Kaiser Health News

Epidemic: The Scars of Smallpox

Published

1 year ago

November 7, 2023

Tue, 07 Nov 2023 10:00:00 +0000

In 1975, smallpox eradication workers in the capital of Bangladesh, Dhaka, rushed to Kuralia, a village in the country’s south. They were abuzz and the journey was urgent because they thought they just might get to document the very last case of variola major, a deadly strain of the virus.

When they arrived, they met a toddler, Rahima Banu.

She did have smallpox, and five years later, in 1980, when the World Health Organization declared smallpox eradicated, Banu became a symbol of one of the greatest accomplishments in public health.

That’s the lasting public legacy of Rahima Banu, the girl.

Episode 8, the series finale of “Eradicating Smallpox,” is the story of Rahima Banu, the woman — and her life after smallpox.

To meet with her, podcast host Céline Gounder traveled to Digholdi, Bangladesh, where Banu, her husband, their three daughters, and a son share a one-room bamboo-and-corrugated-metal home with a mud floor. Their finances are precarious. The family cannot afford good health care or to send their daughter to college.

The public has largely forgotten Banu, while in her personal life she faced prejudice from the local community because she had smallpox. Those negative attitudes followed her for decades after the virus was eradicated.

“I feel ashamed of my scars. People also felt disgusted,” Banu said, crying as she spoke through an interpreter.

Despite the hardship she’s faced, she is proud of her role in history, and that her children never had to live with the virus.

“It did not happen to anyone, and it will not happen,” she said.

The Host:

Céline Gounder
Senior fellow and editor-at-large for public health, KFF Health News

@celinegounder

Read Céline’s stories

Céline is senior fellow and editor-at-large for public health with KFF Health News. She is an infectious diseases physician and epidemiologist. She was an assistant commissioner of health in New York City. Between 1998 and 2012, she studied tuberculosis and HIV in South Africa, Lesotho, Malawi, Ethiopia, and Brazil. Gounder also served on the Biden-Harris Transition COVID-19 Advisory Board.

Voices From the Episode:

Rahima Banu
The last person in the world to have a naturally occurring case of the deadliest strain of smallpox

Nazma Begum
Rahima Banu’s daughter

Rafiqul Islam
Rahima Banu’s husband

Alan Schnur
Former World Health Organization smallpox eradication program worker in Bangladesh

Click to open the transcript

Transcript: The Scars of Smallpox

Podcast Transcript Epidemic: “Eradicating Smallpox” Season 2, Episode 8: The Scars of Smallpox Air date: Nov. 7, 2023

Editor’s note: If you are able, we encourage you to listen to the audio of “Epidemic,” which includes emotion and emphasis not found in the transcript. This transcript, generated using transcription software, has been edited for style and clarity. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Céline Gounder: Just when you thought smallpox was gone someplace, it could roar back.

Alan Schnur: We were aware that in some other countries there had been celebrations and then later found, uh, there had been ongoing transmission that wasn’t detected.

Céline Gounder: The virus was persistent and slippery, but smallpox did end, and Alan Schnur was there when it did.

Alan Schnur: I was one of the team members who was the first international responders to the last case of variola major smallpox.

[Upbeat music begins playing.]

Céline Gounder: The beginning of the end was 1975 in Bangladesh. Alan was in the capital city of Dhaka, meeting with other fieldworkers from the World Health Organization. They were gathered in a Quonset hut. If you’ve ever seen a World War II movie, you know what it looks like: Picture a big tin can cut down the middle — resting on its side.

The meeting was uneventful, which was a change of pace. When Alan first came to Bangladesh, smallpox cases had exploded. The country was reeling from a war for liberation.

But by that day, the outbreak had fizzled.

Alan Schnur: Things had gone very quiet. No reports of any active smallpox cases despite searches going on for several weeks.

Céline Gounder: Alan remembers that the walls of the Quonset hut were covered with maps and manuals documenting their work, and they kept a running tally of suspected cases.

Alan Schnur: And there was a big zero up there on the wall staring down at us for this whole meeting. So we were feeling pretty good at the time.

Céline Gounder: Not a single case of smallpox across the entire country. The team was starting to let themselves feel optimistic. Maybe they’d stamped out the disease here.

[Upbeat music ends.]

Alan Schnur: And then there was a telegram received saying one smallpox case found in Kuralia village in Bhola.

[Suspenseful music begins playing.]

Céline Gounder: The next morning, Alan and the head of the W–H–O mission in Bangladesh took a slow boat through snaking canals to Bhola Island.

[Ambient sounds of a boat on the water play in the background.]

Céline Gounder: Day turned into night. Night into day.

Another boat, then a Land Rover.

Alan Schnur: And the last half-mile, we had to walk to the house where the case was.

Céline Gounder: Finally, they made it.

Alan Schnur: It was a very simple house, certainly poorer than the average Bangladeshi house.

Céline Gounder: Inside was the patient, a little girl. Rahima Banu.

Alan Schnur: She was very scared. She was trying to hide behind her mother’s sari. So she was frightened and trying to to run back inside the house, but her mother kept her there.

Céline Gounder: There’s an iconic photo of Rahima and her mother from that day. Sitting on her mother’s hip, Rahima looks wary. But Alan says all around her there was an air of excitement among the public health workers.

This could finally be it: the last person with naturally occurring variola major smallpox.

Alan Schnur: And we didn’t find any more active cases after Rahima Banu.

[Suspenseful music fades out.]

Céline Gounder: The WHO continued to monitor Bangladesh for a couple of years, but that’s where the story ends for the deadliest version of smallpox. With Rahima Banu, the girl.

She became a symbol of — a poster child for — one of public health’s greatest achievements. But she did not share in the prestige or rewards that came after.

In this final episode of our series “Eradicating Smallpox,” I travel to Bangladesh to meet with Rahima Banu, the woman. We’ll hear how smallpox shaped her life and wrestle with some of the questions that her reality demands of public health.

I’m Dr. Céline Gounder, and this is “Epidemic.”

[“Epidemic” theme music plays then fades to silence.]

[Ambient sounds of chickens squawking in the courtyard outside of Rahima Banu’s home play.]

Céline Gounder: Many people have tracked down Rahima Banu since 1975.

I’m just the latest in a line of public health specialists and curious journalists.

She lives in a village not far from where smallpox workers found her nearly 50 years ago.

As I enter the courtyard of her home, there are clothes hanging on the line. The house is made from bamboo and corrugated metal. The mud stairs that lead inside are dotted with moss.

Inside is one giant room with a partition. On the far side are cots where the family sleeps. On the near side is a table, where I sit with Rahima.

She introduces herself while her husband and two of her daughters sit behind her.

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: I am Rahima Banu from Bangladesh. Rahima Banu of smallpox fame.

Céline Gounder: Rahima wears a cobalt-blue scarf with white flowers — it’s draped over her head and shoulders and modestly tucked under her chin. A small gold stud sparkles from her nose.

[Sparse music begins playing softly.]

Céline Gounder: She has only a few memories of smallpox. She remembers health workers drawing blood from her fingers, for example. But most of the story that’s made her famous, she knows only from what she’s been told.

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: There were lesions like this all over the body. My mother said that if you poked them with a lemon cutter, the water rolled down all over the body. As the juice of the dates rolled down when being cut, my blood also dripped like that.

Céline Gounder: While Rahima recovered from smallpox, her family was forced to stay at home while the health workers set a mile-and-a-half radius where they monitored every fever and vaccinated every person.

Two guards monitored the doors of Rahima’s home 24 hours a day. Otherwise, Rahima says, her father would have tried to leave to go find work. He was the lone income earner in the family.

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: If he had run away, the disease would have spread to other places. That’s why they did not allow us to go anywhere.

Céline Gounder: Alan Schnur says he hired Rahima’s father so the family would have food and an income while they were isolated. And later — a small group of public health workers tried to cobble together some kind of sustainable support for Rahima’s family.

But, eventually the WHO’s help ended. And, ultimately, attempts to prop up the family’s future fell through.

[Sparse music swells, then fades to silence.]

Céline Gounder: Little Rahima grew up. She married and had a family of her own.

The scars of smallpox are visible on her face, but they are faint. Mostly you notice her eyes. They are warm; her slight smile is welcoming.

But Rahima says when visitors like me come to visit, they mostly want to know one thing: Is she still alive?

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: But no one wants to know how I am living my life with my husband and children, whether I am in a good condition or not, whether I am settled in my life or not.

Céline Gounder: The stories about Rahima are not usually about her life today. They’re about her place in history — as an international symbol of one of the crowning achievements of public health.

But listening to Rahima speak, I’m caught off guard by the pain in her voice.

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: I feel ashamed of my scars. People also felt disgusted. [Rahima cries.]

Céline Gounder: Rahima is in tears. My reporting partner, Redwan, asks Rahima’s daughter to bring some water.

Redwan Ahmed [in Bengali]: Will you give her some water?

[Solemn music begins playing.]

Céline Gounder: She is around 50 years old when I visit — and the faded pockmarks on her body are perhaps the least of what smallpox left behind. Rahima begins to talk about the emotional scars smallpox left on her family, her life.

And how living in poverty has made things even harder. As an adult, when she had health problems, there was no outside care. No public health workers bustling around, ready to help.

She tells me about a time when she had intense vomiting and fevers.

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: I was bedridden for three months, but I still could not go to a good doctor because I could not afford it.

Céline Gounder: Rahima says the doctor she did see prescribed her cooked fish heads. She also had trouble with her vision for years.

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: I cannot thread a needle because I cannot see clearly. I cannot examine the lice on my son’s head. I cannot read the Quran well because of my vision.

[Solemn music fades out.]

Céline Gounder: Rahima and her husband, Rafiqul Islam, have four nearly grown children, three daughters and a son.

The couple’s marriage was arranged, and Rafiqul didn’t know Rahima had had smallpox.

After he found out, people would taunt him, saying he’d married a cursed girl. Still, Rafiqul accepted her.

His family did not.

[Somber music begins playing.]

Céline Gounder: Rahima says her in-laws thought her scars — or smallpox itself — would be passed on to her children.

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: My father-in-law and mother-in-law never touched my children with their fingers like one touches other children.

My father-in-law, mother-in-law, sister-in-law, and brother-in-law never saw me in a good light.

Céline Gounder: Rahima says she is still living in that suffering. Rafiqul becomes tearful as we sit around their table listening. And at times he gets up and stands behind the partition, as if he doesn’t want us to see his emotion.

Rafiqul says he felt powerless watching how his family treated his wife.

[Rafiqul speaking in Bengali fades under English translation.]

Rafiqul Islam: Do you get it? As a husband, I couldn’t do anything to stop my parents or my siblings. One of my sisters did most of the abuse. I couldn’t do anything but stand in a corner as she was abused.

[Somber music ends.]

Céline Gounder: Their middle daughter is named Nazma Begum. She is tall like her dad — you can tell she’s an eager student. For most of Nazma’s life, people like me have come here to talk with her mother about smallpox.

I ask Nazma what it’s like to be the child of an international symbol.

[Nazma speaking in Bengali fades under English translation.]

Nazma Begum: The good effect is that it is nice to see that you and other people come here. When people come, I like that a lot. The way I feel nice when guests come — it is the same feeling. Apart from that, there was no other effect. It did not help me in any way in my studies or financially.

Céline Gounder: The family’s only income is the money Rafiqul earns peddling a rickshaw. On a good day, he brings home 500 takas — not quite 5 U.S. dollars.

Sometimes he brings home nothing.

Nazma finished a year of college, but her parents can’t afford to pay for her education anymore. She seems desperate to go back to school, but at the time of my visit, the family had arranged for her to get married instead.

The cost of a dowry is less than the cost of sending her to school. It’s a common story here in Bangladesh. But, Nazma says, the people who seek out her mother to talk about smallpox are not really curious about Rahima’s children.

[Nazma speaking in Bengali fades under English translation.]

Nazma Begum: What are their children doing? Up to what class have they studied? In what condition are they living? What do their children want? I think that’s what they should have asked more about. But in this matter, they have no interest or do not want to know.

[Reflective music plays softly.]

Céline Gounder: Nazma is talking to me, but maybe she’s indicting me, too.

Journalists, public health experts, and government officials — we all return to Rahima again and again. Whenever there’s a big anniversary. Or when we’re looking for smallpox lessons — to get through the latest pandemic. And it is a story worth telling.

But then we leave. And Rahima is left behind.

We write up our reports, or publish our podcasts — then raise money around that research and journalism.

In these sometimes sanitized stories, the reality of Rahima’s life after smallpox is left out.

She goes back to her family that can’t afford to see a doctor or send their daughter to university.

It feels extractive — as if we take from Rahima only what we need. And I can’t help but wonder whether I owe her something more.

[Reflective music fades out.]

Céline Gounder: There’s this moment from my time with Rahima that I found later, when I was reviewing the tape from the interview. Initially, I missed it because I don’t speak Bengali. While I was adjusting my recording levels, Rahima and the interpreter are talking about how she’ll introduce herself, and she says maybe we could publish that her son is looking for work.

[Clip of Redwan and Rahima speaking Bengali plays in the background.]

Céline Gounder: It’s such a simple request, so core to what’s on her mind and what she wants.

The interpreter is skilled and polite. He tells her he can’t promise anything but maybe it will come up in the interview.

Of course, it doesn’t — at least not exactly. But at the end of our time together, I ask Rahima what she thinks people should know about her experience.

[Optimistic music begins playing.]

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: Who wants to know about me? My only dream was to make my son a man. And I wanted to repair the condition of my house, live a better life with my family, and keep my children well. This is my only dream. If I had some financial ability, I would have arranged my daughter’s marriage to a better family. It is the pride of my heart.

It is my dream. And it is my pride. This is my imagination.

Céline Gounder: There is one way, though, that Rahima says her role in history has helped her family.

Her children did not get smallpox. They don’t live with those particular scars.

[Rahima speaking in Bengali fades under English translation.]

Rahima Banu: It did not happen to anyone, and it will not happen.

[Optimistic music fades out.]

[“Epidemic” theme music plays.]

Céline Gounder: “Eradicating Smallpox,” our latest season of “Epidemic,” is a co-production of KFF Health News and Just Human Productions.

Additional support provided by the Sloan Foundation.

This episode was produced by Zach Dyer, Taylor Cook, and me.

Bram Sable-Smith was scriptwriter for the episode, with help from Zach Dyer and Taunya English.

Redwan Ahmed was our translator and local reporting partner in Bangladesh.

Our managing editor is Taunya English.

Oona Tempest is our graphics and photo editor.

The show was engineered by Justin Gerrish.

We had extra editing help from Simone Popperl.

Voice acting by Rashmi Sharma, Priyanka Joshi, and Paran Thakur.

Music in this episode is from the Blue Dot Sessions and Soundstripe.

We’re powered and distributed by Simplecast.

If you enjoyed the show, please tell a friend. And leave us a review on Apple Podcasts. It helps more people find the show.

Follow KFF Health News on X (formerly known as Twitter), Instagram, and TikTok.

And find me on X @celinegounder. On our socials, there’s more about the ideas we’re exploring on our podcasts.

And subscribe to our newsletters at kffhealthnews.org so you’ll never miss what’s new and important in American health care, health policy, and public health news.

I’m Dr. Céline Gounder. Thanks for listening to this season of “Epidemic.”

[“Epidemic” theme fades to silence.]

Credits

Taunya English
Managing editor

@TaunyaEnglish

Taunya is senior editor for broadcast innovation with KFF Health News, where she leads enterprise audio projects.

Zach Dyer
Senior producer

@zkdyer

Zach is senior producer for audio with KFF Health News, where he supervises all levels of podcast production.

Taylor Cook
Associate producer

@taylormcook7

Taylor is associate audio producer for Season 2 of Epidemic. She researches, writes, and fact-checks scripts for the podcast.

Oona Tempest
Photo editing, design, logo aArt

@oonatempest

Oona is a digital producer and illustrator with KFF Health News. She researched, sourced, and curated the images for the season.

Additional Newsroom Support

Lydia Zuraw, digital producer Tarena Lofton, audience engagement producer Hannah Norman, visual producer and visual reporter Simone Popperl, broadcast editor Chaseedaw Giles, social media manager Mary Agnes Carey, partnerships editor Damon Darlin, executive editor Terry Byrne, copy chief Gabe Brison-Trezise, deputy copy chiefChris Lee, senior communications officer

Additional Reporting Support

Swagata Yadavar, translator and local reporting partner in IndiaRedwan Ahmed, translator and local reporting partner in Bangladesh

“Epidemic” is a co-production of KFF Health News and Just Human Productions.

To hear other KFF Health News podcasts, click here. Subscribe to “Epidemic” on Apple Podcasts, Spotify, Google, Pocket Casts, or wherever you listen to podcasts.

——————————
Title: Epidemic: The Scars of Smallpox
Sourced From: kffhealthnews.org/news/podcast/season-2-episode-8-scars-of-smallpox/
Published Date: Tue, 07 Nov 2023 10:00:00 +0000

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Years Later, Centene Settlements With States Still Unfinished

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18 hours ago

March 5, 2025

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kffhealthnews.org – Andy Miller – 2025-03-05 04:00:00

More than three years ago, health insurance giant Centene Corp. settled allegations that it overcharged Medicaid programs in Ohio and Mississippi related to prescription drug billing.

Now at least 20 states have settled with Centene over its pharmacy benefit manager operation that coordinated the medications for Medicaid patients. Arizona was among the most recent to join the ranks, settling for an undisclosed payout, Richie Taylor, a spokesperson for the state’s attorney general, told KFF Health News in December.

All told, Centene has agreed to pay more than $1 billion in settlements, according to Cohen Milstein, one of the law firms representing states in the agreements. Meanwhile, St. Louis-based Centene reported $163 billion in revenue in 2024, largely proceeds from government health programs for Medicaid, Medicare, and the Affordable Care Act. The health care company has admitted no wrongdoing in the settlements.

Two state holdouts appear to remain: Georgia has yet to settle with Centene, even though the administration of Gov. Brian Kemp hired law firm Liston & Deas in 2019 to investigate state pharmacy benefit operations.

Florida hired the same law firm in 2021 to pursue overbilling allegations involving Centene, but state officials declined to answer a reporter’s questions about whether Florida has dropped the case, reached an undisclosed settlement, or is still discussing the issue.

Neither state has publicly disclosed what’s standing in the way of potentially tens of millions of dollars in Centene payouts, or whether negotiations are taking place. Because the deals are largely occurring outside the court system, the process between the private law firms hired by states and Centene remains generally out of public view.

Centene spokespeople did not return multiple phone calls and emails asking for updates. In 2022, the company said it was working on settlements with Georgia and eight other states, having reached deals with 13 others. And in a Securities and Exchange Commission filing in October, Centene said it had reached settlements with “the vast majority of states impacted” over the operations of its former pharmacy benefits manager.

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Meanwhile, Centene’s Georgia Medicaid plan, the Peach State Health Plan, lost its bid last year to continue its longtime participation in a Georgia Medicaid program in which companies cover the care for Medicaid recipients for a set fee from the government rather than for each medical service provided. The company, which has been part of the contract since the managed-care program began in 2006, filed a protest over the contract awards, saying that the process was “mismanaged, rife with errors and reckless practices.”

Nationally, pharmacy benefit managers, or PBMs, have come under increased scrutiny over accusations of pocketing discounts on medications or inflating costs in the years since Centene started settling its Medicaid-related allegations. Members of Congress have proposed major policy constraints on PBMs. Centene has since overhauled its PBM operation.

Still, a possible settlement in Georgia could bring in significant money to the state. California had the largest publicly disclosed settlement at $215 million, split with the federal government, but a settlement with Georgia could be in the range of the $88 million that Centene agreed to pay in the Ohio dispute, Reybold said.

The state should aggressively pursue a settlement with Centene, said Roland Behm, co-founder of the Georgia Mental Health Policy Partnership, who is a critic of Centene and its Georgia Medicaid plan. Behm said state Attorney General Chris Carr should take “the same tenacious prosecutorial action” against Centene that Carr’s agency takes against individuals involved in fraud against Medicaid, the federal-state program that provides health insurance coverage for those with low incomes or disabilities.

Carr’s office said in 2022 that it stood ready to represent Georgia in settlement negotiations with Centene. Carr, a Republican who has announced he’s running for governor in 2026, received tens of thousands of dollars in campaign contributions from Centene, its subsidiaries, and its executives, as did Kemp, a fellow Republican, KFF Health News reported in 2022. Contributions to the Kemp and Carr campaigns were part of more than $26.9 million that Centene, its subsidiaries, its top executives, and their spouses donated to state politicians in 33 states, to their political parties, and to nonprofit fundraising groups from 2015 through 2022.

Since 2022, the company and its political action committee have contributed, combined, at least $2 million more to the campaigns of Florida and Georgia candidates of both political parties, along with state party organizations and political committees, according to state campaign finance records.

When asked about a possible settlement, a spokesperson for Carr, Kara Murray, directed a reporter to the Georgia Department of Community Health, which administers Medicaid.

Fiona Roberts, a spokesperson for that agency, then told KFF Health News that the department “is actively pursuing options to ensure regulatory compliance with the state’s contract.” She declined to comment further.

Florida’s attorney general’s office directed a reporter to the state agency that oversees Medicaid, the Florida Agency for Health Care Administration. But that agency did not respond to multiple phone calls and emails requesting comment.

Rebecca Grapevine of Healthbeat contributed to this article.

The post Years Later, Centene Settlements With States Still Unfinished appeared first on kffhealthnews.org

Kaiser Health News

Home Improvements Can Help People Age Independently. But Medicare Seldom Picks Up the Bill.

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kffhealthnews.org – Joanne Kenen – 2025-03-03 04:00:00

Chikao Tsubaki had been having a terrible time.

In his mid-80s, he had a stroke. Then lymphoma. Then prostate cancer. He was fatigued, isolated, not all that steady on his feet.

Then Tsubaki took part in an innovative care initiative that, over four months, sent an occupational therapist, a nurse, and a handy worker to his home to help figure out what he needed to stay safe. In addition to grab bars and rails, the handy worker built a bookshelf so neither Tsubaki nor the books he cherished would topple over when he reached for them.

Reading “is kind of the back door for my cognitive health — my brain exercise,” said Tsubaki, a longtime community college teacher. Now 87, he lives independently and walks a mile and a half almost every day.

The program that helped Tsubaki remain independent, called Community Aging in Place: Advancing Better Living for Elders, or CAPABLE, has been around for 15 years and is offered in about 65 places across 26 states. It helps people 60 and up, and some younger people with disabilities or limitations, who want to remain at home but have trouble with activities like bathing, dressing, or moving around safely. Several published studies have found the program saves money and prevents falls, which the Centers for Disease Control and Prevention says contribute to the deaths of 41,000 older Americans and cost Medicare about $50 billion each year.

Despite evidence and accolades, CAPABLE remains small, serving roughly 4,600 people to date. Insurance seldom covers it (although the typical cost of $3,500 to $4,000 per client is less than many health care interventions). Traditional Medicare and most Medicare Advantage private insurance plans don’t cover it. Only four states use funds from Medicaid,the federal-state program for low-income and disabled people. CAPABLE gets by on a patchwork of grants from places like state agencies for aging and philanthropies.

The payment obstacles are an object lesson in how insurers, including Medicare, are built around paying for doctors and hospitals treating people who are injured or sick — not around community services that keep people healthy. Medicare has billing codes for treating a broken hip, but not for avoiding one, let alone for something like having a handy person “tack down loose carpet near stairs.”

And while keeping someone alive longer may be a desirable outcome, it’s not necessarily counted as savings under federal budget rules. A 2017 Centers for Medicare & Medicaid Services evaluation found that CAPABLE had high satisfaction rates and some savings. But its limited size made it hard to assess the long-term economic impact.

It’s unclear how the Trump administration will approach senior care.

The barriers to broader state or federal financing are frustrating, said Sarah Szanton, who helped create CAPABLE while working as a nurse practitioner doing home visits in west Baltimore. Some patients struggled to reach the door to open it for her. One tossed keys to her out of a second-story window, she recalled.

Seeking a solution, Szanton discovered a program called ABLE, which brought an occupational therapist and a handy worker to the home. Inspired by its success, Szanton developed CAPABLE, which added a nurse to check on medications, pain, and mental well-being, and do things like help participants communicate with doctors. It began in 2008. Szanton since 2021 has been the dean of Johns Hopkins University School of Nursing, which coordinates research on CAPABLE. The model is participatory, with the client and care team “problem-solving and brainstorming together,” said Amanda Goodenow, an occupational therapist who worked in hospitals and traditional home health before joining CAPABLE in Denver, where she also works for the CAPABLE National Center, the nonprofit that runs the program.

CAPABLE doesn’t profess to fix all the gaps in U.S. long-term care, and it doesn’t work with all older people. Those with dementia, for example, don’t qualify. But studies show it does help participants live more safely at home with greater mobility. And one study that Szanton co-authored estimated Medicare savings of around $20,000 per person would continue for two years after a CAPABLE intervention.

“To us, it’s so obvious the impact that can be made just in a short amount of time and with a small budget,” said Amy Eschbach, a nurse who has worked with CAPABLE clients in the St. Louis area, where a Medicare Advantage plan covers CAPABLE. That St. Louis program caps spending on home modifications at $1,300 a person.

Both Hill staff and CMS experts who have looked at CAPABLE do see potential routes to broader coverage. One senior Democratic House aide, who asked not to be identified because they were not allowed to speak publicly, said Medicare would have to establish careful parameters. For instance, CMS would have to decide which beneficiaries would be eligible. Everyone in Medicare? Or only those with low incomes? Could Medicare somehow ensure that only necessary home modifications are made — and that unscrupulous contractors don’t try to extract the equivalent of a “copay” or “deductible” from clients?

Szanton said there are safeguards and more could be built in. For instance, it’s the therapists like Goodenow, not the handy workers, who put in the work orders to stay on budget.

For Tsubaki, whose books are not only shelved but organized by topic, the benefits have endured.

“I became more independent. I’m able to handle most of my activities. I go shopping, to the library, and so forth,” he said. His pace is slow, he acknowledged. But he gets there.

Kenen is the journalist-in-residence and a faculty member at Johns Hopkins University School of Public Health. She is not affiliated with the CAPABLE program.

The post Home Improvements Can Help People Age Independently. But Medicare Seldom Picks Up the Bill. appeared first on kffhealthnews.org

Kaiser Health News

A Runner Was Hit by a Car, Then by a Surprise Ambulance Bill

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kffhealthnews.org – Sandy West – 2025-02-28 04:00:00

Sandy West

Jagdish Whitten was on a run in July 2023 when a car hit him as he crossed a busy San Francisco street. Whitten, then 25, described doing “a little flip” over the vehicle and landing in the street before getting himself to the curb.

Concerned onlookers called an ambulance. But Whitten instead had friends pick him up and take him to a nearby hospital, the Helen Diller Medical Center, operated by the University of California-San Francisco.

“I knew that ambulances were expensive, and I didn’t think I was going to die,” he said.

Whitten said doctors treated him for a mild concussion, a broken toe, and bruises.As he sat in a hospital bed, attached to an IV and wearing a neck brace, Whitten said, doctors told him that because he had suffered a traumatic injury, they had to send him by ambulance to the city’s only trauma center, Zuckerberg San Francisco General Hospital.

After a short ambulance ride, Whitten said, emergency room doctors checked him out, told him he had already received appropriate treatment, and released him.

Then the bill came.

The Medical Procedure

Traumatic injuries are those that threaten life or limb, and some facilities specialize in providing care for them. For someone hit by a car, that can include stabilizing vital signs, screening for internal injuries, and treating broken bones and concussions. Zuckerberg Hospital is a Level 1 trauma center, meaning it can provide any care needed for severely injured patients.

In emergency medicine, it is standard to transfer patients to centers best equipped to provide care. Ambulances are typically used for transfers because they are able to handle trauma patients, with tools to aid in resuscitation, immobilization, and life support.

At the first hospital, Whitten said, doctors performed a thorough workup, including a CT scan and X-rays, and advised him to follow up with his primary care physician and an orthopedic doctor. He was evaluated at the second hospital and released without additional treatment, he said.

The Final Bill

$12,872.99 for a 6-mile ambulance ride between hospitals: a $11,670.11 base rate, $737.16 for mileage, $314.45 for EKG monitoring, and $151.27 for “infection control.”

The Billing Problem: Surprise Bills Are Common With Ground Ambulances

Ground ambulance services are operated by a hodgepodge of private and public entities — with no uniform structure, or regulatory oversight, for billing — and most function outside insurance networks. Patients don’t typically have a choice of ambulance provider.

There are state and federal laws shielding patients from out-of-network ambulance bills, but none of those protections applied in Whitten’s case.

Whitten was insured under his father’s employer-sponsored health plan from Anthem Blue Cross. So when he received a nearly $13,000 bill months after his short transfer ride, he sent a photo of it to his dad.

Brian Whitten said the bills from the two hospitals — and the family’s out-of-pocket responsibility — were in line with what he had anticipated. But he was stunned by his son’s ambulance bill from AMR, one of the nation’s largest ambulance providers. Anthem Blue Cross denied the claim, saying the ambulance was out-of-network and required pre-authorization.

“It didn’t make a whole lot of sense to me, because the doctor is the one who put him in the ambulance,” Brian Whitten said. “It’s not like somehow he just decided, ‘Hey, can I take an ambulance ride?’”

Kristen Bole, a UCSF spokesperson, said in a statement that the health system’s standard of care is to stabilize patients and, when appropriate, transfer them to other medical facilities that are most appropriate to care for patients’ needs, adding that ambulance transfers between hospitals are standard practice.

While the medical system at large relies on negotiated prices for services, ambulance services operate largely outside of the competitive marketplace, said Patricia Kelmar, senior director of health care campaigns for PIRG, a nonpartisan consumer protection and good-government advocacy organization.

Ambulance transfers between hospitals to ensure the highest quality of care available are fairly common, Kelmar said. And with many hospitals being purchased and consolidated, it would follow that the number of ambulance transfers between facilities could increase as specialized medical units at any given hospital are downsized or eliminated, she said.

According to a study of private insurance claims data conducted in 2023, about 80% of ground ambulance rides resulted in out-of-network billing.

Generally, out-of-network providers may charge patients for the remainder of their bill after insurance pays. In some cases, patients can be on the hook even when they did not knowingly choose the out-of-network provider. These bills are known as “surprise” bills.

“It’s a financial burden, a significant financial burden,” said Kelmar, who is a member of the committee created to advise federal lawmakers on surprise bills and emergency ambulance transportation.

Eighteen states have implemented laws regulating surprise ambulance billing. A California law cracking down on surprise ambulance billing took effect on Jan. 1, 2024 — months after Jagdish Whitten’s ambulance ride.But Kelmar said those state laws don’t really help people with employer-sponsored insurance, because those plans are beyond state control — which is why federal legislation is so important, she said.

As of 2022, federal law protects patients from receiving some surprise bills, especially for emergency services. But while lawmakers included protections against air ambulance bills in the law, known as the No Surprises Act, they excluded ground ambulance transports.

The Resolution

Whitten’s father filed an insurance appeal on his son’s behalf, which Anthem granted. The insurer paid AMR $9,966.60.

Michael Bowman, a spokesperson for Anthem, said AMR had not submitted all the information it required to process the claim, leading to the initial denial. After consulting with AMR, Anthem paid its coverage amount, Bowman said.

But the insurer’s payment still left Whitten with a $2,906.39 bill for his out-of-network ambulance ride. Brian Whitten said he called an AMR customer service number several times to contest the remaining charges but was unable to bypass its automated system and speak with a human.

“I couldn’t find a way to talk to somebody about this bill other than how to pay it, and I didn’t want to pay it,” he said.

Unsuccessful and frustrated, Brian Whitten paid the remaining bill in January 2024, he said, concerned it would be turned over to a collection agency and hurt his son’s credit — and his well-being.

There was one more twist: He was shocked when he later reviewed his credit card statements and discovered that AMR had quietly but fully refunded his payment in October.

“It’s amazing that he got his money back,” Kelmar said. “That’s what’s shocking.”

In a statement, Suzie Robinson, vice president of revenue cycle management with AMR, said the company’s third-party billing agency regularly performs audits to ensure accuracy. An audit of Jagdish Whitten’s bill “revealed that the care provided did not meet the criteria for critical care,” Robinson said, which prompted the full refund.

Robinson said audits indicated fewer than 1% of its 4 million medical encounters annually are billed incorrectly.

The Takeaway

Robinson said patients who feel that AMR has billed them incorrectly should contact the company via email.

For patients in need of an ambulance in an emergency, there are few protections — and usually few options: Sometimes you don’t have a better choice than to get in.

Federal protections require that health plans cover certain surprise bills, with patients paying only what they would if they had received in-network care. Expanding those protections to ground ambulance bills would require Congress to act.

Ambulance providers deserve to be appropriately compensated for their vital role in our medical system, Kelmar said. But the system as it stands almost incentivizes providers to charge a higher rate, which can lead to surprise billing and financial hardship for patients and their families, she said.

Kelmar said she worries not just about the debt those bills create for consumers but also that people may decline vital ambulance transportation in an emergency, for fear of getting hit with an exorbitant bill.

“We just need to bring some sense back to the system,” she said.

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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