Tag: States

Death and Redemption in an American Prison

Steven Garner doesn’t like to talk about the day that changed his life. A New Orleans barroom altercation in 1990 escalated to the point where Garner, then 18, and his younger brother Glenn shot and killed another man. The Garners claimed self-defense, but a jury found them guilty of second-degree murder. They were sentenced to life in prison without parole.

When Garner entered the gates at Louisiana State Penitentiary in Angola, Louisiana, he didn’t know what to expect. The maximum security facility has been dubbed “America’s Bloodiest Prison” and its brutal conditions have made headlines for decades.

“Sometimes when you’re in a dark place, you find out who you really are and what you wish you could be,” Garner said. “Even in darkness, I could be a light.”

It wasn’t until five years later that Garner would get his chance to show everyone he wasn’t the hardened criminal they thought he was. When the prison warden, Burl Cain, decided to start the nation’s first prison hospice program, Garner volunteered.

In helping dying inmates, Garner believed he could claw back some meaning to the life he had nearly squandered in the heat of the moment. For the next 25 years, he cared for his fellow inmates, prisoners in need of help and compassion at the end of their lives.

The Angola program started by Cain, with the help of Garner and others, has since become a model. Today at least 75 of the more than 1,200 state and federal penal institutions nationwide have implemented formal hospice programs. Yet as America’s prison population ages, more inmates are dying behind bars of natural causes and few prisons have been able to replicate Angola’s approach.

Garner hopes to change that. But first he had to redeem himself.

‘Life Means Life’

Garner, the son of a longshoreman, was born and raised in New Orleans as one of seven kids who kept their mother busy at home. He attended Catholic primary school and played football at Booker T. Washington High School. After graduating, Garner worked for a garbage collection company, then for an ice cream manufacturer, testing deliveries of milk to make sure they hadn’t been watered down.

None of that experience would help him at Angola, where violence seemed to be everywhere. Garner remembered the endless stream of ambulances rolling through the prison gates.

“All day long: Somebody has gotten stabbed, somebody had gotten into a bad fight, blood everywhere,” he said.

Cain arrived at Angola in 1995, three years into Garner’s life sentence. In 1997, the warden came across a newspaper article about a hospice program in Baton Rouge, the state capital.

“I realized that if we did hospice, I wouldn’t have to do that rush at the end of life. We wouldn’t have to put them in an ambulance and send them to the hospital,” Cain said. “We could let them die in peace and not have to do all that.”

At first, the prison’s medical staff objected, worried about the cost. But Cain put his foot down. He hired a hospice nurse to run the program, and inmates would provide the day-to-day care at no cost.

Cain sought volunteers and funding from what he called the prison’s “clubs and organizations” — the Aryan Brotherhood, the Black Panthers, as well as the religious congregations within the prison walls. “All of y’all one day are going to be in hospice,” he said he told them.

It was no exaggeration. In Louisiana, as the saying goes, life means life, with no chance of parole. And at that time, 85% of those sent to Angola would die there, according to Cain and others.

“We buried more people a year than we released out the front gate,” Cain said.

Many serving life sentences no longer had family outside the prison walls, and for those who did, their families often could not afford to pay for a funeral or burial spot. So, the prison would bury the bodies at Angola. When the first cemetery was filled, the prison established another.

Initially, inmates were buried in cardboard boxes. But during one funeral, the body fell out of the box onto the ground. Cain vowed that would never happen again and instructed inmates working in carpentry to learn to make wooden caskets. The prison then provided caskets for any inmate in Louisiana whose body was not claimed by their family. The late Rev. Billy Graham and his wife were buried in two plain wooden caskets made at Angola.

Cain saw the hospice program as part of his approach of rehabilitation through morality and Christian principles. Cain started a seminary program at Angola, had the prisoners build several churches on its grounds, and considered hospice “the icing on the cake.”

A photo of a cemetery grounds at a prison. Rows of white crosses are seen.
A cemetery at Louisiana State Penitentiary on April 26, 2017.(Annie Flanagan for The Washington Post via Getty Images)

The Early Days

Garner had never heard of hospice.

He was among the first 40 volunteers at the prison, hand-picked for their clean disciplinary records and trained by two social workers from a New Orleans hospital in 1998.

Isolation cells were remade to serve as hospice rooms. The volunteers repainted the walls and draped curtains to hide the wire mesh covering the windows. They brought in nightstands and tables, TVs, and air conditioning.

Soon, it became clear the prison would have to change its rules to accommodate hospice. Before the program existed, inmates weren’t allowed to touch each other. They couldn’t even assist someone out of a wheelchair.

“They would actually push them into a room and wait on the nurse or doctor or somebody else to assist them,” Garner said. “They would die alone. They had nobody to talk to them, other than nurses and doctors making their rounds. They really didn’t have nobody that they could relate to.”

The volunteers were issued hospice T-shirts that allowed them free movement through the prison. Cain made it clear to the correctional officers and the staff that if someone was wearing that shirt, it was like hearing directly from the warden.

“He had to rewrite policies so everything that a hospice program can do in society, that program can do as well inside corrections,” Garner said.

The primary rule of the hospice program was that no one would die alone. When death was imminent, the hospice volunteers conducted a vigil round-the-clock.

The program used medications, including opioids, for the palliative care of patients, though the inmate volunteers were not allowed to administer them.

The first hospice patient Garner saw die was a man the prisoners called Baby. Standing just 4-foot-5, he was sought out by other inmates for his self-taught legal expertise. In 1998, as Baby was dying from cirrhosis, a disease of the liver, inmates rushed in to get his advice one last time.

“So many people wanted to see him, we just didn’t have enough room to take everybody in,” Garner said. “We used to have to do increments of 10 guys or whatever.”

Baby had taken care of everybody else. Now it was their time to take care of him.

Most of the hospice volunteers were serving life sentences, and many, like Garner, had taken someone’s life to get there. But holding a man’s hand as he took his last breath provided a new perspective.

“We all don’t know much about death, only what we see through the eyes of somebody who was going through that transition,” Garner said. “It was new to me, because I didn’t understand it in its entirety until I got into the program.”

The hospice volunteers became the conduit for inmates to get messages to their dying friends.

But more importantly, they functioned as confidants, giving dying inmates a last chance to get something off their chest.

“You become their hands, you become their eyes, you become their feet, you become their thinking sometimes,” Garner said. “They’re so vulnerable to where you actually have to be so mindful and careful to carry out their will.”

In a place where people prey on weakness, hospice volunteers shared in each patient’s vulnerability. Instead of assaulting, they assisted. Instead of sowing conflict, they spread peace.

“Just a touch makes a big difference, when a person can’t see or a person can’t hear,” Garner said.

‘What About Quilting?’

As the years passed, hospice deaths became more prevalent, with two to three inmates dying a week. The prison population was graying, and not just at Angola. According to federal statistics, from 1991 to 2021, the percentage of state and federal inmates 55 and older grew from 3% to 15%. And in 2020, 30% of those serving life sentences were at least 55 years old.

Throughout the 2000s, the Angola hospice saw increasing deaths from cancer, hepatitis C, and AIDS. But mostly, the patients’ bodies were wearing out. Most had come from low-income backgrounds and arrived at Angola in less-than-optimal health. Prison took a further toll, accelerating aging and exacerbating chronic conditions.

The hospice volunteers tried to grant the dying inmates’ often modest last requests: fresh fruit, a peanut butter and jelly sandwich, some potato chips.

“A bag of chips, to people in society, it’s like, ‘Oh man, that ain’t it,’” Garner said. “But to somebody that has a taste for it or for somebody that’s about to pass away, their wanting is everything.”

But those wishes cost money. In 2000, the prison volunteers were brainstorming ways to make the program self-sufficient.

“What about quilting?” suggested Tanya Tillman, the hospice nurse.

The room fell silent, Garner recalled. The volunteers looked around nervously.

“That was not something that a male inmate wanted to hear,” Garner said.

But the other “clubs and organizations,” as Cain called the inmate groups, were also raising money through fundraisers. They needed something that would stand out, something they would have no competition over.

“And so we voted,” Garner said. “Quilting it was.”

None of the men had quilted before. Some women came to teach them the basics, but mostly they learned through trial and error.

“I just put a sewing machine in front of me,” Garner said. “I knew all the do’s and don’ts, but I didn’t know how to take and cut fabric, and put fabric together, and make it make sense.”

They auctioned off their first quilt at the Angola Prison Rodeo, a biannual event in which prisoners compete in traditional rodeo events. It attracts people from all over the world.

At one point, Garner and his team were making 125 or more quilts a year: throws, kings, and queens.

“Within five years, we was on the front cover of Minnesota Alumni magazine,” Garner said, referencing the University of Minnesota Alumni Association’s publication. “In 2007, we were on another front cover, Imagine Louisiana magazine, and then in 10 years, we was in documentaries with Oprah Winfrey,” Garner said.

The Oprah Winfrey Network profiled the prison hospice program in 2011 in a documentary titled “Serving Life.”

Quilts made in Angola now hang in The Historic New Orleans Collection, the Smithsonian Institution’s National Museum of African American History and Culture in Washington, D.C., and the National Hospice and Palliative Care Organization building in Alexandria, Virginia.

One of the first quilts Garner made was a passage quilt, used instead of a plain white sheet to cover bodies being transported to the morgue. The quilt showed the clouds opening and angels receiving the inmate into heaven. It was adorned with the words, “I’m free, no more chains holding me.” Garner made another quilt to drape over the casket during funeral processions.

The program used the proceeds from the sale of other quilts to stock a cabinet with food and other sundries the hospice patients might need. If a patient’s family did not have the money to travel to Louisiana to see their loved one in his final days, the program would pay for their airline tickets. The family could stay overnight in the patient’s room, something that was unheard of in a maximum security prison.

The hospice program broke a lot of prison norms, and seemingly anything was on the table. When one hospice patient’s dying wish was to go fishing, the volunteers got the warden’s approval and brought a group of inmates with him.

The Mississippi River surrounds the Angola area on three sides, and the staff baited a fishing hole for days before the excursion so fish would be biting when the dying man arrived.

The fishing excursion became an annual event.

“You see the smile on their faces catching those fish,” Cain said. “They forgot all about that they were terminal.”

He added, “It teaches us to normalize our prisons and quit making them abnormal, bad places, and make it make people think they’re bad people. Hospice is the best example of all, to teach you to give back and then you will heal, and you won’t have more victims when you get out of prison.”

A Change in Prison Culture

Soon the impact of hospice was being felt well beyond the volunteers and their patients.

“It’s changed the culture of their facilities. It changed the general population,” said Jamey Boudreaux, the executive director of the Louisiana-Mississippi Hospice and Palliative Care Organization. “The general population sees people caring and it’s kind of contagious.”

When Boudreaux was hired in 1998, his first task from the board of directors was to shut down the hospice at Angola.

“They’re calling something hospice,” he recalled the board telling him, “and we can just see that there’s going to be some sort of big scandal and hospice is going to get a bad name.”

He called the prison and Cain invited him to come see the hospice program in person. Boudreaux, who had never been in a prison before, sat through a two-hour meeting with hospice volunteers and correctional officers.

He didn’t shut it down. Instead, he continued to attend monthly meetings at the prison for the next five years. Eventually, the administrators asked him if he’d feel comfortable being there alone with the volunteers, so they could speak more freely.

“I got to know these guys and they were genuinely committed to this whole notion of taking care of people at the end of life,” he said. “For some of them, it was a way to find redemption. For others, it was an affirmation that, ‘I don’t deserve to be in this place. And this gives me a very safe place to spend my time in prison.’”

The concept of prison hospice began to spread. In 2006, and again in 2012, Angola hosted a prison hospice conference. Now, five of the eight state prison facilities in Louisiana have inmate volunteer hospice programs. Nationwide, about 75 to 80 hospice programs operate behind bars.

“Most are pretty basic,” said Cordt Kassner, a consultant with Hospice Analytics in Colorado Springs, Colorado. “Angola is head and shoulders the model; the best one, period.”

A photo of a younger man wearing touching an older man in a hospital bed on the shoulder.
As one of a select few inmates who take care of other aging inmates at Louisiana State Penitentiary, Donald Murray (right) looks after Clyde Giddens on April 26, 2017.(Annie Flanagan for The Washington Post via Getty Images)

Regaining Freedom

Between caring for patients, sewing quilts, and working in the prison library, Garner had little time for anything else, though he continued to push for his case to be reviewed to earn his freedom.

Then, during the covid-19 pandemic, the quilters were asked to sew masks for the prison. The prison set up shifts so prisoners could maximize use of the sewing machines, keeping them running 24 hours a day. Masks were shipped to other prisons as well. Garner estimated he made 25,000 masks.

“I actually had to take time away from my work, from trying to get out of that place, working legal work and stuff,” Garner said.

Finally, in 2021, his case was reviewed by the Orleans Parish District Attorney’s Civil Rights Division. A judge agreed with the district attorney that in receiving life sentences at Angola, Garner and his brother had been oversentenced. They offered the brothers a deal: They could plead guilty to the lesser charge of manslaughter and be released for time served.

Garner had to think about it. His lawyers told him he likely had a good case to sue and be compensated for the many years he had spent in prison. But if he took the deal, he couldn’t sue.

“I could fight it or gain my freedom,” he said.

His family wanted the brothers home. Garner had lost his mother, his father, two brothers, and an aunt while behind bars. He and his brother opted to forgo any money that might come their way and secured their release.

“Steven Garner came in as a horrible criminal,” Cain said. “But he left us a wonderful man.”

Most of Garner’s immediate family had moved to the Colorado Springs area after being displaced by Hurricane Katrina, and in January 2022, after serving 31 years in prison, he joined them.

Spreading the Message

Quilting is an art of putting scraps of fabric together, making everything fit coherently. Now out of prison, Garner had to find a way to make all the pieces of his life fit together as well. He found a job at a warehouse, rented a home near his family, and bought himself a car.

At his prison job, he made 20 cents an hour — $8 a week, $32 a month — that he used to buy soap and deodorant. It’s a strange feeling today, he said, to be able to go into a store and buy something that costs more than $32.

Now 51, he has missed the prime years of his adult life. But rather than trying to make up for lost time in some grand hedonistic rush, Garner went back to what had saved him. He started a consulting business to help prisons implement hospice programs.

Over the past two years, he has delivered speeches at state hospice association conferences, and last year he spoke at a meeting of the Colorado Bar Association.

For many hospice veterans, prison hospice reminds them of the initial days of hospice, when it was primarily a nonprofit entity, run by people called to serve others.

“You would be hard-pressed to find a hospice provider that’s willing to support hospice in correctional facilities,” said Kim Huffington, chief nursing officer at Sangre de Cristo Community Care, a hospice based in Pueblo, Colorado. “Hospice as an industry has undergone a lot of change in the last 10 years and there’s a lot more for-profit hospices than there used to be.”

Yet talking to Garner, she said, has reignited her passion for the field.

“In many situations, we tend to dehumanize what we don’t understand or have experience with,” Huffington said. “The way he can make you see what he’s experienced through his eyes is something that I take away from every conversation with him.”

In September, Garner went back to prison, this time at the behest of the Colorado Department of Corrections, which wanted his advice on how to restart a defunct hospice program at Colorado Territorial Correctional Facility in Cañon City.

It was a surreal experience entering a prison again, dropping his keys in a little basket at the security screening, knowing he’d get them back shortly.

“It was really just another experience in my life,” Garner reflected, “that I can come and go, rather than come and stay.”

The Powerful Constraints on Medical Care in Catholic Hospitals Across America

Nurse midwife Beverly Maldonado recalls a pregnant woman arriving at Ascension Saint Agnes Hospital in Maryland after her water broke. It was weeks before the baby would have any chance of survival, and the patient’s wishes were clear, she recalled: “Why am I staying pregnant then? What’s the point?” the patient pleaded.

But the doctors couldn’t intervene, she said. The fetus still had a heartbeat and it was a Catholic hospital, subject to the “Ethical and Religious Directives for Catholic Health Care Services” that prohibit or limit procedures like abortion that the church deems “immoral” or “intrinsically evil,” according to its interpretation of the Bible.

“I remember asking the doctors. And they were like, ‘Well, the baby still has a heartbeat. We can’t do anything,’” said Maldonado, now working as a nurse midwife in California, who asked them: “What do you mean we can’t do anything? This baby’s not going to survive.”

The woman was hospitalized for days before going into labor, Maldonado said, and the baby died.

Ascension declined to comment for this article.

The Catholic Church’s directives are often at odds with accepted medical standards, especially in areas of reproductive health, according to physicians and other medical practitioners.

The American College of Obstetricians and Gynecologists’ clinical guidelines for managing pre-labor rupture of membranes, in which a patient’s water breaks before labor begins, state that women should be offered options, including ending the pregnancy.

Maldonado felt her patient made her wishes clear.

“Under the ideal medical practice, that patient should be helped to obtain an appropriate method of terminating the pregnancy,” said Christian Pettker, a professor of obstetrics, gynecology, and reproductive sciences at the Yale School of Medicine, who helped author the guidelines.

He said, “It would be perfectly medically appropriate to do a termination of pregnancy before the cessation of cardiac activity, to avoid the health risks to the pregnant person.”

“Patients are being turned away from necessary care,” said Jennifer Chin, an OB-GYN at UW Medicine in Seattle, because of the “emphasis on these ethical and religious directives.”

They can be a powerful constraint on the care that patients receive at Catholic hospitals, whether emergency treatment when a woman’s health is at risk, or access to birth control and abortions.

A close-up image of a woman standing outside in the woods and looking at the camera.
Michigan resident Kalaina Sullivan wanted to have surgery to permanently prevent pregnancy, but her doctor worked for the Catholic chain Trinity Health, the nation’s fourth-largest hospital system. Sullivan had to travel to North Ottawa Community Health System, an independent hospital near the shores of Lake Michigan, for the surgery.(Kristen Norman for KFF Health News)

More and more women are running into barriers to obtaining care as Catholic health systems have aggressively acquired secular hospitals in much of the country. Four of the 10 largest U.S. hospital chains by number of beds are Catholic, according to federal data from the Agency for Healthcare Research and Quality. There are just over 600 Catholic general hospitals nationally and roughly 100 more managed by Catholic chains that place some religious limits on care, a KFF Health News investigation reveals.

Maldonado’s experience in Maryland came just months before the Supreme Court’s ruling in 2022 to overturn Roe v. Wade, a decision that compounded the impact of Catholic health care restrictions. In its wake, roughly a third of states have banned or severely limited access to abortion, creating a one-two punch for women seeking to prevent pregnancy or to end one. Ironically, some states where Catholic hospitals dominate — such as Washington, Oregon, and Colorado — are now considered medical havens for women in nearby states that have banned abortion.

KFF Health News analyzed state-level birth data to discover that more than half a million babies are born each year in the U.S. in Catholic-run hospitals, including those owned by CommonSpirit Health, Ascension, Trinity Health, and Providence St. Joseph Health. That’s 16% of all hospital births each year, with rates in 10 states exceeding 30%. In Washington, half of all babies are born at such hospitals, the highest share in the country.

“We had many instances where people would have to get in their car to drive to us while they were bleeding, or patients who had had their water bags broken for up to five days or even up to a week,” said Chin, who has treated patients turned away by Catholic hospitals.

Physicians who turned away patients like that “were going against evidence-based care and going against what they had been taught in medical school and residency,” she said, “but felt that they had to provide a certain type of care — or lack of care — just because of the strength of the ethical and religious directives.”

Following religious mandates can be dangerous, Chin and other clinicians said.

A woman with long dark hair and wearing glasses, dark blue scrubs, and a white doctor's coat stands with her arms crossed and looks at the camera.
Chin was part of a larger effort by reproductive rights groups and medical organizations that pushed for a state law in Washington to protect physicians if they act against Catholic hospital restrictions. Washington enacted the bill in 2021.(Dan DeLong for KFF Health News)

When a patient has chosen to end a pregnancy after the amniotic sac — or water — has broken, Pettker said, “any delay that might be added to a procedure that is inevitably going to happen places that person at risk of serious, life-threatening complications,” including sepsis and organ infection.

Reporters analyzed American Hospital Association data as of August and used Catholic Health Association directories, news reports, government documents, and hospital websites and other materials to determine which hospitals are Catholic or part of Catholic systems, and gathered birth data from state health departments and hospital associations. They interviewed patients, medical providers, academic experts, advocacy organizations, and attorneys, and reviewed hundreds of pages of court and government records and guidance from Catholic health institutions and authorities to understand how the directives affect patient care.

Nationally, nearly 800,000 people have only Catholic or Catholic-affiliated birth hospitals within an hour’s drive, according to KFF Health News’ analysis. For example, that’s true of 1 in 10 North Dakotans. In South Dakota, it’s 1 in 20. When care is more than an hour away, academic researchers often define the area as a hospital desert. Pregnant women who must drive farther to a delivery facility are at higher risk of harm to themselves or their fetus, research shows.

Many Americans don’t have a choice — non-Catholic hospitals are too far to reach in an emergency or aren’t in their insurance networks. Ambulances may take patients to a Catholic facility without giving them a say. Women often don’t know that hospitals are affiliated with the Catholic Church or that they restrict reproductive care, academic research suggests.

And, in most of the country, state laws shield at least some hospitals from lawsuits for not performing procedures they object to on religious grounds, leaving little recourse for patients who were harmed because care was withheld. Thirty-five states prevent patients from suing hospitals for not providing abortions, including 25 states where abortion remains broadly legal. About half of those laws don’t include exceptions for emergencies, ectopic pregnancies, or miscarriages. Sixteen states prohibit lawsuits against hospitals for refusing to perform sterilization procedures.

“It’s hard for the ordinary citizen to understand, ‘Well, what difference does it make if my hospital is bought by this other big health system, as long as it stays open? That’s all I care about,’” said Erin Fuse Brown, who is the director of the Center for Law, Health & Society at Georgia State University and an expert in health care consolidation. Catholic directives also ban medical aid in dying for terminally ill patients.

People “may not realize that they’re losing access to important services, like reproductive health [and] end-of-life care,” she said.

‘Our Faith-Based Health Care Ministry’

After the Supreme Court ended the constitutional right to abortion in June 2022, Michigan resident Kalaina Sullivan wanted surgery to permanently prevent pregnancy.

A wide shote of a woman standing outside in the woods and looking at the camera.
“I just don’t see why there’s any reason for me to have to follow the rules of their religion and have that be a part of what’s going on with my body,” Sullivan says. (Kristen Norman for KFF Health News)

Michigan voters in November that year enshrined the right to abortion under the state constitution, but the state’s concentration of Catholic hospitals means people like Sullivan sometimes still struggle to obtain reproductive health care.

Because her doctor worked for the Catholic chain Trinity Health, the nation’s fourth-largest hospital system, she had the surgery with a different doctor at North Ottawa Community Health System, an independent hospital near the shores of Lake Michigan.

Less than two months later, that, too, became a Catholic hospital, newly acquired by Trinity.

To mark the transition, Cory Mitchell, who at the time was the mission leader of Trinity Health Muskegon, stood before his new colleagues and offered a blessing.

“The work of your hands is what makes our faith-based health care ministry possible,” he said, according to a video of the ceremony Trinity Health provided to KFF Health News. “May these hands continue to bring compassion, compassion and healing, to all those they touch.”

Trinity Health declined to answer detailed questions about its merger with North Ottawa Community Health System and the ethical and religious directives. “Our commitment to high-quality, compassionate care means informing our patients of all appropriate care options, and trusting and supporting our physicians to make difficult and medically necessary decisions in the best interest of their patients’ health and safety,” spokesperson Jennifer Amundson said in an emailed statement. “High-quality, safe care is critical for the women in our communities and in cases where a non-critical service is not available at our facility, the physician will transfer care as appropriate.”

Leaders in Catholic-based health systems have hammered home the importance of the church’s directives, which are issued by the U.S. Conference of Catholic Bishops, all men, and were first drafted in 1948. The essential view on abortion is as it was in 1948. The last revision, in 2018, added several directives addressing Catholic health institution acquisitions or mergers with non-Catholic ones, including that “whatever comes under control of the Catholic institution — whether by acquisition, governance, or management — must be operated in full accord with the moral teaching of the Catholic Church.”

“While many of the faithful in the local church may not be aware of these requirements for Catholic health care, the local bishop certainly is,” wrote Sister Doris Gottemoeller, a former board member of the Bon Secours Mercy Health system, in a 2023 Catholic Health Association journal article. “In fact, the bishop should be briefed on a regular basis about the hospital’s activities and strategies.”

Now, for care at a non-Catholic hospital, Sullivan would need to travel nearly 30 miles.

“I don’t see why there’s any reason for me to have to follow the rules of their religion and have that be a part of what’s going on with my body,” she said.

Risks Come With Religion

Nathaniel Hibner, senior director of ethics at the Catholic Health Association, said the ethical and religious directives allow clinicians to provide medically necessary treatments in emergencies. In a pregnancy crisis when a person’s life is at risk, “I do not believe that the ERDs should restrict the physician in acting in the way that they see medically indicated.”

“Catholic health care is committed to the health of all women and mothers who enter into our facilities,” Hibner said.

The directives permit care to cure “a proportionately serious pathological condition of a pregnant woman” even if it would “result in the death of the unborn child.” Hibner demurred when asked who defines what that means and when such care is provided, saying, “for the most part, the physician and the patients are the ones that are having a conversation and dialogue with what is supposed to be medically appropriate.”

It is common for practitioners at any hospital to consult an ethics board about difficult cases — such as whether a teenager with cancer can decline treatment. At Catholic hospitals, providers must ask a board for permission to perform procedures restricted by the religious directives, clinicians and researchers say. For example, could an abortion be performed if a pregnancy threatened the mother’s life?

A woman sits on a wooden bench on a beach and looks off-camera to her left.
Sullivan has seen firsthand the growth of Catholic hospitals in western Michigan. She would now have to travel nearly 30 miles for care at a non-Catholic hospital. (Kristen Norman for KFF Health News)

How and when an ethics consultation occurs depends on the hospital, Hibner said. “That ethics consultation can be initiated by anyone involved in the direct care of that situation — the patient, the surrogate of that patient, the physician, the nurse, the social worker all have the ability to request a consultation,” he said. When asked whether a consultation with an ethics board can occur without a request, he said “sometimes it could.”

How strictly directives are followed can depend on the hospital and the views of the local bishop.

“If the hospital has made a difficult decision about a critical pregnancy or an end-of-life care situation, the bishop should be the first to know about it,” Gottemoeller wrote.

In an interview, Gottemoeller said that even when pregnancy termination decisions are made on sound ethical grounds, not informing the bishop puts him in a bad position and hurts the church. “If there’s a possibility of it being misunderstood, or misinterpreted, or criticized,” Gottemoeller said, the bishop should understand what happened and why “before the newspapers call him and ask him for an opinion.”

“And if he has to say, ‘Well, I think you made a mistake,’ well, all right,” she said. “But don’t let him be blindsided. I mean, we’re one church and the bishop has pastoral concern over everything in his diocese.”

Katherine Parker Bryden, a nurse midwife in Iowa who works for MercyOne, said she regularly tells pregnant patients that the hospital cannot perform tubal sterilization surgery, to prevent future pregnancies, or refer patients to other hospitals that do. MercyOne is one of the largest health systems in Iowa. Nearly half of general hospitals in the state are Catholic or Catholic-affiliated — the highest share among all states.

The National Catholic Bioethics Center, an ethics authority for Catholic health institutions, has said that referrals for care that go against church teaching would be “immoral.”

“As providers, you’re put in this kind of moral dilemma,” Parker Bryden said. “Am I serving my patients or am I serving the archbishop and the pope?”

In response to questions, MercyOne spokesperson Eve Lederhouse said in an email that its providers “offer care and services that are consistent with the guidelines of a Catholic health system.”

Maria Rodriguez, an OB-GYN professor at Oregon Health & Science University, said that as a resident in the early 2000s at a Catholic hospital she was able to secure permission — what she calls a “pope note” — to sterilize some patients with conditions such as gestational diabetes.

Annie Iriye, a retired OB-GYN in Washington state, said that more than a decade ago she sought permission to administer medication to hasten labor for a patient experiencing a second-trimester miscarriage at a Catholic hospital. She said she was told no because the fetus had a heartbeat. The patient took 10 hours to deliver — time that would have been cut by half, Iriye said, had she been able to follow her own medical training and expertise. During that time, she said, the patient developed an infection.

Iriye and Chin were part of an effort by reproductive rights groups and medical organizations that pushed for a state law to protect physicians if they act against Catholic hospital restrictions. The bill, which Washington enacted in 2021, was opposed by the Washington State Hospital Association, whose membership includes multiple large Catholic health systems.

State lawmakers in Oregon in 2021 enacted legislation that beefed up powers to reject health care mergers if they would reduce access to the types of care constrained by Catholic directives. The hospital lobby has sued to block the statute. Washington state lawmakers introduced similar legislation last year, which the hospital association opposes.

Hibner said Catholic hospitals are committed to instituting systemic changes that improve maternal and child health, including access to primary, prenatal, and postpartum care. “Those are the things that I think rural communities really need support and advocacy for,” he said.

Maldonado, the nurse midwife, still thinks of her patient who was forced to stay pregnant with a baby who could not survive. “To feel like she was going to have to fight to have an abortion of a baby that she wanted?” Maldonado said. “It was just horrible.”

KFF Health News data editor Holly K. Hacker contributed to this report.

By Hannah Recht

KFF Health News identified areas of the country where patients have only Catholic hospital options nearby. The “Ethical and Religious Directives for Catholic Health Care Services” — which are issued by the U.S. Conference of Catholic Bishops, all men — dictate how patients receive reproductive care at Catholic health facilities. In our analysis, we focused on hospitals where babies are born.

We constructed a national database of hospital locations, identified which ones are Catholic or Catholic-affiliated, found how many babies are born at each, and calculated how many people live near those hospitals.

Hospital Universe

We identified hospitals in the 50 states and the District of Columbia using the American Hospital Association database from August 2023. We removed hospitals that had closed or were listed more than once, added hospitals that were not included, and corrected inaccurate or out-of-date information about ownership, primary service type, and location. We excluded federal hospitals, such as military and Indian Health Service facilities, because they are not open to everyone.

Catholic Affiliation

To identify Catholic hospitals, we used the Catholic Health Association’s member directory. We also counted as Catholic a handful of hospitals that are not part of this voluntary membership group but explicitly follow the Ethical and Religious Directives, according to their mission statements, websites, or promotional materials.

We also tracked Catholic-affiliated hospitals: those that are owned or managed by a Catholic health system, such as CommonSpirit Health or Trinity Health, and are influenced by the religious directives but do not necessarily adhere to them in full. To identify Catholic-affiliated hospitals, we consulted health system and hospital websites, government documents, and news reports.

We combined both Catholic and Catholic-affiliated hospitals for analysis, in line with previous research about the influence of Catholic directives on health care.

Births

To determine the share of births that occur at Catholic or Catholic-affiliated hospitals, we gathered the latest annual number of births by hospital from state health departments. Where recent data was not publicly available, we submitted records requests for the most recent complete year available.

The resulting data covered births in 2022 for nine states and D.C., births in 2021 for 23 states, births in 2020 for nine states, and births in 2019 for one state. We used data from the 2021 American Hospital Association survey, the latest available at the time of analysis, for the eight remaining states that did not provide birth data in response to our requests. A small number of hospitals have recently opened or closed labor and delivery units. The vast majority of the rest record about the same number of births each year. This means that the results would not be substantially different if data from 2023 were available.

We used this data to calculate the number of babies born in Catholic and Catholic-affiliated hospitals, as well as non-Catholic hospitals by state and nationally.

We used hospitals’ Catholic status as of August 2023 in this analysis. In 10 cases where the hospital had already closed, we used Catholic status at the time of the closure.

Because our analysis focuses on hospital care, we excluded births that occurred in non-hospital settings, such as homes and stand-alone birth centers, as well as federal hospitals.

Several states suppressed data from hospitals with fewer than 10 births due to privacy restrictions. Because those numbers were so low, this suppression had a negligible effect on state-level totals.

Drive-Time Analysis

We obtained hospitals’ geographic coordinates based on addresses in the AHA dataset using HERE’s geocoder. For addresses that could not be automatically geocoded with a high degree of certainty, we verified coordinates manually using hospital websites and Google Maps.

We calculated the areas within 30, 60, and 90 minutes of travel time from each birth hospital that was open in August 2023 using tools from HERE. We included only hospitals that had 10 or more births as a proxy for hospitals that have labor and delivery units, or where births regularly occur.

The analysis focused on the areas with hospitals within an hour’s drive. Researchers often define hospital deserts as places where one would have to drive an hour or more for hospital care. (For example: [1] “Disparities in Access to Trauma Care in the United States: A Population-Based Analysis,” [2] “Injury-Based Geographic Access to Trauma Centers,” [3] “Trends in the Geospatial Distribution of Inpatient Adult Surgical Services Across the United States,” [4] “Access to Trauma Centers in the United States.”)

We combined the drive-time areas to see which areas of the United States have only Catholic or Catholic-affiliated birth hospitals nearby, both Catholic and non-Catholic, non-Catholic only, or none. We then joined these areas to the 2021 census block group shapefile from IPUMS NHGIS and removed water bodies using the U.S. Geological Survey’s National Hydrography Dataset to calculate the percentage of each census block group that falls within each hospital access category. We calculated the number of people in each area using the 2021 “American Community Survey” block group population totals. For example, if half of a block group’s land area had access to only Catholic or Catholic-affiliated hospitals, then half of the population was counted in that category.

Southern Lawmakers Rethink Long-Standing Opposition to Medicaid Expansion

As a part-time customer service representative, Jolene Dybas earns less than $15,000 a year, which is below the federal poverty level and too low for her to be eligible for subsidized health insurance on the Obamacare marketplace.

Dybas, 53, also does not qualify for Medicaid in her home state of Alabama because she does not meet the program requirements. She instead falls into a coverage gap and faces hundreds of dollars a month in out-of-pocket payments, she said, to manage multiple chronic health conditions.

“I feel like I’m living in a state that doesn’t care for me,” said Dybas, a resident of Saraland, a suburb of Mobile.

Alabama is one of 10 states that have refused to adopt the Affordable Care Act’s expansion of Medicaid, the government health insurance program for people who are low-income or disabled.

But lawmakers in Alabama and some other Southern states are reconsidering their opposition in light of strong public support for Medicaid expansion and pleas from powerful sectors of the health care industry, especially hospitals.

Expansions are under consideration by Republican legislative leaders in Georgia and Mississippi, in addition to Alabama, raising the prospect that more than 600,000 low-income, uninsured people in those three states could gain coverage, according to KFF data.

Since a 2012 Supreme Court ruling rendered the ACA’s Medicaid expansion optional, it has remained a divisive issue along party lines in some states. Political opposition has softened, in part because North Carolina’s Republican-controlled legislature voted last year to expand the program. Already, more than 346,000 residents of the Tar Heel State have gained coverage.

And lawmakers in nearby states are taking notice.

“There has certainly been a lot of discussion of late about Medicaid expansion,” said Georgia House Speaker Jon Burns, a Republican, in a speech to the state chamber of commerce shortly after the legislative session began on Jan. 8.

“Expanding access to care for lower-income working families through a private option — in a fiscally responsible way that lowers premiums — is something we will continue to gather facts on in the House,” Burns said.

In addition to Georgia, state House speakers in Alabama and Mississippi have indicated a new willingness to consider coverage expansion. All three states have experienced a large number of hospital closures, particularly in rural areas.

Medicaid expansion has become “politically safer to consider,” said Frank Knapp, president of South Carolina’s Small Business Chamber of Commerce. In his state, Republican lawmakers are weighing whether to appoint a committee to study expansion.

It’s the kind of momentum some health policy analysts view as a favorable shift in the political discourse about expanding access to care. And it comes as a new crop of conservative leaders grapple with their states’ persistently high rates of poor, uninsured adults.

An additional incentive: Under President Joe Biden’s 2021 American Rescue Plan Act, the federal government pays newly expanded states an additional 5 percentage points in the matching rate for their regular Medicaid population for two years, which would more than offset the cost of expansion for that period.

But even as new discussions take place in legislatures that once froze out any talk of Medicaid expansion, considerable obstacles remain. Republican Mississippi Gov. Tate Reeves, for example, still opposes expansion. And several nonexpansion states appear to have little to no momentum.

“A lot of things need to come together in any given state to make things move,” said Robin Rudowitz, director of the Program on Medicaid and the Uninsured at KFF.

Under Medicaid expansion, adults earning up to 138% of the federal poverty level, or about $35,600 for a family of three, qualify for coverage.

Expansion has reduced uninsured rates in rural areas, improved access to care for low-income people, and lowered uncompensated care costs for hospitals and clinics, according to KFF analyses of studies from 2014 to 2021. In states that have refused to expand Medicaid, all of those challenges remain acute.

Alabama’s legislative session began Feb. 6. Republican House Speaker Nathaniel Ledbetter has suggested that he’s open to debating options for increased coverage. So many hospitals are in “dire straits,” he said at a Montgomery Area Chamber of Commerce meeting in January. “We’ve got to have the conversation.”

Expansion could make as many as 174,000 uninsured people in Alabama eligible for coverage, according to KFF data. Still, Ledbetter prefers a public-private partnership model, and has looked at Arkansas’ program, which uses federal and state money to pay for commercial insurance plans on the Obamacare marketplace for people who would be eligible for Medicaid under expansion.

In Alabama, lawmakers have introduced a plan that would levy a state tax on gaming revenue and could help fund health insurance coverage for adults with annual incomes up to 138% of the federal poverty level.

Robyn Hyden, executive director of advocacy group Alabama Arise, which supports Medicaid expansion, has seen progress on efforts to increase coverage. “The devil’s going to be in the details,” she said.

Mississippi’s new House speaker, Jason White, a Republican, has said he wants to protect hospitals and keep residents from seeking regular care through the emergency room. More than 120,000 uninsured people in Mississippi would become newly eligible for Medicaid under expansion, according to KFF data.

White told KFF Health News in a written statement that improving access to health care is a priority for business leaders, community officials, and voters.

“The desire to keep Mississippians in the workforce and out of the emergency room transcends any political party and is a vital component to a healthy workforce and a healthy economy,” he said. State legislators are determined to work with Reeves on the issue, he said.

Burns, the Georgia House speaker, has said that he’s open to a proposal for an Arkansas-style plan. Republican Gov. Brian Kemp said he would reserve comment until after the legislative process, according to spokesperson Carter Chapman.

He emphasized Kemp’s commitment to his recently launched plan requiring low-income adults to work, volunteer, or receive schooling or vocational training for 80 hours a month in exchange for Medicaid coverage. As of mid-January, the cumulative enrollment was right around 3,000. Expansion could make at least 359,000 uninsured people in Georgia newly eligible for Medicaid, according to KFF data.

In South Carolina, Republican lawmakers are considering legislation that would allow them to form a committee to study expansion. State Sen. Tom Davis, a Republican from Beaufort who sponsored the bill and previously opposed expanding Medicaid, said he’s not endorsing or opposing Medicaid expansion at this time.

“We need to have a debate,” Davis said during a committee meeting in January.

The state legislature would likely have to work with Gov. Henry McMaster, a Republican, who, according to spokesperson Brandon Charochak, remains opposed to Medicaid expansion.

North Carolina started enrolling residents under its expansion Dec. 1. They included Patrick Dunnagan, 38, of Raleigh. The former outdoor guide said he hasn’t been able to work for years because of kidney disease and chronic pain.

He has relied on financial support from his family and said his medical debt stands at more than $5,000. Medicaid coverage will provide financial security.

Dunnagan said people with chronic health conditions in nonexpansion states “are accumulating medical debt and not getting the care they need.”

Bills proposed in Texas’ legislature didn’t get a vote last year. And the state doesn’t allow voter-initiated referendums, which have been a route to expansion in some Republican-led states. An estimated 1.2 million uninsured people would be eligible for coverage — more than in any other state still holding out — if Texas expanded.

Republican lawmakers in Tennessee and Florida have said they won’t allow Medicaid expansion. In Florida, advocates have launched a petition drive for a ballot initiative, but the earliest it could go to voters is 2026.

In Kansas, Gov. Laura Kelly, a Democrat, is once again pressing her state’s Republican-controlled legislature to adopt Medicaid expansion, calling it a “commonsense proposal” that would lower health care costs for all consumers and protect rural hospitals. But the state’s House speaker remains opposed to Medicaid expansion.

Advocates believe it’s only a matter of time before Medicaid expansion happens nationwide as opposition eases and people continue to suffer the consequences of being uninsured.

For Dybas in Alabama, the prospect of gaining coverage is enough to make her consider relocating. In Minnesota, where she once lived, “I wouldn’t have this problem,” Dybas said.

Perhaps, as in Arkansas, conservatives will adopt models that rely more heavily on commercial insurance.

But many holdout states in the South — where death rates for heart disease, cancer, and diabetes are mostly worse than in other states — see growing disparities between the health of their citizens and those of neighboring states that have expanded, said Lucy Dagneau, a senior director for the American Cancer Society’s advocacy arm, the Cancer Action Network. The group lobbies state legislatures for expanded insurance coverage.

“There will be a tipping point for all these states,” she said.

KFF Health News South Carolina correspondent Lauren Sausser and senior correspondent Renuka Rayasam contributed to this report.

KFF Health News’ ‘What the Health?’: Biden Wins Early Court Test for Medicare Drug Negotiations

The Host

A federal judge in Texas has turned back the first challenge to the nascent Medicare prescription-drug negotiation program. But the case turned on a technicality, and drugmakers have many more lawsuits in the pipeline.

Meanwhile, Congress is approaching yet another funding deadline, and doctors hope the next funding bill will cancel the Medicare pay cut that took effect in January.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Lauren Weber of The Washington Post.

Among the takeaways from this week’s episode:

  • Rep. Cathy McMorris Rodgers (R-Wash.), chair of the powerful House Energy and Commerce Committee, announced she would retire at the end of the congressional session, setting off a scramble to chair a panel with significant oversight of Medicare, Medicaid, and the U.S. Public Health Service. McMorris Rodgers is one of several Republicans with significant health expertise to announce their departures.
  • As Congress’ next spending bill deadline approaches, lobbyists for hospitals are feverishly trying to prevent a Medicare provision on “site-neutral” payments from being attached.
  • In abortion news, anti-abortion groups are joining the call for states to better outline when life and health exceptions to abortion bans can be legally permissible.
  • Senate Finance Chairman Ron Wyden (D-Ore.) is asking the Federal Trade Commission and the Securities and Exchange Commission to investigate a company that collected location data from patients at 600 Planned Parenthood sites and sold it to anti-abortion groups.
  • And in “This Week in Health Misinformation”: Lawmakers in Wyoming and Montana float bills to let people avoid getting blood transfusions from donors who have been vaccinated against covid-19.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: Stateline’s “Government Can Erase Your Medical Debt for Pennies on the Dollar — And Some Are,” by Anna Claire Vollers.

Alice Miranda Ollstein: Politico’s “‘There Was a Lot of Anxiety’: Florida’s Immigration Crackdown Is Causing Patients to Skip Care,” by Arek Sarkissian.

Rachel Cohrs: Stat’s “FTC Doubles Down in Welsh Carson Anesthesia Case to Limit Private Equity’s Physician Buyouts,” by Bob Herman. And Modern Healthcare’s “Private Equity Medicare Advantage Investment Slumps: Report,” by Nona Tepper.

Lauren Weber: The Wall Street Journal’s “Climate Change Has Hit Home Insurance. Is Health Insurance Next?” by Yusuf Khan.

Also mentioned on this week’s podcast:


To hear all our podcasts, click here.

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States Get in on the Prior Authorization Crackdown

Last month, my colleague Lauren Sausser told you about the Biden administration’s crackdown on insurance plans’ prior authorization policies, with new rules for certain health plans participating in federal programs such as Medicare Advantage or the Affordable Care Act marketplace. States are getting in on the action, too.

Prior authorization, sometimes called pre-certification, requires patients to endure their health insurers’ reviewing some medical treatments before deciding to cover them — or not. It’s a tool the plans say reins in costs and protects patients from unnecessary or ineffective medical treatment. Patients and doctors hate it.

But the new Centers for Medicare & Medicaid Services rules are limited. 

So, doctors and hospitals are backing efforts by states to pass their own restrictions.

Last year, lawmakers in 29 states and District of Columbia considered some 90 bills to limit prior authorization requirements, according to the American Medical Association, with notable victories in New Jersey and D.C. The physicians association expects more bills this year.

Here in Missouri, Republican state Rep. Melanie Stinnett introduced legislation to exempt certain providers from always having to request authorization for care — a program often called “gold carding.” Stinnett said she was regularly frustrated by prior authorization hurdles in her work as a speech pathologist before joining the legislature in 2023.

“The stories all kind of look similar: It’s a big fight to get something done on the insurance side for approval,” Stinnett said. “Then sometimes, even after all of that fight,it feels like it may have not been worthwhile because some people then have a change at the beginning of the year with their insurance.”

That’s what happened to Christopher Marks, a 40-year-old truck driver from Kansas City, Mo.

Marks noticed an immediate improvement in his Type 2 diabetes symptoms last year when his doctor prescribed him the medication Mounjaro — which has a wholesale price of more than $1,000 a month.But when his doctor followed the typical prescribing pattern and increased his dose,Marks’s health insurer declined to pay for it.

Marks had a Cigna plan that he purchased on the federal Affordable Care Act marketplace, healthcare.gov. After two appeals over a month and a half, Cigna agreed to cover the higher dose. A few months later, he said, when it was time to up his dose once more, he was denied again. By November, he decided it wasn’t worth sparring with Cigna anymore since the insurer was leaving the marketplace in Missouri at the start of this year. He decided to stay on the lower dose until his new insurance kicked in.

“That is beyond frustrating. People shouldn’t have to be like, ‘It’s not worth the fight to get my medical treatment,’” Marks said.

Cigna spokesperson Justine Sessions said the company uses prior authorizations for popular drugs such as Mounjaro to help ensure patients get the right medications and dosages. 

“We strive to make authorizations quickly and correctly, but in Mr. Marks’s case, we fell short and we greatly regret the stress and frustration this caused,” she said.

Under Stinnett’s bill, a medical provider’s prior authorization requests during a six-month evaluation period would be reviewed by health plans. Providers whose requests were approved by a plan at least 90 percent of the time would be exempt from having to submit further prior authorization requests for patients on that plan for the next six months.

The exemptions would also apply to hospitals and other facilities that meet the threshold. They would have to continue hitting the 90 percent approval mark to keep the exemption.

Five states have passed some form of gold-carding program: Louisiana, Michigan, Texas, Vermont and West Virginia. The AMA is tracking active gold carding bills in 13 states, including Missouri.

A 2022 survey of 26 health insurance plans conducted by the industry trade group AHIP found that just over half of those plans had used a gold-carding program for medical services while about a fifth had done so for prescriptions.

Marks purchased insurance for this year on the federal marketplace from Blue Cross and Blue Shield of Kansas City. In January, his doctor re-prescribed the higher dose of Mounjaro that Cigna had declined to cover. A little over a week later, Marks said, his new insurance approved his prescription “without any fuss.”


This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.


Early Detection May Help Kentucky Tamp Down Its Lung Cancer Crisis

Anthony Stumbo’s heart sank after the doctor shared his mother’s chest X-ray.

“I remember that drive home, bringing her back home, and we basically cried,” said the internal medicine physician, who had started practicing in eastern Kentucky near his childhood home shortly before his mother began feeling ill. “Nobody wants to get told they’ve got inoperable lung cancer. I cried because I knew what this meant for her.”

Now Stumbo, whose mother died the following year, in 1997, is among a group of Kentucky clinicians and researchers determined to rewrite the script for other families by promoting training and boosting awareness about early detection in the state with the highest lung cancer death rate. For the past decade, Kentucky researchers have promoted lung cancer screening, first recommended by the U.S. Preventive Services Task Force in 2013. These days the Bluegrass State screens more residents who are at high risk of developing lung cancer than any state except Massachusetts — 10.6% of eligible residents in 2022, more than double the national rate of 4.5% — according to the most recent American Lung Association analysis.

The effort has been driven by a research initiative called the Kentucky LEADS (Lung Cancer Education, Awareness, Detection, and Survivorship) Collaborative, which in 2014 launched to improve screening and prevention, to identify more tumors earlier, when survival odds are far better. The group has worked with clinicians and hospital administrators statewide to boost screening rates both in urban areas and regions far removed from academic medical centers, such as rural Appalachia. But, a decade into the program, the researchers face an ongoing challenge as they encourage more people to get tested, namely the fear and stigma that swirl around smoking and lung cancer.

Lung cancer kills more Americans than any other malignancy, and the death rates are worst in a swath of states including Kentucky and its neighbors Tennessee and West Virginia, and stretching south to Mississippi and Louisiana, according to data from the Centers for Disease Control and Prevention.

It’s a bit early to see the impact on lung cancer deaths because people may still live for years with a malignancy, LEADS researchers said. Plus, treatment improvements and other factors may also help reduce death rates along with increased screening. Still, data already shows that more cancers in Kentucky are being detected before they become advanced, and thus more difficult to treat, they said. Of total lung cancer cases statewide, the percentage of advanced cases — defined as cancers that had spread to the lymph nodes or beyond — hovered near 81% between 2000 and 2014, according to Kentucky Cancer Registry data. By 2020, that number had declined to 72%, according to the most recent data available.

“We are changing the story of families. And there is hope where there has not been hope before,” said Jennifer Knight, a LEADS principal investigator.

Older adults in their 60s and 70s can hold a particularly bleak view of their mortality odds, given what their loved ones experienced before screening became available, said Ashley Shemwell, a nurse navigator for the lung cancer screening program at Owensboro Health, a nonprofit health system that serves Kentucky and Indiana.

“A lot of them will say, ‘It doesn’t matter if I get lung cancer or not because it’s going to kill me. So I don’t want to know,’” said Shemwell. “With that generation, they saw a lot of lung cancers and a lot of deaths. And it was terrible deaths because they were stage 4 lung cancers.” But she reminds them that lung cancer is much more treatable if caught before it spreads.

The collaborative works with several partners, including the University of Kentucky, the University of Louisville, and GO2 for Lung Cancer, and has received grant funding from the Bristol Myers Squibb Foundation. Leaders have provided training and other support to 10 hospital-based screening programs, including a stipend to pay for resources such as educational materials or a nurse navigator, Knight said. In 2022, state lawmakers established a statewide lung cancer screening program based in part on the group’s work.

Jacob Sands, a lung cancer physician at Boston’s Dana-Farber Cancer Institute, credits the LEADS collaborative with encouraging patients to return for annual screening and follow-up testing for any suspicious nodules. “What the Kentucky LEADS program is doing is fantastic, and that is how you really move the needle in implementing lung screening on a larger scale,” said Sands, who isn’t affiliated with the Kentucky program and serves as a volunteer spokesperson for the American Lung Association.

In 2014, Kentucky expanded Medicaid, increasing the number of lower-income people who qualified for lung cancer screening and any related treatment. Adults 50 to 80 years old are advised to get a CT scan every year if they have accumulated at least 20 pack years and still smoke or have quit within the past 15 years, according to the latest task force recommendation, which widened the pool of eligible adults. (To calculate pack years, multiply the packs of cigarettes smoked daily by years of smoking.) The lung association offers an online quiz, called “Saved By The Scan,” to figure out likely eligibility for insurance coverage.

Half of U.S. patients aren’t diagnosed until their cancer has spread beyond the lungs and lymph nodes to elsewhere in the body. By then, the five-year survival rate is 8.2%.

But regular screening boosts those odds. When a CT scan detects lung cancer early, patients have an 81% chance of living at least 20 years, according to data published in November in the journal Radiology.

Some adults, like Lisa Ayers, didn’t realize lung cancer screening was an option. Her family doctor recommended a CT scan last year after she reported breathing difficulties. Ayers, who lives in Ohio near the Kentucky border, got screened at UK King’s Daughters, a hospital in far eastern Kentucky. The scan didn’t take much time, and she didn’t have to undress, the 57-year-old said. “It took me longer to park,” she quipped.

She was diagnosed with a lung carcinoid tumor, a type of neuroendocrine cancer that can grow in various parts of the body. Her cancer was considered too risky for surgery, Ayers said. A biopsy showed the cancer was slow-growing, and her doctors said they would monitor it closely.

Ayers, a lifelong smoker, recalled her doctor said that her type of cancer isn’t typically linked to smoking. But she quit anyway, feeling like she’d been given a second chance to avoid developing a smoking-related cancer. “It was a big wake-up call for me.”

Adults with a smoking history often report being treated poorly by medical professionals, said Jamie Studts, a health psychologist and a LEADS principal investigator, who has been involved with the research from the start. The goal is to avoid stigmatizing people and instead to build rapport, meeting them where they are that day, he said.

“If someone tells us that they’re not ready to quit smoking but they want to have lung cancer screening, awesome; we’d love to help,” Studts said. “You know what? You actually develop a relationship with an individual by accepting, ‘No.’”

Nationally, screening rates vary widely. Massachusetts reaches 11.9% of eligible residents, while California ranks last, screening just 0.7%, according to the lung association analysis.

That data likely doesn’t capture all California screenings, as it may not include CT scans done through large managed care organizations, said Raquel Arias, a Los Angeles-based associate director of state partnerships at the American Cancer Society. She cited other 2022 data for California, looking at lung cancer screening for eligible Medicare fee-for-service patients, which found a screening rate of 1%-2% in that population.

But, Arias said, the state’s effort is “nowhere near what it needs to be.”

The low smoking rate in California, along with its image as a healthy state, “seems to have come with the unintended consequence of further stigmatizing people who smoke,” said Arias, citing one of the findings from a 2022 report looking at lung cancer screening barriers. For instance, eligible patients may be reluctant to share prior smoking habits with their health provider, she said.

A photo of Stumbo sitting at a desk and using the computer.
Stumbo, an internal medicine physician, became a champion for lung cancer screening after his mother was diagnosed with the disease.(Veronica Turner for KFF Health News)

Meanwhile, Kentucky screening efforts progress, scan by scan.

At Appalachian Regional Healthcare, 3,071 patients were screened in 2023, compared with 372 in 2017. “We’re just scratching the surface of the potential lives that we can have an effect on,” said Stumbo, a lung cancer screening champion at the health system, which includes 14 hospitals, most located in eastern Kentucky.

The doctor hasn’t shed his own grief about what his family missed after his mother died at age 51, long before annual screening was recommended. “Knowing that my children were born, and never knowing their grandmother,” he said, “just how sad is that?”

New Eligibility Rules Are a Financial Salve for Nearly 2 Million on Medi-Cal

Millions of Medi-Cal beneficiaries can now save for a rainy day, keep an inheritance, or hold on to a modest nest egg, without losing coverage, thanks to an eligibility change phased in over the past year and a half. It also has opened the door for thousands who previously did not qualify for Medi-Cal, the health insurance program for low-income residents that covers over one-third of California’s population.

Until Jan. 1, 3 million Medi-Cal beneficiaries, mainly those who are aged, blind, disabled, in long-term care, or in the federal Supplemental Security Income program, faced limits on the value of financial accounts and personal property they could hold to qualify for coverage. Now, nearly 2 million of them will no longer face these restrictions, putting them on par with the roughly 12 million other Medi-Cal beneficiaries who don’t have asset limits.

They still must be below Medi-Cal’s income threshold, which for most enrollees is currently $1,677 a month for a single adult and $3,450 for a family of four. However, the change will eliminate a lot of paperwork for applicants and the county workers who verify their eligibility.

For a long time, this group of Medi-Cal beneficiaries could have no more than $2,000 in the bank — $3,000 for a married couple — though the home they lived in, as well as one car and certain types of other personal property, were exempt.

“If you had $5,000 in assets, you would have to spend $3,000 on something to prove that you were beneath the limit to qualify,” says Tiffany Huyenh-Cho, a senior attorney at the advocacy group Justice in Aging. “We had people who prepaid rent, spent money on car repairs, bought a new couch or appliances — things to reduce their assets in order to get to the $2,000 limit.”

Now, Huyenh-Cho adds, “you don’t have to remain in deep poverty. You can save for an emergency; you can save for retirement or for a security deposit if you want to move.”

And those who have hoped to leave a little something for their children when they die can now do so, even if they need expensive long-term care.

The first phase of the rule change was implemented in July 2022, when the threshold was raised dramatically to $130,000 for an individual and $195,000 for a two-person household, making it a nonfactor for the vast majority of those concerned. After all, most people with incomes low enough to qualify for Medi-Cal would not have that much saved. For this reason, the total elimination of the so-called asset test ushered in this year is expected to help fewer people financially than the first change did.

Still, there are some people with more than $130,000 in the bank whose savings would have been wiped out in shockingly short order had they needed long-term care in a nursing facility or at home. Now, they can qualify to have Medi-Cal pick up that cost.

Joanne Shinozaki, a resident of Granada Hills, a Los Angeles neighborhood, hired private full-time caregiving last year for her mother, Fujiko, who has dementia. But it cost nearly $11,000 a month, which Shinozaki quickly realized would burn fast through the roughly $200,000 in savings her father had left when he died early last year. Reluctantly, she put her mom in a memory care home, which was less expensive. But after a 10% increase in January, it is now costing $9,000 a month, although that includes food and utilities.

Fujiko Shinozaki, a senior woman, sits in a wheelchair and looks towards the camera. She is inside a nursing home.
Fujiko Shinozaki, who has dementia, is currently in a memory care home in Agoura Hills, California. Thanks to a change in eligibility rules that took effect Jan. 1, she may now qualify for Medi-Cal despite a nest egg her husband left when he died last year. Her daughter, Joanne Shinozaki, hopes Medi-Cal will pay for in-home care at her mother’s house.(Joanne Shinozaki)

Because of the money Shinozaki’s dad left, her mom did not qualify for Medi-Cal under the old rules. But now, that money no longer counts against her. Shinozaki, a veterinarian who quit her job to coordinate her mother’s care, needs to return to work soon. She has applied for Medi-Cal for her mom and is waiting for it to be approved.

“It would mean being able to bring her back to the house where she’s lived since 1988, if she’s well enough to come home,” Shinozaki says. To do that, she will need to get her mom access to caregivers via Medi-Cal’s In-Home Supportive Services program.

Indeed, another benefit of the change in eligibility rules is that it supports the caregiver economy, says Kim Selfon, a Medi-Cal and IHSS policy specialist at Bet Tzedek Legal Services, which provides free legal assistance to people in LA County.

Advocates who work with Medi-Cal enrollees and applicants say they often have to explain the difference between assets and income. “I think a lot of people are confused,” says Stephanie Fajuri, program director at the Center for Health Care Rights, an LA-based nonprofit that helps people navigate Medi-Cal and Medicare. “They say, ‘What do you mean? I could be making $1 million a year?’ And we say, ‘No, that’s income.’”

So, let’s be clear: Under the new rules, yes, you can have a second house. But if you are renting it out, that’s income — and given today’s rental prices, it will likely disqualify you from full Medi-Cal benefits. You can also keep an investment account regardless of the balance, but distributions from it as well as any interest, dividends, and capital gains it generates are also income.

Again, most beneficiaries are unlikely to have a large pool of assets and still have income low enough to qualify for Medi-Cal. But if you suddenly inherit a modest sum, or even a large one, now you can keep it, though it may briefly affect your coverage.

Unfortunately, the 1.1 million Medi-Cal beneficiaries receiving Supplemental Security Income are still subject to an asset test, because different rules apply to them.

Advocates and legal aid attorneys say there hasn’t been enough public education about the elimination of the asset limits and that many people still believe their bank accounts or personal property rule them out.

People may also fear the state will take their house and other assets after they die to recoup what it spent on their care. That worry could intensify now that people can keep all their assets and still be on Medi-Cal. But a 2017 change in the law restricted the state’s ability to put a claim on your house or other assets after you die and made it relatively easy to insulate them entirely.

The state can claim only up to the amount Medi-Cal spent on certain medical services, including long-term and intermediate care and related costs. Even in those cases, it cannot touch your home or any other asset if you have protected it by putting it in a living trust or through some other legal move that keeps it out of probate court. And the state can’t put a claim on it if there is a co-owner who outlives the Medi-Cal beneficiary.

“Now that people can hold unlimited assets, they need to be more cognizant of protecting them should they need long-term care,” says Dina Dimirjian, a staff attorney at Neighborhood Legal Services of Los Angeles County.

The Department of Health Care Services, which oversees Medi-Cal, has published on its website (dhcs.ca.gov) an FAQ on the elimination of the asset test. Another good source of information, and legal assistance, is the Health Consumer Alliance (healthconsumer.org or 888-804-3536).

The end of the asset test will also cure a big bureaucratic headache for beneficiaries and applicants and free up countless hours for Medi-Cal eligibility workers in county offices.

“People had to navigate this and figure out what counts and what doesn’t count, and they had to prove it, and the county had to verify it,” says David Kane, a senior attorney at the Western Center on Law & Poverty. “It’s a good thing we can say goodbye to it.”

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

California Prison Drug Overdoses Surge Again After Early Treatment Success

SACRAMENTO, Calif. — Drug overdose deaths in California state prisons rebounded to near record levels last year even as corrections officials touted the state’s intervention methods as a model for prisons and jails across the United States.

At least 59 prisoners died of overdoses last year, according to a KFF Health News analysis of deaths in custody data the California Department of Corrections and Rehabilitation is required to report under a new state law. That’s more than double the number who died of overdoses in each of 2020 (23) and 2021 (24).

Prison officials would not provide the number of overdose deaths in 2022, saying they are still being analyzed for a report to be released later this year. But attorneys representing prisoners said they believe there were substantially more fatal overdoses in 2022 than in the previous two years.

The new numbers are a big setback for state officials, who poured resources into overdose prevention efforts after a record 64 overdose deaths in 2019 gave California prisons the highest drug overdose death rate of any state correctional system in the United States.

With nearly 94,000 state prisoners, California is one of the nation’s largest providers of medication-assisted drug treatment. The prisoners’ attorneys still support California’s pioneering program, saying there would be even more deaths without it.

“Fentanyl. That’s I think probably the main cause from what I hear,” said Don Specter, a lead attorney in the major class-action lawsuit over poor medical care of California prisoners, referring to the synthetic opioid at the heart of the nation’s overdose crisis. “Nothing else has really changed too much. It’s very pervasive.”

With a lower prison population than in previous years, California’s 2023 numbers represent a record high overdose death rate of at least 62 per 100,000 prisoners — and the numbers are likely to rise further as the cause of death is determined in some cases.

“National data has shown an alarming increase of overdose deaths across the country, largely driven by synthetic opioids (primarily fentanyl),” Ike Dodson, a spokesperson for California Correctional Health Care Services, said in an email. He added that prison officials “continue to evaluate substance use disorder treatment to improve the safety and well-being of all who live or work in a state correctional facility, including plans to broadly expand access to Narcan,” an overdose reversal device.

Until now, California’s increasingly comprehensive drug intervention program had been an apparent success story.

In January 2020, when the prison population was about 124,000, the state began using drugs like buprenorphine, naltrexone, and methadone to lessen drug users’ cravings and the crash of withdrawal symptoms while helping them stay away from dangerous opioids. The new program’s focus on medication-assisted treatment appeared to be working after deaths fell to 23 that year.

The medication-assisted treatment is one of five core components of the prison system’s approach: screening every arriving prisoner for substance abuse; use of medication where needed; therapy; supportive housing in prisons; and pre-release planning and post-release assistance. Officials say all five have now begun to varying degrees, at a cost of $270 million for the fiscal year starting July 1, 2024.

By 2021, the prisons’ reported overdose death rate fell to 25 per 100,000, less than half the rate before the program began and well below the overall national average.

There also was a nearly one-third drop in drug-related hospitalizations and emergency room visits among California prisoners receiving the medication-assisted treatment, researchers for the program said in a progress report last year.

In promoting the approach, corrections experts last year cited California’s “immediate and significant” progress in reducing deaths, emergency hospitalizations, and drug abuse-related infections. While the use of medications to help keep prisoners from using opioids is rapidly expanding, it remains underused nationally in other prison and jail systems, the report said.

But last year’s preliminary overdose death toll in the state’s prisons was close to the record numbers of 2018 and 2019. Overdoses likely caused 11 deaths in October, according to attorneys representing prisoners — the most they had seen in a month.

Drug-related hospitalizations also have seen a more recent surge, attorneys representing prisoners said, citing the state’s data in a December court filing.

Efforts to crack down on the smuggling of drugs and other contraband into prisons have had limited effect.

Corrections spokesperson Alia Cruz said the department favors a “multilayered approach” that couples prison security with deterring smuggling and disrupting gangs and other drug distributors.

There were 236 smuggling arrests last calendar year, up significantly from the 2020-21 and 2021-22 fiscal years and similar to 2019-20 but about one-third fewer than in 2018-19. “Miscellaneous” seizures, which include fentanyl and other opioids, were up about 14% through the first nine months of 2023, the last data available, over the same period a year earlier.

Prison medical staff began carrying naloxone, a medication that can reverse opioid overdoses and is often sold under the Narcan brand, in 2016. Only in late September 2023 was it made centrally available in every housing unit for officers’ emergency use.

“That’s a good start, but all officers should carry the medication, which should be administered as quickly as possible to be most effective,” said Steven Fama, another attorney who represents prisoners and tracks prison treatment programs.

J. Clark Kelso, the federal court-appointed receiver who controls prison medical care in California, said during a court hearing in December that he is considering using his authority to obtain more naloxone. Fama said fewer than 10% of prisoners had been offered naloxone to carry for emergency use, with prison officials citing supply shortages for the delay in broader distribution.

The first group of state prisoners to be offered naloxone was at Richard J. Donovan Correctional Facility in San Diego County in August 2023. It had been averaging 35 overdoses a month, fatal and nonfatal, between October 2022 and March 2023, or more than one a day.

California “is leading the nation in this area,” prison officials said in the court filing, citing in part its policy of offering naloxone to all departing prisoners. They said the state is committed to making naloxone available to all prisoners as well. Statewide, California is partnering with a private manufacturer to produce a lower-cost generic form of naloxone nasal spray and expects to have it available by the end of 2024.

Despite the recent surge, California’s program “has and does save lives, and change lives,” Fama said. “Without this treatment the number of overdoses, we believe, would be far larger.”

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

¿Ofrecer vivienda gratis es atención médica? Programas de Medicaid dicen que sí

Estados están invirtiendo miles de millones de dólares en un experimento de atención médica de alto riesgo: utilizar fondos ya escasos de seguros de salud públicos para proporcionar vivienda a los estadounidenses más pobres y enfermos.

California está liderando esta tendencia, destinando gran parte de un presupuesto de $12 mil millones a una ambiciosa iniciativa de Medicaid para ayudar a los pacientes sin hogar a encontrar vivienda, y a pagarla para evitar el desalojo.

Arizona está asignando $550 millones de fondos de Medicaid que se usarán para cubrir seis meses de alquiler para personas sin hogar. Oregon está gastando más de $1,000 millones en servicios como asistencia de alquiler de emergencia para pacientes que no tienen un techo.

Incluso Arkansas, un estado predominantemente conservador, destinará parte de unos $100 millones para ofrecer vivienda a sus más necesitados.

Al menos 19 estados están redireccionando dinero de Medicaid —el programa estatal-federal de salud para personas con bajos ingresos— para abordar la creciente epidemia de falta de vivienda en el país, según los Centros de Servicios de Medicare y Medicaid (CMS).

Aunque no hay consenso sobre si esta estrategia proporcionará una solución a largo plazo para la salud o la vivienda de los pacientes vulnerables, la administración Biden está alentando a otros estados a unirse. Varios están en proceso, incluyendo Tennessee, West Virginia y Montana, y Nueva York obtuvo luz verde del gobierno federal en enero.

El uso de fondos de atención médica para proporcionar vivienda a las personas es “un gran debate filosófico”, dijo Alex Demyan, director asistente de la agencia de Medicaid de Arizona. “Sabemos que la atención de salud no puede resolver todos los problemas, pero también sabemos que las agencias de vivienda están saturadas y que tenemos una enorme necesidad de ayudar a que las personas se estabilicen”.

La falta de vivienda aumentó un 12% en el país el año pasado, con un estimado de 653,104 estadounidenses, el nivel más alto registrado, incluso cuando aumentó drásticamente el inventario de viviendas permanentes y camas de refugio temporal.

A medida que las personas languidecen en las calles, luchando a menudo con la adicción, afecciones mentales graves y enfermedades crónicas no tratadas, funcionarios de salud y líderes políticos recurren a fondos de salud en busca de alivio. Argumentan que la ayuda para la vivienda mejorará la salud y le ahorrará dinero a los contribuyentes al mantener a las personas fuera de instituciones como hogares de adultos mayores, hospitales y cárceles.

Pero las pruebas que respaldan este argumento son mixtas.

Por ejemplo, en un ensayo clínico realizado por investigadores de la Universidad de California-San Francisco, las personas sin hogar del condado de Santa Clara, California, que fueron asignadas al azar para recibir vivienda a largo plazo y servicios, utilizaron el departamento de emergencias psiquiátricas un 38% menos que un grupo de control en un período de cuatro años, al tiempo que aumentó el uso de servicios de salud mental de rutina. Pero aún hubo altas tasas de hospitalización entre los participantes, quienes continuaron dependiendo de la sala de emergencias para atención médica de rutina o para descansar.

Los programas estatales de Medicaid han estado incursionado en el área de vivienda durante mucho tiempo, pero con la bendición y el estímulo de la administración Biden, están lanzando más servicios para más personas con nuevas y grandes cantidades de fondos estatales y federales.

La tendencia es parte de una estrategia más amplia de la Casa Blanca que alienta a los directores de Medicaid a ofrecer servicios sociales junto con la atención médica tradicional, con el objetivo de hacer que sus residentes sean más saludables.

“Un dólar de atención médica puede hacer más que simplemente pagar una visita al médico o una estadía en el hospital”, dijo a KFF Health News Xavier Becerra, secretario del Departamento de Salud y Servicios Humanos (HHS). “Deberíamos estar utilizando el dólar federal de atención médica para la atención preventiva: obtenerla antes de que se enfermen, y mantenerlos saludables. ¿Quién puede negar que alguien que no tiene hogar tendrá más dificultades para mantenerse saludable que alguien que tiene vivienda con agua corriente y calefacción?”, dijo.

Becerra reconoció estas iniciativas como experimentos. Pero dijo que el gobierno federal ya no puede ignorar la muerte y enfermedad que están afectando de manera creciente a las poblaciones sin hogar a lo largo del país.

“Simplemente estamos diciendo, ‘Estado, si puedes demostrarnos que con este dólar de Medicaid mejorarás la salud o el resultado de salud de alguien, entonces has servido efectivamente al propósito del programa Medicaid y le estás ahorrando más dinero a los contribuyentes’”, dijo.

Pero no todos los líderes de atención médica, ni siquiera los expertos en falta de vivienda, creen que esta es la mejor utilización del dinero de Medicaid, especialmente porque el programa enfrenta críticas constantes por no proporcionar atención médica básica a muchos beneficiarios.

“Si estás en Medicaid, a menudo tienes que esperar meses y meses para una visita especializada, incluso si es una preocupación que amenaza la vida, así que me preocupa lo que la gente no podrá obtener debido a esto”, dijo Margot Kushel, investigadora de falta de vivienda y médica de atención primaria en el Hospital General y Centro de Trauma Zuckerberg de San Francisco, que trata principalmente a pacientes de bajos ingresos.

“No es que no quiera que se gaste el dinero, pero ¿se gasta mejor en atención médica?”, se preguntó. “Es mucho mejor que nada, pero está lejos de proporcionar la vivienda a largo plazo y la estabilidad que las personas realmente necesitan”.

Kushel dijo que el peligro es que la mayor parte de la asistencia de vivienda de Medicaid se puede utilizar sólo una vez o tiene un límite de tiempo, como los pagos de alquiler, que normalmente finalizan después de seis meses.

“Cuando la gente llega a una vivienda, ya está muy, muy enferma”, dijo. “¿Qué sucede al final de esos seis meses cuando se termina el alquiler gratuito?”.

En todo el país, los programas estatales de Medicaid están ampliando la definición de atención médica y entrando en el negocio de los servicios sociales, brindando una variedad de beneficios no tradicionales, como comidas saludables a domicilio para pacientes con diabetes y filtros de aire para personas con asma.

Si bien históricamente el gobierno federal ha prohibido el uso del dinero de Medicaid para pagos directos de alquiler, eso ha cambiado.

En 2022, Arizona recibió la aprobación federal para una iniciativa llamada “H2O”, que dará prioridad a las personas sin hogar y a aquellas en riesgo de perder su vivienda que tienen una condición de salud mental y una enfermedad crónica. Cuando se lance en octubre, ofrecerá principalmente dos servicios: pagos de alquiler por hasta seis meses; y viviendas de transición, que pueden incluir refugios con servicios intensivos.

Arizona experimentó un aumento del 5% en el número de personas sin hogar en 2023 con respecto al año anterior. Su programa complementará una iniciativa independiente de Medicaid financiada por el estado que proporciona 3,000 bonos de alquiler para personas del sur de Arizona que padecen una afección mental grave y no tienen hogar, o están en riesgo de quedarse sin hogar. Unas 5,000 personas están en lista de espera para recibir estos bonos.

“Hemos visto resultados de salud muy positivos, y por ende reducciones de costos, por lo que para nosotros tuvo mucho sentido ampliar nuestro trabajo a ese espacio”, dijo Demyan. Ese programa redujo las visitas a emergencias en un 45% y las admisiones en hospitales en un 53% a los seis meses después de que los pacientes comenzaron a recibir servicios, al tiempo que aumentó la atención preventiva menos costosa en un 56% y se ahorró $4,300 por miembro, por mes, según datos estatales.

California, hogar de casi el 30% de la población sin techo del país, experimentó un aumento de casi el 6% en el número de personas sin hogar en 2023, llegando a cerca de 181,000 personas.

El estado lanzó su enorme iniciativa CalAIM en 2022 para ofrecer una amplia variedad de servicios sociales a una pequeña porción de los aproximadamente 15 millones de afiliados a Medicaid del estado. Una gran parte de los recursos se destina a servicios de vivienda para personas sin hogar o que enfrentan un desalojo, como cubrir depósitos de seguridad y contratar administradores de casos para buscar apartamentos disponibles.

Líderes estatales también están pidiendo permiso a la administración Biden para proporcionar seis meses de alquiler.

“Si uno carga con una gran cantidad de problemas de salud física o conductual, ya sea diabetes o VIH, presión arterial alta o esquizofrenia, y no tiene vivienda, es realmente difícil estabilizar esas condiciones”, dijo Mark Ghaly, secretario de la California Health and Human Services Agency.

Pero advirtió que el enfoque central de Medicaid debe seguir siendo lograr que las personas estén sanas, incluso si viven al aire libre, lo cual es un desafío monumental y costoso porque afecciones como la diabetes, las enfermedades cardíacas y el VIH requieren un tratamiento continuo y, a menudo, múltiples medicamentos.

“No creo que la atención médica sea responsable de resolver la situación de las personas sin hogar en California ni en ningún otro lugar”, dijo Ghaly. “Pero si la inestabilidad o la falta de vivienda es uno de los factores clave que obstaculizan la salud, entonces es absolutamente necesario que le prestemos atención”.

Las aseguradoras de salud que brindan cobertura de Medicaid en California pueden elegir si ofrecen servicios de vivienda, pero Oregon exige que las aseguradoras de Medicaid lo hagan.

La falta de vivienda aumentó un 12% en el estado entre 2022 y 2023, pero Oregon se centra en los pacientes en riesgo de quedarse sin hogar. Los participantes serán elegibles para seis meses de alquiler y otros servicios cuando el programa se lance en noviembre, dijo Dave Baden, subdirector de la Oregon Health Authority. “Realmente estamos tratando de centrarnos en las personas que están al borde del abismo”, dijo Baden. “Si ya no tienes hogar, realmente necesitas más dinero, y por más tiempo, para mantener a esa persona con vivienda”.

No sólo los estados están experimentando con este enfoque. El sistema de salud Kaiser Permanente ha invertido sus propios fondos en vivienda. En los últimos años, el gigante de la atención médica ha comprometido cientos de millones de dólares para ayudar a mantener o construir miles de unidades de vivienda asequibles, además de brindar a sus miembros beneficios de Medicaid relacionados con la vivienda.

“Tenemos que hacer algo. La crisis está fuera de control”, afirmó Bechara Choucair, su director de salud. Sherry Glied, profesora de la Universidad de Nueva York y ex funcionaria de la administración Obama, experta en economía de la atención médica, advirtió que el ingreso de instituciones de atención médica al negocio de los servicios sociales podría ser una “distracción peligrosa”.

Glied señaló que al menos 57 sistemas de salud y 917 hospitales en todo el país han lanzado iniciativas de servicios sociales, la mayoría centrándose en la vivienda. Debido a que muchas instituciones luchan por cumplir con los estándares de seguridad del paciente y atención de calidad, Glied argumentó que deberían mejorar la atención básica y dejar la vivienda a organizaciones de servicios sociales “que se especializan en este trabajo”.

Peter Lee, otro ex funcionario de la administración Obama y director ejecutivo fundador del mercado de seguros del Obamacare en California, dijo que los proveedores de atención médica deberían considerar ofrecer algunos servicios sociales y de vivienda, pero teme que tales iniciativas puedan desviar dinero de la medicina tradicional e impedir que los pacientes reciban una atención adecuada.

“En los últimos cinco a 10 años, se ha reconocido ampliamente que la salud es mucho más que la atención médica real. Es muy cierto”, dijo Lee. “La pregunta es cómo abordar esos problemas mientras la atención médica en sí no está funcionando demasiado bien. El objetivo principal de esto es garantizar que las personas con diabetes reciban una excelente atención, y que puedan tener los chequeos regulares que necesitan”.

Los programas estatales de Medicaid, que brindan atención a cerca de 80 millones de estadounidenses, a menudo tienen dificultades para brindar servicios médicos básicos, como visitas pediátricas al dentista y exámenes de detección de cáncer de mama.

En California, el estado que gasta más en servicios de vivienda, los niños con Medicaid no tuvieron acceso oportuno a atención de salud mental o de adicciones en 2022, según una auditoría publicada en noviembre.

A pesar de estas deficiencias, la mayoría de los estados que han recibido el visto bueno federal para experimentar con servicios de vivienda han obtenido financiación para cinco años. California se encuentra entre los estados que esperan que los beneficios sean permanentes.

Aunque una presidencia republicana podría interrumpir esta tendencia, los estados dicen que están comprometidos, incluso si sus iniciativas no pasan un análisis tradicional de costo-beneficio.

“El enfoque particular en el retorno financiero de la inversión no es tan claro como lo era antes”, dijo Cindy Mann, directora federal de Medicaid durante la presidencia de Obama.

“Los estados simplemente están viendo el poco sentido que tiene tratar a las personas y luego devolverlas a las calles sin el apoyo que necesitan”.

Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

States Target Health Insurers’ ‘Prior Authorization’ Red Tape

Christopher Marks noticed an immediate improvement when his doctor prescribed him the Type 2 diabetes medication Mounjaro last year. The 40-year-old truck driver from Kansas City, Missouri, said his average blood sugar reading decreased significantly and that keeping it within target range took less insulin than before.

But when his doctor followed the typical prescribing pattern and increased his dose of Mounjaro — a drug with a wholesale list price of more than $1,000 a month — Marks’ health insurer declined to pay for it.

Marks had Cigna insurance that he purchased on the federal health insurance marketplace, healthcare.gov. After two appeals over a month and a half, Cigna agreed to cover the higher dose. A few months later, he said, when it was time to up his dose once more, he was denied again. By November, he decided it wasn’t worth sparring with Cigna anymore since the insurer was leaving the marketplace in Missouri at the start of this year. He decided to stay on the lower dose until his new insurance kicked in.

“That is beyond frustrating. People shouldn’t have to be like, ‘It’s not worth the fight to get my medical treatment,’” Marks said.

The process Marks encountered is called “prior authorization,” or sometimes “pre-certification,” a tool insurers say they use to rein in costs and protect patients from unnecessary or ineffective medical treatment. But the practice has prompted backlash from patients like Marks, as well as groups representing medical professionals and hospitals that say prior authorization can interfere with treatment, cause medical provider burnout, and increase administrative costs.

In January, the Biden administration announced new rules to streamline the process for patients with certain health plans, after attempts stalled out in Congress, including a bill that passed the House in 2022. But states are considering prior authorization bills that go even further. Last year, lawmakers in 29 states and Washington, D.C., considered some 90 bills to limit prior authorization requirements, according to the American Medical Association, with notable victories in New Jersey and Washington, D.C. The physicians association expects more bills this year, many with provisions spelled out in model legislation the group drafted.

In 2018, health insurers signed a consensus statement with various medical facility and provider groups that broadly laid out areas for improving the prior authorization process. But the lack of progress since then has shown the need for legislative action, said Jack Resneck Jr., past president of the AMA and a current trustee.

“They have not lived up to their promises,” Resneck said.

“People shouldn’t have to be like, ‘It’s not worth the fight to get my medical treatment,’” says Marks, who spent months trying to get his health insurer to agree to pay for a higher dose of the Type 2 diabetes medication Mounjaro prescribed by his doctor. (Christopher Smith for KFF Health News)

Resneck, a California dermatologist, emphasized pending bills in Indiana, Massachusetts, North Carolina, Oklahoma, and Wyoming that include several policies backed by the AMA, including quicker response times, requirements for public reporting of insurers’ prior authorization determinations, and programs to reduce the volume of requests, sometimes called “gold carding.” Legislation has come from both Democratic and Republican lawmakers, and some is bipartisan, as in Colorado.

In Missouri, legislation introduced by Republican state Rep. Melanie Stinnett aims to establish one of those gold carding programs for treatment and prescriptions. Stinnett said she regularly was frustrated by prior authorization hurdles in her work as a speech pathologist before joining the legislature in 2023.

“The stories all kind of look similar: It’s a big fight to get something done on the insurance side for approval,” Stinnett said. “Then sometimes, even after all of that fight, it feels like it may have not been worthwhile because some people then have a change at the beginning of the year with their insurance.”

Under her bill, a medical provider’s prior authorization requests during a six-month evaluation period would be reviewed. After that period, providers whose requests were approved at least 90% of the time would be exempt from having to submit requests for the next six months. The exemptions would also apply to facilities that meet that threshold. Then, she said, they would need to continue meeting the threshold to keep the “luxury” of the exemption.

Five states have passed some form of gold carding program: Louisiana, Michigan, Texas, Vermont, and West Virginia. The AMA is tracking active gold carding bills in 13 states, including Missouri.

A 2022 survey of 26 health insurance plans conducted by the industry trade group AHIP found that just over half of those plans had used a gold carding program for medical services while about a fifth had done so for prescriptions. They gave mixed reviews: 23% said patient safety improved or stayed the same, while 20% said the practice increased costs without improving quality.

The new federal prior authorization rules finalized by the Centers for Medicare & Medicaid Services stop short of gold carding and don’t address prior authorizations for prescription drugs, like Marks’ Mounjaro prescription. Beginning in 2026, the new rules establish response time frames and public reporting requirements — and ultimately will mandate an electronic process — for some insurers participating in federal programs, such as Medicare Advantage or the health insurance marketplace. Manual submissions accounted for 39% of prior authorization requests for prescriptions and 60% of those for medical services, according to the 2022 insurance survey.

In Missouri, state and national organizations representing doctors, nurses, social workers, and hospitals, among others, back Stinnett’s bill. Opposition to the plan comes largely from pharmacy benefit managers and the insurance industry, including the company whose prior authorization process Marks navigated last year. A Cigna Healthcare executive submitted testimony saying the company’s experience showed gold card policies “increase inappropriate care and costs.”

The St. Louis Area Business Health Coalition, which represents dozens of employers that purchase health insurance for employees, also opposes the bill. Members of the coalition include financial services firm Edward Jones, coal company Peabody Energy, and aviation giant Boeing, as well as several public school districts and the St. Louis city and county governments.

Louise Probst, the coalition’s executive director, said the prior authorization process has issues but that the coalition would prefer that a solution come from insurers and providers rather than a new state law.

“The reason I hate to see things just set in stone is that you lose the flexibility and the nuance that could be helpful to patients,” Probst said.

A spokesperson for the health insurer Cigna says the company uses prior authorizations for popular drugs such as Mounjaro to help ensure patients get the right medications and dosages. But in the case of Marks, she says, “we fell short and we greatly regret the stress and frustration this caused.” (Christopher Smith for KFF Health News)

On the other side of the state, Marks purchased insurance for this year on the federal marketplace from Blue Cross and Blue Shield of Kansas City. In January, his doctor re-prescribed the higher dose of Mounjaro that Cigna had declined to cover. A little over a week later, Marks said, his new insurance approved the higher dose “without any fuss.”

Cigna spokesperson Justine Sessions said the company uses prior authorizations for popular drugs such as Mounjaro to help ensure patients get the right medications and dosages.

“We strive to make authorizations quickly and correctly, but in Mr. Marks’ case, we fell short and we greatly regret the stress and frustration this caused,” she said. “We are reviewing this case and identifying opportunities for improvement to ensure this does not happen in the future.”

Marks’ aim with this higher dose of Mounjaro is to get off his other diabetes medications. He particularly hopes to stop taking insulin, which for him requires multiple injections a day and carries a risk of dangerous complications from low blood sugar.

“I don’t really use the word ‘life-changing,’ but it kind of is,” Marks said. “Getting off insulin would be great.”

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