The federal judge in Texas who ruled the Affordable Care Act unconstitutional earlier this month said that the law can remain in effect while under appeal.

U.S. District Court Judge Reed O’Connor wrote in his ruling filed on Sunday that “many everyday Americans would otherwise face great uncertainty during the pendency of appeal.”

But O’Connor still stands by his initial decision, he wrote, that a recent change in federal tax law that eliminated the penalty on uninsured people, in turn, invalidates the entire health care law, which is also referred to as Obamacare.

Before issuing the stay, O’Connor struck down the ACA on Dec. 14, siding with a group of 19 Republican attorneys general and a governor, led by Texas Attorney General Ken Paxton.

As Julie Rovner of Kaiser Health News wrote for NPR following the district court judges decision, “The plaintiffs argued that because the Supreme Court upheld the ACA in 2012 as a constitutional use of its taxing power, the elimination of the tax makes the rest of the law unconstitutional.”

Judge O’Connor agreed with that reasoning.

“In some ways, the question before the Court involves the intent of both the 2010 and 2017 Congresses,” O’Connor wrote in his 55-page decision. “The former enacted the ACA. The latter sawed off the last leg it stood on.”

Democrats, meanwhile, say they plan to challenge O’Connor’s partial judgment. A spokesperson for California Attorney General Xavier Becerra — who’s joined by 16 other states defending the ACA — said his state is “prepared to appeal the December 14 decision imminently.”

“We’ve always said we’re going to protect the healthcare of Americans and make clear that the ACA is the law of the land,” Becerra said in a statement emailed to NPR. “Today the judge granted what we asked for when we filed our expedited motion but at the end of the day, we’re working to keep healthcare affordable and accessible to millions of Americans, so we march forward.”

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The benefits of retiring in South Carolina’s low country are clear to Joyce East. Her home, sandwiched between the Atlantic Ocean and downtown Charleston, overlooks 120 acres of lush marshland. Palm trees and Spanish moss dot the property.

But the drawbacks of retiring only a few meters above sea level have also become apparent to the 91-one-year-old retiree. Since 2016, her home within Charleston’s Bishop Gadsden Retirement Community has weathered one snow storm, one ice storm and three hurricanes. She has had to evacuate twice in two years.

For East, these evacuations are just the cost of growing old on the coast. Three decades ago, East and her husband decided they wanted to retire somewhere warm on the waterfront. Four days after arriving in Charleston, the couple was forced to flee inland as Hurricane Hugo ravaged the coast. East would evacuate again for Hurricane Matthew in 2016, and once more for Hurricane Florence this past September.

“Now that we’ve done it this much, it’s more of a routine,” says East. She packs her belongings in a navy evacuation suitcase with her name printed on it in white lettering. “I have to kind of look at it as a mini-vacation now.”

As unpredictable weather starts to feel inevitable, staff at Bishop Gadsden have worked to make evacuations feel as routine to residents as Monday night’s pub trivia. This year’s personalized suitcases were a new touch.

“Our planning is 24/7, 12 months a year,” says Kimberly Borts, one of the staff members charged with ensuring Bishop Gadsden is ready to depart come hurricane season. “This isn’t just let’s get on a bus and go.”

When Governor Henry McMaster mandated residents evacuate in the lead up to Hurricane Florence, he set in motion a sequence of events staff had spent the year fine-tuning. Ambulances arrived at 2 a.m. to whisk away the 14 seniors too frail to make the journey upright. The remaining 111 residents boarded buses bound for a mountaintop inn. A U-Haul was loaded up with walkers and a bus carted off residents’ pets.

It’s high stakes logistics. Any hiccup — too few oxygen tanks, lost medication — would have been disastrous. But even a well-executed journey carries risks for Bishop Gadsden’s retirees, many of whom are accustomed to a regimented routine.

“When that schedule is altered, that’s when you begin to have some challenges,” says Borts. During this year’s departure, she saw anxious residents who traditionally require one oxygen tank per day go through two tanks or more. As the seniors made their journey inland, Borts noted more upset stomachs and more bathroom trips.

Immediately after they returned from the shelter, Borts says staff began plotting how to make the journey smoother for their seniors — next year.

“We would sort of say to our fellow staff members, ‘Well, next time we do this,’ or ‘Next year we need to do X,Y, Z,’ ” she recalls.

Statistics show there will be a next time. Far beyond the marshy coast of Charleston, emergency evacuations are starting to seem commonplace.

Susan Burns monitors evacuations for Sedgwick, a company that deals with insurance claims for senior-living communities across the U.S.

After nursing home owners made the fatal decision not to evacuate residents in advance of Hurricane Katrina, Sedgwick began offering to reimburse facilities for part of their evacuation costs. But, until recently, no facility had taken the company up on the offer.

“I had not seen this coverage triggered at all until last year,” says Burns. She traces the uptick in recent claims to the “amazing number of natural disasters back to back” that have ravaged states like Florida, California and Missouri.

“They’re just trying to recover some of the costs and lessen the financial blow,” she says. This year, Bishop Gadsden spent $350,000 on shelter and transportation. The facility had shelled out a similar amount in 2016 for Hurricane Matthew.

And they’re prepared to do it again.

“You take care of a residents during good times and bad times,” says Borts. “The most important thing we can do is plan to do this again.”

This story is part of NPR’s reporting partnership with Kaiser Health News, an editorially independent news service of the Kaiser Family Foundation. Rebecca Ellis is a Kroc Fellow at NPR.

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Tammy Fox wanted to help, after a friend took ill with a rare and difficult-to-diagnose autoimmune disorder that required many trips to the Mayo Clinic.

While Fox couldn’t do anything medically, she knew there was a way to ease some of the burden of medical bills and costs associated with doctor visits. She turned to the website GoFundMe and set up a site for her friend.

“You’ve got meals; you’ve got hotel stays,” she says. “And gas. So that all needed to be covered.”

Contributions came in from strangers, notes Fox, who lives in suburban Minneapolis. “It’s crazy cool how awesome people are and what they’re willing to give. People, when they come together, can just move mountains — and I think that’s awesome to see.”

GoFundMe, the largest online, crowdsourced fundraising platform, says contributors have raised more than $5 billion, all told, from 50 million donations in the eight years it has been in business.

Setting up a GoFundMe page has also become a go–to way for people in need of help to pay their doctors and other health providers. Medical fundraisers now account for 1 in 3 of the website’s campaigns, and they bring in more money than any other GoFundMe category, says GoFundMe CEO Rob Solomon.

“In the old paradigm you would give $20 to somebody who needed help,” Solomon says. “In the new paradigm, you’ll give $20, you’ll share that and that could turn into 10, 20, 50 or 100 people doing that. So, the $20 could turn into hundreds, if not thousands, of dollars.”

Stories of tragic illness and financial hardship — all of them with pictures of those suffering — are easy to find in GoFundMe’s medical section.

One such case is musician Carolyn Deal, from Marshall, N.C., who lost nearly all her hearing after a traumatic brain injury. Deal has raised nearly $25,000 for alternative treatments and procedures she would like to try that her health insurance won’t cover.

Americans’ confidence that they can afford health care is slipping, says Sara Collins, an economist at the Commonwealth Fund who studies American health care concerns. Even for conventional treatments that are covered under most health plans, the copays and high deductibles have left many people with health insurance they can’t afford to use.

Her organization recently surveyed working-age Americans, asking whether they felt they had the ability to pay an unexpected medical bill of $1,000 in 30 days. Nearly half said no.

“We find that underinsured people are nearly as likely to report problems paying their medical bills as people who don’t have any insurance,” she says. “And they also report not getting needed health care at rates that are nearly as high as those who are uninsured.”

So it shouldn’t be surprising that people are raising funds through crowdsourcing, Collins says.”But it really should be a deep concern for policymakers and providers.”

Solomon says there are challenges with how health insurance works and how people are covered.

“There’s just a lot of cost associated with the medical space, and it has become a very important category on GoFundMe,” he says.

Until about a year ago, GoFundMe kept 5 percent of fundraising proceeds in addition to collecting a nearly 3 percent credit card processing fee. It still charges the credit card fee but no longer collects the 5 percent surcharge.

This story is part of a reporting partnership with NPR, Minnesota Public Radio and Kaiser Health News.

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You wait in the sterile purgatory of your oncologist’s office, between your spouse and your daughter, for the doctor to give you the verdict on your latest scans.

“I’m afraid it’s not good news,” she says quietly, hands clasped.

Your lung cancer has grown despite your recent chemotherapy. Surgery, chemo and other treatments, she tells you, will likely only make you sicker.

“How long?” asks your spouse.

Four to six months, the doctor answers.

You may feel a surge of terror, confronted so starkly with news of your own death. You may also feel a welling-up of empathy.

And that’s the point of the exercise — the reason you’re wearing a heavy headset. You aren’t really dying, but you are looking out into a virtual world through the eyes of Clay Crowder, a fictional 66-year-old man who has incurable lung cancer.

The University of New England College of Osteopathic Medicine in Biddeford, Maine, and a nearby hospice are using this virtual reality simulation, developed by California-based Embodied Labs, to help nurses, other hospice workers and students learn about and empathize with patients at the ends of their lives.

“I was skeptical at first that a virtual reality tool could be so realistic,” says Daryl Cady, CEO of Hospice of Southern Maine. “But once I went through it, I realized what a viable method it could be, for not only teaching but also helping people understand [the] end of life better.”

The “Clay” virtual reality project is now used by some schools, hospice and senior care centers, including Comfort Keepers, a large system of in-home caregivers; Ohio’s Hospice of Dayton; and several locations of the Benedictine Health System’s elder care communities.

Researchers have discovered that virtual reality simulations like this one, can make viewers more empathetic to people they virtually embody: people of different races; people with colorblindness; even an avatar of an older version of themselves.

The United Nations has created about 20 virtual reality films, including one about a 12-year-old Syrian refugee and another profiling a Liberian woman whose family died from Ebola.

Last month, Stanford University’s Virtual Human Interaction Lab, which studies the link between virtual reality and empathy, found that people shown an immersive VR film built around the experience of a homeless man were more likely to sign a petition supporting affordable housing than people who read a narrative asking them to imagine themselves homeless.

In medicine, virtual reality has been used to reduce pain, help stroke victims recover, and allow doctors to plan and watch surgery.

Embodied Labs is one of the first companies whose videos have allowed viewers to “experience” dying. Elsewhere, virtual reality has been used directly with dying patients.

Hospitals and hospices have fitted patients with headsets to allow them to see realistic simulations of places on their bucket lists.

At the Royal Trinity Hospice in London, a dying woman and her husband revisited Venice, where they had gotten engaged — the simulation was part of a larger study about VR’s effect on physical and psychological symptoms at the end of life. Another woman walked the beaches of the Maldives. A third returned to Jerusalem, the city where she grew up.

What they’re going through

Carrie Shaw was 19 when her mother was diagnosed with early-onset Alzheimer’s disease. Five years later, when she hired caregivers for her mother, she wanted them to understand how brain atrophy had left her unable to see from the left sides of her eyes. So she covered one side of goggles with masking tape. This helped the aides understand, for instance, why her mother ate only the food on the right side of her plate.

Later, earning a master’s degree in biomedical visualization, Shaw used virtual reality to help health care providers feel what their patients felt. She founded Embodied Labs in 2016.

The company’s first virtual reality project was called “Alfred” Viewers don a VR headset to experience the world through the eyes of 74-year-old man with hearing loss, and vision loss from macular degeneration. Next, Shaw and her colleagues created the VR story of “Beatriz,” a fictional middle-aged woman who progresses through early and advanced stages of Alzheimer’s disease. “Clay” is their newest simulation.

“It’s so vitally important that people not fear hospice, but understand hospice,” says Cady, of Hospice of Southern Maine. “Virtual reality is appealing to the next generation. And if they take 30 minutes and put on the goggles and run through it and have even just a little sense of an understanding, just think of the change we might be able to make.”

Victoria Nguyen, a second-year medical student at the University of New England, experienced the “Clay” simulation at Gosnell Memorial Hospice House in Scarborough, Maine. As part of a geriatrics class, students can shadow hospice nurses for 48 hours.

Nguyen says experiencing the world as “Clay” made her think more about what dying patients might comprehend as they’re slipping away.

“I think it will help us become more empathetic with our patients,” she says. “Being able to experience the virtual reality kind of gives us an idea of what they might be going through and the frustration that comes along with it.”

Virtual reality may also encourage people to plan for the end of life, says Marilyn Gugliucci, director of geriatric education and research at the College of Osteopathic Medicine. Hospice of Southern Maine’s new building, expected to open in 2020, will have a simulation lab for families. Gugliucci has collaborated with the hospice; her geriatrics students, for instance, have the option of spending 48 hours at the hospice, shadowing nurses who care for the dying, and watching the VR video.

“People don’t really prepare for death,” Gugliucci says. “We’re trying to get more people doing advance directives and being thoughtful about what they want at the end of life, rather than being surprised by what’s going to happen. I think this lab really does that.”

Research suggests that as students progress through medical school, they tend to lose empathy for their patients. “So we definitely want to make sure they remain empathic,” Gugliucci said.

Real empathy, but for whom?

Not everyone believes that virtual reality is beneficial in that way. Researchers already know that simulations of being disabled must be constructed carefully to avoid creating prejudice.

Blindness simulations, for instance, can give a viewer an experience that’s more like becoming blind rather than the experience of a person who has adjusted to living with blindness. The initial experience might cause viewers to believe blind people are less capable than they are, critics say.

Yale psychologist Paul Bloom has been outspoken in his criticism of virtual reality being used to create empathy. Empathy, he argues, can be manipulated: A simulation could create empathy for a Syrian refugee — or for a man, “standing hungry in a food line” because a Syrian refugee took his job.

And more research is needed on whether these gains in empathy last.

In the last scene of the “Clay” simulation, Clay’s breath — yours — grows raspy and uneven. One of your daughters reads to you. Your wife tells you gently that you can go.

“It’s OK, honey,” she says. “You’ve got your girls here.”

You stop breathing. Your family kisses you goodbye. Aides push a gurney with your body, covered in an American flag, outside into the sunshine.Your wife and daughters walk behind you, a final procession.

The screen goes dark.

Kathleen Burge is writing about end-of-life care as part of a reporting fellowship on health care performance, sponsored by the Association of Health Care Journalists and supported by the Commonwealth Fund.

A version of this story originally ran on WBUR’s Common Health.

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Robert and Tiffany Cano of San Tan Valley, Ariz., have a new marriage, a new house and a 10-month-old son, Brody, who is delighted by his ability to blow raspberries.

They also have a stack of medical bills that threatens to undermine it all.

In the months since their sturdy, brown-eyed boy was born, the Canos have acquired nearly $12,000 in medical debt — so much that they need a spreadsheet to track what they owe to hospitals and doctors.

“I’m on these payment arrangements that are killing us,” said Tiffany Cano, 37, who has spent her lunch hours from her job at a regional bank on the phone negotiating payoff plans that now total $700 a month. “My husband is working four jobs. I work full time. We’re a hardworking family doing our best and not getting anywhere.”

The pair, who earn nearly $100,000 a year, are insured and have had no major illnesses or injuries. Still, the Canos are among the 1 in 4 Americans who report in multiple polls that the high cost of health care is the biggest concern facing their families. And they’re at risk of filing for bankruptcy; 62 percent of people who file do so, in part, because of medical bills.

“Oh, yes, that worry is always in the back of my mind,” Tiffany said.

The family is part of a struggling group: Middle-class folks who have followed the rules and paid for employer-based medical insurance, only to find that soaring health care costs — combined with high deductibles, high copayments and surprise medical bills — leave them vulnerable.

“I thought we’d be covered, and it’s just not enough coverage at all,” she said.

Robert Cano, also 37, had family health insurance for 2018 through his job as a manager at a large chain retail store, for which he pays nearly $500 per month. The plan’s $3,000 annual deductible and 40 percent coinsurance fees have added up faster than the Canos anticipated.

First came the nearly $4,000 bill from the in-network hospital where Brody was born Jan. 2, followed by separate fees from the anesthesiologist and the doctor who performed the routine delivery. Then, at 2 months, Brody was hospitalized with breathing problems that doctors said could be related to allergies or asthma. In May, Tiffany came down with a stomach virus that sent her to the emergency room for drugs to treat nausea and dehydration. Last month, the baby developed a bad case of bacterial conjunctivitis, or pinkeye.

“It’s been, like, $300 here, $700 there,” said Tiffany. “We had a hospital bill for him being sick of, like, $1,800.” Unable initially to find a pediatrician she liked, Tiffany has agonized over whether to use the ER when Brody gets sick. When he had pinkeye, she debated whether to take him in, hoping it would get better on its own.

Then he got worse, she said, pulling up a photo on her phone of her son with half-moons of red, puffy flesh under his dark eyes.

“I let him suffer for a day like that,” she said.

The Canos lost their first child, a girl, midway through her pregnancy in 2016. Tiffany acknowledges that experience has left her more anxious than the average first-time mom.

“It gave me so much fear that something would happen to him,” she said.

As for their own health care needs, the couple put themselves lower on the priority list. Tiffany has used a prosthetic limb since childhood, when her lower left leg was amputated because of a birth defect.

She needs a new prosthesis because her body changed during pregnancy, but she can’t see how to afford it.

A model suitable for the busy life of a working mom would easily cost $10,000 to $15,000, according to Tom Fise, executive director of the American Orthotic & Prosthetic Association.

“I try to push through,” Tiffany said. “I put on that brave face of just walking, but it’s so painful to walk. I have bruises all over my leg. I get blisters all the time.” Lately, she has been wearing an old prosthesis, one she used in high school, because it’s a little bit more comfortable.

The Canos don’t know how exactly they fell into such debt, because they tried hard to make responsible decisions. After meeting three years ago, they knew quickly that they wanted to marry and have a family.

“I waited until I found the right guy,” said Tiffany, who was thrilled when, in 2016, they were able to afford a 2,500-square-foot, two-story home in one of the stucco-and-tile neighborhoods an hour outside Phoenix.

But, taken together, the medical payment plans and premiums are almost as much as their $1,300 monthly mortgage. All told, the Canos spend about 15 percent of their annual income on health care, almost three times the average for non-Medicare households in the U.S.

That leaves too little for day care, car payments, gas, food and dozens of other domestic expenses, Tiffany said.

For 17 years, Robert had comprehensive health insurance through his job as a soldier in the Army Reserve and paid little or nothing for medical care. He left the Army in 2017, however, after he learned he would be deployed for an extended time away from his wife and new son.

“I told them, ‘I have to be at home,’ ” he recalled. The Army insurance ended on Dec. 31, two days before Brody was born.

That meant moving to his employer’s insurance plan. Like more than 40 percent of 152 million Americans who get health insurance through work, the Canos are enrolled in a plan that demands thousands of dollars before any coverage kicks in.

The couple discovered that they earn too much to qualify for financial assistance from medical providers or for subsidies if they shifted their insurance to a plan under the federal health insurance exchange. She is a full-time bank compliance officer. He is a full-time store manager.

Tiffany wrote to Kaiser Health News after seeing stories about sky-high medical bills on TV.

Dr. Merrit Quarum, the chief executive of WellRithms, a health care consulting firm, reviewed the family’s medical bills and the responses from their health care providers.

Though Quarum had questions about some of the fees in the itemized bills — $4 for a 600-milligram ibuprofen tablet? $3,125 to place an epidural? — he found the charges were legitimate under the terms of the contract between the hospital and the Canos’ insurer.

Tiffany’s only recourse was to set up the five payment plans she navigates each month.

“I wish I could say it wasn’t so, but it is,” Quarum said.

Mostly to pay off that health care debt, Robert has taken several part-time gigs this year — as a substitute teacher, a nighttime security guard and a sandwich deliveryman for a fast-food chain in Scottsdale, 40 miles away, where tips are better. He said he sometimes works up to 120 hours in a week.

“I’m not ashamed or embarrassed, even as old as I am, to deliver sandwiches,” he said, pulling on his retail chain polo shirt before rushing to a Saturday morning shift. “I know people, they’d rather get food stamps and feel sorry for themselves. But I’m a fighter. I will not give up … If I can bring in an extra $400 a week or $800 a month, she can get what she needs for the baby.”

Often home after midnight, he keeps shampoo and shaving cream in his car and naps in parking lots between jobs, relying on Red Bull to stay alert.

That means on many nights, when Tiffany picks up Brody from day care after her 90-minute commute, she handles most of the chores at home.

“Sometimes I feel like a single mom because my husband is never around,” she said.

She carefully tracks the family’s medical expenses, trying to juggle them with ordinary outlays that can’t wait — like $500 for the brakes that went out on her car this month.

At the rate they’re going, the bills won’t be paid until Brody is 3, Tiffany said. The Canos are getting older and they would like to have another baby before it’s too late, but, for now, that seems impossible.

For 2019, the couple have decided to switch to a different plan offered through Tiffany’s employer. The premium is higher — $650 a month — but the deductible is $1,500 with just 10 percent coinsurance.

“It is going to be a lot more per paycheck, which is going to hurt us,” Tiffany said. “But after what just happened, I want to make sure we are prepared in case anything does occur.”

How to fix a health care system that burdens middle-class families so heavily is beyond her, she said.

“The only thing we can do is just keep working,” Tiffany said. “I always wonder: How does everybody else do it?”

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

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