Shouldn't the primary goal of a health care system be delivering efficient care at a reasonable price, not rewarding shareholders or buttressing the economy?

This article was published May 24, 2019, by Kaiser Health News. It also ran as an opinion piece in The New York Times.

By Elisabeth Rosenthal

As calls for radical health reform grow louder, many on the right, in the center and in the health care industry are arguing that proposals like "Medicare for All" would cause economic ruin, decimating a sector that represents nearly 20% of our economy.

While exploring a presidential run, former Starbucks chief Howard Schultz called Medicare for All "not American," adding, "What industry are we going to abolish next—the coffee industry?" He said that it would "wipe out the insurance industry."

A fellow at the libertarian Cato Institute wrote that it would "carpet bomb the industry." David Wichmann, the chief executive of UnitedHealth Group, warned that it "would surely have a severe impact on the economy and jobs."

It's true: Any significant reform would require major realignment of the health care sector, which is now the biggest employer in at least a dozen states. Most hospitals and specialists would probably lose money. Some, like the middlemen who negotiate drug prices, could be eliminated. That would mean job losses in the millions.

Though it will be economically painful, the point is to streamline for patients a Kafka-esque health care system that makes money for industry through irrational practices. After all, shouldn't the primary goal of a health care system be delivering efficient care at a reasonable price, not rewarding shareholders or buttressing the economy?

In 2012, Harvard economists Katherine Baicker and Amitabh Chandra warned against "treating the health care system like a (wildly inefficient) jobs program." They were rightly worried that the health care system was the primary engine of recovery from the Great Recession. And yet the revelation that the health care sector added more jobs last year than any other in the economy was greeted by many as good news.

It's not surprising that those involved in the business of medicine have joined forces in a lobbying and media campaign, the Partnership for America's Health Care Future, to ward off transformational reform, particularly Medicare for All. But fed-up voters seem ready to upend an industry that saps their finances, wastes their time and doesn't deliver particularly good care. Few people would mourn the end of $35 million annual compensation packages for insurance executives or the downsizing of companies that have raised insulin prices to 10 times what they are in Canada—though they might miss hospitals' valet parking and private rooms.

Well over half of Americans already say they have a favorable view of Medicare for All. Though approval falls off when confronted with details such as higher taxes, it is clear that the electorate is searching for something big. Change could come in many guises: for example, some form of Medicare expansion, government negotiations on drug prices or enhancing the power of the Affordable Care Act. The more fundamental the reform, the more severe the economic effect.

The first casualties of a Medicare for All plan, said Dr. Kevin Schulman, a physician-economist at Stanford, would be the "intermediaries that add to cost, not quality." For example, the armies of administrators, coders, billers and claims negotiators who make good middle-class salaries and have often spent years in school learning these skills. There would be far less need for drug and device sales representatives who ply their trade office to office and hospital to hospital in a single-payer system, or one in which prices are set at a national level.

Some geographic areas would be hit particularly hard. A single hospital system is by far the biggest employer in many post-manufacturing cities like Pittsburgh and Cleveland. Hospitals and hospital corporations make up the top six employers in Boston and two of the top three in Nashville. Hartford is known as the insurance capital of the world. Where would New Jersey be if drugmakers took a big hit, or Minnesota if device makers vastly shrank their workforce? (That may be why some Democratic representatives and senators from these left-leaning states have been quiet or inconsistent on Medicare expansion.)

Stanford researchers estimate that 5,000 community hospitals would lose more than $151 billion under a Medicare for All plan; that would translate into the loss of 860,000 to 1.5 million jobs. A Navigant study found that a typical midsize, nonprofit hospital system would have a net revenue loss of 22%.

Robert Pollin, an economist at the Political Economy Research Institute of the University of Massachusetts-Amherst, is frustrated not just by the doomsday predictions but also by how proponents of Medicare for All tend to gloss over the jobs issue.

"Every proponent of Medicare for All—including myself—has to recognize that the biggest source of cost-saving is layoffs," he said. He has calculated that Medicare for All would result in job losses (mostly among administrators) "somewhere in the range of 2 million"—about half on the insurers' side and half employed in hospitals and doctors' offices to argue with the former. Supporters of Medicare for All, he said, have to think about a "just transition" and "what it might look like."

Of course, if more people get health insurance under an expanded Medicare, there will be a greater need for some workers—like nurse practitioners and physician assistants. And there is a large unmet labor need in caring for an aging population. The latter are mostly low-wage jobs, however, and neither compensates for the losses.

Pollin suggests that a transition to Medicare for All should be accompanied by a plan to give those made redundant up to three years of salary and help in retraining for another profession.

Despite the short-term suffering caused by any fundamental shift in our health care delivery system, reform would ultimately redirect resources in ways that are good for the economy, many experts say.

"I'm sympathetic to the impact that changes will have on specific markets and employment—we can measure that," Schulman said. "What we can't quantify is the effect that high health care costs have had on non-health care industries."

The expense of paying for employees' health care has depressed wages and entrepreneurship, he said. He described a textile manufacturer that moved more than 1,000 jobs out of the country because it couldn't afford to pay for insurance for its workers. Such decisions have become common in recent years.

"Yes, these are painful transitions," said Baicker, who is now the dean of the University of Chicago's Harris School of Public Policy. "But the answer is not to freeze the sectors where we are for all time. When agriculture improved and became more productive, no one said everyone had to stay farmers."

In a country where most elder care is left to family, many LGBTQ people are estranged from relatives and don't have that option. Turning to others for care makes them uniquely vulnerable.

This article was published May 22, 2019, by Kaiser Health News.

By JoNel Aleccia and Melissa Bailey

Two years ago, nursing professor Kim Acquaviva asked a group of home care nurses whether they thought she was going to hell for being a lesbian. It's OK if you do, Acquaviva said, but is the afterlife within your scope of practice?

After Acquaviva's talk, an older nurse announced she would change how she treats LGBTQ people under her care.

"I still think you're going to hell, but I'm going to stop telling patients that," the nurse told Acquaviva.

Acquaviva, a professor at the George Washington University School of Nursing in Washington, D.C., raised the example Tuesday at a panel hosted by Kaiser Health News on inclusive care for LGBTQ seniors. It was one of many examples of discrimination that these older adults may face as they seek medical care.

LGBTQ baby boomers, dubbed "the Stonewall Generation," came of age just as the 1969 New York uprising galvanized a push for gay rights. After living through an era of unprecedented social change, they're facing new challenges as they grow old.

"Fifty years after Stonewall, there's a new generation of LGBT elders who never thought they'd get an AARP card," said Nii-Quartelai-Quartey, AARP's senior adviser and national liaison on the issue who also participated in Tuesday's panel.

By 2030, there will be an estimated 7 million LGBT people in America over 50. About 4.7 million of them will need elder care and services, according to SAGE, an advocacy group.

In a country where most elder care is left to family, many LGBTQ people are estranged from relatives and don't have that option. Turning to others for care—in assisted living centers, nursing homes or hospice settings—makes them uniquely vulnerable.

"The fear of living in a situation where they can't advocate for their own care and safety is terrifying," said Hilary Meyer, chief enterprise and innovation officer for SAGE.

Three-quarters of LGBT people are worried about having adequate family or social supports, according to a nationally representative survey of AARP members released last year.

More than a third are concerned they'll have to hide their identity to find suitable housing as they age. And at least 60% are concerned about neglect, harassment and abuse, the survey showed.

Often, those fears are founded, according to results of a forthcoming survey of more than 850 hospice and palliative care providers about LGBT patients and family experiences.

"I think the information we've got is actually quite discouraging and quite concerning," said Gary Stein, a professor at the Wurzweiler School of Social Work at Yeshiva University who co-led the project.

Most providers surveyed said LGBT people received discriminatory care, he said. For transgender patients, two-thirds said that was true.

Caregivers reported hundreds of examples of disrespectful treatment, Stein said.

When LGBT couples would hold hands, staff "might roll their eyes, make faces at each other," he said. They often failed to consult the patients' partners, directing questions to biological family members instead.

In several instances, staff would "try to pray" to the patient or their family, Stein said.

Some LGBT patients were left in soiled diapers or rationed pain medication in a "punishing way" because of their sexual identity, he added.

"For transgender patients, there was lots of discomfort around what to call the person," Stein said. "A number of people said patients were called 'it' instead of a pronoun."

Twenty states have laws that specifically protect LGBT people against discrimination, but most don't, Stein noted. A recently enacted Trump administration "conscience rule" allows providers to decline to provide care that goes against their moral or spiritual beliefs. Advocates said the new rule could make it easier to discriminate against LGBTQ people.

Still, a growing number of senior housing and care sites are putting non-discrimination policies in place and training personnel to provide LGBTQ-inclusive care.

The SAGE staff has trained more than 50,000 people at more than 300 sites nationwide, Meyer said. They learn best practices for asking questions that don't perpetuate stigma.

"It's even something as simple as asking somebody, a woman, if her husband will be visiting," said Meyer, noting that the question forces the person to decide whether to announce her sexual identity. "Having to come out of the closet that way can be very challenging."

In a few high-profile instances, LGBTQ couples or individuals have sued providers for discrimination.

In 2016, Lambda Legal, a gay advocacy group, sued an Illinois senior residential facility for failing to protect Marsha Wetzel, 70, a disabled lesbian, from harassment and violence by other residents. The 7th Circuit Court of Appeals ruled that a landlord may be held liable under the Fair Housing Act for failing to protect a tenant from known, discriminatory harassment by other tenants.

Karen Loewy, Wetzel's attorney, would say only that "the matter has been resolved," and Wetzel is now living at a Chicago-area facility.

Last summer, in Missouri, a married lesbian couple, Mary Walsh, 73, and Bev Nance, 69, sued a senior-living facility that denied their housing application. The Friendship Village assisted living center cited a "cohabitation policy" that defines marriage as between one man and one woman as the reason.

A U.S. district judge dismissed the suit in January, saying that their claims of discrimination were "based on sexual orientation rather than sex alone." The distinction is important because neither federal nor state laws explicitly prohibit discrimination based on sexual orientation. The suit has been stayed pending Supreme Court decisions that could affect the outcome.

In the meantime, the couple has remained in their single-family home, where Walsh has developed health problems, said their lawyer, Julie Wilensky of the National Center for Lesbian Rights.

"They wanted to be planning in advance so that they would have stability when issues might come up in the future," Wilensky said.

Not every LGBTQ person will want to step forward in the way Wetzel, Walsh and Nance have, said Loewy.

"When you feel like you're being denied care … you may not want to be out there to wave the banner," she said.

Finding an LGBTQ-tolerant facility can be difficult. People are often bound by geography, and options are limited.

Still, LGBT people and their families can—and should—have candid conversations with potential caregivers before they make a choice, Loewy said.

One key question: Ask what kind of experience staff have working with LGBTQ people.

"If they say they haven't [treated any such patients], don't believe them," Loewy said. "You want to hear a real clear commitment to ensuring every resident of this facility is going to be treated with dignity."

Patients are never asked about their immigration status, and the staffs have set up protocols in case the offices are raided by immigration authorities.

This article was published May 21, 2019, by Kaiser Health News.

By John M. Glionna

FRESNO, Calif.—On the 15-mile drive between his two Central Valley medical clinics, Dr. J. Luis Bautista often passes armies of farmworkers stooped over in the fields, picking onions, melons and tomatoes.

Most of the 30,000 annual office visits to his small staff of doctors and nurses in downtown Fresno and the nearby rural town of Sanger are by these farmworkers. Many of them are undocumented.

The 64-year-old physician has personal insight into the struggles of these laborers: He was once one of them. As a boy, he picked fruit alongside his parents and nine siblings in Ventura County. The family made $4,000 a year back then, a little over $30,000 in today's dollars—rarely enough to spare for doctor's visits.

These days, Bautista sees that many farmworkers still lack the transportation, money or time off from work to treat injuries, let alone seek preventive medical care. Plus, there is the heightened fear that by seeking medical treatment they might be exposed to federal immigration authorities.

"I pledged in medical school to help these people in the farm fields," said Bautista. "I knew how it felt not to have anything, not to have the money to go to a doctor."

Now he treats them whether or not they have money—or legal documents. "We never say no to patients," he said.

President Donald Trump's campaign pledge to deport an estimated 11 million immigrants who have entered the U.S. illegally has fostered fear among farmworkers nationwide. Terrified they'll be caught in an immigration dragnet, farm laborers across the San Joaquin Valley without U.S. citizenship or official documents avoid driving to see a doctor or visit an emergency room.

Although California law strictly limits the state's cooperation with U.S. immigration enforcement, some jurisdictions outside the Central Valley have decided to participate in federal efforts to detain undocumented workers. Many here fear that local officials will soon join them, Bautista said.

Farmworkers also worry that personal information housed in doctors' offices could find its way into the hands of federal authorities. And some fear that if they enroll in programs for low-income residents, they'll later be denied permanent residence, the so-called green card, or U.S. citizenship.

The Trump administration has proposed a federal rule change that would make it harder for legal immigrants to get green cards if they have received certain public assistance benefits, including food stamps, housing subsidies and Medicaid—the government-funded health care program for people with low incomes.

"Many people don't know what the government will do," Bautista said. "They tell me that one reason they don't go to the doctor is over fear they'll be reported."

Bautista's two clinics provide a haven for immigrants burdened by these concerns. Patients are never asked about their immigration status, and the staffs have set up protocols in case the offices are raided by immigration authorities.

"I feel secure with him," said Julia Rojas, a 45-year-old undocumented mother of five who has picked oranges in Fresno County for two decades. "He's one of us."

Bautista accepts as payment whatever his patients can offer: onions, handmade key chains, eggs, even live chickens.

Dan Baradat, a Fresno personal injury lawyer who has handled cases involving migrant workers, said Bautista's clinics are indispensable to the Central Valley's poorer residents. "They're stand-up people who provide care to people who could not otherwise afford it," he said.

[caption id="attachment_310148" align="aligncenter" width="1024"] Bautista, a former farmworker, runs two clinics in California's Central Valley providing care—often free of charge—for migrants who don't have money and are deeply worried about the federal government's hard-line stance on immigration. (John M. Glionna for KHN)[/caption]

Bautista's clinics are among a network of federally supported community clinics that provide care for nearly 1 million migratory and seasonal agricultural workers and their families around the U.S. But few providers have a better connection to the community they serve than Bautista, who in 2013 founded a nonprofit that raises money to assist low-income farm families with food and clothing, and provides scholarships to send their children to college.

Born in Fresno, Bautista was deported with his parents when he was just 3 months old. He lived in Mazatlán, Mexico, until he returned to the U.S. at age 12.

In 1979, at age 24, he was picking lemons when his mother came running out to the fields with the letter announcing he'd been admitted to medical school. She'd always been big on education for her 10 children.

Bautista attended the Medical College of Wisconsin in Milwaukee and did his residency in internal medicine at the University of Nevada-Reno.

Today, Bautista's two sons are also doctors, as is his son-in-law, who was a farmworker before attending medical school and has joined the clinic. They all know that fear of deportation is affecting farmworkers' health.

Dr. Ed Zuroweste, founding medical director of the nationwide Migrant Clinicians Network, said a recent survey of providers within the organization underlined these fears.

"What we're seeing on the front lines is that farmworkers and their families are not coming in for regular appointments as frequently as they had before," he said.

Bautista said many undocumented farmworkers rely on home remedies to treat ailments such as diabetes and high blood pressure, often until it's too late for effective medical treatment. "By the time I see many diabetic patients, their feet are already necrotic and we have to amputate," Bautista said. "It's terrible to see."

Jose Jimenez, a former farmworker, said his father, who is not in this country legally, was too afraid to drive to Bautista's office, even after developing signs of melanoma on his face. His dad's fears were heightened last year following the death of an undocumented couple, the parents of six children, whose van overturned while they were fleeing federal immigration officers in nearby Delano.

"He was even afraid to drive to the supermarket," said Jimenez, 30. "He knew that if he was picked up, he'd be deported. For a close-knit family like ours, that would mean losing everything." But Jimenez finally persuaded his father to visit Bautista.

Bautista's clinics are on guard against U.S. immigration officials, known in this community as la migra.

Law enforcement officials requesting records are asked for a warrant, and staff members are on the lookout for intruders. "By the time any ICE officers got inside the office," Bautista said, "we'd have people hiding in the restrooms."

Julia Rojas said her fears of deportation almost killed her. Years ago, before she began seeing Bautista, she chose to ignore the piercing pain in her lower abdomen. In the U.S. without papers and afraid to drive, she spent nearly a day drinking mint leaves in hot water—a remedy her mother used for stomach pain back in Mexico.

Unable to stand the spasms, she finally went to the nearest emergency room, where doctors removed her gall bladder. "Among undocumented workers in the fields, we have a dark little joke," Rojas said. "You can survive out here. Just don't get sick."

Because of ongoing fears about privacy violations tangled up with gun control, the bill never got a full vote in the Missouri Senate.

This article was first published on Monday, May 20, 2019 in Kaiser Health News.

By Lauren Weber

Missouri retained its lonely title as the only state without a statewide prescription drug monitoring program — for the seventh year in a row — after the legislative session ended Friday.

Patient advocates, politicians, experts and members of the medical community had hoped this would finally be the year Missouri would create a statewide electronic database designed to help spot the abuse of prescription drugs. After all, Republican Gov. Mike Parson had pushed for it and, more important, its longtime opponent was no longer in office to block it.

But, because of ongoing fears about privacy violations tangled up with gun control, the bill never got a full Senate vote. And finance site WalletHub last week ranked Missouri third worst in the country for its drug use based on a review of arrests, overdose rates, opioid prescriptions and other measures.

Katie Reichard, a lobbyist with Missouri Primary Care Association who has been working in and around the Missouri legislature for almost 15 years and previously pushed for the issue, said this proposal has bedeviled the state capital as none other while the opioid crisis continues to rage nationwide.

"I've never seen anything take seven years to get anywhere, and especially something that's going to be put into place to save lives."

Missouri's cities, neighboring states and the federal government have been forced to create a patchwork of incomplete workarounds. Those include a voluntary program tracking patients' prescriptions run by St. Louis County that receives federal funding and a statewide monitoring system put into place by former Republican Gov. Eric Greitens that tracks physicians' prescriptions.

And yet, the state cannot seem to legislate a complete fix. "It's frustrating to watch the rest of the country get this done and watch Missouri be the last one," said Dr. Sam Page, the St. Louis County prescription drug monitoring program architect and current St. Louis County Executive.

To be sure, the databases don't eliminate the ability of drug abusers to acquire prescription opioids. But the federal Centers for Disease Control and Prevention has called such statewide patient monitoring databases "among the most promising state-level interventions" to improve opioid prescribing and protect at-risk patients.

It's an embarrassment Missouri can't figure out its own statewide system, often referred to as a PDMP, according to St. Joseph pharmacist JulieMarie Nickelson. "No one in the pharmacy or medical world really understands it," she said.

Privacy, Guns And Opposition

While a PDMP bill has been introduced every year in the Missouri legislature since 2005, it was initially championed by the minority Democratic Party, which meant it didn't have much of a shot at passing until 2012.

Then New Hampshire approved a statewide program in 2012, leaving Missouri as the sole holdout. That pressure, combined with an uptick in awareness of drug abuse, led to a swell of bipartisan agreement.

A statewide PDMP bill passed the Missouri House handily that year, then met its biggest adversary: Republican state Sen. Robert Schaaf, whose district stretched from Kansas City to St. Joseph along Missouri's western border.

Since then, Schaaf — who is also a family physician — filibustered or insisted on kill clauses that would never pass the House, citing his concerns over privacy and personal liberty issues along with his belief it was an ineffective tool. Year after year, his efforts would defeat PDMP bills.

Schaaf has said the risk of a database of patient information being hacked — and the government having access to the information — far outweighed the potential benefits. He also tapped into underlying fears of privacy violations, driven in part by a 2013 scandal over the Missouri Highway Patrol turning over a database of concealed weapons permit holders to a federal agent.

"I've always been opposed to taking private citizens' information and putting it on a government database to which many, many people have access," he told Kaiser Health News. "My understanding is there is no computer information to which the NSA is not privy. How long is it going to be 'til this is used to pare down the number of people with concealed weapons or weapons at all?"

By stoking privacy fears and connecting them to gun rights, Schaaf also helped tap into grassroots far-right opposition that lives on to this day. A YouTube video tweeted by this year's anti-PDMP supporters details how the St. Louis County monitoring system could be used in "passing your personal information on to the federal government, which could use it to infringe on your right to bear arms."

To date, the only reported hack has been of Virginia's PDMP database, though it is unclear if the hackers were able to access medical records.

Over the years, Missouri's PDMP advocates, led by Republican Rep. Holly Rehder, unsuccessfully tried to assuage such concerns by offering amendments to delete records older than three years and ensure medical information could not be tied to buying a gun. And while Schaaf did an about-face in 2017 and agreed to stop filibustering the proposal, he effectively killed it with his only stipulation: that all physicians be required to use it. That measure, which took away the inherent voluntary aspect of the PDMP, failed in the House.

"If they're going to take our liberty away for something that's never been proven to work, doctors have to use it," Schaaf told Kaiser Health News.

The former head of the St. Louis County Health Department, Faisal Khan, who in 2017 helped start the voluntary county-based PDMP program that now covers other portions of the state, claims the opposition goes deeper than what he called "totally unfounded" privacy concerns.

"They view St. Louis County and St. Louis City and St. Louis, in general, as this liberal Democratic bastion that they don't want anything to do with," he said. "It's the usual nonsense that we're seeing around the country at the moment, and it's stymying progress in the parts of the state where we need it the most."

But this year, Schaaf had hit his term limit of eight years in office and did not return to the Missouri Senate. Finally becoming like every other state seemed within reach — until a group of six Republican state senators formed a new conservative caucus and filibustered yet again over the issue, citing the same privacy issues and civil liberties.

"The conservative caucus has carried his torch on," Reichard said.

A Series Of Workarounds

Now, because the legislature has refused to move on the issue, cities, states and the federal government must continue to rely on the stopgaps they created to help address the opioid problem ravaging Missouri.

Today, 72 jurisdictions have opted into St. Louis County's voluntary prescription drug monitoring system so pharmacists and doctors could check a patient's other prescriptions. It now covers 84% of the state's population.

Even St. Joseph, one of the areas hardest hit by the opioid epidemic and where Schaaf lives, joined last year.

For Nickelson, a pharmacist at Rogers Pharmacy in the city of about 76,000 people, the voluntary database means she no longer has to spend upward of 30 minutes on the phone tracking down whether a patient had prescriptions for drugs elsewhere.

"It's really helpful to us as it makes it so we can make sure that patients aren't taking medications that interact and can increase risk for an overdose," she said. "We just want to make sure our patients are safe, and we want to make sure medication that's not necessary doesn't get into the community."

Since her city's voluntary PDMP has been in effect, she estimates she sees a handful fewer people each week who were doctor-shopping, a particular risk considering the pharmacy is less than 5 miles from the Kansas border.

Missouri was a premier destination for pill-shopping, Page said, but that's changed.

"Our PDMP is first-class, as any in the country," Page said. "We have gaps, but those will continue to fill in. If the state continues to not move forward with this, then St. Louis County will continue to do the right thing."

And while St. Louis County built its voluntary database in part with $200,000 from the U.S. Department of Justice, interstate sharing of the data with neighboring Illinois, Kansas and Oklahoma didn't happen until February. Eight states border Missouri and more states are expected to collaborate with St. Louis County's system this year. But data-sharing can occur only among states that have managed to bend or rewrite their regulations to accommodate the one state in the nation without a statewide program.

Tennessee even created and passed legislation to allow it to communicate with the St. Louis County program while Missouri was still haggling over its PDMP bill, according to Spring Schmidt, acting head of the St. Louis County Department of Public Health.

The system that Greitens created when governor, along with Express Scripts, to monitor physicians' prescriptions for unusual patterns led to 50 referrals to the Missouri Healing Arts Board — the disciplinary board for medical practitioners in Missouri — for prescribing issues since March 2018, according to Missouri's head of Health and Senior Services, Dr. Randall Williams.

Ideally, Williams said, he would love to combine a statewide version of the voluntary PDMP system with Greitens' physician-monitoring one, but he's waiting on the legislation.

Reichard can't help but wonder why the state won't join the rest of the nation in passing it.

"I'm not saying do what everyone else is doing," she said. "But if 49 other legislatures are saying 'This is important, we need to save lives,' I don't understand why Missouri can't find a way to compromise and do what's best for its citizens."

Lauren Weber: LaurenW@kff.org, @LaurenWeberHP