City Chiefs. El hijo de Gooch también fue herido de bala. Sin embargo, en junio, la pareja había abierto una nueva tarjeta de crédito para ayudar a cubrir sus facturas.(Christopher Smith for KFF Health News)

Y como las donaciones estaban destinadas a toda la familia, decidieron comprar pases de verano para el parque de diversiones Worlds of Fun para los niños.

Pero recientemente, han estado apretados. Los pagos por discapacidad a corto plazo de Gooch Sr. dejaron de llegar abruptamente en mayo cuando su seguro de salud le pidió que viera a un médico de la red. Dijo que el plan de discapacidad a corto plazo inicialmente no aprobó el papeleo de su nuevo médico y comenzó una investigación. El problema se resolvió en junio y espera recibir pagos retroactivos pronto. Mientras tanto, la pareja solicitó una nueva tarjeta de crédito para cubrir sus facturas.

“Definitivamente hemos estado robando a Pedro para pagar a Pablo”, dijo Tavis.

Idealmente, el dinero que llegue de United Way, la compensación para víctimas y, esperan, el pago retroactivo por discapacidad a corto plazo, será suficiente para pagar sus deudas.

Pero, dijo Tavis, “tienes que hacer lo que tienes que hacer. No vamos a quedarnos sin luz”.

A back-lit portrait of Emily Tavis in her home.
Emily Tavis consideró rechazar un viaje en ambulancia después de recibir un disparo en la pierna en el desfile del Super Bowl de los Kansas City Chiefs porque estaba preocupada por el costo. Comenzó un nuevo trabajo 12 días después del desfile, pero incluso ahora que tiene seguro médico a través de su empleo, está en sintonía con los costos de buscar atención.(Christopher Smith for KFF Health News)
A photo Emily Tavis' leg. There's a gunshot wound on the side of her shin. You can see where the bullet entered and exited her body.
Emily Tavis muestra las heridas en su pierna cuatro meses después de recibir un disparo en el desfile del Super Bowl de los Kansas City Chiefs en febrero. (Christopher Smith for KFF Health News)

Jacob Gooch Sr. shows the where the bullet that shot through his foot. He points with his finger to show a diagonal trajectory from his ankle to the middle of the bottom of his foot.
Jacob Gooch Sr. muestra la trayectoria de la bala que le atravesó el pie en el desfile del Super Bowl de los Kansas City Chiefs. (Bram Sable-Smith/KFF Health News)

Jacob Gooch Sr. sits in a recliner in his home. His legs are elevated, with his injured foot raised slightly higher on a pillow. Emily Tavis, offscreen, wraps his foot in a white bandage.
Al no poder trabajar después de recibir un disparo en el desfile del Super Bowl de los Kansas City Chiefs en febrero, Jacob Gooch Sr. inicialmente recibió pagos por discapacidad a corto plazo. Pero esa asistencia se detuvo abruptamente en mayo cuando comenzó a ver a un nuevo médico que estaba en la red de su plan médico. El problema se resolvió en junio y pronto espera recibir pagos retroactivos.(Christopher Smith for KFF Health News)

En espera del pago de United Way a fines de junio

Con cada tiroteo masivo, inevitablemente fluyen donaciones para los sobrevivientes, “como la mantequilla con la mermelada, porque la gente quiere ayudar”, dijo Jeff Dion, director ejecutivo del Mass Violence Survivors Fund, una organización sin fines de lucro que ha ayudado a muchas comunidades a gestionar esos fondos.

Dijo que, típicamente, se tarda unos cinco meses en distribuir el dinero de estos grandes fondos comunitarios. Las víctimas pueden recibir dinero antes si su comunidad tiene un plan para estos tipos de fondos antes de un tiroteo masivo.

Los fondos también pueden adelantar dinero a personas con necesidades financieras urgentes que seguramente calificarán.

United Way colgó pancartas con los colores de los Chiefs en la Union Station de Kansas City con su campaña #KCStrong en los días posteriores al tiroteo. Impulsado por grandes donaciones del equipo, la NFL, el mariscal de campo Patrick Mahomes, otros individuos y empresas locales, finalmente recaudó más de $1.8 millones.

La promesa de un gran pago ha mantenido la esperanza de los heridos, incluso cuando a muchos los confundió el proceso. Algunas personas entrevistadas para esta historia no quisieron decir nada negativo, temiendo que pudiera afectar su asignación.

Los funcionarios de United Way anunciaron en abril que las donaciones se cerrarían a fin de mes. El 1 de mayo, la organización publicó un aviso diciendo que emitiría “formularios de reclamación” y que la Oficina del Fiscal del condado de Jackson estaba ayudando a verificar a las víctimas del tiroteo. La junta de fideicomisarios de la filial de United Way planea reunirse el 26 de junio para determinar las asignaciones, con los pagos llegando tan pronto como el 27 de junio.

Kera Mashek, vocera de United Way of Greater Kansas City, dijo que los pagos se harán a 20 de los 24 sobrevivientes del tiroteo. Los otros cuatro no pudieron ser verificados como víctimas o rechazaron los fondos, dijo. Agregó que los solicitantes no incluyen a las 67 personas que los fiscales dicen fueron pisoteadas en el tumulto.

Pendiente de la aprobación de la junta, el dinero también se distribuirá a 14 grupos comunitarios que apoyan iniciativas de no violencia, preocupaciones de salud mental y socorristas, dijo Mashek.

Ante las críticas de que United Way no se comunicó bien con las víctimas, Mashek dijo que intentaron responder de manera oportuna.

“Hemos tratado de mantener esta línea de comunicación abierta lo más rápido posible y la mayoría de la gente ha sido muy paciente”, dijo. “Creo que estarán muy agradecidos y, creo, gratamente sorprendidos con la cantidad de fondos que recibirán”.

An outdoor memorial is sat up near Union Station in Kansas City. There is a sign that reads, "Kansas City / Strong / United." Flowers, stuffed animals, and other memorial gifts surround the sign.
Los visitantes de Union Station en Kansas City, Missouri, el 19 de febrero de 2024, observan el monumento creado tras el tiroteo en la celebración del Super Bowl de los Chiefs.(Carlos Moreno/KCUR 89.3)

Otros recursos disponibles

Abigail Arellano no había oído hablar de la compensación para víctimas, lo cual es común. Una encuesta de 2022 de la Alliance for Safety and Justice encontró que el 96% de las víctimas no recibían ese apoyo y muchas no sabían que existía.

Arellano y su esposo, Antonio, no fueron al desfile, pero también han tenido gastos médicos. Antonio ha estado yendo a terapia en un centro de salud local para ayudar con la tarea estresante de guiar a su hijo a través del trauma. Ha sido útil. Pero ha estado pagando unos $125 de su bolsillo por cada sesión, dijo, y las facturas se están acumulando.

Una de las hermanas de Samuel creó un GoFundMe que recaudó $12,500, y Abigail dijo que ayudó que la familia compartiera su historia públicamente y que Abigail se pusiera en contacto para ayudar a otros en la comunidad latina afectada por el tiroteo.

De hecho, fue Abigail quien conectó a Sarai Holguín, de 71 años, con el consulado de México en Kansas City. El consulado, a su vez, ayudó a Holguín a registrarse como víctima oficial del tiroteo, lo que le permitirá recibir asistencia de United Way. Las facturas de Holguín ahora incluyen una cuarta cirugía, para quitar la bala alojada cerca de su rodilla con la que había hecho las paces de “vivir para siempre”, hasta que comenzó a sobresalir a través de su piel.

Alivio “generoso y rápido” para las víctimas

Varios sobrevivientes se sintieron aliviados y agradecidos de recibir fondos de un grupo menos conocido y no confesional llamado “The Church Loves Kansas City”.

El día después del tiroteo, Gary Kendall, quien dirigía una organización cristiana sin fines de lucro llamada “Love KC”, comenzó una cadena de mensajes de texto a las 6 am con líderes de la ciudad y grupos de fe, y eventualmente recibió promesas de $184,500. (Love KC ahora se ha fusionado con otra organización sin fines de lucro, “Unite KC”, que está distribuyendo sus fondos).

El primer pago fue para la familia de la popular DJ Lisa López-Galván, de 43 años y con dos hijos, quien fue la única fatalidad durante el tiroteo del desfile. Unite KC pagó $15,000 en sus gastos de entierro.

Unite KC gastó $2,800 para que James y Brandie Lemons pudieran recuperar su seguro de salud porque James no podía trabajar. Unite KC también pagó $2,200 de su bolsillo por los costos quirúrgicos cuando James decidió que le quitaran la bala de su pierna.

“Lo aprecio”, dijo un emocional James Lemons. “No tienen que hacer esto, abrir sus corazones sin razón”.

James Lemons stands outside a brick building on a sunny day.
James Lemons, quien recibió un disparo en el muslo derecho, el 7 de junio, el día en que le quitaron los puntos después de una cirugía para extraer la bala alojada en su pierna. Unite KC ayudó a la familia de Lemons con pagos al seguro para que puedan sobrevivir hasta que Lemons regrese a trabajar.(Peggy Lowe/KCUR 89.3)

Erika Nelson estaba luchando para pagar los gastos de su casa, y tuvo que tomarse tiempo libre de su trabajo de atención médica a domicilio para llevar a su hija herida, Mireya, de 15 años, a las citas médicas. Mireya recibió disparos en la barbilla y el hombro, y se está recuperando.

Una página de GoFundMe creada por la mejor amiga de Nelson recaudó alrededor de $11,000, pero fue congelada después que Nelson intentara ingresar a la cuenta y GoFundMe pensó que estaba siendo hackeada. Temía que cortaran la luz en su apartamento por las facturas de electricidad no pagas y estaba desesperada.

“Estoy luchando con, ya sabes, comestibles”, dijo Nelson. “La gente decía, ‘Oh, ve a los bancos de alimentos’. Bueno, los bancos de alimentos no están abiertos en los momentos que puedo salir. No puedo simplemente irme del trabajo para ir a un banco de alimentos”.

Después de reunirse con Gary Kendall, Nelson recibió dinero para pagar tres meses de renta y servicios públicos, alrededor de $3,500.

“Un peso menos sobre mis hombros. Quiero decir, sí. De una gran forma”, susurró. “Porque nunca sabes. Nunca sabes qué puede pasar en dos días, cinco días, dos semanas, dos meses”.

Recientemente, la familia de Samuel Arellano se conectó con Unite KC, que pagará su factura de ambulancia, una de las cuentas del hospital y algo de terapia, por un valor de unos $6,000. La factura por el traslado inicial a la sala de emergencias era de aproximadamente $20,000, dijeron sus padres, pero el hospital se mostró reacio a enviarla y finalmente cubrió el costo.

Y Unite KC también tiene la intención de pagar una factura de tarjeta de crédito de $1,300 para Emily Tavis y Jacob Gooch Sr.

Hasta ahora, Unite KC ha distribuido $40,000, y espera conectarse con más de las familias heridas, con la esperanza de ser tan “generosos y rápidos como podamos”, dijo Kendall. United Way será como un “ráfaga” de alivio para las víctimas, agregó, pero su grupo apunta a algo diferente, más como una fogata que arda durante el próximo año.

“Estamos de acuerdo en que esto es algo horrible que sucedió. Es un triste estado de la humanidad pero es una parte real”, dijo. “Así que queremos recordarles que Dios no los ha olvidado. Y que aunque permitió esto, no los ha abandonado. Creemos que podemos ser como una extensión de su amor para estas personas”.

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Live From Aspen: Health and the 2024 Elections
At the Aspen Ideas: Health festival, Julie Rovner, KFF Health News’ chief Washington correspondent, hosts a panel featuring Sandhya Raman and Margot Sanger-Katz.(Nick Tininenko/Aspen Ideas: Health)

The Host

The presidential election is less than five months away, and while abortion is the only health policy issue expected to play a leading role, others are likely to be raised in the presidential and down-ballot races. This election could be critical in determining the future of key health care programs, such as Medicaid and the Affordable Care Act.

In this special episode of KFF Health News’ “What the Health?” taped at the Aspen Ideas: Health festival in Aspen, Colorado, Margot Sanger-Katz of The New York Times and Sandhya Raman of CQ Roll Call join Julie Rovner, KFF Health News’ chief Washington correspondent, to discuss what the election season portends for top health issues.

Panelists

Among the takeaways from this week’s episode:

  • Policies surrounding abortion — and reproductive health issues, in general — likely will dominate in many races, as Democrats try to exploit an issue that is motivating their voters and dividing Republican voters. The topics of contraception and in vitro fertilization are playing a more prominent role in 2024 than they have in past elections.
  • High prescription drug prices — which, for frustrated Americans, are a longtime symbol, and symptom, of the nation’s dysfunctional health care system — have been a priority for the Biden administration and, previously, the Trump administration. But the issue is so confusing and progress so incremental that it is hard to say whether either party has an advantage.
  • The fate of many major health programs will be determined by who wins the presidency and who controls Congress after this fall’s elections. For example, the temporary subsidies that have made Affordable Care Act health plans more affordable will expire at the end of 2025. If the subsidies are not renewed, millions of Americans will likely be priced out of coverage again.
  • Previously hot-button issues like gun violence, opioid addiction, and mental health are not playing a high-profile role in the 2024 races. But that could change case by case.
  • Finally, huge health issues that could use public airing and debate — like what to do about the nation’s crumbling long-term care system and the growing shortage of vital health professionals — are not likely to become campaign issues.

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

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California Leaders Tussle With Health Industry Over Billions of New Dollars for Medi-Cal

Gov. Gavin Newsom, state lawmakers, and health industry leaders have a small window to reach an agreement on billions of new dollars for Medi-Cal before it’s put to voters in November.

An initiative, supported by virtually every sector of the state’s health care industry as well as the local Republican and Democratic parties, would lock in the money for Medi-Cal, California’s version of the Medicaid health insurance program for low-income residents. The funds would be used primarily to increase payment rates for health care professionals who serve Medi-Cal patients.

Newsom, a Democrat, initially supported using the money for that purpose. But after California’s fiscal situation darkened, he reversed course in May, proposing to divert most of it to reduce the state’s $45 billion budget deficit.

The money is from a tax on managed-care health plans that’s been around for two decades but has historically been used to offset existing state spending rather than support new investments in Medi-Cal.

“The importance of this ballot initiative is finally being serious about investing in the viability of the Medi-Cal system,” said Adam Dougherty, chief of emergency medicine at Sutter Medical Center in Sacramento. “The MCO tax literally touches every aspect of the Medi-Cal system, and it can’t be at the mercy of year-to-year budget crises.”

Michael Genest, a former finance director under Republican Gov. Arnold Schwarzenegger, noted that several ballot initiatives approved by voters in the past continue to narrow the state’s fiscal choices, including one that limits property tax increases and another that guarantees a large share of the state budget to schools.

“We do ballot-box budgeting in the state of California. We’ve done it forever. And everything we’ve done in that regard has turned out to be very hard on fiscal stability,” Genest said.

It’s possible that the Coalition to Protect Access to Care, made up of doctors, hospitals, health plans, and other medical providers, could settle their differences with state leaders before a June 27 deadline to withdraw the initiative.

Newsom’s desire to claw back most of the promised money puts him at odds with proponents of the initiative, many of whom have long counted themselves among his allies. Elana Ross, a spokesperson for Newsom, declined to comment on the status of the initiative.

In May, Newsom proposed using about $6.7 billion previously earmarked for Medi-Cal pay hikes and some other health care priorities, mostly in 2025 and 2026, to offset existing state spending. His proposal would retain Medi-Cal payment increases totaling around $300 million a year for some primary care, mental health, and maternity services.

The legislature passed a new budget on June 13 largely following the governor’s wishes by canceling the planned Medi-Cal increases in 2025. But Newsom hasn’t signed off.

“What was approved represents a two-house agreement between the Senate and the Assembly — not an agreement with the governor,” said H.D. Palmer, spokesperson for the state’s Department of Finance. “We’ll respectfully decline to speculate on what the contours of a final agreement would look like.”

Revenue from the managed-care tax allows the state to draw matching federal dollars, more than doubling the amount available. Federal and state money would also be used to reimburse the health plans for nearly all the taxes they paid, theoretically having no effect on insurance premiums.

California is among 19 states that have such an “MCO tax” in place to help fund their Medicaid programs. Using the tax revenue to pay Medi-Cal providers more is “a generational opportunity to fundamentally fix access to care for Medi-Cal recipients,” said Dustin Corcoran, CEO of the California Medical Association and a spokesperson for the ballot initiative.

Corcoran said internal polling shows the initiative has public support by “very healthy margins,” though he declined to share specific numbers.

If the initiative does end up on the November ballot and is approved, it would override any compromise Newsom strikes with lawmakers. It would restore the previously planned Medi-Cal investments for 2025 and 2026. And it would make the increased funding, and more of it, permanent starting in 2027, though that would require federal approval.

Proponents of the initiative say it is fundamentally a question of health equity. Medi-Cal covers medical and mental health services for nearly 15 million Californians, well over a third of the state, many of them among the poorest and most vulnerable residents. The program has a budget of about $157 billion, including recent expansions to cover all immigrants regardless of legal status and a $12 billion experiment to offer socioeconomic supports not traditionally covered by health insurance.

But access to care is notoriously spotty for many Medi-Cal patients, in part because low payment rates discourage providers from seeing them. The shortage is particularly acute in specialty care.

“Our patients wait months for access to specialists or travel great distances to see them,” said Joel Ramirez, chief medical officer of Camarena Health, a chain of over 20 community clinics based in Madera. “Higher rates would allow for more providers.”

Ramirez said 60% to 70% of Camarena’s patients are on Medi-Cal, many of them farmworkers. “It’s a tall ask for them to find time off work and get the transportation to travel an hour for an appointment,” he said. “Whatever condition that patient has that needs the attention of a specialist is being either untreated or incompletely treated.”

Dougherty, Sutter Medical Center’s ER chief, said that over half of his patients are on Medi-Cal and the ER is always at full capacity, with the waiting rooms jammed and an insufficient number of beds. The initiative, he said, “allows us to hire more staff, add more beds, create more infrastructure for the volume we’re seeing.”

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

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