Patricia Powers went a few years without health insurance and was unable to afford regular doctor visits. So the Missouri resident, who lives near St. Louis, had no idea cancerous tumors were silently growing in both of her breasts.

If Powers lived just across the Mississippi River in neighboring Illinois, she would have qualified for Medicaid, the federal-state health insurance program for low-income residents that 36 states and the District of Columbia decided to expand under the Affordable Care Act. But Missouri politicians chose not to expand it — a decision some groups are trying to reverse by getting signatures to put the option on the 2020 ballot.

Powers’ predicament reflects an odd twist in the way the health care law has played out: State borders have become arbitrary dividing lines between Medicaid’s haves and have-nots, with Americans in similar financial straits facing vastly different health care fortunes. This affects everything from whether diseases are caught early to whether people can stay well enough to work.

It wasn’t supposed to be this way. The ACA, passed in 2010, called for extending Medicaid to all Americans earning up to 138% of the federal poverty level, around $17,000 annually for an individual. But the U.S. Supreme Court in 2012 let states choose whether to expand Medicaid. Illinois did, bringing an additional 650,000-plus people onto its rolls. Missouri did not, and today about 200,000 of its residents are like Powers, stuck in this geographic gap.

Powers, who was in her early 60s when diagnosed with cancer, had briefly thought about moving to another state, just to be able to get Medicaid. “You ask yourself: Where do you go? What do you do?” says Powers. “Do I look at what’s happening in Illinois, right across the river?”

A recent University of Michigan study found Medicaid expansion substantially reduced mortality rates from 2014 to 2017. The researchers said Illinois averted 345 deaths annually while Missouri had 194 additional deaths each year. The same trends held for other side-by-side states such as Kentucky (did expand) and Tennessee (did not), New Mexico (did) and Texas (did not).

Dr. Karen Joynt Maddox, co-director of the Center for Health Economics and Policy at Washington University in St. Louis, says health care providers in her border city see how the coverage differences affect people. When treating Medicaid patients from Illinois, she says, doctors know procedures, equipment and medicines will likely be covered. With uninsured Missourians, they must consider whether patients can afford even follow-up medications after heart attacks.

Nonetheless, Medicaid expansion faces significant opposition in Missouri, which is a red state — led by a Republican governor with GOP supermajorities in both legislative chambers.

Patrick Ishmael, director of government accountability for the Show-Me Institute, a Missouri free-market think tank, says offering Medicaid to people with incomes above the poverty level would drain resources from the state’s underserved poor and push up taxpayer costs. Though the federal government pays 90% of the cost of the expansion coverage, he says, Missourians contribute to that through their federal taxes. Medicaid already accounts for about a third of the state’s budget, which he says puts pressure on other priorities, like education.

“Missouri and other states need to think about whether they are a government that provides health care or a health care provider that sometimes governs,” he says.

A Missouri story

Powers, a minister in the St. Louis County suburb of Hazelwood, used to get health insurance through her husband’s job selling lumber and hardware. After he was disabled in 2009, their coverage continued on and off for a while, and her husband eventually received Medicare, the federal insurance program for people who are 65 and older or who have disabilities. But Powers had no insurance starting in 2012 as the couple struggled on, at most, $1,500 a month.

Medicaid wasn’t an option for her. Missouri could have opened the program to more adults as early as 2010, in preparation for the health care law’s expanded coverage taking effect in 2014. Without the ACA’s expansion, adults who aren’t 65-or-older or disabled don’t qualify, no matter how low their income. Missouri’s program generally covers only pregnant women and children from low-income families, and people who are poor and elderly, blind or disabled.

Powers and her husband earned too little for her to qualify for subsidies on the federal ACA marketplace, so she couldn’t afford to buy her own plan. And without insurance, Powers never saw doctors for routine health visits or screenings. She stopped taking her prescribed medications for high blood pressure and anxiety — until she could no longer do without the anti-anxiety medicine, Lexapro.

In early 2016, she discovered a place to get help when she gave her friend a ride to a St. Louis clinic for the uninsured called Casa de Salud, where health services cost less than $30.

Powers figured she’d ask about getting back onto Lexapro there. She got a thorough checkup. The doctor found a walnut-sized lump in her right breast, and a mammogram found a tumor the size of a grain of rice in her left.

A clinic caseworker helped Powers sign up for a Medicaid program for breast cancer patients. She underwent surgery in April 2016, then had 35 radiation treatments and took follow-up medications.

Powers kept thinking she could have found the cancer earlier, if only she had insurance. That would have meant less treatment and lower costs for taxpayers, who ended up footing the bill anyway. Research shows breast cancer in its earliest stage can cost half as much to treat as in later stages.

“Even if you didn’t care about the human cost, you should care about the economic cost,” says Jorge Riopedre, president and CEO of Casa de Salud. “Treating a disease at its first stage is always going to be much cheaper than treating it at its advanced stage.”

An Illinois story

In neighboring Illinois, getting Medicaid through the expansion helped Matt Bednarowicz avoid debilitating medical debt after a motorcycle crash.

The wreck crushed his left foot, requiring doctors to insert pins in it. Without Medicaid, he would have faced thousands of dollars in medical bills.

“The debt would have been greater than I could comprehend overcoming,” says Bednarowicz, who is now 29.

His Medicaid kicked in “just in the nick of time” to cover the surgery, Bednarowicz says. It also allowed him to get psychiatric help for depression. More than a year later, he’s able to get around well — even jog — and works as a caregiver for an elderly man.

Having insurance helps people like Bednarowicz stay productive, says Riopedre.

“The person who gets sick can’t work, can’t support his or her family, can’t be a consumer and buy goods. If they’re not working, they can’t pay taxes,” Riopedre says. “It just is a tidal wave of downstream effects that if we can’t get it right — it’s going to have repercussions across the nation.”

Amid controversy, future uncertain for Missouri

As the ballot measure push continues, Missouri Gov. Mike Parson, a Republican, recently created a task force to look into expanding Medicaid through a waiver allowing states to skip some federal requirements. His office referred questions to the state’s Department of Health and Senior Services, which in turn referred them to the Department of Social Services. Rebecca Woelfel, a spokeswoman for that agency, says the department doesn’t typically comment on potential ballot issues.

Ishmael, of the Show-Me Institute, says he hopes the push for expansion doesn’t get that far. He says the Medicaid system overall is wasteful, with outcomes often not fully justifying the expense. The cost of an expansion would depend on how it’s structured, he says, but “it could be a real budget-buster.”

The impact of an expansion on Missouri’s budget remains unclear. A February analysis by researchers at Washington University estimated it would be “approximately revenue-neutral.” But their estimates range widely for the first year depending on enrollment and other factors, from up to $95 million in savings for Missouri’s Medicaid program to costing $42 million more than not expanding.

Powers, whose husband died last year, says she fully supports Medicaid expansion.

But whatever happens, especially now that she’s suffering from heart failure, she’s grateful she won’t have to worry about being uninsured again. At 66, she’s now old enough for Medicare.

Kaiser Health News is a nonprofit, editorially independent program of the Kaiser Family Foundation. KHN is not affiliated with Kaiser Permanente.

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Brianna Snitchler was just figuring out the art of adulting when she scheduled a biopsy at Henry Ford Hospital in Detroit.

Snitchler, 27, was on top of her finances: Her student loan balance was down and her credit score was up.

“I had been working for the past three years trying to improve my credit and, you know, just become a functioning adult human being,” Snitchler said.

For the first time in her adult life, she had health insurance through her job and a primary care doctor she liked. Together they were working on Snitchler’s concerns about her mental and physical health.

One concern was a cyst on her abdomen. The growth was about the size of a quarter, and it didn’t hurt or particularly worry Snitchler. But it did make her self-conscious whenever she went for a swim.

“People would always call it out and be alarmed by it,” she recalled.

Before having the cyst removed, Snitchler’s doctor wanted to check the growth for cancer. After a first round of screening tests, Snitchler had an ultrasound-guided needle biopsy at the Henry Ford Health System’s main hospital.

The procedure was “uneventful,” with no complications reported, according to results faxed to her primary care doctor after the procedure. The growth was indeed benign, and Snitchler thought her next step would be getting the cyst removed.

Then the bill came.

The patient: Brianna Snitchler, 27, a user-experience designer living in Detroit at the time. As a contractor for Ford Motor Co., she had a UnitedHealth Group insurance plan.

Total bill: $3,357.52, including a $2,170 facility fee listed as “operating room services.” The balance included a biopsy, ultrasound, physician charges and lab tests.

Service provider: Henry Ford Health System in Detroit.

Medical procedure: Ultrasound-guided needle biopsy of a cyst.

What gives: When Snitchler scheduled the biopsy, no one told her that Henry Ford Health System would also charge her a $2,170 facility fee.

Snitchler said the bill turned out to be far more than what she had budgeted for. Her insurance plan from UnitedHealth had a high deductible of $3,250, plus she would owe coinsurance. All told, her bills for the care she received related to the biopsy left her on the hook for $3,357.52, with her insurance paying $974.

“She shrugged it off,” Snitchler’s partner, Emi Aguilar, recalled. “But I could see that she was upset in her eyes.”

Snitchler panicked when she realized the bill threatened the couple’s financial security. Snitchler had already spent down her savings for a recent cross-country move to Austin, Texas.

In an email, Henry Ford spokesman David Olejarz said the “procedure was performed in the Interventional Radiology procedure room, where the imaging allows the biopsy to be much more precise.”

“We perform procedures in the most appropriate venue to ensure the highest standards of patient quality and safety,” Olejarz wrote.

The initial bill from Henry Ford referred to “operating room services.” The hospital later sent an itemized bill that referred to the charge for a treatment room in the radiology department. Both descriptions boil down to a facility fee, a common charge that has become controversial as hospitals search for additional streams of income, and as more patients complain they’ve been blindsided by these fees.

Hospital officials argue that medical centers need the boosted income to provide the expensive care sick patients require, 24 hours a day, 365 days a year.

But the way hospitals calculate facility fees is “a black box,” said Ted Doolittle, with the Office of the Healthcare Advocate for Connecticut, a state that has put a spotlight on the issue.

“It’s somewhat akin to a cover charge” at a club, said Doolittle, who previously served as deputy director of the federal Center for Program Integrity at the Centers for Medicare & Medicaid Services.

Hospitals in Connecticut billed more than $1 billion in facility fees in 2015 and 2016, according to state records. In 2015, Connecticut lawmakers approved a bill that forces all hospitals and medical providers to disclose facility fees upfront. Now patients in Connecticut “should never be charged a facility fee without being shown in burning scarlet letters that they are going to get charged this fee,” Doolittle said.

In Michigan, there’s no law requiring hospitals and other providers of health care services to inform patients of facility fees ahead of time.

Snitchler’s procedure took place on campus at Henry Ford’s main hospital site. When she got her bill, with its mention of “operating room services,” she was baffled. Snitchler said the room had “crazy medical equipment,” but she was still in her street clothes as a nurse numbed her cyst, and she was sent home in a matter of minutes.

With Snitchler’s permission, Kaiser Health News shared her itemized bill, biopsy results and explanation of benefits with Mark Weiss, a radiologist who leads MediCrew, a company in Flint, Mich., that helps patients navigate the health system.

Weiss said it probably wasn’t medically necessary for Snitchler to go to the hospital to receive good care. “Not all surgical procedures have to be done at a surgical center,” he said, noting that biopsies often can be done in an office-based treatment center.

Resolution: Hoping for a reasonable explanation — or even the discovery of a mistake — Snitchler called her insurance company and the hospital.

A representative at Henry Ford told her on the phone that the hospital isn’t “legally required” to inform patients of fees ahead of time.

In an email, Henry Ford spokesman Olejarz apologized for that response: “We’ll use it as a teachable moment for our staff. We are committed to being transparent with our patients about what we charge.”

He pointed to an initiative launched in 2018 that helps patients anticipate out-of-pocket expenses. The program targets the most common elective radiology and gastroenterology tests that often have high price tags for patients.

Asked if Snitchler’s ultrasound-guided needle biopsy will be included in the price transparency initiative, Olejarz replied, “Can’t say at this point.”

In addition to the pilot program to inform patients of fees, Olejarz said, the hospital also plans to roll out an online cost-estimator tool.

For now, Snitchler has decided not to get the cyst removed, and she plans to try to negotiate on her bill. She has not yet paid any portion of it.

“You should always negotiate; you should always try,” Doolittle said. “Doesn’t mean it’s going to work, but it can work. People should not be shy about it.”

“We are happy to work out a flexible payment plan that best meets her needs,” Olejarz wrote when Kaiser Health News first inquired about Snitchler’s bill.

The takeaway: When your doctor recommends an outpatient test or procedure like a biopsy, be aware that the hospital may be the most expensive place you can have it done. Ask your physician for recommendations of where else you might have the procedure, and then call each facility to try to get an estimate of the costs you’d face.

Also, be wary of places that may look like independent doctor’s offices but are owned by a hospital. These practices also can tack hefty facility fees onto your bill.

If you get a bill that seems inflated, call your hospital and insurer and try to negotiate it down.

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

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In announcing a crackdown Friday on companies it says were involved in fraudulent genetic testing, the U.S. Department of Justice brought charges against 35 individuals associated with dozens of telemarketing companies and testing labs.

The federal investigation, called Operation Double Helix, went after schemes that allegedly targeted people 65 and older. According to the charges, the schemes involved laboratories paying illegal kickbacks and bribes to medical professionals who were working with fraudulent telemarketers, in exchange for the referral of Medicare beneficiaries.

DOJ officials say the schemes cost the Medicare program more than $2 billion in unnecessary charges.

Among those charged were 10 medical professionals, including nine doctors.

“The elderly and disabled are being preyed upon,” says Joe Beemsterboer, senior deputy chief of the fraud section in the criminal division of the DOJ.

It was one of the largest health care fraud schemes in U.S. history, Beemsterboer, says, and it worked on many levels, involving many players — from “those collecting patient information, to those selling it, to those doctors corruptly prescribing these genetic tests, to the labs corruptly billing the Medicare program.”

According to Shimon Richmond, assistant Inspector General for investigations with the U.S. Department of Health and Human Services, this is how the alleged scheme worked: First, telemarketing companies trolled elderly Medicare beneficiaries online, or called them on the phone or even sent people to approach beneficiaries face-to-face at health fairs, senior centers, low-income housing areas or religious institutions like churches and synagogues.

Seniors were offered, at no cost to them, genetic testing to estimate their cancer risk or determine how well certain drugs would work for them. All they had to do, the elderly people were told, was provide their Medicare information, a copy of their driver’s license and a bit of DNA collected from a swab of saliva from inside their cheek.

The sales pitch also included lots of aggressive scare tactics, Richmond says, such as telling patients that if they didn’t have the testing done they could end up suffering from a variety of possibly fatal conditions.

Once recruiters got the information they wanted, they would try to get the patient’s own health care provider to write a prescription for the test. If that didn’t work, the recruiters asked one of their own cadre of doctors to write prescriptions for patients they didn’t know.

“And these doctors, in many cases, have zero contact with the patient and no knowledge of their health care situation or needs,” Richmond says.

The genetic test may have been offered free to the patients, but there was money to be made from Medicare reimbursement. Typically that payment – anywhere from $10,000 to $18,000 or more, Richmond says — would be split between the worker who recruited the patient, the doctor writing the prescription, the lab that did the test and the telemarketing company that organized the alleged scheme.

Often, the labs didn’t even send results to patients, Richmond says. And when they did there was no counseling or help interpreting the findings.

“So patients were left with a report that’s meaningless to them, and is certainly not providing them with any benefit in terms of their health care,” says Richmond.

The testing could also financially harm the patient down the road, he adds. For example, if, in the future, the patient’s legitimate doctor determines that the patient actually needs a genetic test for a certain condition, Medicare likely won’t cover it, citing an earlier payment.

The U.S. Department of Health and Human Services Office of Inspector General has previously issued a fraud alert for consumers in an effort to educate the public about such schemes.

Richmond says people who believe they may have been victimized by the schemes can call 1-800-HHS-TIPS, or they can file a complaint online.

If convicted, the defendants arrested Friday could face decades in prison, Beemsterboer says.

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