Kaiser Health News
Epidemic: The Scars of Smallpox
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
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
Taunya is senior editor for broadcast innovation with KFF Health News, where she leads enterprise audio projects.
Zach Dyer
Senior producer
Zach is senior producer for audio with KFF Health News, where he supervises all levels of podcast production.
Taylor Cook
Associate producer
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
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
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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
Kaiser Health News
Dual Threats From Trump and GOP Imperil Nursing Homes and Their Foreign-Born Workers
In a top-rated nursing home in Alexandria, Virginia, the Rev. Donald Goodness is cared for by nurses and aides from various parts of Africa. One of them, Jackline Conteh, a naturalized citizen and nurse assistant from Sierra Leone, bathes and helps dress him most days and vigilantly intercepts any meal headed his way that contains gluten, as Goodness has celiac disease.
“We are full of people who come from other countries,” Goodness, 92, said about Goodwin House Alexandria’s staff. Without them, the retired Episcopal priest said, “I would be, and my building would be, desolate.”
The long-term health care industry is facing a double whammy from President Donald Trump’s crackdown on immigrants and the GOP’s proposals to reduce Medicaid spending. The industry is highly dependent on foreign workers: More than 800,000 immigrants and naturalized citizens comprise 28% of direct care employees at home care agencies, nursing homes, assisted living facilities, and other long-term care companies.
But in January, the Trump administration rescinded former President Joe Biden’s 2021 policy that protected health care facilities from Immigration and Customs Enforcement raids. The administration’s broad immigration crackdown threatens to drastically reduce the number of current and future workers for the industry. “People may be here on a green card, and they are afraid ICE is going to show up,” said Katie Smith Sloan, president of LeadingAge, an association of nonprofits that care for older adults.
Existing staffing shortages and quality-of-care problems would be compounded by other policies pushed by Trump and the Republican-led Congress, according to nursing home officials, resident advocates, and academic experts. Federal spending cuts under negotiation may strip nursing homes of some of their largest revenue sources by limiting ways states leverage Medicaid money and making it harder for new nursing home residents to retroactively qualify for Medicaid. Care for 6 in 10 residents is paid for by Medicaid, the state-federal health program for poor or disabled Americans.
“We are facing the collision of two policies here that could further erode staffing in nursing homes and present health outcome challenges,” said Eric Roberts, an associate professor of internal medicine at the University of Pennsylvania.
The industry hasn’t recovered from covid-19, which killed more than 200,000 long-term care facility residents and workers and led to massive staff attrition and turnover. Nursing homes have struggled to replace licensed nurses, who can find better-paying jobs at hospitals and doctors’ offices, as well as nursing assistants, who can earn more working at big-box stores or fast-food joints. Quality issues that preceded the pandemic have expanded: The percentage of nursing homes that federal health inspectors cited for putting residents in jeopardy of immediate harm or death has risen alarmingly from 17% in 2015 to 28% in 2024.
In addition to seeking to reduce Medicaid spending, congressional Republicans have proposed shelving the biggest nursing home reform in decades: a Biden-era rule mandating minimum staffing levels that would require most of the nation’s nearly 15,000 nursing homes to hire more workers.
The long-term care industry expects demand for direct care workers to burgeon with an influx of aging baby boomers needing professional care. The Census Bureau has projected the number of people 65 and older would grow from 63 million this year to 82 million in 2050.
In an email, Vianca Rodriguez Feliciano, a spokesperson for the Department of Health and Human Services, said the agency “is committed to supporting a strong, stable long-term care workforce” and “continues to work with states and providers to ensure quality care for older adults and individuals with disabilities.” In a separate email, Tricia McLaughlin, a Department of Homeland Security spokesperson, said foreigners wanting to work as caregivers “need to do that by coming here the legal way” but did not address the effect on the long-term care workforce of deportations of classes of authorized immigrants.
Goodwin Living, a faith-based nonprofit, runs three retirement communities in northern Virginia for people who live independently, need a little assistance each day, have memory issues, or require the availability of around-the-clock nurses. It also operates a retirement community in Washington, D.C. Medicare rates Goodwin House Alexandria as one of the best-staffed nursing homes in the country. Forty percent of the organization’s 1,450 employees are foreign-born and are either seeking citizenship or are already naturalized, according to Lindsay Hutter, a Goodwin spokesperson.
“As an employer, we see they stay on with us, they have longer tenure, they are more committed to the organization,” said Rob Liebreich, Goodwin’s president and CEO.
Jackline Conteh spent much of her youth shuttling between Sierra Leone, Liberia, and Ghana to avoid wars and tribal conflicts. Her mother was killed by a stray bullet in her home country of Liberia, Conteh said. “She was sitting outside,” Conteh, 56, recalled in an interview.
Conteh was working as a nurse in a hospital in Sierra Leone in 2009 when she learned of a lottery for visas to come to the United States. She won, though she couldn’t afford to bring her husband and two children along at the time. After she got a nursing assistant certification, Goodwin hired her in 2012.
Conteh said taking care of elders is embedded in the culture of African families. When she was 9, she helped feed and dress her grandmother, a job that rotated among her and her sisters. She washed her father when he was dying of prostate cancer. Her husband joined her in the United States in 2017; she cares for him because he has heart failure.
“Nearly every one of us from Africa, we know how to care for older adults,” she said.
Her daughter is now in the United States, while her son is still in Africa. Conteh said she sends money to him, her mother-in-law, and one of her sisters.
In the nursing home where Goodness and 89 other residents live, Conteh helps with daily tasks like dressing and eating, checks residents’ skin for signs of swelling or sores, and tries to help them avoid falling or getting disoriented. Of 102 employees in the building, broken up into eight residential wings called “small houses” and a wing for memory care, at least 72 were born abroad, Hutter said.
Donald Goodness grew up in Rochester, New York, and spent 25 years as rector of The Church of the Ascension in New York City, retiring in 1997. He and his late wife moved to Alexandria to be closer to their daughter, and in 2011 they moved into independent living at the Goodwin House. In 2023 he moved into one of the skilled nursing small houses, where Conteh started caring for him.
“I have a bad leg and I can’t stand on it very much, or I’d fall over,” he said. “She’s in there at 7:30 in the morning, and she helps me bathe.” Goodness said Conteh is exacting about cleanliness and will tell the housekeepers if his room is not kept properly.
Conteh said Goodness was withdrawn when he first arrived. “He don’t want to come out, he want to eat in his room,” she said. “He don’t want to be with the other people in the dining room, so I start making friends with him.”
She showed him a photo of Sierra Leone on her phone and told him of the weather there. He told her about his work at the church and how his wife did laundry for the choir. The breakthrough, she said, came one day when he agreed to lunch with her in the dining room. Long out of his shell, Goodness now sits on the community’s resident council and enjoys distributing the mail to other residents on his floor.
“The people that work in my building become so important to us,” Goodness said.
While Trump’s 2024 election campaign focused on foreigners here without authorization, his administration has broadened to target those legally here, including refugees who fled countries beset by wars or natural disasters. This month, the Department of Homeland Security revoked the work permits for migrants and refugees from Cuba, Haiti, Nicaragua, and Venezuela who arrived under a Biden-era program.
“I’ve just spent my morning firing good, honest people because the federal government told us that we had to,” Rachel Blumberg, president of the Toby & Leon Cooperman Sinai Residences of Boca Raton, a Florida retirement community, said in a video posted on LinkedIn. “I am so sick of people saying that we are deporting people because they are criminals. Let me tell you, they are not all criminals.”
At Goodwin House, Conteh is fearful for her fellow immigrants. Foreign workers at Goodwin rarely talk about their backgrounds. “They’re scared,” she said. “Nobody trusts anybody.” Her neighbors in her apartment complex fled the U.S. in December and returned to Sierra Leone after Trump won the election, leaving their children with relatives.
“If all these people leave the United States, they go back to Africa or to their various countries, what will become of our residents?” Conteh asked. “What will become of our old people that we’re taking care of?”
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Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.
Political Bias Rating: Center-Left
This content primarily highlights concerns about the impact of restrictive immigration policies and Medicaid spending cuts proposed by the Trump administration and Republican lawmakers on the long-term care industry. It emphasizes the importance of immigrant workers in healthcare, the challenges that staffing shortages pose to patient care, and the potential negative effects of GOP policy proposals. The tone is critical of these policies while sympathetic toward immigrant workers and advocates for maintaining or increasing government support for healthcare funding. The framing aligns with a center-left perspective, focusing on social welfare, immigrant rights, and concern about the consequences of conservative economic and immigration policies without descending into partisan rhetoric.
Kaiser Health News
California’s Much-Touted IVF Law May Be Delayed Until 2026, Leaving Many in the Lurch
California lawmakers are poised to delay the state’s much-ballyhooed new law mandating in vitro fertilization insurance coverage for millions, set to take effect July 1. Gov. Gavin Newsom has asked lawmakers to push the implementation date to January 2026, leaving patients, insurers, and employers in limbo.
The law, SB 729, requires state-regulated health plans offered by large employers to cover infertility diagnosis and treatment, including IVF. Nine million people will qualify for coverage under the law. Advocates have praised the law as “a major win for Californians,” especially in making same-sex couples and aspiring single parents eligible, though cost concerns limited the mandate’s breadth.
People who had been planning fertility care based on the original timeline are now “left in a holding pattern facing more uncertainty, financial strain, and emotional distress,” Alise Powell, a director at Resolve: The National Infertility Association, said in a statement.
During IVF, a patient’s eggs are retrieved, combined with sperm in a lab, and then transferred to a person’s uterus. A single cycle can total around $25,000, out of reach for many. The California law requires insurers to cover up to three egg retrievals and an unlimited number of embryo transfers.
Not everyone’s coverage would be affected by the delay. Even if the law took effect July 1, it wouldn’t require IVF coverage to start until the month an employer’s contract renews with its insurer. Rachel Arrezola, a spokesperson for the California Department of Managed Health Care, said most of the employers subject to the law renew their contracts in January, so their employees would not be affected by a delay.
She declined to provide data on the percentage of eligible contracts that renew in July or later, which would mean those enrollees wouldn’t get IVF coverage until at least a full year from now, in July 2026 or later.
The proposed new implementation date comes amid heightened national attention on fertility coverage. California is now one of 15 states with an IVF mandate, and in February, President Donald Trump signed an executive order seeking policy recommendations to expand IVF access.
It’s the second time Newsom has asked lawmakers to delay the law. When the Democratic governor signed the bill in September, he asked the legislature to consider delaying implementation by six months. The reason, Newsom said then, was to allow time to reconcile differences between the bill and a broader effort by state regulators to include IVF and other fertility services as an essential health benefit, which would require the marketplace and other individual and small-group plans to provide the coverage.
Newsom spokesperson Elana Ross said the state needs more time to provide guidance to insurers on specific services not addressed in the law to ensure adequate and uniform coverage. Arrezola said embryo storage and donor eggs and sperm were examples of services requiring more guidance.
State Sen. Caroline Menjivar, a Democrat who authored the original IVF mandate, acknowledged a delay could frustrate people yearning to expand their families, but requested patience “a little longer so we can roll this out right.”
Sean Tipton, a lobbyist for the American Society for Reproductive Medicine, contended that the few remaining questions on the mandate did not warrant a long delay.
Lawmakers appear poised to advance the delay to a vote by both houses of the legislature, likely before the end of June. If a delay is approved and signed by the governor, the law would immediately be paused. If this does not happen before July 1, Arrezola said, the Department of Managed Health Care would enforce the mandate as it exists. All plans were required to submit compliance filings to the agency by March. Arrezola was unable to explain what would happen to IVF patients whose coverage had already begun if the delay passes after July 1.
The California Association of Health Plans, which opposed the mandate, declined to comment on where implementation efforts stand, although the group agrees that insurers need more guidance, spokesperson Mary Ellen Grant said.
Kaiser Permanente, the state’s largest insurer, has already sent employers information they can provide to their employees about the new benefit, company spokesperson Kathleen Chambers said. She added that eligible members whose plans renew on or after July 1 would have IVF coverage if implementation of the law is not delayed.
Employers and some fertility care providers appear to be grappling over the uncertainty of the law’s start date. Amy Donovan, a lawyer at insurance brokerage and consulting firm Keenan & Associates, said the firm has fielded many questions from employers about the possibility of delay. Reproductive Science Center and Shady Grove Fertility, major clinics serving different areas of California, posted on their websites that the IVF mandate had been delayed until January 2026, which is not yet the case. They did not respond to requests for comment.
Some infertility patients confused over whether and when they will be covered have run out of patience. Ana Rios and her wife, who live in the Central Valley, had been trying to have a baby for six years, dipping into savings for each failed treatment. Although she was “freaking thrilled” to learn about the new law last fall, Rios could not get clarity from her employer or health plan on whether she was eligible for the coverage and when it would go into effect, she said. The couple decided to go to Mexico to pursue cheaper treatment options.
“You think you finally have a helping hand,” Rios said of learning about the law and then, later, the requested delay. “You reach out, and they take it back.”
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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This story can be republished for free (details).
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
This article first appeared on KFF Health News and is republished here under a Creative Commons license.
The post California’s Much-Touted IVF Law May Be Delayed Until 2026, Leaving Many in the Lurch appeared first on kffhealthnews.org
Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.
Political Bias Rating: Center-Left
This content is presented in a factual, balanced manner typical of center-left public policy reporting. It focuses on a progressive healthcare issue (mandated IVF insurance coverage) favorably highlighting benefits for diverse family structures and individuals, including same-sex couples and single parents, which often aligns with center-left values. At the same time, it includes perspectives from government officials, industry representatives, opponents, and patients, offering a nuanced view without overt ideological framing or partisan rhetoric. The emphasis on healthcare access, social equity, and patient impact situates the coverage within a center-left orientation.
Kaiser Health News
Push To Move OB-GYN Exam Out of Texas Is Piece of AGs’ Broader Reproductive Rights Campaign
Democratic state attorneys general led by those from California, New York, and Massachusetts are pressuring medical professional groups to defend reproductive rights, including medication abortion, emergency abortions, and travel between states for health care in response to recent increases in the number of abortion bans.
The American Medical Association adopted a formal position June 9 recommending that medical certification exams be moved out of states with restrictive abortion policies or made virtual, after 20 attorneys general petitioned to protect physicians who fear legal repercussions because of their work. The petition focused on the American Board of Obstetrics and Gynecology’s certification exams in Dallas, and the subsequent AMA recommendation was hailed as a win for Democrats trying to regain ground after the fall of Roe v. Wade.
“It seems incremental, but there are so many things that go into expanding and maintaining access to care,” said Arneta Rogers, executive director of the Center on Reproductive Rights and Justice at the University of California-Berkeley’s law school. “We see AGs banding together, governors banding together, as advocates work on the ground. That feels somewhat more hopeful — that people are thinking about a coordinated strategy.”
Since the Supreme Court eliminated the constitutional right to an abortion in 2022, 16 states, including Texas, have implemented laws banning abortion almost entirely, and many of them impose criminal penalties on providers as well as options to sue doctors. More than 25 states restrict access to gender-affirming care for trans people, and six of them make it a felony to provide such care to youth.
That’s raised concern among some physicians who fear being charged if they go to those states, even if their home state offers protection to provide reproductive and gender-affirming health care.
Pointing to the recent fining and indictment of a physician in New York who allegedly provided abortion pills to a woman in Texas and a teen in Louisiana, a coalition of physicians wrote in a letter to the American Board of Obstetrics and Gynecology that “the limits of shield laws are tenuous” and that “Texas laws can affect physicians practicing outside of the state as well.”
The campaign was launched by several Democratic attorneys general, including Rob Bonta of California, Andrea Joy Campbell of Massachusetts, and Letitia James of New York, who each have established a reproductive rights unit as a bulwark for their state following the Dobbs decision.
“Reproductive health care and gender-affirming care providers should not have to risk their safety or freedom just to advance in their medical careers,” James said in a statement. “Forcing providers to travel to states that have declared war on reproductive freedom and LGBTQ+ rights is as unnecessary as it is dangerous.”
In their petition, the attorneys general included a letter from Joseph Ottolenghi, medical director at Choices Women’s Medical Center in New York City, who was denied his request to take the test remotely or outside of Texas. To be certified by the American Board of Obstetrics and Gynecology, physicians need to take the in-person exam at its testing facility in Dallas. The board completed construction of its new testing facility last year.
“As a New York practitioner, I have made every effort not to violate any other state’s laws, but the outer contours of these draconian laws have not been tested or clarified by the courts,” Ottolenghi wrote.
Rachel Rebouché, the dean of Temple University’s law school and a reproductive law scholar, said “putting the heft” of the attorneys general behind this effort helps build awareness and a “public reckoning” on behalf of providers. Separately, some doctors have urged medical conferences to boycott states with abortion bans.
Anti-abortion groups, however, see the campaign as forcing providers to conform to abortion-rights views. Donna Harrison, an OB-GYN and the director of research at the American Association of Pro-Life Obstetricians and Gynecologists, described the petition as an “attack not only on pro-life states but also on life-affirming medical professionals.”
Harrison said the “OB-GYN community consists of physicians with values that are as diverse as our nation’s state abortion laws,” and that this diversity “fosters a medical environment of debate and rigorous thought leading to advancements that ultimately serve our patients.”
The AMA’s new policy urges specialty medical boards to host exams in states without restrictive abortion laws, offer the tests remotely, or provide exemptions for physicians. However, the decision to implement any changes to the administration of these exams is up to those boards. There is no deadline for a decision to be made.
The OB-GYN board did not respond to requests for comment, but after the public petition from the attorneys general criticizing it for refusing exam accommodations, the board said that in-person exams conducted at its national center in Dallas “provide the most equitable, fair, secure, and standardized assessment.”
The OB-GYN board emphasized that Texas’ laws apply to doctors licensed in Texas and to medical care within Texas, specifically. And it noted that its exam dates are kept under wraps, and that there have been “no incidents of harm to candidates or examiners across thousands of in-person examinations.”
Democratic state prosecutors, however, warned in their petition that the “web of confusing and punitive state-based restrictions creates a legal minefield for medical providers.” Texas is among the states that have banned doctors from providing gender-affirming care to transgender youth, and it has reportedly made efforts to get records from medical facilities and professionals in other states who may have provided that type of care to Texans.
The Texas attorney general’s office did not respond to requests for comment.
States such as California and New York have laws to block doctors from being extradited under other states’ laws and to prevent sharing evidence against them. But instances that require leveraging these laws could still mean lengthy legal proceedings.
“We live in a moment where we’ve seen actions by executive bodies that don’t necessarily square with what we thought the rules provided,” Rebouché said.
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
This article first appeared on KFF Health News and is republished here under a Creative Commons license.
The post Push To Move OB-GYN Exam Out of Texas Is Piece of AGs’ Broader Reproductive Rights Campaign appeared first on kffhealthnews.org
Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.
Political Bias Rating: Center-Left
The article presents a viewpoint largely aligned with progressive and Democratic positions on reproductive rights and gender-affirming care. It highlights efforts led by Democratic attorneys general and the American Medical Association to protect abortion access and transgender healthcare amid restrictive state laws, portraying these actions positively. While it includes perspectives from anti-abortion advocates, their views are presented briefly and framed as opposition to the broader pro-choice initiatives. The overall tone and framing emphasize support for reproductive freedom and healthcare protections, reflecting a center-left leaning stance typical of mainstream health policy reporting sympathetic to Democratic policy goals.
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