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Updated: 13 hours 35 min ago

Children With Disabilities Endure Long Waits For Life-Changing Medical Equipment

July 19, 2018

Bev Baker-Ajene waited so long to get an adult-sized wheelchair for her teenage daughter, Savitri, that she eventually forgot she’d ordered it.

For the better part of a year, Baker-Ajene pushed Savitri — who has cerebral palsy, spastic quadriplegia and epilepsy — in a child-sized chair that was too small for her. Baker-Ajene said she also has run into problems getting an appropriate shower chair for 17-year-old Savitri. Because of that, she mostly gives her daughter sponge baths in bed.

“It’s ridiculously difficult to get what you need for your child,” said the 62-year-old Clovis, Calif., resident and graphic designer. “I’m tired now. I try not to argue with people anymore, because I need my energy for her.”

Bev Baker-Ajene was frustrated trying to acquire an appropriate wheelchair and shower chair for her teenage daughter, Savitri, who has cerebral palsy, spastic quadriplegia and epilepsy. (Courtesy of Bev Baker-Ajene)

Many California children with serious health care needs often wait months, or even years, before they receive essential medical equipment like custom wheelchairs, shower chairs and hospital beds, according to a recent report.

For some children, these long waits aggravate existing health problems, cause pain and pressure sores, or exacerbate developmental delays, said the report, published in May by the Lucile Packard Foundation for Children’s Health.

“It’s a big bureaucratic mess, and kids are suffering,” said Maryann O’Sullivan, an independent health policy consultant and author of the report.

In one case Sullivan documented, a boy with muscular dystrophy started kindergarten in a stroller because his parents could not get him an appropriate wheelchair in time, in part due to the slow insurance approval process. In another case, a 7-year-old with a serious bone disorder has remained in diapers for years while waiting for a state public health program for children to find a vendor to supply him with a modified commode.

A variety of factors lead to the delays. Families say they are often bounced between private health insurance companies and publicly funded programs such as Medicare, Medi-Cal and California Children’s Services (CCS), which provides coverage for 200,000 children with special health care needs. Once families have navigated that bureaucratic maze to obtain approval for equipment, low reimbursement rates paid by some of the public insurers can make it difficult to find vendors willing to provide the equipment.

Juno Duenas, the executive director of the San Francisco-based Support for Families of Children With Disabilities, said appropriate equipment can be essential to a child’s independence, future job prospects and ability to contribute to society.

Many parents say they struggle to get equipment, in part, because they don’t understand the system. Yuki Baba, a 54-year-old translator who lives in Berkeley, Calif., waited a year to get a hospital bed for her son, Nate, who has cerebral palsy. At 5, Nate was still sleeping in a crib he’d outgrown. Nate is insured by both California Children’s Services and Medi-Cal, the state’s health insurance program for low-income people, and Baba kept calling the wrong program for help.

“Because I didn’t know the system very well, I wasted a lot of energy and time,” she said.

Even when the approval process is smooth, low rates paid by the government-funded programs California Children’s Services and Medi-Cal can mean there are sometimes no outside vendors willing to provide equipment.

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California Children’s Services covers treatments and therapies for children under 21 who meet income guidelines and have a range of eligible serious medical conditions, including cerebral palsy, traumatic injuries and cancer. Many of these children also are insured by Medi-Cal. Others have some private insurance coverage combined with CCS.

Dave Kramer-Urner, CCS administrator for Santa Cruz County, says he has a hard time finding vendors to provide padded bath benches, bidets and certain crutches because reimbursements from the program are low.

CCS rates haven’t changed in 10 years, he said. And the disappearance of small “mom and pop” vendors has exacerbated the problem. The last such vendor in Santa Cruz shut its doors three years ago, he said.

“The big companies have the capacity to say ‘no’ more easily,” he said.

O’Sullivan’s research relied on three existing surveys of parents, advocates and health care providers. She also interviewed dozens of medical therapists, nurses, physicians, vendors, advocates, parents and staff from Medi-Cal managed-care health plans.

O’Sullivan notes in her report that the California Department of Health Care Services, which administers both Medi-Cal and California Children’s Services, doesn’t track wait times for medical equipment and hasn’t set a minimum time frame for the delivery of such equipment.

Tony Cava, a spokesman for the department, said in an emailed statement that it “has been working for several years to improve health care and to emphasize quality and coordination of care for children and youth with special health care needs.”

The department will roll out a program in 21 counties in the coming months to coordinate health care under California Children’s Services and Medi-Cal, Cava said. The program should address many of the issues outlined in O’Sullivan’s report because it will reduce bureaucratic back-and-forth, he added.

However, the majority of children in the CCS program don’t live in those counties, so the changes won’t affect them.

Health Plan of San Mateo, which piloted the integration of Medi-Cal and CCS five years ago, has addressed many of the administrative hurdles detailed in the report, said Sophie Scheidlinger, the plan’s pediatric health manager. However, she continues to see delays due to a shortage of vendors willing to work with the public programs.

In the meantime, many parents fight to find workarounds — or just pay for things themselves.

Alison Beier’s son, Evan, was born two months early with renal failure, a malformed urinary tract and multiple congenital anomalies. While still an infant, Evan was stuck in the hospital for several days after doctors insisted that he needed an automated blood pressure monitor with an infant-sized cuff before they would release him. Neither his public nor private insurers would pay for one.

“Insurance wouldn’t pay for the monitor, we couldn’t afford the monitor, and we didn’t know how to get the monitor,” Beier said.

Eventually, Beier posted her problem on Facebook. A friend of a friend worked at the company that manufactured the monitor and was able to help her.

She feels blessed to have her son, who has gone through 50 surgeries and has battled rejection of his two transplanted kidneys since 2012. She describes him as a brilliant 8-year-old and “the happiest guy on the planet.” Still, advocating for his needs can be overwhelming.

“It’s like I’m always fighting for somebody to cover something,” she said.

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

Staggering Prices Slow Insurers’ Coverage Of CAR-T Cancer Therapy

July 17, 2018

Patients whose blood cancers have failed to respond to repeated rounds of chemotherapy may be candidates for a new type of gene therapy that could send their cancers into remission for years.

But the two approved therapies, with price tags of hundreds of thousands of dollars, have roiled the insurance approval process, leading to delays and, in some cases, denials of coverage, clinicians and analysts say.

The therapy involves collecting patients’ own T cells, a type of white blood cell, genetically modifying them, and then infusing them back into patients, where they hunt down and kill cancer cells. Known as CAR T-cell therapy, it has been called a “living drug.”

Two drugs, Kymriah and Yescarta, were approved last year to treat patients whose blood cancers haven’t responded to at least two other rounds of treatment. Kymriah is approved for people up to age 25 with a form of acute lymphoblastic leukemia, the most common cancer in children. Kymriah and Yescarta are both approved for adults with advanced lymphomas.

Researchers report that some critically ill patients who received the therapy have remained cancer-free for as long as five years.

“This is what patients need,” said Dr. Yi Lin, a hematologist who oversees the CAR-T cell practice and research for the Mayo Clinic. “With the likelihood of getting patients into durable survival, we don’t want to deny them the therapy.” She said she receives no personal financial support from the drugs’ makers.

But it comes at a cost. The drugs are hugely expensive. Kymriah and Yescarta cost $373,000 to treat adults with advanced lymphomas, while Kymriah costs $475,000 to treat acute lymphoblastic leukemia in children and young adults. In addition, many patients experience serious side effects that can land them in a hospital intensive care unit for weeks, pushing treatment costs more than $1 million.

All of this gives government and private insurers pause.

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Most commercial insurers are covering CAR-T therapies now, but they do so on an individual basis, writing single-patient agreements each time, said cancer experts. Large insurers that are already familiar with  complicated therapies like stem-cell transplants are getting speedier at handling CAR-T treatment requests, they said. But that’s not always the case at smaller or regional plans, where delays can add weeks to the approval process.

“A request for CAR-T may end up with somebody on the payer authorization team who doesn’t understand the technology or the urgency of the request, when somebody has only weeks or months to live,” said Stephanie Farnia, director of health policy and strategic relations at the American Society for Blood and Marrow Transplantation.

Farnia is in contact with many of the more than 50 medical centers that are authorized to provide treatment. The process of getting to a treatment center and evaluated for therapy is involved, she said, “to then be substantially delayed due to paperwork is incredibly frustrating” for patients.

Medicare and Medicaid often pose greater coverage challenges than do private insurers, according to insurance experts.

Some Medicaid programs don’t cover the treatment, said Dr. Michael Bishop, director of the cellular therapy program in the hematology-oncology section at the University of Chicago. Medicaid, the state-federal health program, covers children in low-income households and some adults.

“Medicaid has been very tough,” he said. “Certain states just deny coverage, even states with balanced budgets.”

Matt Salo, executive director of the National Association of Medicaid Directors, said states have to evaluate the cost as well as the drugs’ effectiveness. “Medicaid is a finite pot of money, and it’s stretched threadbare even on a good day,” he said.

People who are on Medicare, the health insurance program for people age 65 and older and some people with disabilities, typically haven’t faced coverage denials to date, clinicians say. But the government’s reimbursement rates are raising concerns for providers.

Last spring, Medicare announced payment rates for providers who administer Yescarta and Kymriah on an outpatient basis. The payments would more than cover the costs of the drugs. Medicare beneficiaries’ out-of-pocket costs would be capped at $1,340 plus their Part B deductible, if it hasn’t been met, the agency said.

The problem with this plan: Facilities typically provide treatment on an inpatient basis, because of the potential for severe, systemic side effects.

“There’s a lot of toxicity and questions about whether it can even be provided in an outpatient setting,” said Gary Goldstein, the business manager at the blood and marrow transplant program at Stanford Health Care in Stanford, Calif.

For inpatient care, “CAR T-cell therapy … would be paid at a much lower amount compared to outpatient hospital use,” according to officials at the Centers for Medicare & Medicaid Services.

The agency is considering how to handle payment for inpatient CAR-T care for the upcoming fiscal year that starts in October. For now, some medical centers are absorbing whatever Medicare doesn’t pay.

“How can you tell a patient who’s 66, ‘If only you’d gotten lymphoma when you were 64’? Goldstein asked.

But the current approach can’t continue indefinitely, he said.

“Even if there aren’t any centers that are making that decision today, if coverage doesn’t change for Medicare, it absolutely is going to be a problem tomorrow,” said Goldstein.

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Insurers Fall Short In Catching And Reporting Medicaid Fraud, Inspectors Find

July 12, 2018

[UPDATED at 5 p.m. ET]

Despite receiving billions of dollars in taxpayer money, Medicaid insurers are lax in ferreting out fraud and neglect to tell states about unscrupulous medical providers, according to a federal report released Thursday.

The U.S. Health and Human Services’ inspector general’s office said a third of the health plans it examined had referred fewer than 10 cases each of suspected fraud or abuse to state Medicaid officials in 2015 for further investigation. Two insurers in the program, which serves low-income Americans, didn’t identify a single case all year, the report found.

Some health plans terminated providers from their networks for fraud but didn’t inform the state. The inspectors said that could allow those doctors or providers to defraud other Medicaid insurers or other government programs in the same state.

In addition, some insurance companies failed to recover millions of dollars in overpayments made to doctors, home health agencies or other providers. The inspector general said insurers stood to benefit financially from this because higher costs can justify increased Medicaid rates in the future. (The report didn’t name specific insurers or states.)

Medicaid plans “are required by law to find fraud and abuse and to share information with states,” said Meridith Seife, a deputy regional inspector general in New York and a co-author of the report. “We are concerned anytime we see evidence that managed-care organizations are not doing that in a rigorous way. There’s a lot of taxpayer dollars at stake.”

In general, Medicaid has struggled for years with poor oversight and billions lost to improper payments, drawing regular scrutiny from federal auditors but little improvement. Authorities have found clinics overprescribing opioids to Medicaid patients and doctors running pill mills. Hospitals and other providers have falsified Medicaid claims, paid illegal kickbacks for patient referrals and billed for unnecessary services.

Health insurers serve about 55 million Medicaid patients across 38 states, and play an increasingly vital role in running the giant public insurance program. States generally split the cost of Medicaid with the federal government.

One in 5 Americans is on Medicaid and enrollment is poised to rise even further as more states consider expansion under the Affordable Care Act. About 75 percent of Medicaid patients are part of a privatized system in which managed-care companies are paid fixed fees per patient to coordinate their care. Big, publicly traded companies such as UnitedHealth, Anthem and Centene dominate the business. In some states like California, evidence shows the funding often flows to the plans with little oversight, sometimes regardless of their performance.

These companies tout their expertise at spotting suspicious billing patterns and chasing down criminals using sophisticated data mining, but the inspector general found that their fraud-fighting results don’t always match the rhetoric.

Andy Schneider, a former federal health official and now a research professor at Georgetown University’s Center for Children and Families, said the lack of reporting to states is “a big problem.”

“If states don’t know a provider has ripped off the managed-care organization, how can they protect other state programs or insurers from that behavior?” he said.

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Last year, new Obama-era rules went into effect that seek to strengthen fraud-detection efforts in Medicaid managed care. For now, the Trump administration has endorsed those changes.

Last month, the administration said they would monitor state compliance and conduct more audits. 

“With historic growth in Medicaid comes an urgent federal responsibility to ensure sound fiscal stewardship and oversight of the program,” Seema Verma, administrator of the Centers for Medicare & Medicaid Services, said in a statement last month.

In a May 17 response to the inspector general, Verma cited the Obama administration’s managed-care rules and she agreed with nearly all of the recommendations the inspector general made to help remedy the problems.

In the report, the inspector general’s office examined data from the health plan with the largest Medicaid spending in each of the 38 states with managed care. Inspectors also conducted interviews with officials and insurance companies in five states. Among the findings:

  • The 38 plans received $62.2 billion in federal and state money in 2015. That represents about a quarter of the $236 billion Medicaid plans received that year. That figure has grown to nearly $300 billion last year, or about half of Medicaid spending overall.
  • The health insurers identified $57.8 million in overpayments related to fraud or abuse during 2015. Health plans only recovered $12.5 million, or 22 percent, of those overpayments. (Four of the health plans found no such overpayments all year.)
  • Insurers performed better on erroneous billing and other overpayments not related to fraud. Health plans collected 68 percent of the $831.4 million they identified in 2015.

Insurance industry officials said health plans take their responsibility to protect the Medicaid program seriously and that the new rules at the federal level should address any shortcomings.

Jeff Myers, chief executive of Medicaid Health Plans of America, an industry trade group, said the problems identified by the inspector general’s office may not reflect health plan performance as much as differing approaches to state oversight and what information was required to be reported in 2015.

“The report suggests that, because there isn’t a massive reporting of cases, managed-care organizations are not adequately protecting the program. I don’t think that’s true,” Myers said. “The other limitation of the study is that most of these issues have in fact been addressed by the Medicaid managed-care rule.”

Myers pushed back on the inspectors’ suggestion that insurers are purposely ignoring wasteful spending in order to boost their own revenue and profits from states.

“States look very seriously at ways to reduce Medicaid spending because every dollar spent on Medicaid is a dollar not spent somewhere else,” Myers said.

Some health-policy experts said the federal report reflects the insurance industry’s resistance to what it perceives as meddling in its private business even though plans are participating in a public program. “This kind of behavior, like not reporting bad actors, is totally consistent with their broader philosophy of ‘It’s my money and let me run my business,’” said Schneider, the former federal official.

Christopher Koller, former Rhode Island health insurance commissioner, said states bear the responsibility to address these problems in their contracts with health plans.

“This is one more example of how state oversight can often be insufficient,” said Koller, president of the Milbank Memorial Fund, a foundation focused on health policy. “States who think they can outsource all of the work to the private-sector ‘experts’ are not serving their citizens well.”

In 2015, the 38 health plans examined by inspectors collectively took 2,668 corrective actions, such as payment suspensions, against providers suspected of fraud or abuse, according to the report.

Eighteen health plans canceled contracts for a total of 179 providers “for cause” in 2015. Three of those insurers said they didn’t typically notify the state of provider terminations.

Now the new Medicaid regulations require insurers to notify states about providers’ terminations and other changes in their status, according to the report.

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

Listen: A Sudden Freeze On ACA Payouts And What It Means For You

July 11, 2018

Over the weekend, Seema Verma, administrator for the federal Centers for Medicare & Medicaid Services, said she was suspending $10 billion in “risk adjustment” payments that helped stabilize the insurance markets created under the health law.

Julie Rovner, chief Washington correspondent and host of KHN’s “What the Health?” podcast, explains the national picture on “The Takeaway” for WNYC:
Can’t see the audio player? Click here to download.

Chad Terhune, senior correspondent, explains the effects of this development in California and other states for South California Public Radio:
Can’t see the audio player? Click here to download.

They examine what health insurers and Covered California officials have described as another curveball from the Trump administration meant to weaken the Affordable Care Act.

Verma said the “risk-adjustment” payments and collections had to be halted in response to a New Mexico court ruling in February that said elements of the program were flawed. Another court in Massachusetts had upheld the program in January.

The risk-adjustment program was meant to stabilize the insurance exchanges by taking money made through low-risk consumers and shifting it to higher-risk pools. The federal government collects money from some insurers that enrolled healthier patients and then transfers money to other insurers who had sicker enrollees.

Because the Affordable Care Act requires insurers to accept all people regardless of their medical history or preexisting conditions, architects of the law created the program to prevent insurance companies from cherry-picking the healthiest people.

The Republican-led Congress failed last year to repeal and replace the ACA. However, Republican lawmakers and the Trump administration have made a series of moves intended to weaken the health law, such as halting subsidies that covered some consumers’ out-of-pocket costs and eliminating the penalty.

Can Insurers Use Genetic Testing Results? A Reader Wants To Know

July 10, 2018

This week, I answer questions from readers concerned about health insurance roadblocks in the face of a serious illness or medical crisis.

Q: I think genetic testing could be a great tool for physicians. My fear is what the insurance industry will do with the information, especially in today’s political climate. Could they decide that you have a preexisting condition and charge a higher rate, or not cover you at all?

No, they can’t do that — not now, anyway. Under the Genetic Information Nondiscrimination Act (GINA) of 2008, health insurers can’t use your genetic information, including your family medical history, genetic test results and genetic counseling or other genetic services, to discriminate against you.

That means health insurers can’t use your genetic information when making decisions about your eligibility for health insurance, coverage terms or how much you’ll pay.

If you develop symptoms of a disease or are diagnosed with a medical condition, however, GINA no longer protects you. That’s where the Affordable Care Act steps in. It prohibits health plans from turning people down or charging them more because they have a preexisting condition.

“GINA did something good, and the ACA was the next important step,” said Sonia Mateu Suter, a law professor at George Washington University who specializes in genetics and the law.

However, last month the Trump administration said it won’t defend that part of the law, which is being challenged in a lawsuit brought by the attorneys general of 20 states.

The administration said that since the penalty for not having health insurance has been eliminated starting in 2019, the provisions that guarantee coverage to people with preexisting conditions and prohibit insurers from charging them higher premiums should be struck down as well.

The issue is a priority with voters. In a June poll by the Kaiser Family Foundation, two-thirds of voters said that continuing protections for people with preexisting conditions was either the single most important factor or very important in their vote during the elections this fall. (Kaiser Health News is an editorially independent program of the foundation.)

Q: My husband fainted in the middle of the night. He received an MRI at a hospital emergency department in Kingston, N.Y., that is not in our insurance network.

Two months later, we received a bill for $23,657.39. Our insurance company paid $3,226.40, or 90 percent of what they considered to be a reasonable cost for the services provided. Our bill was for the balance.

Even though New York has a law that protects consumers against surprise medical bills, I learned that it doesn’t apply to us because our health plan is “self-funded.” Is there anything else that we can do?

You’re in a tough spot. The ACA prohibits most plans from charging consumers more in copayments and coinsurance for out-of-network emergency care than they’d owe if they were at an in-network facility.

But federal law doesn’t prevent out-of-network providers from billing consumers for the balance when a health plan doesn’t pay in full. This can happen because the plan doesn’t have negotiated rates with providers that aren’t in the network.

New York is one of six states that have laws with comprehensive protection for consumers against so-called surprise bills, according to an analysis by researchers at Georgetown University’s Health Policy Institute that was published by the Commonwealth Fund last year.

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The others are California, Connecticut, Florida, Illinois and Maryland. Another 15 states have limited consumer protections in this area.

But self-funded plans such as yours, in which your employer pays medical claims directly instead of buying an insurance policy for that purpose, are exempt from this type of state regulation.

In this circumstance, your company’s human resources department may be your best bet, said Jack Hoadley, research professor emeritus at Georgetown’s Health Policy Institute, who co-authored the Commonwealth analysis.

“The employer may say, ‘I feel an obligation to my employee and we’ll cover this,’” he said. “But they can choose not to do that.”

Q: My wife has been taking Avonex for multiple sclerosis for 20 years. Our health plan’s coverage changed this year, but Express Scripts, which manages our pharmacy benefit, didn’t communicate the change until after it took effect. They mailed us a month’s worth of Avonex in February, and a few weeks later we received an invoice for $6,000. Express Scripts would not let us return the medicine for a refund. They said that they explained we would be billed that amount when they called to remind us we were due for a refill, but that’s not true. Do we have any recourse?

There is no easy answer for you. If you go to a brick-and-mortar pharmacy to pick up a prescription and you think the cost is too high, you can refuse the medication at the counter and walk away. But that’s not generally possible with a mail-order prescription. Once it arrives, it’s yours.

“The chain of custody is broken,” said Jennifer Luddy, a spokeswoman for Express Scripts, which manages the pharmacy benefits for companies and insurers. “We don’t know if it’s been opened or tampered with.”

Luddy said that typically employers communicate changes to workers’ pharmacy benefits for the upcoming year during the annual open-enrollment period. On an ongoing basis, drug copayment information is also available through the Express Scripts’ website, mobile app or by phone, she said.

However, there may be other factors to consider, say patient advocates. For example, about half of people with multiple sclerosis have cognitive problems, said Bari Talente, executive vice president of advocacy at the National Multiple Sclerosis Society.

“People need to make sure that the person who’s taking the drug really understands that the cost is changing,” Talente said.

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A Baby Was Treated With A Nap And A Bottle Of Formula. The Bill Was $18,000.

July 02, 2018

On the first morning of Jang Yeo Im’s vacation to San Francisco in 2016, her 8-month-old son, Park Jeong Whan, fell off the bed in the family’s hotel room and hit his head.

There was no blood, but the baby was inconsolable. Jang and her husband worried he might have an injury they couldn’t see, so they called 911, and an ambulance took the family — tourists from South Korea — to Zuckerberg San Francisco General Hospital (SFGH).

The doctors at the hospital quickly determined that baby Jeong Whan was fine — just a little bruising on his nose and forehead. He took a short nap in his mother’s arms, drank some infant formula and was discharged a few hours later with a clean bill of health. The family continued their vacation, and the incident was quickly forgotten.

Two years later, the bill finally arrived at their home: They owed the hospital $18,836 for a visit lasting three hours and 22 minutes, the bulk of which was for a mysterious fee for $15,666 labeled “trauma activation,” also known as “a trauma response fee.”

A photo of Park Jeong Whan at Zuckerberg San Francisco General Hospital after his admission shows bruise marks on the forehead and nose from his fall.(Jun Michael Park for Vox)

“It’s a huge amount of money for my family,” said Jang, whose family had travel insurance that would cover only $5,000. “If my baby got special treatment, OK. That would be OK. But he didn’t. So why should I have to pay the bill? They did nothing for my son.”

American hospital bills are today littered with multiplying fees, many of which don’t even exist in other countries: fees for blood draws, fees for checking the blood oxygen level with a skin probe, fees for putting on a cast, minute-by-minute fees for lying in the recovery room.

But perhaps the pinnacle is the “trauma fee,” in part because it often runs more than $10,000 and in part because it seems to be applied so arbitrarily.

A trauma fee is the price a trauma center charges when it activates and assembles a team of medical professionals that can meet a patient with potentially serious injuries in the ER. It is billed on top of the hospital’s emergency room physician charge and procedures, equipment and facility fees.

Emergency room bills collected by Vox and Kaiser Health News show that trauma fees are expensive and vary widely from one hospital to another.

The medical bill for $18,836 from Zuckerberg San Francisco General Hospital. (Jun Michael Park for Vox)

The Jang family near their apartment complex in Suwon, an hour south of Seoul, South Korea. (Jun Michael Park for Vox)

Charges ranged from $1,112 at a hospital in Missouri to $50,659 at a hospital in California, according to Medliminal, a company that helps insurers and employers around the country identify medical billing errors.

“It’s like the Wild West. Any trauma center can decide what their activation fee is,” says Dr. Renee Hsia, director of health policy studies in the emergency medicine department at the University of California-San Francisco.

Hsia is also an emergency medicine doctor at Zuckerberg San Francisco General Hospital, but was not involved in the care of the patients discussed in the story — and spoke about the fees generally.

Comprehensive data from the Health Care Cost Institute shows that the average price that health insurers paid hospitals for trauma response (which is often lower than what the hospital charges) was $3,968 in 2016. But hospitals in the lowest 10 percent of prices received an average of $725 — while hospitals in the most expensive 10 percent were paid $13,525.

Data from Amino, a health cost transparency company, shows the same trend. On average, Medicare pays just $957.50 for the fee.

According to Medicare guidelines, the fee can be charged only when the patient receives at least 30 minutes of critical care provided by a trauma team — but hospitals do not appear to be following that rule when billing non-Medicare patients.

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At the turn of the century such fees didn’t even exist.

But today many insurers willingly pay them, albeit at negotiated rates for hospitals in their networks. Six insurers and industry groups declined to discuss the fees, and a spokeswoman for America’s Health Insurance Plans, the industry trade group, said, “We have not seen any concerning trends surrounding trauma center fees.”

Trauma centers argue that these fees are necessary to train and maintain a full roster of trauma doctors, from surgeons to anesthesiologists, on-call and able to respond to medical emergencies at all times.

SFGH spokesman Brent Andrew defended the hospital’s fee of over $15,000 even though the baby didn’t require those services.

”We are the trauma center for a very large, very densely populated area. We deal with so many traumas in this city — car accidents, mass shootings, multiple vehicle collisions,” said Andrew. “It’s expensive to prepare for that.”

At What Cost Trauma?

Experts who’ve studied trauma fees say that at some hospitals there’s little rationale behind how hospitals calculate the charge and when the fee is billed. But, of course, those decisions have tremendous financial implications.

After Alexa Sulvetta, a 30-year-old nurse, broke her ankle while rock climbing at a San Francisco gym in January, she faced an out-of-pocket bill of $31,250 bill.

An ambulance also brought Sulvetta to Zuckerberg San Francisco General Hospital, where, she recalled, “my foot was twisted sideways. I had been given morphine in the ambulance.”

Sulvetta was evaluated by an emergency medicine doctor and sent for emergency surgery. She was discharged the next day.

Alexa Sulvetta and her husband, Ben Verley, at their home in Oakland, Calif.(Heidi de Marco/KHN)

SFGH also charged Sulvetta a $15,666 trauma response fee, a hefty chunk of her $113,338 bill. Her insurance decided that the hospital fees for the one-day stay were too high, and — after negotiations — agreed to pay only a charge it deemed reasonable. The hospital then went after Sulvetta for $31,250.

“My husband and I were starting to think about buying a house, but we keep putting that off because we might need to use our life savings to pay this bill,” she said.

SFGH spokesman Andrew, meanwhile, said that the hospital is justified in pursuing the bill. “It’s fairly typical for us to pursue patients when there are unpaid balances,” he said. “This is not an uncommon thing.”

Alexa Sulvetta’s hospital bill, including the $15,666 trauma response fee. (Heidi de Marco/KHN)

Ben Verley points out his wife’s scar, left after she broke her ankle rock climbing at a San Francisco gym. (Heidi de Marco/KHN)

‘I Feel Like I Created A Monster’

Trauma response fees were first approved by the National Uniform Billing Committee in January 2002, following a push by a national consulting firm specializing in trauma care. The high costs of staffing a trauma team available at all hours, the firm argued, threatened to shut down trauma centers across the country.

Trauma centers require special certification to provide emergency care for patients suffering very serious injuries above and beyond a regular emergency department.

“We were keeping an ongoing list of trauma centers that were closing all over the country,” said Connie Potter, who was executive director of the firm that succeeded in getting the fee approved. She now consults with hospital trauma centers on how to bill appropriately.

Trauma teams are activated by medics in the field, who radio the hospital to announce they are arriving with a trauma patient. The physician or nurse who receives the call then decides whether a full or partial trauma team is needed, which results in different fees. Potter said that person can also activate the trauma team based on the consultation with the EMTs.

But reports from the field are often fragmentary and there is much discretion in when to alert the trauma team.

An alert means paging a wide range of medical staff to stand at the ready, which may include a trauma surgeon, who may not be in the hospital.

Potter said if the patient arrives and does not require at least 30 minutes of critical care, the trauma center is supposed to downgrade the fee to a regular emergency room visit and bill at a lower rate, but many do not do so.

Hospitals were supposed to come up with the fee for this service by looking at the actual costs of activating the trauma team, and then dividing it over the amount that their patients are likely to pay. Hospitals that see a lot of uninsured and Medicaid patients might charge more to patients with private insurance to make up for possible losses.

But soon, Potter said, some hospitals began abusing the fee by charging an exorbitant amount that seemed to be based on the whims of executives rather than actual costs.

“To a degree, I feel like I created a monster,” Potter said. “Some hospitals are turning this into a cash cow on the backs of patients.”

The $15,666 is San Francisco General’s low-level trauma response fee. The high-level response fee in which the trauma surgeon is called into action is $30,206. The hospital would not provide a breakdown of how these fees are calculated.

Unfortunately, outside of Medicare and state hospitals, regulators have little sway over how much is charged. And at public hospitals, such fees may be a way to balance government budgets. At SFGH, the $30,206 higher-level trauma response fee, which increased by about $2,000 last year, was approved by the San Francisco Board of Supervisors.

An Ibuprofen, Two Medical Staples — And A $26,998 Bill

Some patients question whether their particular cases ought to include a trauma fee at all — and experts think they’re right to do so.

Sam Hausen, 28, was charged a $22,550 trauma response fee for his visit to Queen of the Valley Medical Center in Napa, Calif., in January.

An ambulance brought him to the Level 3 trauma center after a minor motorcycle accident, when he took a turn too quickly and fell from his bike. Records show that he was alert with normal vital signs during the 4-mile ambulance ride, and that the ambulance staff alerted the hospital that the incoming patient had traumatic injuries.

He was at the hospital for only about half an hour for a minor cut on his head, and he didn’t even need X-rays, CAT scans or a blood test.

Sam Hausen was charged a $22,550 trauma response fee for his visit to Queen of the Valley Medical Center in Napa, Calif., after a motorcycle accident.(Heidi de Marco/KHN)

“The only things I got were ibuprofen, two staples and a saline injection. Those were the only services rendered. I was conscious and lucid for the whole thing,” said Hausen.

But because the ambulance medics called for a trauma team, the total for the visit came to $26,998 — and the vast majority of that was the $22,550 trauma response fee.

Queen of the Valley Medical Center defended the charge. “Trauma team activation does not mean every patient will consult with and/or be cared for by a trauma surgeon,” spokeswoman Vanessa deGier said over email. “The activation engages a team of medical professionals. Which professional assesses and cares for a trauma patient depends on the needs and injury/illness of the patient.”

Guidelines for trauma activation are written broadly on purpose, in order to make sure they don’t miss any emergencies that could otherwise kill patients, said Dr. Daniel Margulies, a trauma surgeon at Cedars-Sinai in Los Angeles and chair of the American College of Surgeons committee on trauma center verification and review. Internal injuries, for example, can be difficult to diagnose at the scene of an accident.

“If you had someone who needed a trauma team and didn’t get called, they could die,” he said.

Medics err on the side of caution when calling in trauma patients to avoid missing a true emergency. To that end, the American College of Surgeons says it is acceptable to “overtriage,” summoning the trauma team for 25-35 percent of patients who don’t end up needing it.

But that logic leaves health consumers like Jang, Sulvetta and Hausen with tens of thousands in potential debt for care they didn’t ask for or need, care that is ordered out of an abundance of caution — a judgment call by an ambulance worker, a triage nurse or a physician — based on scant information received over a phone.

Jeong Whan had fallen 3 feet from a hotel bed onto a carpeted floor when his nervous parents summoned an ambulance. By the time the EMTs arrived, Jeong Whan was “crawling on the bed, not appearing to be in any distress,” according to the ambulance records. The EMTs called SFGH and, after a consultation with a physician, transported Jeong Whan as a trauma patient, likely because of the baby’s young age.

At the hospital, Jeong Whan was evaluated briefly by a triage nurse and sent to an emergency department resuscitation bay.

Jang recalls being greeted by nine or 10 providers at the hospital, but the baby’s medical records from the visit do not mention a trauma team being present, according to Teresa Brown of Medliminal, who reviewed the case.

Jeong Whan was discharged with a clean bill of health after staying at Zuckerberg San Francisco General Hospital for a couple of hours. Jang Yeo Im claims that he didn’t receive any medical treatment at the hospital and she put the Band-Aid on her son’s nose herself.(Jun Michael Park for Vox)

The baby appeared to have no signs of major injury, and no critical care was required. Five minutes later, the family was transferred to an exam room for observation before being released a few hours later. Brown said she would dispute the $15,666 trauma response fee because the family does not appear to have received 30 minutes of critical care from a trauma team.

Jang currently has a patient advocate working on her behalf to try to negotiate the bill with the hospital. She said she fears that the pending medical debt could prevent her from getting a visa to visit New York and Chicago, which she hopes to do in the next few years.

She said her experience with the U.S. health care system and its fees has been shocking. “I like the USA. There are many things to see when traveling,” she said. “But the health care system in USA was very bad.”

This story was produced in collaboration with Vox, which is collecting emergency room bills as part of a year-long project focused on American health care prices.

KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

Readers And Tweeters Let Loose Over Kids Being Detained At The Border — And More

June 29, 2018

Letters to the Editor is a periodic Kaiser Health News feature. KHN welcomes all comments and will publish a selection. We edit for length and clarity and require full names.

Kaiser Health News’ June 20 scoop on the exact number of children under age 13 who had been detained at the border under the Trump administration’s “zero tolerance” immigration policy got wide attention, including from investigative news outlet ProPublica and Hollywood legend Mia Farrow:

What about the 2322 children under 12 years old, who are currently being detained by Trump administration? When will they be united with their parents? What is the process?

— Mia Farrow (@MiaFarrow) June 20, 2018

In walking back into the past, we are now in the year 1941!

— Andrej Mrevlje (@andrejmrevlje) June 21, 2018

— Andrej Mrevlje, founder and editor of Yonder, Washington, D.C.

‘Pain Pills’ Or Intoxicants?

A thought on Julie Appleby’s article about opioid duration (“Doling Out Pain Pills Post-Surgery: An Ingrown Toenail Not The Same As A Bypass,” June 22): Our words form our ideas. A “pain pill” stops pain from occurring. Opioids do not do this. Intoxicants stop us from perceiving pain. Opioid meds do this.

What would happen if we called opioids “intoxicants”?

There are times when an intoxicant is appropriate. I had knee surgery, and it’s best to be intoxicated to endure that. Afterward, I took half a narcotic. Of course, my knee hurt. But the pain had meaning: that I was healing and things would get better.

I have been an ER doctor for 33 years, since before the so-called opioid epidemic began. I now tell patients to whom I’m giving opioids that I’m giving them permission to be drunk when that is what they need — and not when they don’t.

— Dr. Tom Benzoni, Des Moines

A Kentucky surgeon voices his concern that the patients’ needs could get lost amid prescriptive formulas for how many opioids are needed post-surgery.

“no one should be given more than five or 10 opioid tablets after a cesarean section.” Seriously? This "research" is beneath the level expected of @HopkinsMedicine -Someone should tell these surgeons that they treat patients – not procedures. @AAPSonline

— Confluential Truth (@jamespmurphymd) June 25, 2018

— Dr. James Murphy, Louisville

One D.C. source hopes to put readers wise to the teenage black market of pain pills following wisdom teeth extractions.

I know teens who get a 10 day supply for wisdom teeth. Then they stash about 50% of them (day 5) for distribution later to friends.

— Lucia Savage (@SavageLucia) June 22, 2018

— Lucia Savage, Washington, D.C.

Extra Pointer On Poison Ivy

Very good article on poison ivy (“Poison Ivy, A ‘Familiar Stranger’ That Could Ruin Your Summer,” June 11). Something you might want to add in future discussions, though, is that the sap of the tropical mango tree has the same oil that causes a reaction from poison ivy contact. Few people realize this, but even when buying fresh mangoes in the store, this sticky sap that is around the broken stem can give the same kind of painful rash as poison ivy does.

— Keith Cheshire, East Palatka, Fla.

Opening Up About Stigma

I wish Kate Spade’s family would come forth and share their true experiences surrounding her illness (“Kate Spade’s Death Ignites Concern About Rising Suicide Rate,” June 7). Substance abuse and mental illness need to be openly discussed to take away the stigma, so those who need help aren’t judged and receive proper care.

— Debbie Strobl, St. Louis

Concerning bipolar disorder, otherwise known as manic-depressive illness: Bipolar II is not “milder” than bipolar I. It’s different. The degree of mania is less extreme, but the periods of depression tend to be much longer. Misdiagnosis as merely depression is likely, which can lead to ineffective medication. The point I would have liked Liz Szabo’s story to emphasize about Ms. Spade is that while her treatment did not prevent her suicide, it may well have delayed it. Treatment is not always successful, but not treating serious mental illness guarantees poor outcomes.

— Candy Clouston, Plainfield, Ill.

My Own Private ‘A-Ha’ Moment

Your reporting on Montana’s state health plan (‘Holy Cow’ Moment Changes How Montana’s State Health Plan Does Business,” June 20) is right-on … kinda sorta. A long time ago, I worked for six different small to medium rural hospitals in several states and sections of the country from the late 1970s until 2008. What Montana has done is crude but useful.

I had often thought that Medicare’s “cost-based” system needed improvement. The introduction of the diagnosis-based reimbursement was a step in the right direction: rewarding hospitals able to provide specific services economically (comparatively) without subsidy for other services that cannot be provided at a reasonable cost. I thought that paying average costs was a way to shift funds away from the most expensive hospitals to small and rural hospitals, which have much lower costs. But, alas, these strategies were bastardized and manipulated.

I finally quit financial management of hospitals when I realized I had reached a point where I had to cut back on nursing to be able to pay for clerks and systems to maximize coding of the billing. I applaud Montana for its relatively simple system. But I reserve my enthusiasm for the fact that a smarter man than most, W. Edwards Deming, described the health care system as the most complex industry in the U.S.

I think his 60-year-old observation holds up. My belief is that there is no really good method of health care financial design. But, obviously, all others are better than what we have in this country.

— Mike Thomas, Kalama, Wash.

Back-And-Forth On Nursing Homes

As a former nursing home administrator and an attorney representing skilled nursing facilities, I found that this article (“Neglect Unchecked: Medicare Takes Aim At Boomerang Hospitalizations Of Nursing Home Patients,” June 13) incorrectly argued that skilled nursing facilities are financially incentivized to transfer patients to the hospital and that financial considerations increase transfer rates.

First, the examples of financial burdens are incorrect: Physicians directly bill the residents’ insurance for examinations and “stat” lab tests are simply not a significant cost much less one that would be alleviated by a hospital transfer. Second, Medicaid residents do not usually return with up to 100 days of higher Medicare reimbursement because: (1) residents don’t often stay in the hospital long enough for the three-midnight qualifying stay; (2) residents may have already used their 100 days; and (3) long-term residents may not meet Medicare’s criteria to be a “skilled” patient (e.g. making enough progress with physical therapy).

The issue of hospital readmission requires a balancing act of minimizing unnecessary transfers to the hospital without creating a chilling effect that would discourage appropriate transfers.  However, the tendency to sensationalize articles about skilled nursing facilities with unrelated allegations of poor patient care leaves little room for a discussion regarding hospital readmissions or other important topics involving skilled nursing facilities and/or the provision of care to elderly patients with complex, chronic and progressive diseases.

— Tara Murray, Sausalito, Calif.

Father’s And Son’s Injuries Lead To The Mother Of All Therapy Bills

June 29, 2018

Angel Dean Lopez is a Hollywood television writer and father who enjoys doing projects with his three kids. Every fall, he helps them transform 7-inch-long blocks of wood into whimsical race cars for the neighborhood’s annual Pinewood Derby in the Los Feliz area of Los Angeles.

“So you have to take your block of wood, shape it, sand it, paint it, use your imagination,” Lopez said, pointing to some favorites from derbies past that sit on a shelf in his home office — cars in the shape of an ice cream cone, a penguin and an Altoids peppermint box.

But one derby project lives in infamy: an S. Pellegrino bottle on wheels. It was the brainchild of his son Theo, then 9, in the fall of 2016, a time when Lopez recalls he was frantically busy at work.

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“I was in a hurry and I did a horrible thing,” he said, recalling how his hand slipped as he was using a handheld power tool called a router with a fast-spinning, blade that shaves and shapes wood. He had flipped the machine over to try to save time. Improvising was a bad idea.

After surgery and a two-day hospital stay, Lopez returned home with his pinkie finger sewn together at an odd angle and his right hand immobilized in a cast.

Then, about a week later, it was déjà vu — Theo seriously injured his hand carving a Halloween pumpkin.

“My knife got stuck and my fingers slipped down the blade,” Theo recalled. He cut down to the tendon of his pinkie finger and required a complex surgical repair. Surprisingly, he said it didn’t hurt.

Following their surgeries, doctors ordered father and son to undertake numerous rounds of occupational therapy to help them regain full use of their hands.

Theo Lopez, 11, seriously injured his right hand and fingers while carving Halloween pumpkins at age 9. (Heidi de Marco/KHN)

Angel Dean Lopez holds the power tool that sliced his finger. (Heidi de Marco/KHN)

For Theo, therapy lasted about a year. For Lopez, it was several months and then repeated after follow-up surgery. The healing went well for both, and Lopez was pleased. Lopez has insurance through the Writers Guild of America, and has always been happy with its low premiums and deductibles. He wasn’t worried about coverage for this specialized occupational therapy that both father and son clearly needed.

And then the bills came.

Patients: Angel Dean Lopez, a television writer, Los Angeles. Theo Lopez, 11, student, Los Angeles.

Total bill: $10,190 for occupational therapy for two patients, father and son. Of that total, the Lopez family paid $8,561 — $4,836 for son Theo and $3,725 for dad Angel.

Service providers: Children’s Hospital Los Angeles for Theo Lopez; Cedars-Sinai Medical Center Hand Therapy Clinic for Angel Dean Lopez.

Medical procedures: Angel had reconstructive plastic surgery on three fingers as well as a second surgery to remove a pin stabilizing his fourth finger; he was in a cast for two months. Theo also had reconstructive plastic surgery to repair his tendon.

After such injuries, patients typically need sessions of occupational therapy where specialists use techniques such as massage, strengthening and stretching exercises to regain normal function and movement. Both father and son needed custom splints made and tweaked by the therapists throughout the healing.

Lopez said if it weren’t for the odd coincidence of two family members requiring the same medical care at the same time, he may have let all this slide. But the financial double whammy has left him facing thousands in out-of-pocket costs that he wasn’t expecting.

What Gives: Lopez’s Writers Guild of America insurance covers and paid $60 for each occupational therapy visit. The providers charge a list price of over $500 per session, an amount that was reduced to about $325 when billed to the insurer because of its negotiated discounts.

The proper rate for occupational (and physical) therapy is a bone of contention between insurers and therapists. And the Lopez family is caught in the middle, in need of treatments to regain full use of their hands so Angel can again type his television scripts and Theo can again play bluegrass music on his fiddle.

The union’s payment of a flat fee of $60 “is lower than any private insurer we’ve seen,” said Randall Steward, vice president of enterprise contracting and payor relations at Children’s Hospital Los Angeles. But rates insurers pay for occupational or physical therapy are highly variable.

Medicare would pay $124 per 45-minute session for occupational therapy — more than double what Lopez’s insurer paid. Healthcare Bluebook, a company that analyzes claims data for consumers and hospitals, pegs the fair range in Los Angeles between $204 and $252 per 45-minute session.

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The Writers Guild declined to comment for this article, but one reason its rate is so low is that it classifies occupational and physical therapy not as ancillary medical services but as alternative treatment, on par with acupuncture and chiropractic care, according to insurance policy documents provided by Lopez.

“This is not typical. I’ve worked for payors and hospitals now for close to 25 years,” Steward said. “I’ve never seen an insurance plan categorize occupational and physical therapy, as this plan does, as an alternative treatment.”

Also, because of that categorization in Lopez’s plan, the amount not covered by insurance that Lopez has to pay out-of-pocket does not even count toward the family’s “out-of-pocket maximum” — that’s when the sum of deductibles, premiums and other charges reaches a threshold that triggers the insurer to pick up the remainder of the tab.

Sharmila Sandhu, who is counsel and director of regulatory affairs for the American Occupational Therapy Association, said that insurers are using various techniques to limit payouts, leaving patients on the hook for bigger bills. “We are finding that insurance companies are increasing the copayment amounts for occupational therapy services or identifying other ways to limit the frequency or duration of visits a client can access,” Sandhu said.

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The Resolution: Lopez appealed the decision in a four-page letter to the Writers Guild of America claims department. The Writers Guild health policy denied the appeal. Lopez said a representative for the union told him it would be reviewing its reimbursement policy for occupational therapy.

The Takeaway: Remember that occupational and physical therapy rates vary considerably and health insurers vary greatly in their coverage. Out-of-pocket payments can really add up since almost all patients need a number of sessions.

Ask questions about how your insurance will cover those services as they are prescribed by your doctor. If you feel it is inadequate, negotiate with both the insurer and the provider. If the costs are unaffordable, ask your prescribing doctor if a more limited course of therapy would do the trick.

This is a monthly feature from Kaiser Health News and NPR that dissects and explains real medical bills in order to shed light on U.S. health care prices and to help patients learn how to be more active in managing costs. Do you have a medical bill that you’d like us to see and scrutinize? Submit it here and tell us the story behind it.

KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

Gawande’s Goal Is Providing The ‘Right’ Health Care In New Venture By 3 Firms

June 26, 2018

Dr. Atul Gawande, the famed surgeon-writer-researcher chosen to lead a joint health venture by three prominent employers to bring down health costs, said his biggest goal is to help professionals “make it simpler to do the right thing” in delivering care to patients.

His comments at the Aspen Ideas Festival came just days after being named chief executive of a health care partnership unveiled earlier this year by Amazon, Berkshire Hathaway and JP Morgan Chase & Co. The new enterprise will oversee health coverage for about 1.2 million employees of the companies and their families. Gawande said he will focus on the same behaviors by doctors and hospitals that he studies at his Boston-based think tank Ariadne Labs.

One of the biggest problems in health care is that “doing the right thing is incredibly complicated” and that one of the biggest sources of waste in the system is that patients are given “the wrong care in the wrong way at the wrong time,” he said

He said he hopes to find specific ways to make health care more efficient and the solutions exportable.

“The opportunities are as long as my arm,” he said. “So all we have to do in this new venture is pick a few of them and try to bat them out of the park.”

For example, he said, even in countries where everyone is covered by insurance only about half of those with high blood pressure have it controlled. In the U.S. that percentage is closer to 40 percent. And while Americans spend “tons more money” to treat low back pain, he said, “the level of disability and pain has changed not at all.”

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Gawande, 52, was purposely vague about his new job — which he will add to his long list of activities, including teaching at Harvard and operating on patients at a university-affiliated hospital in Boston, writing for The New Yorker and serving as chairman of Ariadne Labs.

“We are going to come up with a name, it’s one of my first jobs,” he joked to interviewer Judy Woodruff of “PBS NewsHour” during a session at Aspen on Saturday. On Monday, at another session, he told The New York Times’ David Leonhardt that he “had no idea” how many employees would eventually come to work for the organization, although it will be a stand-alone, not-for-profit entity. He declined a separate interview.

But Gawande did talk at length in both appearances about his approach to the new initiative.

“The largest concept here is I get to have a million patients that I as a doctor get to add to my responsibility,” he said Saturday. “And my job to them is to figure out ways that we are going to drive better outcomes, better satisfaction with care and better cost efficiency with new models that can be incubated for all.”

That is essentially what Ariadne already does — tests ways to make care more effective and efficient and spreading those practices in the U.S. and abroad.

As an example, he talked about his mother’s recent knee replacement. A total of 66 health workers saw her in the hospital — he counted — and often provided conflicting advice about whether she should be up or in bed or exactly what she should be doing.

“And you just want to say, ‘Is anybody in charge?’” he said. “That’s the broken system.” The system is moving “from individual delivery of stuff … to team delivery of outcomes. And that’s a radically different place.” He wants to help make that transition more effective.

Gawande said his research has also shown that “the right care” can’t just be dictated. He developed a now-famous surgical checklist that was later mandated for doctors in Canada. But he pointed out in his discussion Saturday that the requirement showed no reduction in surgery-related mortality. Yet in Scotland, where the implementation was more gradual and more data-driven, he said, “in the first three years we saw a more than 25 percent reduction in deaths.”

Gawande said that although he is going to work for companies that provide insurance to their workers, “employer-based care is broken,” with the vast majority of new jobs lackinghealth insurance.

And even those workers who are offered job-based health insurance are increasingly priced out of care. Some people he grew up with in Ohio, he said Monday, “are paying half their income in taxes and health care premiums and going bankrupt because of health care costs.”

When workers have deductibles that are multiples larger than their bank accounts, they stop treating their chronic conditions. “And it has enormous harm for the future,” he said.

Still, he was optimistic about the possibilities of making health care both better and less expensive.

“It’s feasible to do these things,” he said Monday. “But it’s not sexy.”

Rx: Zucchini, Brown Rice, Turkey Soup. Medicaid Plan Offers Food As Medicine

June 25, 2018
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PHILADELPHIA — Feliciano Pagan stood at his front door when the MANNA food truck pulled up to his two-story brick row home.

Pagan, 48, greeted the driver with a smile as he carried in two large bags filled with frozen dinners and fresh fruit that would last a week. Among the goods were chicken fajitas with brown rice and zucchini; chicken dumplings, carrots and beets; and sweet-and-sour pork chops with turkey noodle soup.

These medically tailored meals — all with limited salt and carbohydrates — are designed to keep Pagan, who has congestive heart failure, out of the hospital. Health Partners Plans, the nonprofit company that runs the Medicaid health plan Pagan belongs to, is betting on it.

Feliciano Pagan, a Medicaid recipient in Philadelphia, looks over his medically tailored meals made at the kitchens of the nonprofit MANNA and paid for by Health Partners Plans, his Medicaid health plan. (Phil Galewitz/Kaiser Health News)

Since 2015, Health Partners has joined a small group of insurers around the country to offer some members specially designed meals to improve their health. The company paid the full cost for 560,000 meals to be delivered to more than 2,100 of its members with various conditions such as diabetes, heart disease and kidney failure.

The Metropolitan Area Neighborhood Nutrition Alliance (MANNA), a Philadelphia-based nonprofit organization that provides medically appropriate food for people with serious illnesses, prepares and delivers the meals.

The service covers three meals a day and typically lasts six weeks, although members can renew for two additional six-week cycles. It also provides nutritional counseling. MANNA provides the meals to everyone in the household to help family members support patients who need to change bad diets. Health Partners, which serves Philadelphia and nearby counties, said its investment is paying off.

With the kick-start that comes from receiving these free meals and continued counseling to shop better and prepare healthy meals, the members are better able to control their diabetes, use the hospital less and reduce their medical costs, according to the health plan.

“We wanted to see how this would work out and we are quite pleased that with the cooperation of our members we did see a dramatic reduction in their costs … and improved outcomes,” said William George, CEO of Health Partners.

George would not disclose how much his health plan pays for meals, although one industry expert said it costs less than $15 a day per member.

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The growing number of “food as medicine” programs nationally are aimed at improving nutrition among adults with serious illnesses to help them heal, recover from medical procedures and control chronic diseases.

Aetna and two other insurers also have added the benefit for their Medicaid enrollees in the Philadelphia area.

California’s Medicaid program in May began a three-year pilot project to provide meals to several thousand adults with chronic diseases. In New York, the nonprofit group God’s Love We Deliver provides medically tailored meals to two dozen Medicaid managed long-term care plans.

An example of one of MANNA’s meals. (Phil Galewitz/Kaiser Health News)

Despite the success of these food programs, they are not standard benefits in Medicare — the federal health program for seniors and disabled people — or Medicaid — the state-federal health program for low-income people. Advocates say efforts to expand the programs are stymied by concerns about the cost and public resistance to a government health program providing free food.

But private Medicaid and Medicare plans have discretion to spend their government funding on services outside direct medical care. Proponents of these meal services are trying to persuade more of the private plans to adopt the programs.

Karen Pearl, CEO of God’s Love We Deliver, said while it may seem obvious that giving people healthy meals will help them get well, it’s still a huge change for plans focused on paying for doctor visits, hospital care and drug benefits.

“For plans trying to care for high-cost members, sometimes it’s hard to carve out money from the medical model, as nutrition has not always been front of mind,” she said.

A recent shift among government and private insurers to pay doctors and hospitals to keep people out of the hospital could give this approach a boost, according to experts.

A study published in Health Affairs in April found providing tailored meals for at least six months in a Massachusetts Medicaid health plan reduced ER visits, hospital admissions and health spending compared with adults who did not receive an intervention.

Another study, published this month in the American Journal of Managed Care, found that when the Maine Medical Center offered specially tailored meals to 622 high-risk Medicare patients, the hospital’s readmission rates dropped by 38 percent over two years, compared with patients without the intervention. The cost savings were more than $200,000, according to the research.

“Telling someone to go to the gym and eat healthy does not work anymore,” George said. People either don’t know how to eat nutritious meals, don’t have easy access to healthy food or can’t afford it, he said.

That was the case with Pagan, whose blue-collar neighborhood has fast-food restaurants but lacks a larger grocery store with a broad array of fruits and vegetables.

Pagan has had heart valve surgery and may soon need a heart transplant. His doctors have told him to cut back on greasy food, but he said he didn’t know how until Health Partners offered him the special meals.

“It’s hard not knowing what foods to eat,” Pagan said during an interview in May just after he received his latest meals from MANNA.

Waynetta Faust, a volunteer at MANNA, prepares sweet-potato-and-crab soup. (Phil Galewitz/Kaiser Health News)

A MANNA delivery man walks up the steps of Feliciano Pagan’s home in northeast Philadelphia. (Phil Galewitz/Kaiser Health News)

MANNA uses a team of chefs and hundreds of volunteers to prepare the meals from scratch at its headquarters in downtown Philadelphia. Meals are tagged with a colored sticker depending on which of 11 types of diet they meet — such as low-calorie, high-protein or low-salt.

Unlike the popular Meals on Wheels America service, which provides meals to seniors across the country on a sliding fee scale, these specialized meals vary based on each person’s health status.

“It’s taken awhile for the concept to catch on that medically tailored meals are more than just food or a meal but high-tech specialty health care service for people living with complex medical needs,” said Robert Greenwald, faculty director of Harvard Law School’s Center for Health Law and Policy Innovation.

MANNA CEO Sue Daugherty said getting insurers to cover the cost of meals is vital to expanding her group’s reach, which otherwise relies on philanthropic support. About 375 of its 1,300 clients are now covered by Medicaid health plans.

It has been challenging to get insurers to look at the meals as a way to save money, Daugherty said.

“We think of food as medicine and want folks to have access to their prescribed diet just like they do for a prescribed medication,” she said.

For example, she added, cancer patients undergoing chemotherapy often have little appetite, so getting them meals rich in calories and protein is important to keep up their strength.

Sue Daugherty, CEO of MANNA, holds medically tailored meals in the nonprofit’s kitchen in Philadelphia. (Phil Galewitz/Kaiser Health News)

George said another key is nutritional counseling so members can learn to make better choices in the supermarket and prepare healthy meals themselves.

“We don’t have the resources to feed everyone forever,” he said.

There’s little research on how people’s health fares after they stop getting the medically tailored meals, said Seth Berkowitz, an assistant professor of medicine at the University of North Carolina, who co-authored the Health Affairs study. While there’s little controversy that giving people nutritious meals is good for their health, more research is needed to determine who are the best candidates for these programs and how long they should last, he said.

Marina Rangel, 53, of Philadelphia, credited the meals she received in 2016 through Health Partners for getting her back on the road to health.

At the time, she weighed 400 pounds and could barely move around her home. After five months of receiving meals and counseling, she lost 45 pounds, which encouraged her doctors to give her a hip replacement. Today, her weight is down to 245, her diabetes is under control, and she works at home selling antiques on eBay.

“It’s been amazing, lifesaving for me to be in the program,” she said.

This story is part of a collaboration between WHYY’s The Pulse, The Philadelphia Inquirer and Kaiser Health News.

‘Holy Cow’ Moment Changes How Montana’s State Health Plan Does Business

June 20, 2018

Marilyn Bartlett, the director administrator of Montana’s Health Care and Benefits Division, recalls thinking “holy cow” when she got an urgent directive from state legislators in late 2014: “You have to get these costs under control, or else.”

Increasing health care costs in the state workers’ health plan were helping hold down workers’ wages. The plan’s financial reserves were dwindling, heading for negative territory.

So began Barlett’s high-stakes game of chicken designed to change how the state did business with its 60 hospitals, which accounted for 43 percent of employee health care costs, turning the normal purchasing process on its head.

Instead of starting with the hospital’s list price and negotiating down for discounts, the state began telling these facilities how much it was willing to pay — a “reference price” — for each type of hospitalization. State officials used generally conservative Medicare rates as a baseline and starting point for the discussion.

Before the plan took effect, hospital charges for state employees for the same service had varied widely, with some hospitals charging three to six times the Medicare rate for some services.

To even out the disparities and save money, the state decided it would pay an average of 234 percent of Medicare rates — a level of payment that hospitals indicated they would accept and an amount the state calculated would allow an efficient hospital to deliver high-quality care and still profit.

While other states and some private employers have set prices they are willing to pay for some standardized procedures — such as a colonoscopies or hip replacements — Montana’s experiment is more sweeping, covering all hospital services, and it uses Medicare as a common yardstick.

Two years in, the state calls the effort a success, saving $15.6 million this year over the estimate of what it would have paid without the change. Meanwhile, its reserve fund has grown and is so healthy the state dipped into it for other needs.

Did The State Get The Payments Right?

“A centralized price-setting model has danger. It can overpay or underpay,” said Glenn Melnick, director of the Center for Health Policy and Management at the University of Southern California.

Lawmakers directed Marilyn Bartlett, the director administrator of Montana’s Health Care and Benefits Division, to get employee health costs under control, so she changed the way the state pays hospitals.(Courtesy of Marilyn Bartlett)

Like some other cost-control efforts, the Montana approach might lead to smaller numbers of hospitals that agree to participate in the state plan, he noted.

So far, there’s been no sign of that, said Bartlett: “No hospital has gone broke.”

But resistance is natural, said Damon Haycock, head of Nevada’s public employees’ benefits plan, because, ultimately, money saved for state workers is money hospitals don’t get.

There could be a ripple effect, as others in the community will want parity.

“If a state takes a hard line and says, we’re not paying more than X, then cities and counties and large employers would want the same deal,” he said. “And that becomes a massive political hurdle.”

To get buy-in, the state settled on the 234 percent, which many economists consider a relatively generous mark-up from standard Medicare payments.

Medicare doesn’t negotiate prices with hospitals or use hospital-set charges in its calculations. Instead, Medicare sets reimbursement through a complex formula that includes the cost of providing the service and the type of diagnoses. By its calculations, the government program pays hospitals enough to cover their services as well as a small profit.

Hospital officials, including many of those in Montana, disagree.

“When you look at total costs, Medicare probably pays 75 to 80 percent,” said Jay Doyle, president of St. James Healthcare in Butte. The facility, part of the SCL Health system, reported losing $9 million on its Medicare patients in 2016, the latest data available.

But economists say the prices are adequate if the hospitals spend the money wisely.

“Hospitals will say Medicare pays 90 cents on the dollar,” said Zack Cooper, an assistant professor of health policy and economics at Yale, which makes their argument sympathetic “for the first 15 seconds.”

In fact, for most hospitals, Medicare covers their costs, he added.

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Reaching Out To The Holdouts

The Montana effort took aim at hospital-set prices, often called “chargemaster rates,” which to Bartlett were seemingly “going up and up.” She and the third-party administrator the state hired gathered data and dove into the new negotiations.

At some hospitals, Montana was shelling out more than three times what Medicare paid for inpatient care. Outpatient services showed an even wider range. Some hospitals were paid more than six times the Medicare rates.

When Bartlett’s team settled on paying an average of 234 percent of Medicare for inpatient and outpatient care, the decision involved a delicate balance: Set the bar too high and some hospitals would raise prices; too low, and some could cut back services or refuse to sign on.

As the July 1, 2016, deadline approached, five hospitals were holding out — and the state didn’t want huge gaps in its hospital network.

“I was absolutely freaking,” said Bartlett.

Four of the five remaining agreed before the deadline. The last major holdout was Benefis Health System in Great Falls, which argued that it was already one of the lower-cost hospitals in the state and that it should save its biggest discounts for its biggest customers.

Benefis declined requests for an interview.

At the time, state workers and their unions began a classic public relations arm-twisting campaign. Workers were told they might get hit with out-of-network bills from Benefis if it did not sign on. Such bills represent the balance between what the state pays and what hospitals charge.

Employee unions urged members and other interested groups to call or write Benefis, urging it to get on board.

The hospital is “kind of a monopoly, used to calling their own tune,” because it is the only major hospital within 90 miles, recalls Keith Leathers, an investigator with Montana’s Department of Public Health and Human Services. He was among those employees who picked up the phone, left messages and wrote notes.

By the end of July, Benefis finally signed on.

Will Others Follow Suit?

“A lot of states could learn from Montana,” said William Kramer, executive director for National Health Policy with the Pacific Business Group on Health, a coalition of employers. Within the state, companies and cities in the state are watching the experiment as well.

There are discussions underway about expanding Montana’s program beyond 35,000 state workers to cover city, county and university employees.

“If you want to get at pricing abuse by hospitals, why wouldn’t every single employer do that,” said Francois de Brantes, an independent benefits consultant and former director of the Center for Payment Innovation at Altarum, a Washington, D.C.-based nonprofit research and consulting firm.

That, of course, makes hospitals nervous since they have traditionally compensated for low reimbursement from some insurers by charging others more.

“If [that] happened, it would have huge economic impact,” including layoffs at his hospital, said Doyle of St. James Healthcare.

But Cooper, the Yale economist, suggested that hospitals paid based on multiples of Medicare will be fine if they deploy their earning wisely rather than on duplicative services, additional MRI machines or gleaming, marble-filled lobbies.

For many, he said, “it’s a function of investment decisions, not that Medicare doesn’t pay enough.”

Unwieldy Health Costs Often Stand Between Teachers And Fatter Paychecks

June 18, 2018

As teacher strikes flared this spring in more than half a dozen states, from West Virginia to Arizona, protesters bemoaned stagnant salaries, overcrowded classrooms and a lack of basic supplies like textbooks and computers.

But often missing from hand-scrawled placards and fiery speeches was an issue that has contributed greatly to the financial woes of America’s schools: skyrocketing health care costs.

Many teachers, like other public employees, have traditionally accepted a trade-off: In exchange for relatively low salaries, they could expect relatively generous benefits, including pensions and low- or no-cost health premiums.

But in an era of $100,000-a-year drugs and government budget cuts, school districts are struggling to find the money to keep up their end of the bargain, forced to take away from classroom funding and even modest, cost-of-living raises. Many cash-strapped school boards, cities and legislatures view health care benefits as an unpredictable budget-buster.

Meanwhile, teachers are being asked to fork over more of their paychecks to keep their health coverage, even as budget cuts have impelled them to use their own money for classroom supplies and to crowdsource money to buy computers.

In Jersey City, N.J., where health care expenses have gone up an average of 10 percent annually as district funding has remained flat, teachers staged a one-day strike in March to protest rising costs.

But with an underfunded school system and a $110 million health care bill that is expected to increase another 13 percent this year, teachers and officials accepted a mutually imperfect solution that included changes to their health care plan to end the strike and avoid cuts that would have gutted local schools.

“We’re talking about 300 teachers being laid off to be able to afford our health care bill,” said Sudhan Thomas, president of the Jersey City Public Schools’ board of education.

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While the teacher strikes have ebbed with the school year, deals brokered to end walkouts mostly offered temporary fixes, with no long-term solution in sight.

Proposed cuts to health benefits in West Virginia were also behind the first strike this year, shuttering the state’s public schools for nine days and inspiring similar protests in several states. When officials initially extended teachers a 1 percent pay raise, small in comparison to an imminent hike in their health insurance contributions, teachers rejected the offer.

“You really know you have arrived when you become a verb,” said David Haney, executive director of the West Virginia Education Association, whose wife is a teacher. “Don’t make me go West Virginia on you.”

A Pay Equation That Doesn’t Add Up

Teacher pay was below the national average of $59,660 in the six states that saw significant demonstrations this year — West Virginia, Oklahoma, Arizona, Kentucky, Colorado and North Carolina. But teachers are losing ground nationally.

The average teacher salary in the United States has decreased by 4 percent since 2009, adjusted for inflation, according to a report released in April by the National Education Association, an advocacy group for public school teachers. During that time, public schools have seen their revenue shrink, with federal funding dropping 19.5 percent, particularly after Congress’ across-the-board spending cuts known as budget sequestration took effect in 2013.

As funding has declined, the cost of health insurance has gone up. State and local governments paid 14.5 percent more last year to cover a primary, secondary or special education teacher and her or his family than they did in 2008, adjusted for inflation.

According to that data from the Bureau of Labor Statistics (BLS), in March 2017, family coverage for one teacher cost state and local governments an average of $1,010.85 per month.

Put another way, a 2015 report from the George W. Bush Institute’s Education Reform Initiative estimated that it cost about $550 per pupil to cover American teachers’ insurance expenses.

Educators have also felt the sting of growing health insurance costs, especially as officials have shifted some of the burden to them. Primary, secondary and special education teachers paid 25.4 percent more last year to insure themselves and their families than they did in 2008, according to BLS data adjusted for inflation.

Teachers paid an average of $585.71 per month — more than $7,000 annually — in premiums for family health insurance coverage in March 2017.

For early-career teachers, that price is especially unmanageable. In Pueblo, Colo. — where teachers secured raises and an additional $50 a month toward health insurance premiums after walking out in May — a new teacher makes $35,277, according to Suzanne Ethredge, president of the Pueblo Education Association.

And even where school systems offer teachers generous plans, with low deductibles and minimal premium contributions, the educators frequently have to pick up the costs for family members.

Many States, Common Themes

The standoff in West Virginia typified the strains in states grappling with rising benefit costs on budgets strained by tax cuts and the recession.

Teachers, like other West Virginia public employees, pay for insurance based on what they earn. For a plan that allows some choice of doctors and hospitals, that means $59 per month for someone making less than $20,000, but $164 per month for someone making more than $125,000.

Last fall, the Public Employees Insurance Agency floated the ideas of slashing the number of salary tiers used to calculate contributions, adding spouses’ salaries in those calculations and charging per person for family coverage rather than a flat fee.

The agency further announced that state employees would soon be required to use a wellness app called Go365, incurring penalties for failing to meet their health goals or for declining to use the system altogether.

So when state lawmakers proposed a mere 1 percent raise to an average salary of just $45,555, teachers pushed back. They refused to return to work until officials agreed to a 5 percent raise, scuttled the Go365 plan and delayed the health care hikes so a task force could review them.

In Oklahoma, the strikers publicly focused their complaints on operational costs like textbooks and salaries. They secured roughly an extra half a billion dollars, said Alicia Priest, president of the Oklahoma Education Association. “We got everything that we could out of legislators this year,” she said.

But Priest said health care costs remain a serious issue for school personnel. While the state covers teachers’ individual premiums, covering a spouse and children can cost an additional $1,200 per month, she said — a significant portion of a teacher’s starting salary.

She said that some teacher aides work only for the health insurance for their families — in some cases writing a check to the district to cover the difference between meager salaries and their premiums.

While the advent of summer break has calmed the protests, future strikes look likely, said Paul Reville, a professor at the Harvard Graduate School of Education and former Massachusetts secretary of education. The fact that most teachers negotiated at least some concessions proved the tactic effective enough, especially as health care costs continue to rise.

“The shoe is pinching,” he said, “and people are reacting.”

5 Things To Know About Medicaid Work Requirements

June 14, 2018

The Trump administration’s decision in January to give states the power to impose work requirements on Medicaid enrollees faces a federal court hearing Friday.

The lawsuit before the U.S. District Court in Washington, D.C., will determine whether tens of thousands of low-income adults in Kentucky will have to find jobs or volunteer in order to retain their health coverage.

But the ruling could have far-reaching implications affecting millions of enrollees nationwide and determining how far the Trump administration can go in changing Medicaid without congressional action.

Kentucky was the first of four states, so far, to win federal approval to advance a work requirement. Indiana, Arkansas and New Hampshire are the others. Each is now in the early stages of implementation.

Arkansas, for instance, in June began having Medicaid enrollees inform the state about their work status. In September, the state could begin disenrolling members who fail to report or meet the work rules.

Seven more states — Arizona, Kansas, Maine, Mississippi, Ohio, Utah and Wisconsin — have applications pending and several others are poised to join them.

Kentucky’s legal challenge encapsulates a debate about two competing views of the role of Medicaid, the nation’s largest health program that covers nearly 75 million low-income Americans.

The Trump administration and many conservatives see it as a welfare program that should provide only temporary help and should prepare enrollees to gain employment and negotiate private health insurance.

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Democrats, advocates for the poor and most legal experts see Medicaid as a health program meant to help the nation’s poorest citizens access health coverage. They say the administration’s approach of requiring enrollees to work to get health coverage is backward because enrollees need health coverage so they are healthy enough to work.

“There is zero evidence to suggest that depriving people of Medicaid will lead to greater levels of employer insurance,” 40 health policy scholars wrote in an amicus brief supporting the lawsuit filed on behalf of several Kentucky Medicaid enrollees.

“The CMS work ‘demonstration’ destroys, not improves, Kentucky’s substantial health care achievements and defeats, rather than promotes, Medicaid’s purpose as a safety net insurer,” according to the brief.

The 2010 Affordable Care Act spurred 33 states to expand Medicaid to nondisabled adults without children. Before that, the program mainly served children, pregnant women and people with disabilities.

That expansion, which provided billions in new federal funding to states, triggered an unprecedented drop in uninsured rates nationwide and tempted some Republican governors to pursue the additional health care dollars. But some of these GOP-controlled states also sought to add the new work requirement, in part to show conservative voters they weren’t simply providing a government handout to poor adults.

States that didn’t expand Medicaid and have some of the strictest eligibility limits in the country —including Kansas and Mississippi — also applied for work requirement waivers.

Here are five things to know as this court case unfolds:

1. Why do the Trump administration and states want to add the new work requirement?

Top Trump officials say the work requirement is meant to help enrollees find jobs. They say people who work or do volunteer service are healthier. Seema Verma, administrator of the U.S. Centers for Medicare & Medicaid Services, said Medicaid should be a “hand up” not a handout.

According to CMS, while the work requirement is a change in policy, it still fits within the agency’s long-standing missions of promoting health and improving health outcomes.

2. How does the work requirement work?

Kentucky’s program would require nondisabled adults each month to participate in 80 hours of work, job training, education or other qualified “community engagement.”

Those who are exempt include children and former foster care kids; pregnant women; seniors; people who are the primary caretakers for a child or a disabled adult; those who are deemed medically frail or diagnosed with an acute medical condition that would prevent them from working; and full-time students.

Adults in northern Kentucky would have to begin registering their work hours this summer, and the rest of the state would follow by the end of 2018.

State officials acknowledge the new requirement could be complicated for many enrollees. “We need to be careful and thoughtful how we roll out the ‘community engagement,’ recognizing this is a huge change,” said Kristi Putnam, deputy secretary for Kentucky’s Cabinet for Health and Family Services.

States have set up different rules on how many hours a month Medicaid enrollees must work or volunteer and who is exempt.

In Arkansas, everyone enrolled in Medicaid has to document their work hours through an online portal created by the state — with no option to submit information in person, over the phone or by mail. Critics of the work requirement fear that will be a barrier, considering the state has the second-lowest rate of home internet access in the nation.

3. What are the main objections to the work requirement from a legal and practical standpoint?

Critics say the requirement would lead many low-income people to lose their health coverage and, therefore, hinder their ability to get medical care. They note Kentucky’s own projections show that 95,000 Medicaid enrollees would lose coverage within five years.

The work-requirement approvals were based on the Health and Human Services secretary’s authority to test new ways of providing Medicaid coverage. The critics also argue, though, that the Trump administration is overstepping its statutory boundaries because the requirement would reduce eligibility rather than expand it.

Lastly, work requirement opponents note most people on Medicaid already work — or go to school, have a disability or care for relatives.

A June 12 Kaiser Family Foundation study concluded that only 6 percent of able-bodied adults on Medicaid who are targeted by states’ work requirements are not already working and unlikely to qualify for an exemption. In addition, 6 in 10 nondisabled adults on Medicaid work at least part time, although they often aren’t offered health benefits through those jobs or can’t afford them. (Kaiser Health News is an editorially independent program of the foundation.)

Surveys show that many Medicaid enrollees who don’t work are in job training, go to school or are taking care of a child or an elderly relative, conditions that would make them exempt from the new mandate.

4. When is the court expected to rule, and could this issue go to the Supreme Court?

Both sides expect a quick decision, likely by late June. But an appeal is likely no matter who wins.

If the Trump administration wins, it’s uncertain if plaintiffs will be able to get a stay on the work requirement taking effect while an appeal is in process.

5. While the work requirement is getting most of the attention, what else is at stake in the court case Friday?

The lawsuit filed by advocates on behalf of Medicaid enrollees seeks to overturn the entire Kentucky Medicaid waiver approved by the Trump administration in January.

Kentucky’s waiver also sets precedent because it would become the first state to charge Medicaid premiums of up to 4 percent of an individual’s income. The current limit has been 2 percent. Moreover, Kentucky would become the first state to lock out Medicaid enrollees from coverage for up to six months for failure to timely renew their coverage or failure to alert the state if their income or family circumstances have changed.

Could California Shape The Fate Of The Affordable Care Act In November?

June 07, 2018

In the state that’s leading the opposition to many of President Donald Trump’s health policies, California voters will face a stark choice on the November ballot: keep up the resistance or fall in line.

The results of Tuesday’s primary have set up general-election contests between candidates — for governor, attorney general, insurance commissioner and some congressional seats — with sharply differing views on government’s role in health care.

The outcome in the Golden State could help shape the fate of the Affordable Care Act and influence whether Republicans in Washington take another shot at dismantling the landmark law.

“For the Affordable Care Act, California is a bellwether state,” said David Blumenthal, president of the Commonwealth Fund, a New York-based health policy research organization. If California voters don’t elect more Democrats to Congress, it will be harder for the party to gain legislative control and “the Affordable Care Act will continue, as it has been, to be under attack from an empowered Republican majority,” he said.

Despite being targeted for voting last year to repeal the ACA and cut Medicaid funding, several Republican incumbents performed well at the polls in California.

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“California was supposed to lead the blue wave, but that’s not what we saw” in the primary, said Ivy Cargile, an assistant professor of political science at California State University-Bakersfield.

In the California governor’s race, Democratic front-runner Gavin Newsom quickly sought to cast the November contest as a referendum on Trump and his effort to undo much of President Barack Obama’s legacy, particularly on health care.

A series of Trump tweets endorsing Republican candidate John Cox, a multimillionaire real estate investor, helped propel the political outsider to the general election.

“It looks like voters will have a real choice — between a governor who will stand up to Donald Trump and a foot soldier in his war on California,” Newsom said Tuesday night to supporters in San Francisco.

California has embraced the federal health law enthusiastically and stands to lose more than any other state if the ACA is gutted. About 1.5 million Californians buy coverage through the state’s Obamacare exchange, Covered California, and nearly 4 million have joined Medicaid as a result of the program’s expansion under the law.

Newsom, a former San Francisco mayor and the current lieutenant governor, has pledged to defend the coverage gains made under the ACA. He has vowed to go even further by pursuing a state-run, single-payer system for all Californians.

Newsom won the primary with 33 percent of the vote and Cox placed second with 26 percent. Some mail-in votes and provisional ballots continue to be counted.

Cox has slammed Newsom and fellow Democrats for imposing government controls on health care that he says make coverage too expensive for families. He said he isn’t interested in defending the Affordable Care Act and that, if the law is scrapped, millions of Californians can go into high-risk insurance pools — an idea that predates the health law.

Andrew Busch, a government professor at Claremont McKenna College, said the political divide over health care has grown even wider this year as single-payer has gained support from mainstream Democrats in California.

“I’d say the Republican candidates are pretty much where the Republicans have been, but the Democratic candidates have shifted to the left, so the choice is starker than it has been,” Busch said.

Heading into Tuesday’s primary, it wasn’t clear that California voters would face such drastically different choices on the November ballot. Under the state’s primary system, the top two vote-getters, regardless of party affiliation, advance to the general election. That left many experts predicting single-party matchups across the state.

But that scenario also didn’t pan out in the race for attorney general, a position that has played a key role in California’s resistance politics since Trump was elected. Democratic incumbent Xavier Becerra, who has become a national leader against Trump’s agenda, will face off against Republican Steven Bailey in the fall.

Becerra has filed more than 30 lawsuits on health care and other issues since taking office in January 2017.

Bailey, a criminal attorney and former judge, has blamed the Affordable Care Act for driving up health care costs, and he favors less industry regulation. He also has criticized Becerra for fixating too much on Trump.

“Just because a tweet comes out of Washington, it doesn’t require a lawsuit to be filed the next day,” Bailey said.

Health care could also play a role in several of California’s congressional races. Democrats are trying to win back control of the House, in part to better block Republican efforts to roll back the ACA.

“The actions of the Trump administration, the elimination of the individual mandate and its impact on markets will become more of an issue,” said Chris Jennings, a former health care adviser in the Obama administration. “The conservative caucus has been forcefully advocating for another aggressive return to the repeal effort.”

One of the most-watched races nationally is in a district of California’s San Joaquin Valley where Republican incumbent Jeff Denham drew several Democratic opponents after voting to repeal the health law last year — as did all of California’s Republican House members.

Denham led a crowded primary field with 38 percent of the vote Tuesday. Democrat Josh Harder is holding on to second place with nearly 16 percent, just ahead of a Republican challenger. The results are pending until late-arriving ballots are counted.

Harder said the Republicans’ repeal-and-replace effort on health care was a major reason he decided to run. He made it a centerpiece of his campaign and ran ads criticizing Denham for voting to take away coverage from thousands of his constituents. About 40 percent of residents in this Modesto-area district are enrolled in Medicaid, the government insurance program for the poor and disabled.

Denham has defended his repeal vote, saying that patients’ access to doctors has only gotten worse since coverage was expanded under the ACA. In a statement last year, Denham said, “coverage does not necessarily equal care and families must resort to overflowing emergency rooms to be seen.”

But Dan Schnur, a Republican political strategist who teaches at the University of Southern California and the University of California-Berkeley, said health care has gone from a negative to a positive for Democratic candidates, who have spent the past several elections defending Obamacare.

“As a result, they’re doing everything they can to emphasize the health care debate rather than run away from it,” he said.

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

Podcast: KHN’s ‘What The Health?’ Virginia, The VA, And Military Medicine

May 31, 2018
Julie Rovner

Kaiser Health News


Read Julie's Stories Rebecca Adams

CQ Roll Call


Read Rebecca's Stories Joanne Kenen



Read Joanne's Stories Paige Winfield Cunningham

The Washington Post


Read Paige's Stories

After a five-year fight, the Virginia legislature voted this week to expand the Medicaid program to an estimated 400,000 low-income residents who are not currently eligible for health coverage. And New Jersey became the second state to impose a state-level “individual mandate” requiring most residents to have health insurance or pay a fine, following last year’s repeal of the federal penalty.

Meanwhile, Congress has quietly passed a major bipartisan bill to overhaul and streamline health programs provided to the nation’s veterans. The bill includes an expansion of veterans’ ability to get private care paid for outside the Department of Veterans Affairs system, in certain cases.

Also this week, an interview with Dr. Arthur Kellerman, dean of the Uniformed Services University of the Health Sciences, the military’s medical school in Bethesda, Md.

This week’s panelists for KHN’s “What the Health?” are Julie Rovner of Kaiser Health News, Joanne Kenen of Politico, Paige Winfield Cunningham of The Washington Post and Rebecca Adams of CQ Roll Call.

Among the takeaways from this week’s podcast:

  • Two key factors helped push Medicaid expansion through the Virginia General Assembly. One was the Trump administration’s endorsement of work requirements for nondisabled adults and the other was the blue wave that shook the state last November when the House of Delegates nearly turned from a safe Republican majority to Democratic control.
  • New Jersey’s passage of a mandate that state residents get coverage or face a penalty was surprising because that provision was one of the most disliked parts of the federal Affordable Care Act.
  • Even as Congress sent the president the bill expanding VA programs, there is a widening debate in Washington about whether the system should be privatized. That debate has helped both create the vacancy at the top of the Department of Veterans Affairs and complicated efforts to fill it.

Plus, for “extra credit,” the panelists recommend their favorite health stories of the week they think you should read, too.

Julie Rovner: Bloomberg News’ “Is There a Doctor Aboard? Airlines Often Hope Not,” by Ivan Levingston

Joanne Kenen: The Atlantic’s “Ambien Doesn’t Cause Racism,” by Olga Khazan

Rebecca Adams: ProPublica’s “Why Your Health Insurer Doesn’t Care About Your Big Bills,” by Marshall Allen

Paige Winfield Cunningham: The New York Times’ “Origins of an Epidemic: Purdue Pharma Knew Its Opioids Were Widely Abused,” by Barry Meier

Also: The New Yorker’s “The Family That Built an Empire of Pain,” by Patrick Radden Keefe

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Readers And Tweeters Bare Their Teeth On Dental Disparities (And Other Fine Points)

May 31, 2018

Letters to the Editor is a periodic Kaiser Health News feature. KHN welcomes all comments and will publish a selection. We edit for length and clarity and require full names.

Foaming At The Mouth Over Dental Insurance?

In response to the revelation that a 61-year-old academic had to rely on handouts from his mom to cough up over $50,000 for dental work (“When Is Insurance Not Really Insurance? When You Need Pricey Dental Care,” May 21), Trista McGlamery of Atlanta tweets that an ounce of prevention is worth a ton.

I blew through my coverage this year having 11 cavities filled and scaling done, so I will agree dental insurance isn't sufficient. Another aspect of this is the gap in quality rural dental care. How many people are facing enormous bills now thanks to substandard care earlier?

— Trista McGlamery (@tristamac) May 21, 2018

— Trista McGlamery, Atlanta

Jillian Tullis of San Diego seconds that emotion.

Great article about #dentistry. ‘Underlying this “insurance” system in the U.S. is a broader, unstated premise that dental treatment is somehow optional, even a luxury. From a coverage standpoint, it’s as though the mouth is walled off from the rest of the body.’ #healthcare

— Jillian Tullis (@ProfJillian) May 21, 2018

— Jillian Tullis, San Diego

A professor of economics at Elon University, Steve DeLoach, questions the logic:

It really defies logic. Why do we treat the inside of your mouth different that any other part of your body? Lots of economic problems here since an unhealthy mouth directly affects the health of the rest of your body (which is covered by typical insurance).

— Steve DeLoach (@steve_deloach) May 28, 2018

— Steve DeLoach, Elon, N.C.

Taking the long view is historian Debby Levine of Providence, R.I.

Worth thinking about historical reasons that American mouths and teeth have their own insurance system separate from the rest of the body:

— D Lev (@debbylevine) May 21, 2018

— Debby Levine, Providence, R.I.

Rachel Perrone of Washington, D.C., tells how she took it in the teeth for her son.

I brought my son in for a tooth that was coming in wonky and *hurting* him. But because that was considered orthodonture, not a penny of it was covered. I'll be paying on it forever.

— Rachel Perrone (@RachelPerrone) May 21, 2018

— Rachel Perrone, Washington, D.C.

Representing Pharmacists

I’m disappointed that your image of a pharmacist is a white male (“Looking For Lower Medicare Drug Costs? Ask Your Pharmacist For The Cash Price,” May 30). In 2015, according to the Bureau of Labor Statistics, 57 percent of pharmacists were women, nearly 9 percent were black or African-American, 15 percent Asian and roughly 5 percent Hispanic. Please consider reflecting the diversity of people in this occupation.

— Regina Flynn, Strafford, N.H.

Pardon Our ‘Spanish’

In the story “California Lawmakers Seek Reparations For People Sterilized By The State” (April 25), Samantha Young’s use of the adjective “Spanish” to describe the predominantly Mexican Hispanic/Latino community in Hayward, Calif., should be reconsidered. I know this is a complicated descriptive-language issue, but the female population targeted for sterilization was heavily Mexican, and Rosie was of Mexican heritage in a community with little representation from Spain. I’d be inclined not to use the word “Spanish” to generalize about this community.

— Dave Hallock, Edmonds, Wash.

Why Punish The Ill?

Many of these incarcerated individuals who are receiving psychotropic medications have needed them for years but were unable to obtain them for any number of reasons (“Use Of Psychiatric Drugs Soars In California Jails,” May 8). It’s a shame that the only way they can get what their bodies require is to be imprisoned. In fact, the prisons are not just filled with criminals. In most states, inmate populations are made up largely of those with “medical needs” not “criminal rehabilitation needs.” A case of “the wrong doctors treating the wrong diseases.”

— Joe Blough, Rock Hill, Mo.

In Health Care Arena, The Prize For Calif. Insurance Commissioner Is A Bullhorn

May 30, 2018

The person who wins the four-way race to become California’s next insurance commissioner will inherit a job with broad authority over policies that cover homes, businesses, cars and even airplanes.

But medical insurance? Not so much. The commissioner’s direct control over health insurers is limited, because the California Department of Insurance — headed by the commissioner — regulates only a small slice of the market.

Still, the job carries the power of the bully pulpit, amplifying the commissioner’s voice on matters of regional, statewide and national importance.

The incumbent, Dave Jones, has used that bullhorn frequently to chastise health insurers, blast the Trump administration’s efforts to roll back the Affordable Care Act and interject his voice on subjects ranging from prescription drug prices to climate change to women’s reproductive rights.

The four candidates vying in the June 5 primary to replace Jones — who is running for attorney general — will no doubt follow his lead in making use of the soapbox the commissioner’s office provides. Three of the four are ardent supporters of a statewide single-payer system and would use the office to promote it.

One of them, Democratic state Sen. Ricardo Lara, said one of his biggest priorities is “to ensure that everyone gets health care.” He is a strong proponent of government-run health care for all Californians and author of the now-dormant legislation, SB 562, which would create such a system.

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Nathalie Hrizi, a San Francisco teacher-librarian who is the Peace and Freedom Party’s candidate, said she’s running because the commissioner’s office is “part of the political movement … for single-payer health care and socialism.” She added: “Insurance doesn’t serve a productive role in society.”

Asif Mahmood, a Los Angeles pulmonologist and a Democrat, said that as a medical practitioner, he regularly sees the financial challenges people face with the high cost of care. As a result, he said, he is best placed to find a “real solution which includes health care for all, not health care for most.”

Steve Poizner, a Silicon Valley businessman, strongly opposes the idea of government-run health care and said the candidates who are advocating it “probably should be running for a different post.” He said he would push to eliminate fraud and wasteful health spending and create a system that rewards doctors and hospitals for the quality of their care rather than the volume of their services.

Poizner, who served as insurance commissioner from 2007 to 2011 as a Republican and is running now under no party banner, leads the field with 20.7 percent of voter preferences, according to a recent poll by Probolsky Research.

Lara is in second place with 13.7 percent, followed by Mahmood with 6.3 percent, and Hrizi with 5.9 percent, the poll found. However, more than half of respondents were undecided or declined to state their preference. The candidates who finish first and second in the primary will face off in the general election Nov. 6.

The commissioner’s authority over the health insurance industry has been eroded significantly in recent years, largely because of California’s bifurcated system of regulation. Regulatory discretion has increasingly shifted to the Department of Managed Health Care (DMHC), which now oversees not only HMOs but also some PPOs, which were previously the domain of the commissioner.

This dual system often has allowed insurers to drive a wedge between the two agencies and essentially choose their regulators. Blue Shield of California, for example, one of the state’s biggest insurers, voted with its feet and is now mostly regulated by the DMHC.

The insurance commissioner has primary regulatory authority over health plans that cover just under 10 percent of Californians enrolled in commercial health plans, according to the California Health Care Foundation. (California Healthline is an editorially independent publication of the California Health Care Foundation.) Throw in the state’s nearly 13 million managed-care Medi-Cal plans, and the commissioner’s share drops to around 5 percent.

Despite this limitation, the Department of Insurance has statutory powers it can — and does — exercise. It pursues fraud, fines insurers that break the law and investigates consumer complaints about coverage. It also oversees the state’s 360,000 licensed insurance agents, with the power to investigate them, arrest them and turn them over for prosecution.

The department can also require health plans to comply with certain coverage requirements. Jones, for example, has issued rules to ensure plans have a robust network of providers, cover autism treatment and provide equal access to care for the transgender population.

The commissioner also plays a role in examining merger proposals.

One power the insurance commissioner does not have, which Jones has often lamented, is the authority to prevent insurers from imposing large premium hikes — a matter of significant public concern as rates have soared in recent years. The DMHC doesn’t have that power, either.

The commissioner does examine proposed rate increases, and on occasion Jones has persuaded insurers to reduce the size of them.

Lara proposes rolling the two regulators into one, under the insurance commissioner, and granting the newly combined agency the power to reject what it deems to be unreasonable rate hikes by insurers. That would help “bring prices down on behalf of consumers,” Lara said.

A ballot measure to allow the insurance commissioner to reject health insurance rate increases failed in 2014, as did a state bill in 2012.

In previous years, candidates talked a lot more about keeping premiums down, but this year much of the campaign rhetoric has focused on the idea of universal health care, said Stephen Shivinsky, a former Blue Shield executive who is now consulting for health insurers.

“Trump’s election changed everything,” Shivinsky said. Federal attempts to repeal the Affordable Care Act reignited questions about how health care is delivered, and “that really brought about the debate on single-payer,” he said.

Garry South, a longtime California campaign strategist, said he’s not surprised the Democratic candidates are talking up their support for universal health care, especially single-payer.

“If you’re going to run as a Democrat, you have to be for single-payer,” South said. Not doing so “would be like running for governor of California and opposing gun control.”

Poizner, the apparent front-runner, not only opposes government-run health care but also thinks it is way beyond the purview of the job he’s seeking. His goals for health care are relatively modest, including a study of how the money in California’s $400 billion health care system is spent, with an eye toward trimming the fat.

“As insurance commissioner, I want to focus on what I can get done,” he said.

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

Benefit Change Could Raise Costs For Patients Getting Drug Copay Assistance

May 29, 2018

Since Kristen Catton started taking the drug Gilenya two years ago, she’s had only one minor relapse of her multiple sclerosis, following a bout of the flu.

She can walk comfortably, see clearly and work part time as a nurse case manager at a hospital near her home in Columbus, Ohio. This is a big step forward; two drugs she previously tried failed to control her physical symptoms or prevent repeated flare-ups.

This year, Catton, 48, got a shock. Her health insurance plan changed the way it handles the payments that the drugmaker Novartis makes to help cover her prescription’s cost. Her copayment is roughly $3,800 a month, but Novartis helps reduce that out-of-pocket expense with payments to the health plan. The prescription costs about $90,000 a year.

Those Novartis payments no longer counted toward her family plan’s $8,800 annual pharmacy deductible. That meant once she hit the drugmaker’s payment cap for the copay assistance in April, she would have to pay the entire copayment herself until her pharmacy deductible was met.

Catton is one of a growing number of consumers taking expensive drugs who are discovering they are no longer insulated by copay assistance programs that help cover their costs. Through such programs, consumers typically owe nothing or have modest monthly copayments for pricey drugs because many drug manufacturers pay a patient’s portion of the cost to the health plan, which chips away at the consumer’s deductible and out-of-pocket maximum limits until the health plan starts paying the whole tab.

Since her insurance company changed its rules, Kristen Catton is responsible for nearly $9,000 of the cost of her multiple sclerosis drug.(Courtesy of Kristen Catton)

Under new “copay accumulator” programs, that no longer happens.

In these programs, the monthly copayments drug companies make don’t count toward patients’ plan deductibles or out-of-pocket maximums. Once patients hit the annual limit on a drugmaker’s copay assistance program, they’re on the hook for their entire monthly copayment until they reach their plan deductible and spending limits.

Catton put the $3,800 May copayment on a credit card. She knows her insurer will start paying the entire tab once she hits the pharmacy deductible. But, she said, she can’t afford to pay nearly $9,000 a year out-of-pocket for the foreseeable future.

“I’m talking to my doctor to see if I can I take it every other day,” she said. “I guess I’m winging it until I can figure out what to do.”

Drug copay assistance programs have long been controversial.

Proponents say that in an age of increasingly high deductibles and coinsurance charges, such help is the only way some patients can afford crucial medications.

But opponents say the programs increase drug spending on expensive brand-name drugs by discouraging people from using more cost-effective alternatives.

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Switching to a cheaper drug may not be an option, said Bari Talente, executive vice president for advocacy at the National Multiple Sclerosis Society.

“Generally the multiple sclerosis drugs are not substitutable,” she said. “Most have different mechanisms of action, different administration and different side effect profiles.” Generics, when they’re available, are pricey too, typically costing $60,000 or more annually, she said.

Most MS drug annual copay assistance limits, if they have them, are between $9,000 and $12,000, Talente said.

Employers argue that the drug copayment programs are an attempt to circumvent their efforts to manage health care costs. For example, employers may try to discourage the use of a specialty drug when there’s a lower-cost drug available by requiring higher patient cost sharing.

There’s also the issue of fairness.

“From an employer perspective, everyone under the plan has to be treated the same,” said Brian Marcotte, president and CEO of the National Business Group on Health (NBGH), which represents large employers.

If someone needs medical care such as surgery, for example, that person doesn’t get help covering his deductible, while the person with the expensive drug might, he said.

According to an NBGH survey of about 140 multistate employers with at least 5,000 workers, 17 percent reported they have a copay accumulator program in place this year, Marcotte said. Fifty-six percent reported they’re considering them for 2019 or 2020.

If there is no comparable drug available, drug copayment programs may have a role to play if they can be structured so that participating patients are paying some amount toward their deductible, Marcotte said. But, he said, assistance programs for drugs that are available from more than source, such as a brand drug that is also available as a generic, shouldn’t be allowed.

In 2016, 20 percent of prescriptions for brand-name drugs used a drug copay assistance coupon, according to an analysis by researchers at the USC Schaeffer Center for Health Policy and Economics. Among the top 200 drugs based on spending in 2014, the study found that 132 were brand-name drugs, and 90 of them offered copay coupons. Fifty-one percent of the drugs with copay coupons had no substitute at all or only another brand drug as a close therapeutic substitute, the analysis found.

Advocates for people with HIV and AIDS say copay accumulators are cropping up in their patients’ plans and beginning to cause patients trouble. Drugs to treat HIV typically don’t have generic alternatives.

The biggest impact for the community their organizations serve may be for PrEP, a daily pill that helps prevent HIV infection, said Carl Schmid, deputy executive director at the AIDS Institute, an advocacy group. A 30-day supply of PrEP (brand-name Truvada) can cost nearly $2,000. Drug manufacturer Gilead offers a copay assistance program that covers up to $3,600 annually in copay assistance, with no limit on how much is paid per month.

“They’re at risk for HIV, they know it and want to protect themselves,” Schmid said. “It’s a public health issue.”

Earlier this month, the AIDS Institute was among 60 HIV organizations that sent letters to state attorneys general and insurance commissioners across the country asking them to investigate this practice, which has emerged in employer and marketplace plans this year.

Compounding advocates’ concerns is the fact that these coverage changes are frequently not communicated clearly to patients, Schmid said. They are typically buried deep in the plan documents and don’t appear in the user-friendly summary of benefits and coverage that consumers receive from their health plan.

“How is a patient to know?” Schmid asks. They learn of the change only when they get a big bill midway through the year. “And then they’re stuck.”

KHN’s coverage of prescription drug development, costs and pricing is supported by the Laura and John Arnold Foundation.

When Is Insurance Not Really Insurance? When You Need Pricey Dental Care.

May 21, 2018

I’m 61 years old and a San Francisco homeowner with an academic position at the University of California-Berkeley, which provides me with comprehensive health insurance. Yet, to afford the more than $50,000 in out-of-pocket expenses required for the restorative dental work I’ve needed in the past 20 years, I’ve had to rely on handouts — from my mom.

This was how I learned all about the Great Divide between medicine and dentistry — especially in how treatment is paid for, or mostly not paid for, by insurers. Many Americans with serious dental illness find out the same way: sticker shock.

For millions of Americans — blessed in some measure with good genes and good luck — dental insurance works pretty well, and they don’t think much about it. But people like me learn the hard way that dental insurance isn’t insurance at all — not in the sense of providing significant protection against unexpected or unaffordable costs. My dental coverage from UC-Berkeley, where I have been on the public health and journalism faculties, tops out at $1,500 a year — and that’s considered a decent plan.

Dental policies are more like prepayment plans for a basic level of care. They generally provide full coverage for routine preventive services and charge a small copay for fillings. But coverage is reduced as treatment intensifies. Major work like a crown or a bridge is often covered only at 50 percent; implants generally aren’t covered at all.

In many other countries, medical and dental care likewise are segregated systems. The difference is that prices for major procedures in the U.S. are so high they can be out of reach even for middle-class patients. Some people resort to so-called dental tourism, seeking care in countries like Mexico and Spain. Others obtain reduced-cost care in the U.S. from dental schools or line up for free care at occasional pop-up clinics.

Underlying this “insurance” system in the U.S. is a broader, unstated premise that dental treatment is somehow optional, even a luxury. From a coverage standpoint, it’s as though the mouth is walled off from the rest of the body.

My humbling situation is not about failing to brush or floss, not about cosmetics. My two lower front teeth collapsed just before my 40th birthday. It turned out that, despite regular dental care, I had developed an advanced case of periodontitis — a chronic inflammatory condition in which pockets of bacteria become infected and gradually destroy gum and bone tissue. Almost half of Americans 30 and older suffer from mild to severe forms of it.

My diagnosis was followed by extractions, titanium implants in my jaw, installation of porcelain teeth on the implants, bone grafts, a series of gum surgeries — and that was just the beginning. I’ve since had five more implants, more gum and bone grafts and many, many new crowns installed.

At least I’ve been able to get care. The situation is much worse for people with lower incomes and no family support. Although Medicaid, the state-federal insurer for poor and disabled people, covers children’s dental services, states decide themselves on whether to offer benefits for adults. And many dentists won’t accept patients on Medicaid, child or adult, because they consider the reimbursement rates too low.

The program typically pays as little as half of what they get from patients with private insurance. For example, as Kaiser Health News reported in 2016, Medicaid in Colorado pays $87 for a filling on a back tooth and $435 for a crown, compared with the $150 and $800 that private patients typically pay.

“It’s really a labor of love to do it,” said Dana Lubet, a recently retired dentist in Madison, Wis., who estimated Medicaid paid only a third of his costs. Accepting too many, he said, “could easily kill your practice.”

A few years ago, while in his mid-50s, Nick DiGeronimo, a facility maintenance worker at a New Jersey sports center, obtained private insurance coverage through the Affordable Care Act, hoping to get treatment for progressive tooth decay.

He needed two implants but, to his dismay, the plan did not cover them. To pay the $10,500 bill, he had to take out loans. “Dental insurance is basically useless,” said DiGeronimo. “It’s a sham, a waste of money, and another case of the haves versus the have-nots.”

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As for older Americans, many lose employer-based dental coverage when they retire even as they suffer from increasing dental problems. Among those 65 and older, 70 percent have some form of periodontal disease, according to the Centers for Disease Control and Prevention. Yet basic Medicare plans do not include dental coverage, although options exist for seniors to purchase it.

Overall, in 2015, almost 35 percent of American adults of working age did not have dental insurance. By contrast, only about 12 percent of American adults under 65 did not have medical insurance in 2016. That lack of coverage and treatment can diminish economic and social opportunities — for instance, it can be costly at work or in a job interview not to smile because of unsightly or missing teeth.

Eventually, poor prevention and treatment can become a medical problem — leading to serious, and occasionally deadly, health consequences. In an infamous 2007 case — described by Mary Otto in her book “Teeth: The Story of Beauty, Inequality and the Struggle for Oral Health in America” — Deamonte Driver, a 12-year-old boy in Maryland, died after a tooth infection spread to his brain. The family’s Medicaid coverage had lapsed.

Research has demonstrated links between periodontal infections and chronic conditions like diabetes and cardiovascular disease. Studies have found associations between periodontitis and adverse pregnancy outcomes, such as premature labor and low birth weight. Tooth problems also hinder chewing and eating, affecting nutritional status.

The split between the medical and dental professions, however, has deep roots in history and tradition. For centuries, extracting teeth fell to tradesfolk like barbers and blacksmiths — doctors didn’t concern themselves with such bloody surgeries.

In the U.S., the long-standing rift between doctors and dentists was institutionalized in 1840, when the University of Maryland refused to add training in dentistry and oral surgery to its medical school curriculum — leading to the creation of the world’s first dental school.

Tuller poses for a photograph without his partial dentures. He says during his period of intense dental care, he hated wearing temporaries and often braved the public with missing front teeth. (Heidi de Marco/KHN)

Dentists have in some ways benefited from the separation — largely escaping the corporate consolidation of American medicine, with many making good livings in smaller practices. Patients often willingly pay out-of-pocket, at least to a point.

Some people deliberately forgo dental coverage, considering it less urgent than having insurance against medical catastrophes. “You might not get a job as hostess at the restaurant, but by the same token people that have a lot of missing teeth live to tell the tales,” Lubet said.

With fluoridation and advances in treatment, many Americans have come to take the health of their teeth for granted and shifted their attention to more cosmetic concerns. And the dental field has profited from the business.

In my experience, which includes extensive travel in other countries, Americans often seem disoriented or even horrified when confronted with imperfect dentition. During my period of intense dental care here, I hated wearing temporaries and often braved the public with missing front teeth. I found myself routinely reassuring people that, yes, I knew about the gap, and yes, I was having it dealt with.

Meanwhile, the bold line between what is covered or what is not often strikes patients as nonsensical.

Last fall, Lewis Nightingale, 68, a retired art director in San Francisco, needed surgery to deal with a benign tumor in the bone near his upper right teeth. The oral surgeon and the ear, nose and throat doctor consulted and agreed the former was best suited to handle the operation, although either one was qualified to do it.

Nightingale’s Medicare plan would have covered a procedure performed by the ear, nose and throat doctor, he said. But it did not cover the surgery in this case because it was done by an oral surgeon — a dental specialist. Nightingale had no dental insurance, so he was stuck with the $3,000 bill.

If only his tumor had placed itself just a few inches away, he thought.

“I said, what if I had nose cancer, or throat cancer?” Nightingale said. “To separate out dental problems from anything else seems arbitrary. I have great medical insurance, so why isn’t my medical insurance covering it?”

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

Choosing Between Death And Deportation

May 18, 2018

“Dear the most highly respected judge and court, I’m writing this because I love my mom. My mom is very important to me. I have no idea what to do without her. Even though my mom’s afraid, she’s not giving up.”

This is the beginning of a plea written by a 13-year-old girl to the Department of Homeland Security. The goal: to get her mother the insurance coverage she would need to enter a clinical trial.

Two years ago, the girl’s mother learned she had advanced stomach cancer. Undocumented and uninsured, the mother received free treatment at Bellevue Hospital in Manhattan through New York’s emergency Medicaid program, which undoubtedly prolonged her life.

Then, last fall, her doctor identified her as a good candidate for a medicine that has been remarkably effective for some lung cancers. Would it work for her disease? The researchers were eager for patients like J. to help them answer that question. (Kaiser Health News is identifying the patient by her first initial only, because of the threat of deportation.)

“You look at these clinical trials — there are some patients who just forget to die,” said Dr. Steve Lee, J.’s oncologist. “She could be one of these long-term survivors.”

But it would not be a simple process for J. to enter a clinical trial. She emigrated from China 18 years ago on a visa that had long since expired. Her husband’s visa also expired years ago. The Queens couple have three children who are U.S. citizens, ages 13, 12 and 4.

To be accepted into the trial, J. needed the more complete coverage traditional Medicaid offers. And to get that meant declaring herself to Homeland Security and asking the agency not to act on its standing deportation order against her. That would call attention to herself and her status — and provide the agency with her address and the names of everyone she lived with.

“Before getting sick, legal status was clearly important,” J. said through a translator. “Now, both legal immigration status and my ability to continue to live are intertwined, because I can only get good treatment if I obtain legal status.”

The family faced this dilemma under President Donald Trump’s growing threat of deportations. Federal figures show arrests of undocumented people living in the U.S. were up 40 percent in the first four months of 2017 compared with the same period in 2016. The administration also is considering a change that would penalize legal immigrants if they use public benefits like Medicaid.

Up to the point of the clinical trial, J. got care very similar to what anyone with private insurance might get. And that is a function of residence. Each state covers care for undocumented immigrants through its emergency Medicaid program differently, and New York has one of the most generous programs in the country.

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“In some states, they say giving you dialysis is keeping you from dying. We are going to put you on emergency Medicaid,” said Steven Wallace, a health professor at UCLA, who has studied immigrant health care in the U.S. “In other states — Georgia comes to mind — they will not put you on emergency Medicaid until you are in diabetic shock.”

By the time J. learned of the drug trial, she’d had chemotherapy and separate surgeries to have her ovaries and part of her stomach removed. As comprehensive as New York’s emergency Medicaid program is, it does not cover the costs associated with drug trials, even in dire situations.

For context, some estimates suggest that stomach cancer treatment for one year costs about $100,000. Costs vary by hospital, and Medicaid pays hospitals less.

Bellevue did not provide a tally of J.’s medical bills. The limited research available on care for very sick, undocumented immigrants shows that the treatment can vary even by county within a state. More often than not, Wallace said, when beset by a life-threatening illness such as stomach cancer, undocumented women and men miss out on the tests, procedures and drugs that could extend their lives.

By virtue of living in New York, J. did receive good care. But was the chance at the drug trial worth the risk of her or her husband being deported?

For most of an interview with a reporter, J. spoke Mandarin through a translator because of her limited English skills. But when asked whether she was more afraid to die or be deported, she answered directly, in English.

“Yeah, I [am] afraid to die, more than be deported,” J. said. “Of course. Because my family need[s] me. My children need me.”

Domna Antoniadis, a senior staff attorney at the New York Legal Assistance Group, works just across the hall from Dr. Lee at Bellevue. Her job is to help patients jump through bureaucratic hoops to get health coverage, and she said J. had a compelling case.

“She’s been here for almost 20 years. She has three young U.S. citizen children. She’s never been arrested; no criminal history. She’s worked. And right now, she has a very aggressive form of cancer,” Antoniadis said. “She’s saying, ‘Here I am. This is what’s going on with me, but please don’t remove me.’”

J.’s husband said his wife did everything she could to battle her disease, including changing her diet, walking up hills for exercise and following doctor’s orders. The decision on the drug trial was clear, he said.

“Life is more important than anything else. You have to face the cancer,” he said, speaking through a translator. “You have to face the pressures. You just have to do whatever it takes so that you can keep on living.”

J. submitted the application, and Antoniadis advised the family to be cautious. She told them if federal agents show up at the house, before opening the door the family should make sure the officials have a warrant. Her attorney gave J. a guide outlining her rights in Mandarin.

Over the fall, J.’s husband said the family felt vulnerable.

“We watch the news,” he said. “We see the things Donald Trump says, and we see that he’s been tough on immigration and has tried to make a lot of changes. So, for sure, we’re more worried.”

As they waited to hear from Homeland Security, a kind of balled-up fear settled over the family. J. talked less. Their 13-year-old daughter took over doing the dinner dishes. Their 12-year-old son set the table and played fewer video games, trying to make his mom happy. Their kid sister, age 4, asked why everything was different.

Before Homeland Security could respond, J. got word from New York’s traditional Medicaid program that she was accepted. The application to delay deportation was enough for the state to open the program to J. She had her first drug trial treatment last December. She tried to savor life.

“Now I’m not nearly as strict with my kids. I sort of just let them be kids. Before, I’d give them extra homework on top of what’s assigned at school. Now, I just want them to be happy,” she said. “Between my husband and me, we care a lot less about money. Before, we only go out to dinner once a month. Now we treasure every moment we have.”

Almost as soon as J. was in the drug trial, she was out. Her oncologist, Lee, said J. “had rapid growth of her cancer” and couldn’t remain in the trial. By early January, J. had started hospice. Her husband said it was a very difficult month for her, and on Feb. 6, J. died.

Asked if he thought the trial was worth all the risk and stress it caused the family, Lee said: “I think it’s easier to say that going on the drug trial was a waste of time, in retrospect. But the alternative for cancer like this is that she would invariably die. So I think that the opportunity to give her a shot at long-term survival was one worth putting a lot on the line for.”

Lee said what the trial really gave J., and her family — for a time at least — was hope.

Dan Gorenstein is the health care reporter for Marketplace. This story was produced in partnership with WHYY’s The Pulse and Kaiser Health News.