From California Healthline.org – Page 3

Native American Patients Are Sent to Collections for Debts the Government Owes

Tescha Hawley learned that hospital bills from her son’s birth had been sent to debt collectors only when she checked her credit score while attending a home-buying class. The new mom’s plans to buy a house stalled.

Hawley said she didn’t owe those thousands of dollars in debts. The federal government did.

Hawley, a citizen of the Gros Ventre Tribe, lives on the Fort Belknap Indian Reservation in Montana. The Indian Health Service is a federal agency that provides free health care to Native Americans, but its services are limited by a chronic shortage of funding and staff.

Hawley’s local Indian Health Service hospital wasn’t equipped to deliver babies. But she said staff there agreed that the agency would pay for her care at a privately owned hospital more than an hour away.

That arrangement came through the Purchased/Referred Care program, which pays for services Native Americans can’t get through an agency-funded clinic or hospital. Federal law stresses that patients approved for the program aren’t responsible for any of the costs.

But tribal leaders, health officials, and a new federal report say patients are routinely billed anyway as a result of backlogs or mistakes from the Indian Health Service, financial middlemen, hospitals, and clinics.

The financial consequences for patients can last years. Those sent to collections can face damaged credit scores, which can prevent them from securing loans or require them to pay higher interest rates.

The December report, by the federal Consumer Financial Protection Bureau, found these long-standing problems contribute to people in Native American-majority communities being nearly twice as likely to have medical debt in collections compared with the national average. And their amount of medical debt is significantly higher.

The report found the program is often late to pay bills. In some cases, hospitals or collection agencies hound tribal citizens for more money after bills are paid.

Hawley’s son was born in 2003. She had to wait another year to buy a home, as she struggled to pay off the debt. It took seven years for it to drop from her credit report.

“I don’t think a person ever recovers from debt,” Hawley said.

A photograph of a mother with her two children. Her daughter is on the viewer's left and her son is on the viewer's right, while she is in the center. The family is outside near a grassy field on a sunny day. — Tescha Hawley (center) sits for a portrait with her children, Tearia Sunchild (left) and Trayce Sunchild, near Jim Brown Creek on the Fort Belknap Indian Reservation in Montana. Tescha says hospital bills from her son’s birth that the Indian Health Service promised to pay were sent to debt collectors in her name. The financial consequences lasted years.(Jessica Plance for KFF Health News)

Hawley, a cancer survivor, still must navigate the referral program. In 2024 alone, she received two notices from clinics about overdue bills.

Frank White Clay, chairman of the Crow Tribe in Montana, testified about the impact of wrongful billing during a U.S. House committee hearing in April. He shared stories of veterans rejected for home loans, elders whose Social Security benefits were reduced, and students denied college loans and federal aid.

“Some of the most vulnerable people are being harassed daily by debt collectors,” White Clay said.

No one is immune from the risk. A high-ranking Indian Health Service official learned during her job’s background check that her credit report contained referred-care debt, the federal report found.

Native Americans face disproportionately high rates of poverty and disease, which researchers link to limited access to health care and the ongoing impact of racist federal policies.

White Clay is among many who say problems with the referred-care program are an example of the U.S. government violating treaties that promised to provide for the health and welfare of tribes in return for their land.

The chairman’s testimony came during a hearing on the Purchased and Referred Care Improvement Act, which would require the Indian Health Service to create a reimbursement process for patients who were wrongfully billed. Committee members approved the bill in November and sent it for consideration by the full House.

A second federal bill, the Protecting Native Americans’ Credit Act, would prevent debt like Hawley’s from affecting patients’ credit scores. The bipartisan bill hadn’t had a hearing by mid-December.

The exact number of people wrongfully billed isn’t clear, but the Indian Health Service has acknowledged it has work to do.

The agency is developing a dashboard to help workers track referrals and to speed up bill processing, spokesperson Brendan White said. It’s also trying to hire more referred-care staff, to address vacancy rates of more than 30%.

Officials say problems with the program also stem from outside health providers that don’t follow the rules.

Melanie Egorin, an assistant secretary at the U.S. Department of Health and Human Services, said at the hearing that the proposed legislation doesn’t include consequences for “bad actors” — health facilities that repeatedly bill patients when they shouldn’t.

“The lack of enforcement is definitely a challenge,” she said.

But tribal leaders warned that penalties could backfire.

White Clay told lawmakers that some clinics already refuse to see patients if the Indian Health Service hasn’t paid for their previous appointments. He’s worried the threat of penalties would lead to more refusals.

If that happens, White Clay said, Crow tribal members who already travel hours to access specialty treatment would have to go even farther.

The Consumer Financial Protection Bureau report found clinics are already refusing to see any referred-care patients due to the program’s payment problems.

The bureau and the Indian Health Service also recently published a letter urging health care providers and debt collectors not to hold patients accountable for program-approved care.

White, the Indian Health Service spokesperson, said the agency recently updated the referred-care forms sent to outside hospitals and clinics to include billing instructions and to stress that patients aren’t liable for any out-of-pocket costs. And he said the staff can help patients get reimbursed if they have already paid for services that were supposed to be covered.

Joe Bryant, an Indian Health Service official who oversees efforts to improve the referral program, said patients can ask credit bureaus to remove debt from their reports if the agency should have covered their bills.

A woman is using tongs to flip food on a circular grill. — Tescha Hawley (right) and her mother, Janice Hawley, serve food from Tescha’s nonprofit to cross-country running teams at the Harlem Invitational in Harlem, Montana. Tescha began the Day Eagle Hope Project to improve the health of her community after seeing how hard it was to access care when she was diagnosed with cancer in 2016.(Jessica Plance for KFF Health News)

Leaders with the Confederated Tribes of the Colville Reservation in Washington state helped shape the proposed legislation after their citizens were repeatedly harmed by wrongful billing.

Tribal Chairman Jarred-Michael Erickson said problems began in 2017, when a regional Indian Health Service office took over the referred-care program from local staff.

It “created a domino effect of negative outcomes,” Erickson wrote in a letter to Congress.

He said some tribal members whose finances were damaged stopped using the Indian Health Service. Others avoided health care altogether.

Responsibility for the Colville Reservation program transferred back to local staff in 2022. Staffers found the billing process hadn’t been completed for thousands of cases, worth an estimated $24 million in medical care, Erickson told lawmakers.

Workers are making progress on the backlog and they have explained the rules to outside hospitals and clinics, Erickson said. But he said there are still cases of wrongful billing, such as a tribal member who was sent to collections after receiving a $17,000 bill for chemotherapy that the agency was supposed to pay for.

Erickson said the tribe is in the process of taking over its health care facilities instead of having the Indian Health Service run them. He and others who work in Native American health said tribally managed units — which are still funded by the federal agency — tend to have fewer problems with their referred-care programs.

For example, they have more oversight over staff and flexibility to create their own payment tracking systems.

But some Native Americans oppose tribal management because they feel it releases the federal government from its obligations.

Beyond wrongful billing, access to the referred-care program is limited because of underfunding from Congress. The $1 billion budget this year is $9 billion short of the need, according to a committee report by tribal health and government leaders.

Donald Warne, a physician and member of the Oglala Sioux Tribe in South Dakota, called the proposed legislation a “band-aid.” He said the ultimate solution is for Congress to fully fund the Indian Health Service, which would reduce the need for the referred-care program.

Back in Montana, Hawley said she braces for a fight each time she gets a bill that the referral program was supposed to cover.

“I’ve learned not to trust the process,” Hawley said.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

How Are States Spending Opioid Settlement Cash? We Built a Database of Answers

In the past few years, state and local governments across the U.S. have begun spending billions in opioid settlements paid by companies accused of fueling the overdose crisis. But where is that money going, who is getting it, and is it doing any good?

KFF Health News, partnering with the Johns Hopkins Bloomberg School of Public Health and Shatterproof, a national nonprofit focused on addiction, undertook a yearlong investigation to find out.

Dozens of interviews, thousands of pages of documents, an array of public records requests, and outreach to all 50 states resulted in a first-of-its kind database that catalogs more than 7,000 ways opioid settlement cash was used in 2022 and 2023. It’s the most comprehensive resource to date tracking some of the largest public health settlements in American history.

Among the findings:

States and localities received more than $6 billion in opioid settlement funds in 2022 and 2023. According to public records, they spent or committed about a third of that amount and set aside about another third for future use. The final third was untrackable, as many jurisdictions did not produce public reports on the funds.
Reports of spending tracked the minuscule to the monumental, from $11.74 to buy postage in Yavapai County, Arizona, to more than $51 million to increase the addiction treatment workforce in California.
States allotted, on average, about 18% of their funds for addiction and mental health treatment; 14% for recovery services such as housing, transportation, and legal aid; 11% for harm reduction efforts such as overdose reversal medications; and 9% for prevention programs that aim to stop people from developing substance use disorders. States committed, on average, about 2% for syringe service programs, through which people can get sterile needles. (A variety of entities received this money, from law enforcement to nonprofit organizations to government agencies.)
Governments reported spending more than $240 million on purposes that did not qualify as opioid remediation. (Most settlements allow states to spend up to 15% of their funds this way.) Most of this tranche went to legal fees, but several jurisdictions funneled money to their general fund. One county even sent funds to its road and bridge department.
Several cities and counties reported expenditures they said addressed the overdose crisis but that would leave an average person scratching their head — such as $33.07 to an anti-abortion pregnancy center in Sandborn, Indiana, and $30,362 to screen first responders for heart disease in Oregon City, Oregon.

“When people know that people aren’t watching and there’s no accountability, then they can kind of do what they want,” said Tonja Myles, a community activist in Baton Rouge, Louisiana, who is in recovery. “That’s why we have to have some kind of database and accountability.”

Despite the recent decline in overall overdose deaths in the U.S., more than 90,000 people still died in the 12 months ending July 2024 and rates are rising in many Black and Native American communities.

“We can’t mess up or miss this moment,” Myles said.

Opioid settlement payouts are expected to total about $50 billion over nearly two decades, paid by more than a dozen companies that made or distributed prescription painkillers, including Johnson & Johnson, Walgreens, and Walmart. Although it’s a large sum, it’s dwarfed by the size of the crisis, making each dollar that’s spent critical.

KFF Health News and its partners reviewed hundreds of settlement spending reports, extracting expenditures line by line, and developed a methodology to sort the expenditures into categories like treatment or prevention. States were given an opportunity to review the data and comment on their spending.

To be sure, the database does not capture the full picture of opioid settlement spending nationwide. Some places do not publish spending reports, while others declined to engage with this project. The data presented here is a snapshot as of the end of 2023 and does not account for further spending in 2024. The differences in how states control, process, and report on the money make apples-to-apples comparisons nearly impossible. Still, the database helps fill a gap left by a lack of national reporting requirements and federal government inaction.

It is “a tool for those who want to objectively measure whether everything that can be done is being done,” said Matthew Myers, a former president of the Campaign for Tobacco-Free Kids, which compiles similar annual reports on tobacco settlement money.

Treatment a Clear Winner

The top priority to emerge from early opioid settlement spending was treatment, with more than $416 million spent or committed to residential rehabs, outpatient counseling, medications for opioid use disorder, and more.

The state of New York — which spent the most on treatment — allocated about $22 million of that for programs that make the gold standard for care as easy as possible for patients: providing same-day prescriptions for buprenorphine, a medication that decreases cravings for opioids.

The result was a program that John Greene said changed his life.

Greene, 57, used to live in the woods down the street from Family & Children’s Counseling Services in Cortland, New York. He cycled through jails and hospitals, overdosing half a dozen times and trying rehab just as many.

But now he has four months of recovery under his belt — the longest stint since he started regularly using drugs at 14.

A man with a bushy gray beard in a jacked and cap stands outside a building and smokes a cigarette while looking at the camera. — Greene is four months into recovery and he credits a new program that Family & Children’s Counseling Services started with opioid settlement money. (Celia Talbot Tobin for KFF Health News)

He said it’s because the counseling center’s new program — funded by a mix of state and local opioid settlement dollars — has a different approach. Counselors aren’t didactic and judgmental. They don’t force him to stop smoking marijuana. Several staff members have experienced addiction themselves. They drive Greene, who doesn’t have a car, to doctor appointments and the pharmacy for his buprenorphine prescription.

Now Greene lives and works with his brother, looks forward to weekly counseling sessions, and is notching small victories — such as buying his nephew toy cars as a stocking stuffer.

“It made me feel good to do something for somebody and not expect nothing back,” Greene said.

Emily Georgia, one of Greene’s counselors, said the center has worked with nearly 200 people like him in the past year. Without the settlements, “the program probably wouldn’t exist,” she said.

A smiling man with a bushy gray beard stands, leaning against a desk, while a woman sit in a desk chair behind him with her legs crossed. — Emily Georgia, one of Greene’s counselors, said the center has worked with nearly 200 people like him in the past year. (Celia Talbot Tobin for KFF Health News)

Across the country, the money supports other innovative treatment approaches:

$21 million for a new program in Kentucky that diverts people with mental illness or addiction who face low-level charges away from incarceration and into treatment, education, and workforce training
More than $3 million for, in part, three new mobile methadone programs in Massachusetts, to bring the medication to rural and underserved areas
Tens of thousands of dollars each in Iowa and Pennsylvania to cover out-of-pocket treatment costs for people without insurance or those with high deductibles

Philip Rutherford, an expert on substance use disorder at the National Council for Mental Wellbeing, said these efforts “are really positive” and many have been “historically difficult or impossible to achieve with federal or state funding.”

But some funds are also flowing to treatment approaches that defy best practices, such as denying people medications for opioid use disorder.

Some in the recovery community consider methadone and buprenorphine a crutch. But study after study show that the medications help people stay in treatment and reduce the risk of overdose and death. Research even suggests that treatment without these medications can be more harmful than no treatment at all.

Although not everyone will want medication, settlement funds shouldn’t “prop up a system that doesn’t allow people to have that choice,” said Regina LaBelle, a professor of addiction policy at Georgetown University.

Babies, Forgotten Victims of the Epidemic

While treatment received a windfall in early opioid settlement spending, another aspect of the crisis was neglected: neonatal abstinence syndrome, a condition in which babies exposed to drugs in the womb experience withdrawal.

Nationwide, more than 59 newborns a day are diagnosed with it. Yet only about $8.4 million in settlement money was committed to the issue — less than 0.5% of all funds publicly reported as spent or committed in 2022 and 2023.

Experts in public health and addiction, as well as affected families, say it’s due to stigma.

“A mom using drugs and being a parent is a very uncomfortable reality to face,” said Ashley Grant, a 38-year-old mother of three in Mesa, Arizona. “It’s easier to just push it under the rug or let them fall through the cracks, as sad as that is.”

It almost happened to her.

Grant learned she was pregnant with her third child last year. At the time, her partner was in jail and she was using drugs after an eight-year period of recovery, was estranged from her family, and didn’t know how she’d survive the next nine months.

During a visit to a methadone clinic, she saw a booth about Jacob’s Hope, a specialty nursery that cares for substance-exposed newborns and their moms. Nursery staff connected her with a therapist, helped her enroll in parenting classes, and dropped off diapers and a playpen at her home.

A close-up image of a nurse holding a stethoscope to baby's chest. The unidentifiable baby is wrapped in a pink cloth with a pattern of Santa, reindeer, trees, and snowflakes. — Registered nurse Ashley Beikmann checks over an infant who recently arrived at Jacob’s Hope, a specialty nursery in Mesa, Arizona, that helps care for substance-exposed newborns and their parents.(Ash Ponders for KFF Health News)

After delivering at the hospital, Grant and her baby boy stayed at Jacob’s Hope for about a week. Nurses showed her how skin-to-skin contact calmed his withdrawal symptoms and more frequent feedings and burpings decreased gastrointestinal discomfort, which is common among substance-exposed newborns.

Today, Grant has roughly five months of recovery. She got certified as a peer recovery specialist and hopes to join Jacob’s Hope one day to help moms like her.

But the nursery’s future is uncertain.

After opening in 2019, Jacob’s Hope nearly shut down this summer due to low reimbursements and delayed payments from insurers, said Lyndsey Steele, its associate director. Community donations kept the nursery afloat, but “it’s still hanging on by a thread,” she said.

She’s hoping opioid settlement money can help.

Two women stand in front of a large flowering bush with their hands clasped. One wears a pink shirt that reads "Jacob's Hope" and the other wears a dark gray sweater. — Jo Jones (left) is the founder of Jacob’s Hope and Lyndsey Steele (right) is the nursery’s associate director. (Ash Ponders for KFF Health News)

In 2022, Jacob’s Hope received about $250,000 from Arizona’s opioid settlements. But this year, the legislature captured the state’s share of remaining funds and, in a controversial move, gave it to the Department of Corrections.

Jacob’s Hope has now turned to local governments, which control their own settlement dollars. Its home city of Mesa said a first round of grant applications should open in the spring.

Steele prays it won’t be too late for babies in need — the epidemic’s “forgotten victims,” she called them.

A view of a room through the window in the door with a bed, armchair and changing table. A woman sits on the bed and looks down at the infant in her arms. — A certified nursing assistant comforts an infant who recently arrived at Jacob’s Hope.(Ash Ponders for KFF Health News)

Heart Disease Screening, Robot Ambulances, and More

Some opioid settlement expenditures have sparked fierce disagreement. They generally fall into three buckets: money for law enforcement, funding for youth prevention programs, and purchases unrelated to the opioid crisis.

Settlement dollars nationwide have bought body scanners, K-9 units, bulletproof vests, patrol trucks, and laptops and printers for police and sheriffs.

Some spending strayed even further from the spirit of the settlement. In Oregon City, Oregon, more than $30,000 was spent on screening first responders for heart disease. Police Chief Shaun Davis said his staff respond to opioid-related emergencies and experience trauma that increases their risk of heart attack.

But some people question if settlement funds should be footing the bill.

“This looks to me like you’re trying to defray other costs” from the police budget, said Stephen Loyd, chair of Tennessee’s Opioid Abatement Council. “I don’t think that there’s any way that this opioid money was earmarked for stuff like that.”

A second area of contention is youth prevention.

Although most people agree that stopping children from developing addictions is important, the execution is tricky.

Nearly half a million settlement dollars have gone to the Drug Abuse Resistance Education program, commonly known as D.A.R.E. Decades of research suggest its original curriculum is ineffective.

Robeson County, North Carolina, spent about $10,000 in settlement money to buy “Andy the Ambulance,” a robot ambulance with big eyes and an audio system through which a human operator can discuss the dangers of drugs. EMS Director Patrick Cummings said his team has taken the robot to churches and elementary schools.

We “don’t have any studies that show it’s working,” he said, but educating kids seems like a good investment because “if they never try it, they don’t get addicted.”

A screenshot of a Robotronics webpage for "Any the Ambulance" with a picture of the robot. The price for the robot is shown as $10,329.00 and its description reads: "Andy the Ambulance™ is a remote control ambulance. Andy is an innovative and effective way to teach hazard awareness, injury prevention, and EMS promotion. Andy is a fully animated, industrial-grade safety education robot; he moves, carries on a 2-way conversation, plays music, and activates his lights and siren, all by remote control! Andy comes equipped with a working rear door and his warning lights flash just like a real ambulance. He can wink, blink, and move his eyes, and with his smiling mouth, he presents a positive and friendly image to young and old alike." — Robeson County, North Carolina, used about $10,000 of settlement funds to buy “Andy the Ambulance,” a robot ambulance with big eyes and an audio system through which a human operator can speak. EMS Director Patrick Cummings said his team has taken it to churches and elementary schools to discuss the dangers of using drugs with kids. (KFF Health News screenshot of robotronics.com)

Then there’s the chunk of money — up to 15% of each state’s funds — that’s a free-for-all.

Flint, Michigan, spent nearly $10,000 on a sign for a community service center. The city reported that the expense did not qualify as “opioid remediation.” In other words, it’s unrelated to addressing the crisis.

But Caitie O’Neill, a city spokesperson, said that “the building sign makes it possible for residents to find” the center, which houses city services, “including Narcan kits, fentanyl testing strips, and substance abuse referrals.”

The sign above a building entrance reads "Police Community Service & Payment Center". — The city of Flint, Michigan, spent nearly $10,000 of settlement funds on a building sign. The city reported it as a non-opioid remediation expense. (Caitie O’Neill)

Jurisdictions across 29 states reported non-remediation spending in 2022 and 2023. Most opioid settlements require such reports but operate on an honor system. No one is checking if the other 21 states and Washington, D.C., were truthful.

Jackie Lewis, an Ohio mother whose 34-year-old son, Shaun, died of an overdose in October 2022, finds that hard to stomach.

“This is blood money,” she said. Some people have “lost sight of that.”

Lewis is raising Shaun’s daughter, ensuring the 9-year-old receives counseling at school and can attend the hip-hop music classes she enjoys — all on Lewis’ Social Security payments. This year they moved to a smaller town with lower costs.

As settlement funds continue flowing, she wants officials in charge of the money to help families like hers.

“We still exist and we’re still struggling,” she said.

A woman stands outside with her arms around her granddaughter and looks at the camera. The girl's face is turned away from the camera. — Jackie Lewis lost her 34-year old son, Shaun, in October 2022 to an opioid overdose. She is raising Shaun’s daughter, now 9 years old, on her Social Security payments. Lewis wants officials in charge of settlement funds to help families like hers. “We still exist and we’re still struggling,” she says. (Maddie McGarvey for KFF Health News)

KFF Health News’ Henry Larweh and Megan Kalata, Johns Hopkins Bloomberg School of Public Health’s Sara Whaley and Vivian Flanagan, and Shatterproof’s Kristen Pendergrass and Sahvanah Prescott contributed to this article.

The Johns Hopkins Bloomberg School of Public Health has taken a leading role in providing guidance to state and local governments on the use of opioid settlement funds. Faculty from the school collaborated with other experts in the field to create principles for using the money, which have been endorsed by over 60 organizations.

Shatterproof is a national nonprofit that addresses substance use disorder through distinct initiatives, including advocating for state and federal policies, ending addiction stigma, and educating communities about the treatment system.

Shatterproof is partnering with some states on projects funded by opioid settlements. KFF Health News, the Johns Hopkins Bloomberg School of Public Health, and the Shatterproof team who worked on this report are not involved in those efforts.

Trump Threat to Immigrant Health Care Tempered by Economic Hopes

LOS ANGELES — President-elect Donald Trump’s promise of mass deportations and tougher immigration restrictions is deepening mistrust of the health care system among California’s immigrants and clouding the future for providers serving the state’s most impoverished residents.

At the same time, immigrants living illegally in Southern California told KFF Health News they thought the economy would improve and their incomes might increase under Trump, and for some that outweighed concerns about health care.

Community health workers say fear of deportation is already affecting participation in Medi-Cal, the state’s Medicaid program for low-income residents, which was expanded in phases to all immigrants regardless of residency status over the past several years. That could undercut the state’s progress in reducing the uninsured rate, which reached a record low of 6.4% last year.

Immigrants lacking legal residency have long worried that participation in government programs could make them targets, and Trump’s election has compounded those concerns, community advocates say.

The incoming Trump administration is also expected to target Medicaid with funding cuts and enrollment restrictions, which activists worry could threaten the Medi-Cal expansion and kneecap efforts to extend health insurance subsidies under Covered California to all immigrants.

A photo of a pamphlet that reads, "¡No pierda su Medi-Cal!" — Clinics and community health workers encourage immigrants to enroll for health coverage through Medi-Cal and Covered California. But workers have noticed that fear of deportation has chilled participation.(Vanessa G. Sánchez/KFF Health News)

“The fear alone has so many consequences to the health of our communities,” said Mar Velez, director of policy with the Latino Coalition for a Healthy California. “This is, as they say, not their first rodeo. They understand how the system works. I think this machine is going to be, unfortunately, a lot more harmful to our communities.”

Alongside such worries, though, is a strain of optimism that Trump might be a boon to the economy, according to interviews with immigrants in Los Angeles whom health care workers were soliciting to sign up for Medi-Cal.

Selvin, 39, who, like others interviewed for this article, asked to be identified by only his first name because he’s living here without legal permission, said that even though he believes Trump dislikes people like him, he thinks the new administration could help boost his hours at the food processing facility where he works packing noodles. “I do see how he could improve the economy. From that perspective, I think it’s good that he won.”

He became eligible for Medi-Cal this year but decided not to enroll, worrying it could jeopardize his chances of changing his immigration status.

“I’ve thought about it,” Selvin said, but “I feel like it could end up hurting me. I won’t deny that, obviously, I’d like to benefit — get my teeth fixed, a physical checkup.” But fear holds him back, he said, and he hasn’t seen a doctor in nine years.

It’s not Trump’s mass deportation plan in particular that’s scaring him off, though. “If I’m not committing any crimes or getting a DUI, I think I won’t get deported,” Selvin said.

Petrona, 55, came from El Salvador seeking asylum and enrolled in Medi-Cal last year.

She said that if her health insurance benefits were cut, she wouldn’t be able to afford her visits to the dentist.

A street food vendor, she hears often about Trump’s deportation plan, but she said it will be the criminals the new president pushes out. “I’ve heard people say he’s going to get rid of everyone who’s stealing.”

Although she’s afraid she could be deported, she’s also hopeful about Trump. “He says he’s going to give a lot of work to Hispanics because Latinos are the ones who work the hardest,” she said. “That’s good, more work for us, the ones who came here to work.”

Newly elected Republican Assembly member Jeff Gonzalez, who flipped a seat long held by Democrats in the Latino-heavy desert region in the southeastern part of the state, said his constituents were anxious to see a new economic direction.

“They’re just really kind of fed up with the status quo in California,” Gonzalez said. “People on the ground are saying, ‘I’m hopeful,’ because now we have a different perspective. We have a businessperson who is looking at the very things that we are looking at, which is the price of eggs, the price of gas, the safety.”

Gonzalez said he’s not going to comment about potential Medicaid cuts, because Trump has not made any official announcement. Unlike most in his party, Gonzalez said he supports the extension of health care services to all residents regardless of immigration status.

A photo of Yanet Martinez standing outside across the street from a beauty salon. — Since Election Day, community health worker Yanet Martinez says, people are more reluctant to hear her pitch for subsidized health insurance or cancer prevention screenings. “They think I’m going to share their information to deport them,” she says.(Vanessa G. Sánchez/KFF Health News)

Health care providers said they are facing a twin challenge of hesitancy among those they are supposed to serve and the threat of major cuts to Medicaid, the federal program that provides over 60% of the funding for Medi-Cal.

Health providers and policy researchers say a loss in federal contributions could lead the state to roll back or downsize some programs, including the expansion to cover those without legal authorization.

California and Oregon are the only states that offer comprehensive health insurance to all income-eligible immigrants regardless of status. About 1.5 million people without authorization have enrolled in California, at a cost of over $6 billion a year to state taxpayers.

“Everyone wants to put these types of services on the chopping block, which is really unfair,” said state Sen. Lena Gonzalez, a Democrat and chair of the California Latino Legislative Caucus. “We will do everything we can to ensure that we prioritize this.”

Sen. Gonzalez said it will be challenging to expand programs such as Covered California, the state’s health insurance marketplace, for which immigrants lacking permanent legal status are not eligible. A big concern for immigrants and their advocates is that Trump could reinstate changes to the public charge policy, which can deny green cards or visas based on the use of government benefits.

“President Trump’s mass deportation plan will end the financial drain posed by illegal immigrants on our healthcare system, and ensure that our country can care for American citizens who rely on Medicaid, Medicare, and Social Security,” Trump spokesperson Karoline Leavitt said in a statement to KFF Health News.

During his first term, in 2019, Trump broadened the policy to include the use of Medicaid, as well as housing and nutrition subsidies. The Biden administration rescinded the change in 2021.

KFF, a health information nonprofit that includes KFF Health News, the publisher of California Healthline, found immigrants use less health care than people born in the United States. And about 1 in 4 likely undocumented immigrant adults said they have avoided applying for assistance with health care, food, and housing because of immigration-related fears, according to a 2023 survey.

Another uncertainty is the fate of the Affordable Care Act, which was opened in November to immigrants who were brought to the U.S. as children and are protected by the Deferred Action Childhood Arrivals program. If DACA eligibility for the act’s plans, or even the act itself, were to be reversed under Trump, that would leave roughly 40,000 California DACA recipients, and about 100,000 nationwide, without access to subsidized health insurance.

On Dec. 9, a federal court in North Dakota issued an order blocking DACA recipients from accessing Affordable Care Act health plans in 19 states that had challenged the Biden administration’s rule.

Clinics and community health workers are encouraging people to continue enrolling in health benefits. But amid the push to spread the message, the chilling effects are already apparent up and down the state.

“¿Ya tiene Medi-Cal?” community health worker Yanet Martinez said, asking residents whether they had Medi-Cal as she walked down Pico Boulevard recently in a Los Angeles neighborhood with many Salvadorans.

“¡Nosotros podemos ayudarle a solicitar Medi-Cal! ¡Todo gratuito!” she shouted, offering help to sign up, free of charge.

“Gracias, pero no,” said one young woman, responding with a no thanks. She shrugged her shoulders and averted her eyes under a cap that covered her from the late-morning sun.

Since Election Day, Martinez said, people have been more reluctant to hear her pitch for subsidized health insurance or cancer prevention screenings.

“They think I’m going to share their information to deport them,” she said. “They don’t want anything to do with it.”

A photo of Yanet Martinez speaking to a woman on the street. — Community health workers such as Yanet Martinez encourage people to enroll for health benefits. But many California immigrants fear that using subsidized services could hurt their chances of obtaining legal residency.(Vanessa G. Sánchez/KFF Health News)

Helicopters Rescued Patients in ‘Apocalyptic’ Flood. Other Hospitals Are at Risk, Too.

ERWIN, Tenn. — April Boyd texted her husband before she boarded the helicopter.

“So, I don’t want to be dramatic,” she wrote on Sept. 27, “but we are gonna fly and rescue patients from the rooftop of Unicoi hospital.”

Earlier that day, Hurricane Helene roared into the Southern Appalachian Mountains after moving north through Florida and Georgia. The storm prompted a deadly flash flood that tore through Unicoi County in eastern Tennessee, trapping dozens of people on the rooftop of the county hospital.

The fast-moving floodwaters had made earlier rescue attempts by ambulance and boat impossible. Trees, trailers, buildings, caskets, and cars swept past the hospital in murky, brown rapids that overwhelmed the one-story structure with 12 feet of water on all sides.

A photo of brown flood waters swallowing up ambulances. — Hospital staffers and emergency responders tried to evacuate patients first by ambulance and then by boat when the Nolichucky River overwhelmed Unicoi County Hospital during Hurricane Helene. Eventually, everyone was evacuated by helicopter.(Ballad Health)

Hurricane Helene prompted a deadly flash flood that tore through Unicoi County in eastern Tennessee. (Ballad Health)

No one knew how long the hospital’s frame would hold or if the rising water would breach the top of the 20-foot-tall building. Little more than a mile downstream, six people at a plastics plant in Erwin’s industrial park died in the flood.

“I do not feel good about this,” Boyd, a flight nurse for Ballad Health, texted her husband at 1:41 p.m., just before takeoff.

She wrote that she loved him. “If anything goes wrong,” she wanted him to tell her daughters “how much I love them,” too.

Her fears were well-founded.

In 2018, Unicoi County Hospital relocated from higher ground in the heart of Erwin to the southern edge of town, between Interstate 26 and the Nolichucky River. The new hospital was built in a known flood plain, but the facility wasn’t designed to accommodate helicopter landings on its roof. Boyd and her team weren’t sure the roof could bear the weight of their 7,200-pound Eurocopter in good weather, let alone during a flash flood.

“I had a horrible feeling about it,” she said.

By many accounts, the evacuation of 70 people, including 11 patients, by helicopter that day was a stunning success. The hospital was destroyed, but no one died. No one was even physically injured by the ordeal.

Yet, earth scientists, emergency management officials, and others who spoke to KFF Health News describe the narrow escape from Unicoi County Hospital as a cautionary tale. As climate change forces health care leaders and public officials to prepare for severe storms in landlocked parts of the country — where residents haven’t historically paid much attention to hurricane warnings — they must be strategic about both the infrastructure design and the locations selected for new projects, like hospitals.

The Biden administration finalized a rule this year designed to make the construction of such projects that receive funding from the Federal Emergency Management Agency more resilient to flooding. But a review by KFF Health News identified about 20 other Tennessee hospitals already built in, or near, flood plains.

Patrick Sheehan, director of the Tennessee Emergency Management Agency, said past weather patterns can lull people into a false sense of security. But, he added, “past is not always prologue. We’re going to experience novel, new ways of having disasters.”

Historically, the Southern Appalachian Mountains have been the place “where hurricanes go to die,” said Ryan Thigpen, an earth and environmental sciences professor at the University of Kentucky whose research focuses on flooding in the region. But as the Gulf of Mexico becomes warmer and storms, like Helene, that move northward into the mountains carry more moisture, weather events will become more severe.

“It’s apocalyptic,” said Thigpen, of the damage in Erwin. “The next storm may come before they are finished recovering from this. And that’s kind of scary.”

A photo of a hospital's front lobby in ruins. — The front lobby of the hospital after a flash flood during Hurricane Helene destroyed the building.(Maddy Alewine for KFF Health News)

Hospitals in Flood Plains

All week, Michelle Matson had been worried about Unicoi County Hospital in the oncoming storm.

As a district coordinator for the Tennessee Emergency Management Agency, Matson works with local officials to plan for worst-case scenarios.

Leading up to Hurricane Helene, she’d been in regular communication with the county’s emergency management director. The hospital’s vulnerability next to the river kept coming up.

“That was the only place we were worried about,” Matson said.

But concern over the hospital’s location wasn’t new.

In November 2013, Unicoi County Memorial Hospital, which opened in 1953, was acquired by Mountain States Health Alliance on the condition that Mountain States would construct a hospital in Erwin to replace the old one.

Two years later, Mountain States purchased a 45-acre tract of land next to a bend in the Nolichucky River, just off Interstate 26. A hospital system press release at the time explained that due diligence had been conducted to ensure, among other things, that the hospital building would not be in a flood plain. It also presented the location as desirable because it was near the interstate and the landscape would provide “a healing environment by taking advantage of the natural beauty of Unicoi County, with the river running along the east side of the property.”

Dating back decades, though, flood maps published by FEMA put the entire property in a flood plain. The building itself was in a 500-year flood plain (meaning a 0.2% chance of flooding in any given year), while the only road on and off the property was in a 100-year flood plain (meaning a 1% annual risk).

An aerial photo of the Nolichucky River. Unicoi County Hospital is visible in the near distance. — The Nolichucky River, which flows north through Erwin, Tennessee, was transformed into a deadly flash flood when rainfall from higher mountain altitudes drained into the river. The turbulent waters cut a path of destruction through Erwin that killed eight people.(Maddy Alewine for KFF Health News)

But it wasn’t only FEMA maps that forecast this possibility. In 2001, a report published by Unicoi County marked this land as being in a “flood hazard” area. The report warned of “considerable pressure” to develop flood hazard areas across the county “due to population increase and the need for vacant land.”

The same report acknowledged a history of destructive flooding in the county and the risks it faced being situated along “three major streams,” including the Nolichucky River, which flows northward out of the Blue Ridge Mountains of western North Carolina straight through Erwin.

“If you start looking at the river’s history, there are a number of these notable flood events, and quite a few in the 20th century. They just did not reach this magnitude,” said Philip Prince, a geologist with Appalachian Landslide Consultants. His YouTube videos about mountain flooding during Helene have been viewed hundreds of thousands of times. “People should have been expecting more than they did. But again, we have not seen anything like this.”

Matthew Rice, a former Unicoi County commissioner, served as chair of the Hospital Visioning Committee for the new hospital in 2015. He said some committee members raised questions during the planning process about the location, but he conceded there weren’t many large, flat places to build a hospital in Erwin.

Amid a wave of rural hospital closures across the United States, Erwin residents celebrated when the new hospital opened in 2018. One lawmaker told the Johnson City Press it was “the most modern facility on the planet.”

Alan Levine was CEO of Mountain States Health Alliance during that time and later became the head of Ballad Health, when Mountain States merged with a competing hospital system in 2018 to form the largest state-sanctioned hospital monopoly in the country.

Levine said Mountain States was aware the property carried flood risk but noted that the hospital system added levees to protect the building from river flooding at the recommendation of outside consultants. One levee already existed along the river’s edge. And the hospital itself was deliberately constructed on a high point of the land, at the same elevation as the interstate, Levine said.

“I feel like everything we did when we built it was done the right way,” said Levine, a former health care leader in Louisiana and Florida.

Unicoi County Hospital in Erwin, Tennessee. (Maddy Alewine for KFF Health News)

A photo of a car submerged in a deep mound of dirt. — More than two months after Hurricane Helene, the recovery continues. (Maddy Alewine for KFF Health News)

Even so, Matson, who lives in Kingsport, about 45 minutes northwest of Erwin, said some residents were quietly critical of the new hospital’s location.

“We all thought that it was a stupid idea to build a hospital in a flood plain. It’s like, who does that?” Matson said. She said her opinion doesn’t represent an official position of the Tennessee Emergency Management Agency.

But Unicoi isn’t the only Tennessee hospital built in a flood plain. Eight others across the state were built in moderate- or high-risk flood zones, and a dozen other hospitals are situated just outside them, KFF Health News found.

The hospitals at risk span the length of the state, from Memphis on the western edge to Knoxville in the east, and include big-city general hospitals, smaller rural hospitals, and behavioral health facilities.

Some of the hospitals are decades old. Parkridge East Hospital in Chattanooga, for example, was built in the 1970s inside a high-risk flood zone. Others are more recent — like Creekside Behavioral Health in Kingsport. That building, which opened in 2018, straddles high- and moderate-risk flood zones.

Then there are facilities like Pinewood Springs in Columbia. The 60-bed mental health facility, which opened in 2020, is in a low-risk area, but the main road leading in and out of the hospital lies in a high-risk flood area.

To identify these hospitals, KFF Health News looked for licensed facilities in or near areas that, according to FEMA, have either a high flood risk (with a 1-in-100 chance of flooding in any given year) or moderate risk (a 1-in-500 chance in any given year).

But FEMA’s maps likely underestimate the true flood risk, researchers and government watchdogs agree, because they’re largely outdated and don’t account for current or future conditions, including more frequent and more intense storms and flooding associated with climate change.

Those maps are updated on an ongoing but slow and piecemeal basis. Meanwhile, the federal regulation finalized this year to expand areas considered at risk for current and future flooding also sets more stringent building standards for critical infrastructure projects located in 100-year flood plains and funded by federal taxpayers.

The rule became effective on Sept. 9, less than three weeks before Hurricane Helene ravaged the Southern Appalachians, but it is unclear whether the incoming Trump administration will preserve it.

After he took office in 2017, President Donald Trump revoked federal flood protection standards set up under the Obama administration. Karoline Leavitt, a spokesperson for the incoming Trump administration, did not respond to emailed questions for this article.

An ‘Antiquated and Broken’ System

On Sept. 24, three days before the hospital evacuation, the National Hurricane Center issued the first of several warnings predicting significant river flooding and landslides in the Southern Appalachians. Two days before the flood in Erwin, a satellite office of the National Weather Service in Morristown, Tennessee, predicted “life-threatening flash flooding” near the Tennessee-North Carolina state line.

The warnings kept coming. The National Weather Service in upstate South Carolina forecast on Sept. 26, a Thursday, that Helene would amount to one of the region’s most significant weather events “in the modern era.”

“I don’t think people knew what that meant,” said Prince, the geologist. “We just didn’t have a precedent.”

A photo of an interior in Unicoi County Hospital. A sofa lies crushed under rubble. — (Maddy Alewine for KFF Health News)

A photo of medical equipment in an interior room of Unicoi County Hospital. — (Maddy Alewine for KFF Health News)

A photo of destruction and rubble inside of Unicoi County Hospital. — (Maddy Alewine for KFF Health News)

Ballad Health didn’t anticipate that Unicoi would flood during the storm, Levine said, even though a hazard vulnerability assessment conducted annually for the hospital identifies external flooding as the second-highest risk facing Unicoi County Hospital, behind only a civil disturbance. The same 2024 assessment rated the hospital’s preparedness for a flood as a “3” or “low,” the worst possible score.

But a document outlining the hospital’s emergency alert procedures makes no mention of flood risk. If anything, hospital leaders said they were anticipating a surge of patients during Hurricane Helene if Erwin and the surrounding area experienced widespread power outages.

“There was no conversation I had with anybody, anywhere about the risk of flooding before Friday morning,” Levine said.

The day before, Jennifer Harrah, the hospital’s administrator, had called a meeting to discuss the storm. Sean Ochsenbein, an emergency medicine physician and the hospital’s chief medical officer, recalled that the group gathered “just to kind of circle the wagons, make sure everybody was on the same page.”

Later that day, Harrah spoke to Unicoi County’s emergency management director. But “let me be very clear,” Ochsenbein said. “Nobody gave us — as Ballad or our hospital — any kind of indication that we would have floodwaters.”

And yet little more than 24 hours after their planning meeting, both Harrah and Ochsenbein were stranded on the hospital roof, literally praying to God for their rescue.

“I called my husband, and I called my sons,” Harrah said. “I told them that I loved them.”

An aerial view of Unicoi County Hospital's rooftop. — Dozens of hospital patients, staffers, and first responders were rescued by helicopter after floodwaters from the nearby river overwhelmed the building.(Maddy Alewine for KFF Health News)

One reason the impact of the storm seemed to catch people off guard was a disconnect between the strong warnings issued by the federal agencies and the low expectations that many people in the region, including Ballad Health leaders, had of the potential flood risk.

It was sunny outside when people were evacuated from the hospital roof, Thigpen pointed out. It had rained about 5 inches in Erwin over several days, but that was nothing compared with places in the North Carolina mountains that received more than 20 inches over the same period. Rainfall at those higher altitudes eventually drained into the rivers and streams that ultimately destroyed places like Erwin.

But residents in Unicoi County had no clue what was coming their way, Thigpen said, because there weren’t river gauges upstream to sound alarms about dangerous water levels.

“I think that our warning systems are antiquated and broken,” he said. “These people in Erwin have seen floods — and a lot of big floods — and it’s never been anywhere close to this.”

Tennessee state climatologist Andrew Joyner is one of several experts now calling for more river gauges to monitor water levels and a network of weather stations in every county designed to collect live precipitation data.

Thirty-eight states already operate similar systems, he said, estimating that setting up and staffing weather stations across Tennessee would cost less than $4 million in the first year.

But the state has failed to act before. Following a catastrophic flood in Waverly, Tennessee, that killed 20 people and destroyed hundreds of homes and businesses in 2021, the Tennessee General Assembly denied a $200 million request to relocate 14 public schools across the state that had been deemed vulnerable to future flooding.

‘Might Not Make It Back’

On the morning of the flood, Matson had stood with the county’s emergency management director behind Unicoi County Hospital and watched the rising river. “We both had this, like, sick feeling in our stomach that said we’ve got to evacuate,” she remembered. “I said to him, worse comes to worst, we evacuate, nothing happens. Just blame it on me.”

They made the call to start moving patients out of the hospital just before 9:45 a.m. Less than 30 minutes later, the river had breached its banks, cutting a new channel in front of the hospital and eliminating access to the only road on or off the property.

When an ambulance evacuation became untenable, the Tennessee Emergency Management Agency called in swift-water teams, specially designed to rescue people in turbulent waters. But the flash flood had become so violent and the river was so full of debris that the boats couldn’t safely carry patients away. Meanwhile, dangerous wind conditions prevented helicopters located to the east or west from immediately flying that morning to rescue everyone by air.

“To be honest, I really thought we may not make it back” from the rescue mission, Boyd, the flight nurse, said.

When the wind started to die down that afternoon, Virginia State Police deployed two helicopters to rescue patients. Eventually, three Black Hawk helicopters from the Tennessee National Guard assisted in the effort. Pilots were required to make multiple round trips between the hospital and the local high school to evacuate four or five people at a time who had been stranded by the flood. Some patients stranded in boats near the hospital were hoisted into helicopters, while those who were stranded on the roof were either carried onto the aircraft or climbed aboard while the helicopters lightly touched down on their skids.

As the afternoon wore on and the evacuation was nearing its completion, pilot Jeff Bush with the Virginia State Police said he learned that the hospital building was weakening. They weren’t sure how much longer it would hold.

“It was intense,” he said. “The fact that the building is still standing is, I think, kind of amazing.”

A photo of the front entrance of Unicoi County Hospital. The hospital's sign is torn off and the windows are boarded up. — Ballad Health, which owns the hospital, hasn’t announced when or where it will be rebuilt.(Maddy Alewine for KFF Health News)

Ballad Health evacuated two other hospitals and one nursing home by ambulance within 24 hours of the flood in Erwin, but none of those sustained damage. Meanwhile, what’s left of Unicoi County Hospital stands next to the Nolichucky in a field of mud and displaced river rocks.

For now, Ballad Health has opened a temporary urgent care center and plans to establish an emergency department at the site of the former Unicoi County Memorial Hospital in downtown Erwin.

Levine said Ballad Health will eventually rebuild a full-service hospital, but he estimated the project would cost $50 million, roughly twice as much as it did in 2018. It remains unclear where it would be built.

Probably not in a flood plain, Levine said. “I would avoid it if I could.”

California’s ‘Care Courts’ Are Falling Short

California’s controversial experiment to order mental illness and drug treatment for some of its sickest residents is rolling out statewide, but the latest data shows the new initiative is falling far short of early objectives.

The Community Assistance, Recovery and Empowerment Act — known as Care — recently expanded from 11 pilot counties to all 58, and is one of the many ways state and local governments across the nation are trying to grapple with a metastasizing crisis of severe mental illness and substance use.

“There are a lot of people who have had untreated illness for so long, and they’ve cycled out of incarceration and homelessness and hospital emergency departments,” Hannah Wesolowski, chief advocacy officer for the National Alliance on Mental Illness, told me.

First-responders, families and local health officials can all file petitions requesting help for people who are ill.

California’s program empowers civil court judges to order adults into monitored plans that can include housing, social services and treatment for addiction or severe mental illness. Gov. Gavin Newsom, who signed the law in 2022, has called the program a “paradigm shift” that prioritizes Californians who are the most ill and in need. The Democratic governor initially said his administration would serve 2,000 people by the end of 2024.

From its launch at the beginning of October 2023 through the end of September this year, however, only 787 Care petitions were filed, according to the Judicial Council of California. Of those, 150 people were placed in court-approved treatment, with hundreds more pending.

As of the end of June, an additional 362 people had been “diverted” from the Care Court process and provided other services, according to the California Department of Health Care Services.

State officials have said between 7,000 and 12,000 people will ultimately be eligible for Care in a state of more than 39 million residents.

Corrin Buchanan, a deputy secretary for the California Health and Human Services Agency, said she is confident the state can still meet its treatment goal by the end of the year.

Governors in New York and Wisconsin have focused state resources on building community mental health care networks, Wesolowski said, while states such as Oregon and Washington have plowed resources into mental crisis emergency hotlines and mobile response teams.

Although treatment courts are common in other states, Wesolowksi said, California is the first to provide more comprehensive services — known as “wraparound” services, including housing and food support — rather than just prescriptions for medication. But the program is among the most restrictive, applying only to those diagnosed with untreated schizophrenia or a related psychotic disorder.

Such a narrow scope has led to disappointment among family members who have learned that few people qualify for the program, county representatives in California say.

Reaching those who do qualify can take time and treatment is largely voluntary.

Amber Irvine, program manager for San Diego County’s Care Court, said it takes workers there an average of 54 days of casual conversations, which the state doesn’t typically reimburse for, to persuade someone to accept help.

“We need to, as a whole, adjust our expectations of what can be accomplished in a year with such a complicated program and such a complex population,” Irvine said.

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 [email protected].

Removing a Splinter? Treating a Wart? If a Doctor Does It, It Can Be Billed as Surgery

When George Lai of Portland, Oregon, took his toddler son to a pediatrician last summer for a checkup, the doctor noticed a little splinter in the child’s palm. “He must have gotten it between the front door and the car,” Lai later recalled, and the child wasn’t complaining. The doctor grabbed a pair of forceps — aka tweezers — and pulled out the splinter in “a second,” Lai said. That brief tug was transformed into a surgical billing code: Current Procedural Terminology (CPT) code 10120, “incision and removal of a foreign body, subcutaneous” — at a cost of $414.

“This was ridiculous,” Lai said. “There was no scalpel.” He was so angry that he went back to the office to speak with the manager, who told him the coding was correct because tweezers could make an incision to open the skin.

When Helene Schilders of Seattle went to her dermatologist for her annual skin check this year, she mentioned her clothing was irritating a skin tag she had. The doctor froze the tag with liquid nitrogen. “It was squirt, squirt. That’s it,” Schilders told me. She was “floored” by an explanation of benefits that said the simple treatment had been billed as $469 for surgery.

Assuming the bill was a mistake, she called the doctor’s office and was told that surgery had indeed occurred — because the skin was broken in the process. Hence surgical CPT code 17110, “destruction of 1-14 benign lesions.”

Schilders complained to her insurer, who provided a document informing her that “surgery is classified as something entering the body, such as a Q-tip entering the ear canal or a scalpel during surgery.”

Huh? “I have had surgery, and this is not it,” Schilders said.

In common vernacular, “surgery” evokes images of physicians and nurses leaning over an operating table, gowned and masked, as they address a problem deep in the body. Removing an appendix or a tumor. Replacing a knee. Clipping a leaking aneurysm in the brain. It most probably involves a scalpel or specialized instruments and surgical skill.

More and more minor interventions, however, have been rebranded and billed as surgery, for profit. These tiny interventions don’t yield huge bills — in the hundreds rather than the thousands of dollars — but, cumulatively, they likely add up to tens if not hundreds of millions of dollars for doctors and hospitals annually. The surprise bills often catch patients off guard. And they must pay up if they haven’t met their insurance deductible. Even if they have, “surgery” generally requires a coinsurance payment, while an office visit doesn’t.

“There’s more pressure to make money, and the idea is you can charge more if it’s a surgical procedure,” said Sabrina Corlette, founder and co-director of Georgetown University’s Center on Health Insurance Reforms. “The payer should be reviewing this and saying this is run-of-the-mill. But there’s not a lot of incentive to do that.”

Corlette surmised that the codes employed in the instances mentioned above were intended for rare, complicated cases in which the removal of a splinter or a skin lesion — or 14 of them — required special skills or time. But the codes’ use has ballooned, covering the complicated and the commonplace. The use of code 17110 billed from doctors’ offices has gone up 62% from 2013 (1,739,708) to 2022 (2,817,190).

The blizzard of surgeries-in-name-only is a symptom of a system that has long valued procedures far more than intellectual work in its payments to medical providers. That merits rethinking, and there are some hints that the incoming presidential administration might be interested in doing so.

The current payment calculation system has its origins in the late 1980s, when a team led by an economist at Harvard University’s public health school, William Hsiao, created what’s called the Resource Based Relative Value Scale, or RBRVS, to rationalize Medicare’s payments to doctors. It allocated reimbursement using a formula that included physician work, practice expenses, and malpractice expenses. It concluded “that the work per unit time (a measure of intensity) for invasive services is about three times that of evaluation/management.”

In other words, it enshrined the notion that “invasive services” — procedures or surgery — were by far the most valuable.

An American Medical Association committee that includes physicians from an array of specialties periodically suggests updates to those codes (and federal regulators accept them, in many years, over 90% of the time). Since surgeons are overrepresented on the committee, the valuation of anything defined as an operation has only increased, giving billers the incentive to classify even the most mundane interventions as surgery.

Experts of all political stripes have spent years critiquing the process — it’s common sense that the fox (physicians) should not be guarding the henhouse (payments). President-elect Donald Trump’s pick for Health and Human Services secretary, Robert F. Kennedy Jr., has signaled that he might rethink that approach, according to the health-industry publication Stat. Kennedy has not outlined an actual plan to replace the current process, but he is reportedly exploring if the Centers for Medicare & Medicaid Services, a government agency, could do it instead.

Absent reform, on it goes.

Anthony Norton of Puyallup, Washington, took his 3-year-old daughter to a doctor this year because she had a bothersome plantar wart on her foot. The doctor applied a chemical ointment to the wart in the office every two weeks and covered it with a Band-Aid. When the child arrived for a third visit, Norton was informed he had an outstanding balance of $465 (in addition to the $25 office visit copay already paid) because the application was “surgery.” CPT code 17110 again.

“It made no sense,” Norton later recalled. The billing office assured him it was surgery, he said, “because the ointment penetrates the skin.”

Norton wondered: “When you extrapolate that, is putting on Neosporin or calamine surgery, too?”

We are now in an era in which a neurologist spending 40 minutes with a patient to tease out a diagnosis can be paid less for that time than a dermatologist spending a few seconds squirting a dollop of liquid nitrogen onto the skin.

Lai was so angry at being charged more than $400 to pull that splinter out of his child’s hand that he went on a crusade, returning to the dermatologist’s office when his calls were ignored, accusing it of fraud and threatening to complain to his insurer. Only then, he said, did the doctor’s office waive the surgical charge — and kick him and his family out of the practice.

Más californianos están muriendo por el frío. Gran parte son personas mayores sin techo

SACRAMENTO, California — Un número creciente de personas —muchas de ellas mayores y sin hogar— están muriendo de frío durante el invierno.

La hipotermia causada por la exposición a bajas temperaturas fue la causa principal, o que contribuyó, a la muerte de 166 californianos el año pasado, más del doble que hace una década, según datos provisionales de certificados de defunción del Centro para el Control y Prevención de Enfermedades (CDC).

La tasa ajustada por edad de 3.7 muertes por millón de residentes en 2023 fue la más alta en el estado en al menos 25 años.

Las muertes por hipotermia también han aumentado a nivel nacional: cerca de 2,520 estadounidenses fallecieron el año pasado, un incremento de aproximadamente el 35% desde 2014, según datos provisionales de los CDC.

Fue aún peor en 2022 cuando hubo 3.500 muertes por hipotermia, muchas de ellas durante tormentas invernales brutales en gran parte del país en enero y diciembre.

El incremento de muertes por hipotermia está relacionado con el aumento en la falta de vivienda, especialmente en California, que tiene la población sin hogar más grande del país, dicen expertos.

Las personas sin techo son particularmente vulnerables a la hipotermia porque muchos adultos mayores y vulnerables viven en la calle, expuestos a las inclemencias del tiempo.

Los funcionarios del gobierno han respondido en gran medida a las muertes por hipotermia abriendo centros para que las personas sin hogar puedan quedarse en noches frías, pero los defensores dicen que se necesitan más viviendas permanentes y programas que prevengan la falta de hogar.

Sentado en un banco cerca del Capitolio estatal, Leon Winch dijo que tiene problemas para mantenerse abrigado a medida que se acerca el invierno. En noches frías y lluviosas, intenta encontrar lugares para estar seco, pero las áreas cubiertas a menudo son vigiladas por guardias de seguridad privados que lo sacan del lugar. La hipotermia a menudo ocurre en temperaturas frías por debajo de los 40 grados, pero también a temperaturas más cálidas, especialmente cuando llueve.

Funcionarios de la ciudad abren centros bajo ciertas condiciones, incluyendo cuando se prevé que las temperaturas nocturnas caigan por debajo de los 37 grados en dos o más días en un período de cinco días. Pero Winch dijo que no confía en la ciudad de Sacramento y no utiliza los centros de la ciudad incluso cuando las temperaturas se vuelven gélidas.

“No están haciendo nada excepto algo superficial”, dijo.

Según el Departamento de Acceso a la Atención Médica e Información de California, las personas sin hogar representaron el 18% de las hospitalizaciones y visitas a la sala de emergencias relacionadas con la hipotermia desde 2019 hasta 2023. Los californianos sin hogar representan casi el 0.5% de la población del estado, lo que sugiere que tienen unas 40 veces más probabilidades que otros de terminar en el hospital por hipotermia.

Los datos federales muestran que más de dos tercios de las 181,000 personas sin hogar del estado no tienen refugio. Y entre aquellos que mueren de hipotermia, un grupo ha sido particularmente afectado.

Los adultos mayores son los más susceptibles a la hipotermia, con personas de 55 años o más representando más de tres cuartas partes de las muertes por hipotermia en California entre 2021 y 2023, según datos de los CDC.

“Hay un aumento masivo en la población de personas mayores sin hogar”, dijo Margot Kushel, directora de la Benioff Homelessness and Housing Initiative de la Universidad de California en San Francisco. Según Kushel, la proporción de adultos solteros sin hogar mayores de 50 años en California ha aumentado del 11% en 1990 a casi el 50%.

Y a medida que ha aumentado el número de muertes por exposición al frío en el estado, también se ha elevado el número de muertes por exposición al calor en el verano. “Un clima cambiante, más extremos de temperatura, más lluvias intensas, las personas son mayores y, por lo tanto, incapaces de tolerarlo, por lo que se enferman mucho más rápido”, explicó Kushel.

La tendencia podría empeorar: se proyecta que la proporción de personas sin hogar mayores de 65 años se triplique en Estados Unidos entre 2017 y 2030, según investigadores de UCSF.

La tasa de mortalidad por hipotermia en California es más alta en sus condados rurales, montañosos y del norte, pero la mayoría de las muertes ocurren en centros urbanos.

La hipotermia fue la causa principal o contribuyente de muerte para 46 residentes del condado de Los Ángeles entre 2021 y 2023, el número más alto en el estado. Sin embargo, la tasa de mortalidad fue inferior al promedio estatal debido a la gran población del condado.

Santa Clara, San Francisco y Sacramento tuvieron las tasas más altas de muerte por hipotermia entre los condados más poblados del estado. La hipotermia fue la causa principal o contribuyente de 42 muertes en el condado de Santa Clara de 2021 a 2023, frente a 11 durante los tres años anteriores, según los CDC.

“Cada año estamos peor que el anterior”, dijo Shaunn Cartwright, defensora de las personas sin hogar en el condado de Santa Clara.

Cartwright dijo que los funcionarios locales no están proporcionando suficientes camas permanentes en los refugios para las personas sin hogar, y mucho menos suficientes camas temporales en noches frías. Es un problema que Kushel dijo es prevalente en todo el estado.

Michelle Jorden, jefa forense del condado de Santa Clara, dijo en un comunicado enviado por correo electrónico que no está segura de por qué están aumentando las muertes por hipotermia, pero está monitoreando la tendencia. Agregó que el condado ha enviado equipos de ayuda a los campamentos con suministros, ha establecido centros calefaccionados y emitido alertas de seguridad en condiciones climáticas severas.

El condado de Sacramento tuvo 34 muertes relacionadas con la hipotermia entre 2021 y 2023, frente a 20 muertes por hipotermia entre 2018 y 2020. Como en muchos lugares, Sacramento ha aplicado ordenanzas para personas sin hogar y realizado desalojos tras una decisión de la Corte Suprema de EE.UU. que otorga a las ciudades más autoridad para multar y sacar a las personas sin hogar de las calles.

Casi la mitad de los californianos sin hogar que no tienen refugio informan que las autoridades han confiscado sus pertenencias en algún momento, dijo Kushel.

Bob Erlenbusch, defensor de la Sacramento Regional Coalition to End Homelessness, dijo que muchas personas sin hogar tienen frío porque las autoridades locales han confiscado artículos como mantas, sacos de dormir y tiendas de campaña durante los desalojos.

“No se supone que se lleven las cosas de las personas”, dijo. “Se supone que deben etiquetarlas y almacenarlas, pero eso no paasa”.

Jennifer Singer, vocera de la ciudad de Sacramento, dijo que los trabajadores de la ciudad se comunican con los residentes sin hogar antes de eliminar los campamentos “para que puedan manejar sus pertenencias antes de que comience cualquier limpieza”.

Kushel dijo que la solución a largo plazo para el aumento de las muertes por hipotermia es evitar que las personas sigan quedándose sin techo y sacar de las calles a los que ya lo han perdido. Mientras tanto, agrego que las ciudades necesitan abrir más centros calefaccionados — y con aire acondicionado en verano — y asegurarse de que sean accesibles.

Phillip Reese es especialista en reportajes de datos y profesor asociado de periodismo en la Universidad Estatal de California-Sacramento.

KFF Health News’ ‘What the Health?’: A Killing Touches Off Backlash Against Health Insurers

The Host

The shooting death of UnitedHealthcare CEO Brian Thompson on the streets of New York City prompted a surprising wave of sympathy for the perpetrator, rather than the victim, from Americans who say they have been wronged by their health insurers. It remains to be seen whether backlash from the killing will result in a more serious conversation about what ails the health care system.

Meanwhile, in some of his first extended interviews since the election, President-elect Donald Trump continued to be noncommittal about his plans for health care in general and the Affordable Care Act in particular.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs Zhang of Stat, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll Call.

Among the takeaways from this week’s episode:

The killing of UnitedHealthcare’s chief executive has amplified simmering anger and distrust over the nation’s health care system. Many people are upset about the cost of care, limitations of coverage, gaps in access — and much more. While Democratic policymakers have pushed in recent years to insure as many Americans as possible, insurance coverage is only part of the equation in resolving the system’s ills.
There’s not much time left for this Congress. Still on the agenda is passing funding for some health priorities. Extending telehealth access, for instance, is a small but key issue for which lawmakers will need to find money to offset the cost of an expensive program. And cultural issues continue to play a role, with the House passing a defense spending package this week that would cut coverage for gender-affirming care for minor dependents of those in the armed forces.
And Trump’s recent interviews with NBC News’ “Meet the Press” and Time magazine offered little clarity on his health care plans. He referred to making changes to the ACA and not making changes to abortion pill availability — but it is clear that such issues are not among his top concerns and that policies will depend largely on the personnel within the health agencies.

Also this week, Rovner interviews Francis Collins, who was the director of the National Institutes of Health and a science adviser to President Joe Biden.

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

Julie Rovner: KFF’s “Medicare Spending was 27% More for People Who Disenrolled From Medicare Advantage Than for Similar People in Traditional Medicare,” by Jeannie Fuglesten Biniek, Alex Cottrill, Nolan Sroczynski, and Tricia Neuman.

Alice Miranda Ollstein: CNN’s “Most Women in the US Aren’t Accessing Family Planning Services, Even as Abortion Restrictions Grow,” by Deidre McPhillips.

Sandhya Raman: Stat’s “Spending Less, Living Longer: What the U.S. Can Learn From Portugal’s Innovative Health System,” by Usha Lee McFarling.

Rachel Cohrs Zhang: ProPublica’s “‘Eat What You Kill,’” by J. David McSwane.

Also mentioned in this week’s podcast:

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

Watch: ‘Going It Alone’ — A Conversation About Growing Old in America

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KFF Health News’ “Navigating Aging” columnist, Judith Graham, spent six months this year talking to older adults who live alone by choice or by circumstance — most commonly, a spouse’s death. They shared their hopes and fears, challenges, and strategies for aging solo.

Graham moderated a live event on Dec. 11, hosted by KFF Health News and The John A. Hartford Foundation. She invited five seniors ranging in age from 71 to 102 and from across the country — from Seattle; Chicago; Asheville, North Carolina; New York City; and rural Maine — to talk candidly about the ways they are thriving at this stage of life.

More than 16 million Americans are living alone while growing old, an unprecedented number. This slice of the older population has significant health issues: Nearly 4 in 10 people age 65 or older who live alone have vision or hearing loss, difficulty caring for themselves and living independently, problems with cognition, or other disabilities. People aging alone are also at higher risk of becoming isolated, depressed, and inactive; experiencing accidents; and neglecting to care for themselves.

A person who listened to the panel conversation observed: “I am struck by the seeming absence of fear, acceptance of the hands they have been dealt, and the lack of denial about this phase of life. Minimal time spent worrying. Full lives. Mostly comfortable with living alone. THIS dispels many myths about what living alone looks like.”

Read the stories here: https://kffhealthnews.org/news/tag/going-it-alone/

click here for the transcript

Transcript: ‘Going It Alone’ — A Conversation About Growing Old in America

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Judith Graham: Good morning, everyone. Thank you for joining us today. I’m Judy Graham, and I write the “Navigating Aging” column for Kaiser Health News, actually known as KFF Health News. I’m also the moderator for today’s event. We’re all in for treat: a conversation with five remarkable older adults about their lives and their experiences.

First, a few words of introduction. As many of you know, KFF is an independent organization that focuses on health policy research, polling, and news. It sponsors KFF Health News and partners with media organizations across the country. The Washington Post has been our partner for the series that is the subject of this webinar, “Going It Alone.” KFF Health News is committed to covering the greatest demographic trend of our time: the astonishing growth of the older population, now 60 million strong. And I’ve been privileged to be a part of that. For many years, The John A. Hartford Foundation, the co-sponsor of this event, has supported our aging coverage. I’ll let Rani Snyder, who oversees the Hartford Foundation’s grant-making to improve the care of older adults, tell you more. Rani, onto you.

Rani Snyder: Thank you so much, Judy. It’s great to be here. And thank you, especially Judy, for all of the work that you do for the “Navigating Aging” column, which is just terrific. Our foundation, The John A. Hartford Foundation, is really proud to support today’s event and KFF Health News and all that you do. I am Rani Snyder. I’m the vice president of program at The John A. Hartford Foundation. Our foundation is a nonpartisan national philanthropy with the mission to improve the care of older adults. We happen to reside in New York City, but we operate all across the country. And we work in three different areas: creating age-friendly health systems, supporting family caregivers, and improving serious illness and end-of-life care. And I really want to welcome our entire audience to today’s discussion about living alone while growing old. Our foundation invests pretty heavily in supporting family caregivers or older adults who are the backbone of care in this country.

And we also recognize, and even more so now, thanks to Judy’s excellent reporting, that millions of people don’t have a family member or a friend who are assisting them as they age and could potentially need care. So our foundation is working to make sure that all older adults, no matter where they live, no matter their background, no matter their family circumstances, have access to high-quality, age-friendly care that’s focused on what matters to all of us as we get older. So by funding programs that connect health systems, public health, and community-based services, and also by engaging when we can with policymakers and the public, our plan is to create systems of support and communities of connection that help people to age well as they’re aging alone. Speaking of aging well, right now we’re developing a new initiative to support social connection among older people, and we invite you to follow and engage with us at our website, which is johnahartford.org.

We’re really looking forward to this conversation today, actually. Our goal is not only to highlight challenges, but, honestly, to explore the resilience and the ingenuity of people who are aging solo. And that’s why I’m especially thankful to our panelists, five people who are featured in Judy’s series. We so appreciate your sharing your stories, and I would encourage everyone who is online on this webinar to engage with them and engage with Judy by asking questions and contributing to this discussion. So please carry this conversation forward to your networks and your communities. You also have the opportunity to shine a light on this topic that’s too often overlooked. So now let’s get started, and I want to hand it back to you, Judy, to introduce this fabulous panel.

Graham: Thanks so much. A little context before we get straight to it. The number of older adults living alone in the United States is truly unprecedented. In the past, there were fewer older people and they tended to live with family as they grew older. But with longer life spans, older people are outliving spouses; with increasing divorce rates, more people find themselves without partners as they age and with greater mobility. Even those with adult children find them far away and not part of their daily lives. How big is this group? We’re talking about more than 10 million older women and 6 million older men who live alone, according to the U.S. Census Bureau. Health issues are common in this group. Nearly 4 in 10 older adults who live on their own have vision or hearing problems, difficulty living independently, problems with cognition or other disabilities. Who’s around to help them or even notice when these older adults need assistance?

As Rani said, our health care system relies on spouses, partners, and adult children to be the backbone of our system of nonmedical care for seniors. What happens when there are no family members of this kind or they live at a distance? These are among the questions I’ve explored in my series “Going It Alone,” and I focused in this series on the real experts in this topic, older adults, who know better than anybody else what they live with. Today, you’ll hear from five of the older adults who appear in my series. As you can see, they live in different parts of the country, and they face different issues. We will talk for about an hour and then spend half an hour answering your questions. Please submit those via the chat function on your screen or the Q&A function. I’ll try to get to as many as I can.

This event is being recorded and will be accessible permanently afterward on YouTube, and we’ll of course link to it on the KFF Health News website. Now on to our panelists. I’ve asked them to introduce themselves before we dive into our discussion. Let’s start with Bill Hall in Seattle.

Bill, your sound is not working. Why don’t you try again and … OK, we’re going to go on to somebody else while you work with your sound. Let’s try Don Bell in Chicago.

Donald Bell: Good morning, everybody, and welcome to Chicago. My name is Donald Bell, and I am a resident of a unique senior residence, the Town Hall Apartments, which is Chicago’s first and the nation’s fourth LGBTQ+-friendly senior residence. Now, LGBTQ+-friendly does not mean LGBTQ+-exclusive. Our demographic breaks down by the following percentages: We have 30% of our neighbors are hetero-identified and 70% are LGBT-identified, but together we form one great community.

Graham: How old are you, Don? And do you live alone?

Bell: I’m 75.

Graham: OK, thank you.

Bell: Yes.

Graham: Hilda Jaffe of New York City. Why don’t you introduce yourself?

Hilda Jaffe: OK. Good morning — well, it is still morning everywhere, I guess — everyone. My name is Hilda Jaffe. I live in New York City, the crossroads of the world, and I live about one block away from Times Square, which is the crossroads of New York City. I am 102 years old, which astonishes me every day, I can tell you that. I have lived in New York City for the past 14 years. Before that, I had 60-some years in a house in New Jersey. After my husband died, I lived there for a short while and then moved into New York from an ordinary three-, four-bedroom house into a one-bedroom rental apartment in a high-rise building. I’m a widow, as I’ve mentioned. I have two children, my son in California, my daughter Tel Aviv, Israel.

I have five grandchildren and eight great-grandchildren who live in California, Philadelphia, Switzerland, and Israel. I’m in a centenarian study, and that is really an important part of what goes on in my life — to be a part of about 2,500 other people who are involved in this largest centenarian study in the world run out of New England. It’s called the New England Centenarian Study. And I do puzzles. Every day I do The New York Times crossword puzzle.

Graham: In ink, if I am correct.

Jaffe: Correct.

Graham: Ken Elliott, why don’t you go next?

Ken Elliott: OK, thank you, Judy. My name’s Ken Elliott. I live in Mount Vernon, Maine. I’m 78 years old. I’ve not ever been married nor had children, and I live alone. I think I’m the voice of a rural community here. My town is Mount Vernon. It’s 1,300 people. We do have an aging-in-place group, and I’m keenly interested and have been interested in the solution side of solo aging, and perhaps we’ll circle back to that later on in our discussion.

Graham: Great, thank you. Denise, tell us about yourself.

Denise Baker: Morning, everyone. I’m Denise Baker. I want to give you a few snippets about myself. I’m 81 years old. I live in a lovely house in Asheville, North Carolina, with my roommate, Yellow, the dog. I moved here 15 years ago after retiring from my job with the government in Washington, D.C. I have vascular and Alzheimer’s dementias and I have limited vision. I spend a lot of my time making pottery, which is my entry into the world. I have raised three daughters and a husband and am happily divorced for 35 years. My daughters live in Boston and Denver. I feel that I’m pretty self-sufficient. If I need help, I have neighbors and friends who are more than happy to pitch in. Sometimes too happy to pitch in. I like making my own decisions when I can. I’m a team member for Dementia Friendly Western North Carolina, and we do educational sessions for community groups who want to learn more about dementia. And that’s me in a nutshell.

Graham: Thank you, Denise. Now Bill, hopefully we’ve solved these sound problems.

Bill Hall: I hope so. Can you hear me?

Graham: Yes.

Hall: OK.

Graham: How about introducing yourself?

Hall: My name is Bill Hall. I am a Tlingit Indian from a small fishing village in Alaska called Hoonah. I am from the Raven Clan and I live in Seattle, Washington. I’ve been living with HIV and AIDS for 38 years now, and I live in a building that was built specifically for people living with HIV. It’s called Cal Anderson House. I am the community advocate for the Native American community here in Seattle on HIV, and I’m really happy to be part of this panel.

Graham: And how old are you, Bill?

Hall: I am 71.

Graham: Thank you. All right. Now that we’ve met all of you, it’s time to dive in. And Don, I think you’re going to go first. They say about raising children, it takes a village. I think that’s true for older adults too. Do you have a community of people you can rely on? Who’s part of that community?

Bell: Well, I do have a community of people on whom I can rely, starting with my church community, a very welcoming church, and that’s what we pride ourselves on. And, of course, I do have bio relationships too. I have two adult children and seven grandchildren. But it’s the friends and friends of long term who are really important because they’re people who go through the stages of life with you. And my long-term friends and I agree that rather than buying into the values of ageism that tell us that we are lesser as we grow older, we are leaning into the aging experience and claiming our years and our experience and enjoying that. We are not spending the remaining years of our lives just waiting to die. We are living them very actively and fully as we can.

Graham: Thank you, Don. Ken, I wanted to ask you the same question. Do you have a community that you can rely on in Mount Vernon?

Elliott: I’ll say 30%. I’ll try to be something of a realist in the group saying, “Not a very good one.” And that’s part of the paradox of living in the paradise, which is the Maine woods, is that your support systems tend to be few. So that it’s no coincidence that I’m interested in solutions, and I’m interested in the concept of do-it-yourself.

Graham: Bill, you’re a long-term HIV survivor and you have a lot of health issues. Can you tell us about the issues that you deal with and how you manage them on your own?

Hall: In the past year, I’ve dealt with back-to-back cancer — prostate cancer, and kidney cancer — and I’ve developed problems with walking. And I would say in the last 14 months, I’ve almost died six times. I’ve been in the hospital for internal bleeding, for extremely high blood sugars, and, along with that, I deal with HIV and AIDS, which brings up a lot of complications. I deal with diabetes, heart disease, and it’s been a rough two years for me because it seems like I’ve lived in the hospital every day. But you have to be adaptable, I’ve found, as I’ve learned from HIV. It’s that this is what you’re given, this is what you have to deal with, and you have to take what comes and deal with it as it comes. And I think it’s that adaptability that I have that I’m still here today.

Graham: That’s a lot to deal with on your own. Who helps you out when you need help?

Hall: Well, I’ve been alone all my life, and there’s a long story behind that, but I won’t get into it. And so I have a neighbor that is in the building. He helps when I need to be escorted from a test or that requires somebody pick me up, he does that. He brings me soup every once in a while. Always calling to check in on me. And I have another friend who gives me a ride to medical appointments. And so it’s a blessing to have them in my life because living alone with all these diseases is really hard, especially at night when the fears all come to you. And so I have a great medical team, and so I am, in every sense of the word, very well taken care of.

Graham: Thank you, Bill. I’m struck by what you said, which I’ve heard from so many older adults, which is you have to deal with the hand that you’re dealt and the need for adaptability, dealing with the problems that arise that come up. Now, Denise, you told us you have vascular dementia and Alzheimer’s, and I believe you’re the survivor of a stroke, and you have eye issues. How do you deal with all of that while living alone? How have you made things work for yourself?

Baker: I love living alone. I couldn’t do it without my dog. We talk. She doesn’t argue with me. Life is great. I think for most of us who live alone and are making a good job of it, I think a lot of it is attitude. If you think that everything’s going to be OK, you’re going to come a lot closer to that than if you think, “Oh, poor me. What’s going to happen to me?” I was diagnosed with Alzheimer’s about 14 years ago. I’m sorry, with vascular dementia, which it’s not unusual for vascular dementia to come years after having a stroke. But five years after the vascular dementia diagnosis, I was diagnosed with Alzheimer’s. I was used to having dementia, so the Alzheimer’s diagnosis didn’t really sink me, but it did make me more serious about my dementias, and I started taking a lot better care of myself, and I’m doing well. My memory is good. I get confused from time to time, but then don’t we all, and I’m happy. Things are going well for me.

Graham: Follow-up question. What helps you manage on your own? What kind of arrangements have you made to make your life possible while dealing with this on your own?

Baker: Well, I live in my own house, so I make all the decisions that I want to make. If I need help, if I’m confused about something, I’ve got friends and family and neighbors who are more than happy to help me. As far as long-term, I have long-term care insurance that, when the time comes, it will pay for someone to come into my house and help me out on a day-by-day basis. So I’m not concerned about having to go to a nursing home or something.

Graham: Thank you so much.

Graham: Hilda, when we spent time together, you told me that everyone you know, including your doctors, say there’s nobody like you at 102. How does it feel living by yourself at 102 years of age?

Jaffe: Well, it doesn’t feel any different today than it did yesterday or a year ago. So it isn’t really age that’s there, it is the surroundings and the circumstances. I often point out to people that there was a difference before covid and after covid. Before covid, life just went on from day to day and you kept doing the same things that you were doing before, and then you suddenly were stopped. You were paused in that. And life, if you were healthy, you continued to live, but the opportunities and the openness was not available to you.

But after two and three years, when things came back to supposedly normal, then it was time to make some decisions about whether the things you were doing before were what you wanted to continue doing again. What was important to put your time about? And so, I used to go to the theater a lot. My hearing deteriorated. I just stopped going to the theater. That is not something I enjoy anymore, but I can still enjoy music.

And so I go to opera and symphony and chamber music so that I can continue to be with people. And I do that with other people so that I have somebody to talk to. So it’s a question of every day accommodating. I travel. Public transportation within central New York City certainly is fantastic. And so I travel by bus. I don’t take the subway anymore, it’s not necessary. I take buses; if necessary, a taxi. But buses satisfy me and that’s how I get to doctors, that’s how I get to the opera.

But what I do, and this brings me among people, and Judy even participated. I volunteer at the New York Public Library, which is the main branch at 42nd and Fifth Avenue. and I’m a docent for their exhibits. And I give a one-hour tour about five or six times a month. So that gives me something to do, something to be among people … people to talk with, to have to do some research and come up as they make changes in the exhibit. I have to do research about new things that they’re putting in.

So there is enough to do. Read the paper every day, do my crossword puzzles, be on FaceTime and WhatsApp with my far-flung family and all of my eight great-grandchildren. The youngest is 2 years-old, the oldest is 13. They know me as “Gma,” which is short for great-grandma. And they know me on screen, so to some of them I’m a face and to some they visit and know me in person. But as I said, today it’s just another day.

Graham: A couple of things stand out, what people who are older adults who are living alone do to be among people and the importance of location in terms of providing opportunities for that. Ken, I wanted to get back to you. When you and I first spoke months ago, you told me that “solo agers,” when you began to be interested in this issue, weren’t on the radar screen in Maine. Can you talk about how you became aware that it wasn’t just you, it was a broader issue? And what kind of reception you met when you began to take this issue forward in Maine?

Elliott: Thanks for the question. It’s a helpful one, Judy, and certainly getting informed. I want to express my gratitude to you for the articles that you have written. They’re brilliant, they’re really good. I wish I’d written them myself. But to answer your question about what I have found as far as receptiveness in Maine. One of the things that keeps me going is, I don’t believe, and I can always be wrong or a new one can be established, but I don’t believe there is a study group or an advocacy group specifically for solo agers in the state of Maine.

And I have asked everywhere from adult services to the universities where I used to work and to others who are interested in studying gerontology. So that surprised me. And so what I found is that when people hear the term and become better informed, there’s small movement in the direction of, “OK, what are we going to do with this?” And one has to have a great deal of patience, but I think it’s possible, No. 1, to establish such an advocacy or study group. And No. 2, to have some very achievable goals, like, again, in the state’s aging plan.

I’d love somebody to do a survey on statewide aging plans and see how many of them actually identify solo agers as a significant group. So it’s milestones like that that keep me interested as well as the fact that the awareness is changing even as the age wave swells up, as it were, and one can confidently predict that this will be an important dynamic for us all. I really do believe that.

Graham: Now Hilda talked about making her way among other people, what brings her outside into the world. What does that consist of for you, Ken?

Elliott: Well, first of all, as I’ve mentioned, I tend to be a fairly introverted, solitary type to start with. Two, I have a work history for many years being a psychologist and working intimately with people in psychotherapy and so forth. And three, I’m not as patient as I used to be as far as people spending their time wisely. So that’s why solutions are far more fascinating to me than elaborating on the exploration of problems because something fruitful can come of it. I’m not sure if I’m still on target with your question, Judy, so …

Graham: That’s all right. I appreciate your thoughts. I’m going to switch to Don. Like Hilda, you live in a major urban area, Chicago, my hometown. What brings you in contact with people? And this is a two-part question. I guess that’s the first part and then I’ll give you the second part after you answer. And do you make that a priority?

Bell: Absolutely, I do. Social isolation is the No. 1 issue for all generations, but specifically for the aging generation. And our survival is based upon the fact that we have an anthropological need to be associated with one another. We experience in our aging group the same thing that mirrors what happens to a newborn who isn’t touched, who isn’t interacted or whatever, they can be medically viable, but they pass away from failure to thrive because of lack of contact. That happens to us.

So when I deal with the issue of being alone, there’s a difference between being alone and being lonely. And so as it happened in my life path, I was not partnered. So I am alone, but I’m not by myself. And that’s because of intentionality. I make it my priority to interact with the world and to associate with other people because I need them.

Graham: Can you give us some examples of how you do that?

Bell: Yes. I do benefit from some of the privileges of living in a large urban area. There’s a digital divide that exists between urban areas and rural and ex-urban areas, like Ken’s place. So we can be digitally connected and that’s important in this age. I’m a part of a group called The Village Chicago, and it’s part of a National group called The Village to Village Movement.

And what we do is, we have virtually created a community that brings us together, and we are committed to having programs that give us activities, making connections. And we have basically made a commitment that we are going to see each other through this third act of life. And that calls for dealing with one’s mortality. When you age, you got to deal with that. As far as I know, there’s no way that we get out of here other than through death.

But as we get older, we even look at death differently. And when we’re dealing with our mortality, we recognize that that’s a normal part of life and accept that. But on the meantime, we have one other decision to make, and that is whether we’re sitting around waiting for death or we’re going to live actively until we die. And I vote for that. So death’s going to have to catch me on the run, not in avoidance, but just because I’ll be engaged until I’m unengaged.

Graham: That’s so interesting. Thank you for that, Don. Bill, I wanted to shift over to you. So some of the issues that we’re talking about for you, HIV/AIDS. I know you are an advocate in the Native American community. And the question is how open is that community to hearing about your experiences of living with HIV/AIDS as an older person, living alone, and offering community support and assistance?

Hall: It’s a difficult journey because the stigma in the Native American community on HIV and AIDS is quite strong. And so I’ve tried to figure out why stigma is so strong. But I decided that I’m not going to find that answer, so I just need to keep getting my message out and hopefully one person will hear it. And so it’s just an ongoing process. It’s been a long process, and you just have to keep going because if you give up then nobody will hear your message.

Graham: So Don talked about social isolation and loneliness. Does stigma associated with HIV, has that impacted you personally in terms of being socially isolated and/or lonely?

Hall: It did in the early days of HIV, when HIV was first identified and nobody knew how it was spread. There was a lot of fear and there was also a lot of … we’ve all heard the stories about Ryan White being burned out of his house. And I’ve seen myself several people attacked because they were HIV over the years. And so there was great fear.

And what that did was it shoved us back into the closet and we hid our HIV ferociously. But so much has changed now that AIDS is 40 years old, that fear is gone. And when I stepped up to be an advocate for the Native community, I decided that every time I speak, I’m going to tell them I’ve been living with HIV and AIDS for 38 years.

Graham: Let’s stay on the subject for a moment of loneliness and social isolation. I’m going to open it up and ask, not direct the question to any one of you, in particular, but all of you. And you can raise your hand if you want to answer. A lot of people assume that if you live alone as an older adult, you’re isolated and you’re lonely. Is that true for you? Who’d like to answer? Denise?

Baker: I have all kinds of people around me. My dog walks me about an hour a day and I meet lots of neighbors. And we stand for a few minutes and talk about the day or the weather or what’s going to happen to western North Carolina next. I belong to a couple of wonderful groups. I’m a member of a co-op gallery in the River Arts District, and we get together at least once a month. And here recently, we’ve been doing what we can to help the artists in the River Arts District who have been displaced by the hurricane. And that’s been a wonderful connection.

Despite all the devastation around us, there is a tremendous sense of community and helping each other out that have come from this disaster, and we’re all hoping that it lasts. I’m also a member of the Dementia Friendly Western North Carolina steering team, which I mentioned. And we do a lot of work with the community in outreach and helping people understand that dementia is not a curse. It’s something that happens to a lot of us as we grow older. And these groups give me purpose. They’re very uplifting for me and they make me feel good about myself and my life and everyone around me.

Graham: Thank you, Denise. To Hilda?

Jaffe: Yeah. There are a lot of opportunities for people who live alone. Zoom classes and book clubs and telephone classes, and I’m on with a number of them. Organizations, museums, my synagogue, and I’m active on an adult education committee in my synagogue. So some of that happens on Zoom. You don’t have to be physically present. And some of these Zoom classes, people identify where they live and they live all over the country, although they are on with the Museum of Natural History in New York City. So there is always, on any week, I have a class of some kind on Zoom or telephone. So it’s possible to find things.

Graham: I think that addresses social isolation. What about loneliness, Hilda? Is that a piece of your life?

Jaffe: It is not a problem with me because the day goes pretty quickly and there are always things to do or something in my calendar that reminds me that I have a class or somebody will call me. My daughter will call me from Israel and say, “Do you want to do five minutes on WhatsApp in the playground with a 4-year-old?” Let me tell you, that picks up your day. It really does. Watching the 4-year-old go down the slide. But these are very short, but they’re pickups. And so I know that there are people out there thinking of me. That, I think, is what is helpful and wondering how I …

Graham: And that’s something for our audience, knowing that there are people out there who are thinking of you. Don, you live in a building in Chicago where most of the — I’ve actually visited when I was there in June — most of the older adults who live in that building live alone. Have you formed connections among yourselves?

Bell: Yeah, we have. But I think that the questions that we are dealing with about aging alone go beyond what we actually do. So I think that amongst us, we’ve offered a broad variety of things that we do, but I think we also have to deal with the issues of what we think and how we feel. And when I had to confront, in looking over the course of my lifetime, what I felt about going through it alone, meaning unpartnered. And a couple of years ago, I just had to face it because it had been an issue my entire life.

And what I had to do was to come to not only accept my aloneness, but to be able to function in it. And that called for me having to deal with two major issues. One was, I had to deal with the yearning that I’d had for decades for having someone in my life, someone to claim me, someone to come for me. And that hadn’t happened. And what did I feel about that? And the other issue that I had to deal with was the issue of self-criticism because I was alone.

What was wrong with me? Was I not attractive enough? Did I lack the attractive gene? Did I make people not want to be associated with me? It’s something in me that is the reason why I’m alone. And you have to deal with how you feel about those things. And when you get to that, then you can embrace the reality of what your life is. And if your life happens to be one where you’re going through it alone, you still are challenged to live your best life, to seek your best life.

Graham: What helped you deal with those very difficult and challenging feelings, Don?

Bell: Well, what helped me deal with them personally and, again, it’s a personal thing. There’s no cookie-cutter cookbook-type solution to this. But for me, what helped me deal with it was to really investigate how I felt about how I was spending my life.

The things that I was doing and the things that I was giving back and the connections that I had that I may not have been conscious of. But even though I’m a person who’s very highly engaged in a lot of civic involvement and that sort of stuff, I still came back to my apartment on Friday night. Nothing had been moved, nothing has changed. It was empty, except for me. So just have to deal with those things.

Graham: Does anybody else want to chip in on this subject before we move on to the topic I know Ken is very interested in and it’s solutions about dealing personally with the feelings of growing older and the feelings of being alone.

Hall: Well, I think that Don and I have so much in common. I can almost say, “Ditto.” And somebody mentioned earlier that there’s a difference between being alone and being lonely. And I had to learn. I’ve been alone all my life, as I mentioned. I’ve never had a partner. Being involved in the community is really what keeps me going, but I still come home to an empty apartment at night. The human body’s an amazing vessel. I’ve gotten used to that, but there are times when it still hurts that I’ve never known what it’s like to have a partner. So it’s just one of those things that you’re given, and like Don, I had to adapt to it.

Graham: Anybody else want to chip in? All right. A lot of the questions that are coming in have to do with solutions. So I am going to ask one more round of questions of everybody before we get there, which is, do you think about the future? And how are you planning for it, as someone who’s older and who is likely going to continue to be alone as you grow older? Who would like to address that? Hilda.

Jaffe: OK. And I think I have to think about that a great deal. And so there are several things that I have done, and that is that I share and update all of my financial and passwords with my son and with one other person so that there are people ready to step in at a moment’s notice if necessary. Let me tell you, passwords are important to share and update, and few know they really are.

And also, and this came about because of being in this centenarian study. And I was asked as part of it if I would donate my brain, funny as it sounds. And I agreed, because I think that’s a great idea, and my family thought that was a great idea. And so, because of that, I had to do a prepaid funeral. That’s all taken care of, and so no one has to think about that on very short notice, which I think is helpful. So that’s part of it.

And another is declutter. When I moved out of my house in New Jersey, where I lived for 60 some years, I had a huge accumulation. But to move into a one-bedroom apartment, I got rid of almost everything. And even more, after I moved in when I discovered after a year of living in New York what I needed and what I didn’t need, and then more stuff went out. So I really am a minimalist, and makes life much easier for me because I don’t have to think about all the things, and I know that whoever cleans out will have less to do.

Graham: Anyone else want to talk about how you’re preparing for your future? Denise.

Baker: So there are over 400 kinds of dementia. Most of them are disabilities, but Alzheimer’s and vascular dementia are diseases and people die from those. And I know that I might die from Alzheimer’s in a few years. On the other hand, I might get hit by a bus down on Main Street in Asheville next week. I see no reason to worry about what might come, and that takes a big load off. I’ve got my end-of-life set up, so I don’t have to be concerned about that. And I’m just living life like most people and enjoying it and not worrying.

Graham: Ken, what about you?

Elliott: Well, I want to put a plug in for humor.

Graham: Great.

Elliott: I find that to be a really fine practice. And frankly, if I had my first wish, I’d go to clown school. And I say that because humor is such a wonderful gift to everybody, people around you as well as yourself, if it’s not cruel. So that’s one point. I think the other point is to realize that everything tends to require a balance, and thinking about the future, as I think Hilda mentioned, can be an escape from living fully in the present. So I think that caution is worth saying twice.

And the other thing, I think everyone here hasn’t said it, but it’s clearly true, is to stay active in whatever form. And I just want to put a little plug in for meditation. I’ve been a meditator associated with the Buddhist Center for 30 years. It’s been enormously helpful to myself, and I suspect other solo-prone people. Get me started and I’ll talk far too long, so I’ll stop there.

Graham: I think you had told me, and this is one of the big issues for older adults living alone, finding people to be decision-makers for them. You had mentioned that that was an issue that you were addressing, Ken, and I was wondering if there’s an update on that.

Elliott: Let me be concise, but I want to address it, which is to say, I think the normal routine of going through the, I think of it as a stage, of developing your end-of-life papers and getting your proxy for this and proxy for that in order with the aid of a competent lawyer, that’s all fine and well. But I think probably of far greater importance is what people here have been alluding to, which is surrounding yourself with what I call a care team.

And if it’s family, God bless them. It’s a wonderful thing. If it’s not, the question of what alternatives are there is really a systemic question. I don’t think it’s just an inde … People often ask me, “Well, aren’t your friends going to come and help you out?” Or, “Isn’t your family going to help you out?” And my family’s 3,000 miles away and so forth. So it’s not an easy solution, but it’s an important question, which is to say the building of what I call a care team. And planning, I think, can be a real rabbit hole if one doesn’t balance it with the cultivation of a care team.

Graham: So is that something you’re actively doing?

Elliott: Yes, but I think it will take me years to do it, life permitting. But slowly. I’ve been, for example, part of Neighbors Driving Neighbors, I’ve been part of Aging in Place. I’ve been part of innumerable kinds of committees, which are not my favorite thing to spend my time with, but it is a way of building networks.

And I’m glad that someone mentioned the issue of technology because when I think of do-it-yourself, I hunger for a group that will really focus that domain on the needs of do-it-yourselfers who are aging. I think that’s really, it’s remarkable how uncultivated that seems to be. So I’m still looking.

Graham: This idea came up in my reporting over and over and over again. You call it a care team. Just having a team of people who support you. And it can be family, if you got family. It can be friends. For Don, it sounds like your team, your friends, longtime Chicago friends are part of your essential team. Who’s on your team? And if you’re missing people on the team, how do you find them, is a really big question. Anybody have thoughts about that before we move on to some of the questions that have come in from the audience?

Bell: My thought about that is simply this. Living in the digital age as we do now, what we’re risking is the loss of anthropologically developed human skills. We say that people aren’t as nice as they were to one another. They don’t see each other, they bump into each other. It’s because we have used our digital developments to displace rather than to enhance our anthropological development.

And so people don’t know how to look at one another. They don’t know how to engage using all of their senses, all of their skills. No touch, no feel, no smell, nobody’s looking at one another, that kind of thing. And that means that we are then not connected the way that human beings have always anthropologically connected.

My issue in aging is simply this: I engage in my legacy. I try to de-silo aging because we’re all aging. It all goes in one direction. So it is incumbent upon me to use my lived experience to pass it on to those who are younger than I am, hopefully to their benefit. But they certainly can accept and not accept any of it that they want. But I don’t want them to have to reinvent the wheels that we’ve all invented during our time. And I want them to recognize, as we have come to recognize, that there are shoulders upon which we stand that go back eons. And we don’t want that lost in this age where people are not connected.

Graham: Ken?

Hall: I think that it’s important to mention that the statistics you started with, so many of those, me included, live in poverty. We don’t have the luxury of planning a funeral and everything like that. I think that’s something I had to let go because I had no control over that. But for so many, we’re in the same boat. We’re at the mercy of the state when we pass on.

Graham: Ken, you had your hand up, but then I want to get back to what you said, Bill, in just a second.

Elliott: Just a quick comment, and that is I have a huge appreciation of slowness. I think that slowness, as Don said, allows the senses to wake up and allows the relationships to grow and so forth. That’s a big part of my practice as a solo ager.

Graham: Living slowly?

Elliott: Yeah. There’s a slow movement actually, and you can learn a lot about that. It started with food, of course, but it’s well worth taking seriously. It’s more than just a sort of a fad kind of thing, I think.

Graham: So one of the questions that came in, and it’s really an important question that came up in the comment section to The Washington Post article on Hilda, is navigating the financial needs of aging. So many people commented that Hilda was fortunate that she was able to live in New York City, afford the rent in New York City, afford to go to museums, afford to go to concerts. And so the first question is from the audience. How are you navigating the financial needs in aging and how do finances affect your community involvement? Bill, let’s start with you because you mentioned being in poverty, but why don’t you talk about your own financial circumstances and how that affects you as a solo senior?

Hall: Well, I am one of those people that live on Social Security. Fortunately, I do do some work as a consultant that brings me extra income, but it’s really the economy today with the price of food. I used to spend $30 a week on food pre-pandemic. I now spend $70 a week. And if it wasn’t for my consulting work, I wouldn’t be able to do that.

And so we have so much that is working against us, the economy and the high rental costs. If I could, I would go out and get a job. But I have it in the back of my mind that, “Who’s going to hire a 71-year-old?” And so it’s been another thing that you have to adapt to, and I think you have to develop a sense of gratitude. “OK, I can’t get that steak, but I can get that chicken.” It’s all adaptability.

Graham: Don, I know this is an issue for you as well, and it plays into your experience caring for your parents. Why don’t you talk about your situation?

Bell: Well, sure. I think that, first of all, no issue, no social demographic issue is isolated by itself. They’re all intersectional. And the intersections of mine, of course, include race and class and sexual orientation and gender identity and that sort of thing. My own personal background, I’m a retired academic. And I had the experience of 30 years of sandwich experience of taking care of both my parents in serial illnesses and raising my two children at the same time.

So what happened was I had to take a separation allocation from my state university pension because we had to live. That was money for the future, but we had to live in the present, and so like millions of people across the country went through all of our assets. Luckily, I worked at a time when one could pay into Social Security and into a retirement plan, but that ended very early in my career. So I live today on a partial Social Security allocation. I don’t even get a full one, I get a partial one.

But as a result, I live in subsidized housing. I have subsidy for food and things like this, and I have Medicare and Medicaid and that sort of stuff. I’m blessed to have the things that I have because all of those things are not in place for everybody universally across the country. So I was blessed to end up where I am, but it is a constant challenge for people to live in the present, particularly people who are aging or have any other socially marginalized demographics.

And I also like to take this opportunity to very gently suggest that the philanthropic and corporate interests that sponsor this program, when you’re planning for this kind of thing, think about honoraria for your participants because lived experience does not come free. And yet we’ve developed a lot of consultants, a lot of specialists on our lived experience, but we kind of need some too. So that’s the reality of financial issues at this time. For most of us, it’s day to day, paycheck to paycheck, allocation to allocation. It’s tough.

Graham: Thank you, Don. Ken.

Elliott: I just have to give a shout-out to blue zones. I imagine a lot of you have heard about them, but these are communities both in North America and elsewhere where it seems like longevity is part of the culture, and the issue of cost is, it’s not based on the same model that we have here. I think it’s perhaps the downside of our fascination with individualism that… There may be different models, and I urge people to enjoy reading about them because they’re inspiring.

Graham: Hilda, before we move on to the next question …

Jaffe: Yes.

Graham: … which is an important one, you read through all the comments on your article, you saw all the financial issues. Do you have anything to say about that side of living alone while aging?

Jaffe: Well, no, because the comments, most of them were from people who are certainly not living comfortably, and so I was very much aware of that. And the fact that there was nothing in Judy’s article that spoke to that at all, so that everybody was speculating about me. But you know, I do live comfortably, there’s no question about it. And it is a result of work I did over the course of my life as an educator and my husband as a scientist. And living in a house and selling a house and having money to invest, and the fact that I rent an apartment in New York and that I don’t own it, so that’s not an investment.

So yeah, you know, I don’t feel guilty about the fact that I am comfortable, but I’m frugal. I am frugal. See, that’s the point, and that’s the whole idea of this that I mentioned. Uncluttered. I don’t need things, and so I don’t acquire things, and I don’t go Amazon and things like that. I only replace what I get rid of. And given the limited social life, I don’t need fancy clothes. I have enough clothes that I moved with 14 years ago. And so it is possible to be comfortable, but it is also possible to be frugal.

Graham: And there’s a sharp divide between the haves and have-nots.

Jaffe: Absolutely.

Graham: That we all know.

Jaffe: And I’m very much aware of it, and I carry money with me for street people all the time. And there are street people in New York everywhere. And so …

Graham: And many of them older.

Jaffe: And many of them older, right.

Graham: I’m going to move on to the next question, which is, what is the best way that we in the community can support seniors living alone? Ken, let’s start with you. What should we be doing?

Elliott: I’ll make it brief. Make solo aging a household word. And if that means letting representatives know about it or letting social service… Even social service agencies rarely use that term or know of that concept, even despite of the statistics that you’ve assembled, Judy, which to me are quite daunting. It hasn’t worked its way into the verbal culture yet, and hence it hasn’t trickled down into the policy culture and moving of financial resources and so forth. All of that’s possible when the word really becomes embedded. It’s sort of like, “What is my name?” And the idea of embracing who you are and all of those identity politics kinds of things, they’re part of the evolution, I think, of solo aging.

Graham: But then once it becomes part of the vernacular, what next? What can be done to actually help people more effectively? Do you have thoughts about that?

Elliott: Sure. The first question is time frame. Hilda was talking about certainly being generous. And that’s a personal practice and decision that can start right away. And I think that we’re right at the holidays now, it’s a great time to be mindful of that. So, starting there, I think, but beyond that, I think a lot of professionals in social services as well as policymakers are of a mindset that predates the emergence of solo aging.

Graham: All right, I’m going to go around. Other people’s thoughts about the best ways that organizations, policymakers can support older adults who are living by themselves, aging solo. Who wants to jump in?

Bell: I’ll jump in. This is my request. That first of all, people do not confuse growing older with growing lesser in value or ability. In terms of ability, don’t confuse my ability with my capacity. Thirdly, let’s de-silo the aging experience. We’re all in it together. And finally, when you’re dealing with us, deal with us, make decisions with us, not for us. Don’t infantilize us. Don’t devalue our lived experience and help us do at our time what you’ll have to do at your time when you are older, and that is to fight to own your life all the way through the end of it.

Graham: Anybody else want to pitch in? I have a couple of other questions I want to get to. We have about four minutes left. All right. Here’s another one. If you could have any form of help you wanted, what would that be? Any thoughts?

Bell: Just to work in tandem with me to do things that we agreed to do together. Anyone who wants to be with me is a partner, and if we’re partners, we share in decision-making about what we will do together.

Graham: Bill, it looks like you might have thoughts. Any form of help that you wanted. What would come first for you?

Hall: Who did you ask?

Graham: You.

Hall: Oh, oh. Sorry. If I could have any form of help, I think it would be help with cleaning and shopping. I can do those things, but it takes time. I can do one thing, like clean the kitchen one day, and I wait two days before I’ll do the dusting and stuff like that. In the immediate, it would be help with cleaning and shopping.

Graham: By the way, I got the time wrong. I said it was four more minutes, but we have, in fact, more than 15 minutes left, so we have plenty of time. Denise, I’m interested in your thoughts, and I know you’ve already arranged a lot of help for yourself, but let’s start with, if you could have any form of help you need, what would it be?

Baker: It would be technical help. Obviously, I’m really stupid when it comes to the internet and Zoom and technology. And I think part of that is my age and part of it is the confusion that I get from dementia. But I can be shown how to do something and I will not remember it or I’ll get confused with it. And if there was a group of people to help older adults with technology, boy, I’d sign up to be helped right away.

Graham: There are groups of that kind, by the way, but people don’t know about them.

Jaffe: Yes.

Graham: Hilda.

Baker: How do I find out about them?

Jaffe: Well, they may be available. My synagogue has offered teenagers to come to your house and help you with your technology.

Baker: Those would be extra.

Jaffe: There are community organizations, the public library in my New Jersey town, because I still get information from there. They have, the public library has a squad of, and they’re always teenagers because that’s what they love to do.

Baker: Yeah.

Jaffe: And they will help you. That kind of help is, technical help, is out there somewhere.

Baker: That’s great. Hilda, thanks. I’ll check into that.

Graham: And Denise, I have some resources I can send to you, but the need for these kinds of services is enormous. And you may have seen The New York Times. My friend and former colleague, Paula Span of “The New Old Age” wrote last week about how the new digital payment systems are leaving a lot of older adults behind if they’re not comfortable with technology. And there are places you go now where you can’t even use cash, but what if you have limited vision? What if you don’t know how to upload those apps on your cellphone? It’s a real issue. Ken.

Elliott: Well, let me just underline the point, too, that often when we start thinking about what we can do better, we generalize to all older people. And I want to put a pitch in for keeping visible solo agers because I don’t think … You know where I’m heading on this. I don’t think that all elders have the same needs, and I think that we solo agers have some rather distinctive characteristics that, by and large, are overlooked in that people want to sort of help generically the elderly, but they’ve never heard of solo aging.

Graham: Do you want to elaborate which characteristics you would want people to keep in focus?

Elliott: That takes some work, but let me work on it.

Graham: OK.

Elliott: The first I think is the do-it-yourselfer characteristic. I think that we, as a group, one of our strengths is we’re rather independent-minded, and pride means something to us, and hence if the system doesn’t reflect our distinctive characteristics, we don’t know what door to, at least that’s my own experience, what door to knock on. That’s a characteristic, is that sort of independent-mindedness. I think the other two is that you’ve assembled some rather articulate people here, myself excluded, but I don’t know that we represent what is modal or even normal about solo agers. And again, your statistics, I think point to that in a vivid kind of way. I think there’s a lot of diversity among solo agers, and yet what we all have in common is the fact of having to, it’s a wonderful Maine term, having to make do with essentially, what we can see and know. And that’s very limited when you are as isolated as at least I am and others are as well.

Graham: I think the point that you raise, Ken, is so essential, which is the group here is by definition able to use technology, articulate, willing to come forward, able to come forward. In reporting my series, there are millions of people who are older, who are by themselves, who do not come forward, who do not know what door to knock upon, who are economically disadvantaged, who have significant health issues. And their doctors may or may not be aware. Other people may or may not be aware, and they are not represented on this panel, but we should not forget the fact that a large segment of this population is vulnerable. And I’m very glad you brought that up, Ken.

Another question came in, and I think this has to do with the issue of care teams, but it’s a very interesting question, which is, have any of you, and I’m interested in hearing from as many of you as possible, had to reassess the quality of the relationships around you as you’ve grown older on your own? And I’ll elaborate. Do you find it necessary to audit your inner circle and have a very serious conversation with yourself about the relationship value of those around you? It’s an interesting question. Does anybody want to jump in?

Elliott: Well, the easy answer is yes.

Graham: All right. More.

Elliott: Well, as one’s capacities and energies dwindle and one’s social attractiveness diminishes, one is, at least speaking for myself, is constantly auditing and trying to optimize one’s network, as it were.

Graham: So give an example of that, perhaps without naming names.

Elliott: OK. In my small town in Maine, I joined the Aging in Place group. It was one of the most miserable experiences I’ve had, and not by virtue of intention, but just by virtue of disconnection. Whereas, people just simply were not sensitized, I think, certainly not to the needs of solo agers that I was aware of.

Graham: How did that lack of sensitivity manifest itself?

Elliott: I think people do what they’re familiar with and, for example, the Aging in Place group, well, let’s have a dinner, and let’s make food for people, and let’s put sand out so that when the ice comes, and all those kinds of wonderful things, but those are first-of-mind things. And I think some training to the Aging in Place group or some broadening of those perspectives, getting away from the stereotypes of what we elders do in fact need. Just to be, and you know that I can be much too critical, but I will say that for the longest time, I noticed that the Aging in Place group talked about them, when we were all of that age. Remember that Maine is one of the oldest states in the union. Those kinds of, I don’t know, skill-building needs are readily apparent.

Graham: Anybody else want to chip in on this issue of auditing the quality of relationships and having difficult conversations, if need be, with relationships that may not be quite what you are hoping for. Bill?

Hall: Yes. I had to cut ties with my family after years of battles. Arguments that we were arguing about 30 years ago were still being argued about today. It really became an effort trying to keep them in my life. And I had to reach a point where I thought, it’s never going to happen. And so, I had to let my family go because I was dealing with more things that were serious to me, my health issues. People who don’t have HIV don’t realize that once you develop HIV, it takes your whole life. Constant labs, constant doctor visits, constant specialist visits, and dealing with things that come your way like cancer, like internal bleeding. It’s just constantly ongoing. And long-term survivors, I can see why they isolate because they’re mentally and emotionally exhausted. And I was fortunate enough to have one friend that I was talking to about it and she said, “But look, you’ve built a whole new family around you, all the groups you’re involved with.” And that was an eye-opener, and it made me appreciate the people that I do have in my life now.

Graham: This issue of families of choice, I’ve heard applied to, it comes out of the LGBTQ community, but it very much applies to, I think, older solo agers as well, developing families of choice. If your birth families are not there for you or you never developed your own family. Don, I see you nodding. Your thoughts?

Bell: Yes, you’re spot-on. You’re spot-on. And yes, we continue into our aging years what we started in our primary years. Doggone it, you didn’t hang on to everybody in kindergarten, and when you went to first grade, there were some you wanted to take with you and some you didn’t. We do that all the time, and it happens at this stage, too. And I want to quickly add to Ken’s point about solo aging. I think there needs to be a distinction between those of us who are solo agers by choice, and those of us who are solo agers by circumstance.

Graham: Right. I think I’ve seen that distinction in all of the literature. Denise or Hilda, have you found yourself auditing your relationships and perhaps letting go of some relationships that were no longer serving you?

Jaffe: Yes, absolutely. Very quickly. I’m down to a very few people with whom I, aside from family, and family has been great and supportive around the world, but yes, there are very few … First of all, there are very few of my contemporaries left, so one by one they’re gone. But yes, I do have some telephone relationships with people that are new within the past 10 years, let’s say, that are acquired and are really very helpful. And being a volunteer at the public library, there are a whole bunch of new people with whom I have light relationships, but they’re nice. A lunch can pep up a whole week. A lunch with a young person really is really great.

Graham: I think that’s an important piece for our audience as well. Relationships of all kinds make a difference, and the deep relationships and the light relationships. Denise, I just want to ask you before we move on, any thoughts on this issue of auditing relationships, sometimes perhaps confronting people who haven’t been there for you in the ways that you want and talking it through?

Baker: Yeah, I have friends who help me out for specific things like shopping, like taking me to meetings, but I’m concerned — I don’t know that they are — but I’m concerned about burning them out if I ask for help too often, so I find myself pulling back from time to time.

Graham: Thank you, Denise. I think we have time for one more wrap-around question for each one of you. We have three minutes left at this point. If you could go back and give your middle-aged self advice about preparing for older age, and older age living alone, what would that be? What would you tell the younger you? The 50-year-old you, perhaps. The 40-year-old you. Ken, why don’t you start?

Elliott: I’m going to come back to Denise’s point. She’s the only one who’s mentioned her dog.

Baker: She just woke up and came to visit us.

Elliott: That’s great. That’s great. No, but the point being is that I think critters are very important, and I use that word broadly, are a very important opportunity. And if I had a message to my 40-year-old self, first suggestion would be don’t take yourself so seriously. Then the second suggestion would be: Spend more time cultivating relationships with critters.

Graham: I like that. Bill, how about you?

Hall: Well, if I had a message to my younger self, it would have been to learn gratitude because it’s a hard lesson learned for me. And adaptability, that was another thing that was hard to learn for me. But I think those two things are really, fortunately, I’ve developed gratitude and adaptability, and I think it’s why I’m still here.

Graham: Thank you. Denise, would you have a message to younger Denise?

Baker: Yeah, I would tell younger Denise not to be so serious about everything, that life comes, life goes, and there are always new things to see and learn around the corner.

Graham: Thank you.

Baker: All I have to do is look for them.

Graham: Hilda, how about you?

Jaffe: Yeah, I think I would use part of the answer that I give to people now who ask me, to what do I attribute getting to 102? And of course, there’s genetics, and luck. Luck. But I also say, keep moving. And keep moving in the physical sense and in the intellectual and in the emotional sense. Don’t get stuck in one place.

Graham: And we’re almost done here. Don, you’re the last one. Advice to younger Don about growing older and doing so as a solo ager.

Bell: My advice to younger Don would be this: When those periods in your life happen where other lives have to be given a higher priority than your own, like when you’re raising your children or you’re caring for your parents, don’t lose your own life in that. Save some time in your life for your own life.

Graham: Thank you all. We’ve arrived at the end of this wonderful conversation. Thanks to the participants. Most of all, the five of you. Thanks to everyone who attended. Again, this will be housed on YouTube and on the KFF Health News website, and I so appreciate the chance to have these conversations with you all.

Jaffe: Thank you, Judy.

Elliott: Thank you for getting us into …

Jaffe: Thank you for getting us together, Judy. Really, thank you, Judy.

Graham: Thank you.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

Patients Couldn’t Pay Their Utility Bills. One Hospital Turned to Solar Power for Help.

Anna Goldman, a primary care physician at Boston Medical Center, got tired of hearing that her patients couldn’t afford the electricity needed to run breathing assistance machines, recharge wheelchairs, turn on air conditioning, or keep their refrigerators plugged in. So she worked with her hospital on a solution.

The result is a pilot effort called the Clean Power Prescription program. The initiative aims to help keep the lights on for roughly 80 patients with complex, chronic medical needs.

The program relies on 519 solar panels installed on the roof of one of the hospital’s office buildings. Half the energy generated by the panels helps power the medical center. The rest goes to patients who receive a monthly credit of about $50 on their utility bills.

Kiki Polk was among the first recipients. She has a history of Type 2 diabetes and high blood pressure.

On a warm fall day, Polk, who was nine months pregnant at the time, leaned into the air conditioning window unit in her living room.

“Oh my gosh, this feels so good, baby,” Polk crooned, swaying back and forth. “This is my best friend and my worst enemy.”

An enemy, because Polk can’t afford to run the AC. On cooler days, she has used a fan or opened a window instead. Polk knew the risks of overheating during pregnancy, including added stress on the pregnant person’s heart and potential risks to the fetus. She also has a teenage daughter who uses the AC in her bedroom — too much, according to her mom.

A woman adjusts the settings on an air conditioning unit in a window. — Kiki Polk, one of the first Boston Medical Center patients to enroll in the Clean Power Prescription program, turns on the air conditioner in her home in the city’s Dorchester neighborhood. (Jesse Costa/WBUR)

Polk got behind on her utility bill. Eversource, her electricity provider, worked with her on a payment plan. But the bills were still high for Polk, who works as a school bus and lunchroom monitor. She was surprised when staff at Boston Medical Center, where she was a patient, offered to help.

“I always think they’re only there for, you know, medical stuff,” Polk said, “not the personal financial stuff.”

Polk is on maternity leave now to care for her baby, the tiny Briana Moore.

Goldman, who is also BMC’s medical director of climate and sustainability, said hospital screening questionnaires show thousands of patients like Polk struggle to pay their utility bills.

“I had a conversation recently with someone who had a hospital bed at home,” Goldman said. “They were using so much energy because of the hospital bed that they were facing a utility shut-off.”

Goldman wrote a letter to the utility company requesting that the power stay on. Last year, she and her colleagues at Boston Medical Center wrote 1,674 letters to utility companies asking them to keep patients’ gas or electricity running. Goldman took that number to Bob Biggio, the hospital’s chief sustainability and real estate officer. He’d been counting on the solar panels to help the hospital shift to renewable energy, but sharing the power with patients felt as if it fit the health system’s mission.

“Boston Medical Center’s been focused on lower-income communities and trying to change their health outcomes for over 100 years,” Biggio said. “So this just seemed like the right thing to do.”

Standing on the roof amid the solar panels, Goldman pointed out a large vegetable garden one floor down.

“We’re actually growing food for our patients,” she said. “And, similarly, now we are producing electricity for our patients as a way to address all of the factors that can contribute to health outcomes.”

Vegetables grow in neat rows in a rooftop garden. — Food grown in the rooftop gardens at Boston Medical Center helps feed patients.(Jesse Costa/WBUR)

Many hospitals help patients sign up for electricity or heating assistance because research shows that not having them increases respiratory problems, mental distress and makes it harder to sleep. Aparna Bole, a pediatrician and senior consultant in the Office of Climate Change and Health Equity at the federal Department of Health and Human Services, said these are common problems for low- and moderate-income patients. BMC’s approach to solving them may be the first of its kind, she said.

“To be able to connect those very patients with clean, renewable energy in such a way that reduces their utility bills is really groundbreaking,” Bole said.

Bole is using a case study on the solar credits program to show other hospitals how they might do something similar. Boston Medical Center officials estimate the project cost $1.6 million, and said 60% of the funding came from the federal Inflation Reduction Act. Biggio has already mapped plans for an additional $11 million in solar installations.

“Our goal is to scale this pilot and help a lot more patients,” he said.

The expansion he envisions would allow a tenfold increase in patients who could be served by the program, but it still would not meet the demand. For now, each patient in the pilot program receives assistance for just one year. Boston Medical Center is looking for partners who might want to share their solar energy with the hospital’s patients in exchange for a higher federal tax credit or reimbursement.

Eversource’s vice president for energy efficiency, Tilak Subrahmanian, said the pilot was a complex project to launch, but now that it’s in place, it could be expanded.

“If other institutions are willing to step up, we’ll figure it out,” Subrahmanian said, “because there is such a need.”

This article is from a partnership that includes WBUR, NPR, and KFF Health News.

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