Mayor Helena Moreno signed an on April 7 that creates a task force to improve the New Orleans Recreation Development Commission. One of the task force’s duties will be to “consider and make recommendations regarding the costs and practicalities of implementing a program to assess and remediate safety and environmental concerns at NORDC facilities and playgrounds, including the existence of lead in soil” and other environmental issues, according to the order.

About a week before Moreno signed that order, Deputy Mayor of Health and Human Services Jennifer Avegno announced that city officials were working with the state’s congressional delegation to request $5 million in federal funds for the federal fiscal year that starts in October. That money would go toward testing and the possible cleanup of playgrounds with elevated levels of lead. She said her office is also reviewing past city records, working with the city’s in-house experts in its Planning Commission’s Brownfield Program, and reviewing Verite’s soil test results.

“We’re trying to figure out, with whatever pots of money we can get, how can we make a more sustained and meaningful impact than we have been able to in the past?” Avegno said during an of Verite’s lead contamination investigation.

In the investigation published in February, Verite reporters tested more than 80 playgrounds for lead and documented unsafe levels of the toxic metal at just over half of them. Since then, parents across the city have called the New Orleans Recreation Development Commission, their elected officials, and other city offices seeking action.

But with the city in the midst of a budget crisis, parents and community groups in one neighborhood are taking action themselves. They are trying to raise $8,000 to hire a contractor to do extensive testing in the Bywater neighborhood’s Mickey Markey Playground, where Verite recorded lead samples that exceeded the federal hazard level of 200 parts per million — one sample registered at 403 parts per million.

“I’m aware of the city budget issues right now, and I’m also aware that fixing one playground in one neighborhood might not be a giant priority,” said Devin DeWulf, a father of two who lives in Bywater and founded the , a community organization helping with the fundraising.

Lead contamination persists in New Orleans soil, older buildings, and drinking water, posing a significant public health threat to children. Children under 6 can absorb the toxic metal more easily than adults, contaminating their blood and harming the long-term development of their brains and nervous systems.

There is no known safe exposure level for children or adults. In children, even trace amounts can result in behavioral problems and lower cognitive abilities. Chronic lead exposure for adults can increase the risk of heart problems and other health issues.

Beyond the effects on a single child or family, Avegno said, lead exposure has long-term implications, including its , which makes the issue even more critical.

“We knew we had to exhaust every avenue,” she said.

Due to low rates of testing, it’s unclear how many children across New Orleans are exposed to lead. In 2023, just 17% of children were tested for lead poisoning in New Orleans, despite a that requires medical providers to test all children by age 1 and again by 2. Currently, the state Department of Health doesn’t have a mechanism for enforcing the law.

Public health researchers recommend parents avoid playgrounds with lead contamination because it can be difficult to prevent young children from placing dirt in their mouths or breathing in dust kicked up during play.

Vann Joines, a Bywater neighborhood resident who often takes his 2-year-old daughter to Mickey Markey Playground, is part of the group raising money to independently test the playground.

“It’s really important for us to be exceedingly mindful at public playgrounds and at public parks,” Joines said.

DeWulf and Joines said they anticipate the work will take a few years and hope to create a playbook that other neighborhoods can follow for their own playgrounds.

“We could create a how-to guide on how we could effectively do this in partnerships in the city,” Joines said.

On top of the $5 million the city is requesting for soil testing and possible remediation, Avegno said the city planned to apply for a grant to help address lead at early childhood education centers.

“Your story was amazing timing,” she told a Verite reporter.

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That’s the case in New Orleans, where an investigation by Verite News found high lead levels in about half of the playgrounds on city property and found in most homes that tested their drinking water in a voluntary program.

No level of lead exposure is safe, according to federal environmental officials, but undertaking a comprehensive cleanup can be financially prohibitive. New Orleans is facing a $220 million budget deficit that has led to city employee furloughs and layoffs.

Congress allocated $15 billion over five years to lead pipe replacement under the Bipartisan Infrastructure Law, a Biden-era measure set to expire at the end of this year. In 2024, the Environmental Protection Agency also tightened the standards for lead-contaminated soil for the first time in 30 years and mandated that water systems by late 2037.

But passed by Congress and signed by President Donald Trump in January redirected $125 million of that lead remediation money to wildfire prevention. And since October, the EPA has partially rolled back protections against soil contamination, raising the federal hazard level in urban areas and the threshold for removing contaminated soil.

Tom Neltner, the national director of the nonprofit advocacy group Unleaded Kids, said it was the first time an administration had loosened the limits on lead in soil.

“ We’ve seen the Trump administration say positive things about its commitment to lead but then take actions that undermine that,” Neltner said.

But, he added, progress is still being made in some communities.

EPA press secretary Brigit Hirsch said the changes made under the Trump administration have reduced confusion and uncertainty that could hamper cleanup efforts.

“The Trump EPA’s record on protecting Americans — especially American children — from lead is unmatched,” Hirsch said in an emailed statement. “In just the last year, the Trump EPA backed up its commitment to reducing lead exposure in children with BILLIONS of dollars and historic action.”

She cited a of $3 billion available to pay for water pipe replacement. That money is from the passed during the Biden administration.

Verite News spoke with people in Michigan, Indiana, and Rhode Island to learn how they addressed their lead pollution, with the aim of finding options that could be applied in New Orleans and other cities.

“ We don’t need to do research on lead anymore,” said Tulane University professor Felicia Rabito, an epidemiologist who researches the toxic metal and its sources. “What we need are policies to get the lead out of the environment.”

Benton Harbor, Michigan: Lead Pipes Begone

Benton Harbor, a predominantly Black beach town of about 9,000 people on the southeastern shore of Lake Michigan, spent three years out of compliance with federal drinking water standards. The concentration of lead in the water remained dangerously high until residents and organizations petitioned the EPA in 2021, drawing responses from state and federal officials.

“Nobody should be drinking lead in their water for this long,” said Elin Betanzo, an engineer who provided the petitioning residents with technical support.

That year, federal officials issued an for the Michigan city to bring its water supply into compliance, and the state required Benton Harbor to replace all its lead pipes within 18 months. Gov. Gretchen Whitmer, a Democrat, committed to securing funding in the state budget for the $35 million effort, which included bottled water distribution and paying outstanding water bills for low-income residents. The state, alongside the city, allocated money from its general fund, secured regional water loans, and cobbled together grants from several federal programs to cover the total.

By the end of 2023, city officials had completed the project. Now it’s one of 21 municipalities in Michigan that have replaced all their lead pipes. Benton Harbor had more than 4,500 pipes to replace.

The Trump administration has said it would defend the Biden-era mandate for lead pipe replacement by 2037 against a lawsuit challenging it.

Betanzo recommended that utilities in other cities reduce barriers to line replacement to increase efficiency, as Benton Harbor’s water system did.

City officials saved time after assuming most pipes would be lead. They decided to go street by street, digging up, inspecting, and replacing nearly every pipe. If the pipe wasn’t lead, it wasn’t replaced, but nearly all were, Betanzo said.

Concentrating the mass replacement in one zone at a time made the contracts more cost-effective, Betanzo added. Contractors bid on zones in the city, and multiple contractors worked in different neighborhoods simultaneously. For transparency, progress was published on a public database.

The city also passed a law requiring lead lines be replaced, including those on customers’ side of the water meter. All residents had to allow the contractors onto their property or face disconnection. The residents didn’t pay for the line replacements.

“ The health benefits of lead service line replacement are greatest the sooner you get it done,” Betanzo noted, referencing a she co-authored. “If you do it wrong, you can absolutely increase exposure to lead through a lead service line replacement.”

Completion of full pipe replacement is rare in the U.S., because of the cost, poor service line tracking, the time it takes, and the prioritization of other issues. In New Orleans, the process could require up to $1 billion of investment over 10 years, according to the city’s Sewerage and Water Board.

Indianapolis: Safe Dirt for Kids

It’s not just lead pipes that are problematic. In 2024, a in the academic journal GeoHealth estimated that nearly a quarter of homes in the U.S. have unsafe levels of lead in the soil on their properties.

To that end, Indianapolis has taken some actions that other cities can learn from, said Gabriel Filippelli, a professor at the Indiana University-Indianapolis School of Science who led the study and has researched the risk of lead exposure through soil for years.

The Indy Parks & Recreation department partnered with Filippelli’s team to test a dozen parks relatively close to the contaminated site of a shuttered lead smelter.

Out of all the parks tested, Filippelli’s team found only one hot spot, beneath an old bench from which lead-based paint had flaked off into the surrounding soil.

The parks department followed Filippelli’s suggestion to replace the bench and add concrete and a thick layer of mulch and plants on the ground, so kids wouldn’t be able to play directly in the contaminated dirt.

“It was a relatively low-cost intervention,” he said, estimating it cost a few thousand dollars. The ground wasn’t excavated, and new dirt wasn’t brought in. “If you deal with it by dilution and by capping, remove the source, you’re solving the problem for today and probably many, many years to come.”

The contaminated dirt may need to be removed in some cases and replaced with clean soil, such as after severe, widespread pollution from industrial sources. But Filippelli said such extensive remediation can be impractical and too expensive for cities to undertake on their own.

Where full remediation is cost-prohibitive, Filippelli said, there are more creative solutions, like landscaping, covering the area with new dirt, or mulching. These methods won’t eliminate the lead entirely, but they will significantly reduce exposure risk.

“You can eliminate the hazard at a fraction of the cost,” he said.

Cities could also look to New York City’s , which places uncontaminated soil left over from construction projects in neighborhood-level banks for volunteers to distribute, he said.

Rhode Island: Stopping Lead at the Source

New England, home to some of the nation’s oldest homes, has led the U.S. in mitigating one of the largest ongoing sources of lead contamination: paint.

In 2023, the state legislature in Rhode Island, where most of the homes were built before lead paint was banned in 1978, passed strengthening the state’s ability to enforce tenant protections.

Prior to 2023, the state had long required most landlords to have their property inspected to ensure it met “lead safe” guidelines, said DeeAnn Guo, a community organizer for the . Although no level of lead is considered safe, replacing windows and doors that have lead paint, painting over all interior and exterior walls, and mitigating contaminated soil significantly reduce the risk of exposure.

But for years “there was no incentive to do it,” Guo said, “aside from it being the right thing to do.”

Now, landlords can be fined if they don’t have an active lead certificate on file for homes built before 1978, and the property has to be inspected every two years to remain in compliance. Before the new law, less than 15% of rentals were certified. In late 2025, that had increased to 40%, Guo said.

The state has also seen a steady decline in the in children’s blood.

Guo said it helps that the state has federal funding from the Department of Housing and Urban Development to subsidize its If a homeowner or landlord owns an old house, they can apply for the state to send an inspector. If lead is found, the state will then send a certified contractor to address the problem at little to no cost to the property owner.

Rhode Island prioritizes low-income households and homes with pregnant women or children under 6 years old, because of the heightened health risk. It can also help pay to remediate homes if a child living there has elevated levels of lead in their blood.

States and communities looking to start a successful lead paint abatement program using HUD money should combine strong enforcement, public education, and offers of subsidies, Guo said. It also helps to include community members in the planning process, she said.

Under the Trump administration, however, it might become harder for more communities like New Orleans to receive money for a “lead safe” program. Last year, HUD asked Congress to eliminate new funding for its lead hazards program, stating it would be restored in 2027. But advocates for more lead protections argue that once funding is lost, it is unlikely to be approved again.

“It shows the White House’s hypocrisy, where they talk about lead as being important and then propose eliminating the funds that are essential to cleaning up affordable housing,” said Neltner, the Unleaded Kids director. “This administration talks about the importance of children and then seems to be careless about children’s brains.”

This article was produced in collaboration with . The four-month investigation was supported by a Kozik Environmental Justice Reporting grant funded by the National Press Foundation and the National Press Club Journalism Institute. It was also produced as a project for the USC Annenberg Center for Health Journalism’s National Fellowship fund and Dennis A. Hunt Fund for Health Journalism.

Ñî¹óåú´«Ã½Ò•îl 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 .

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This story can be republished for free (details).

After a routine doctor visit revealed Josie had lead poisoning, Hess quickly traced the source to the crumbling paint in her family’s century-old home in the Bayou St. John neighborhood. While it underwent lead remediation, the family stayed in a newer, lead-free house near Markey.

“Everyone was telling us the safest place to play was outside at playgrounds, so that’s where we went,” Hess said. Josie became a Markey regular, playing on the swings and slides.

Josie’s next blood test was a shock. “It skyrocketed,” Hess said. Josie’s lead levels had leaped to nearly five times the national health standard. The likely culprit, according to scientists at the time, was Josie’s favorite park. Soil testing found it had dangerously high levels of lead.

City officials took no action to inform Markey’s users or make the park safe. But parents started posting warning signs at the park and flooded City Hall with calls and emails. With Josie on her hip, Hess made an impassioned speech at a City Council meeting.

In short order, the city hired a company to test Markey and other parks and pledged to fix the lead problem wherever it was found.

“My impression was they were going to make them all lead-free parks,” Hess said.

But a Verite News investigation conducted over four months in 2025 found that lead pollution in New Orleans parks not only persists — it is more widespread than previously known. Dozens of city parks with playgrounds remain unsafe, including Markey and other parks that underwent a city-sponsored lead remediation in 2011.

The findings indicate that city officials fell short in their cleanup efforts then, and that a very large number of New Orleans children are exposed to excessive amounts of lead, said Howard Mielke, a retired Tulane University toxicologist and one of the nation’s top experts on lead contamination.

“It’s a failed program,” he said. “They didn’t do what they needed to do to bring the lead levels down in a single park.”

Verite News reporters tested hundreds of soil samples from 84 city parks with playgrounds in fall 2025. Adrienne Katner, a lead-contamination researcher with Louisiana State University, verified the results. The testing found that about half the parks had lead concentrations that exceeded the established in 2024 for soil in urban areas.

“If there’s evidence of kids playing in soils that are as high as you described, that’s kind of horrifying,” Gabriel Filippelli, an Indiana University biochemist who studies lead exposure, told Verite News.

Public health researchers and doctors say that children under 6 absorb lead-laden dust more easily than adults, contaminating their blood and harming the long-term development of their brains and nervous systems. There is no known safe exposure level for children, and even trace amounts can result in behavioral problems and lower cognitive abilities.

Larry Barabino is the CEO of the New Orleans Recreation Development Commission, which oversees most of the city’s parks. He said the city doesn’t routinely test for lead in parks, and he confirmed that the last significant effort to do so was in 2011.

He called Verite’s results “definitely concerning” and pledged to work with city officials, local experts, and a city environmental consultant, Materials Management Group, to potentially remediate unsafe parks.

“It’s definitely concerning if it’s at the level that’s considered a true risk or threat, and we would get it to Capital Projects immediately to get MMG out there,” Barabino said, referring to the . “If there’s anything that’s a true environmental concern or risk, that’s something that we believe in definitely making sure we take action.”

But New Orleans is in financial straits, with a of about $220 million, and it’s unclear what resources new mayor Helena Moreno would be able to devote to restart lead remediation efforts. In response to the financial crisis, Moreno has already eliminated dozens of positions and plans to furlough 700 employees one day per pay period to save money. Moreno’s administration did not respond to requests for comment.

Andrea Young heard pledges similar to Barabino’s 15 years ago. Like Hess, Young had a child who frequented Markey and had high lead levels in her blood. Alongside other mothers, she helped push the city to take action. Young thought they had succeeded but said she now realizes that the city didn’t do enough.

“It makes me question the value” of the work the city did, Young said, “and the safety we felt in letting our kids play there again.”

Testing New Orleans Parks

Lead is typically found in very small amounts in natural soil. The average lead abundance in U.S. soils is , equivalent to less than an ounce of lead per ton of soil.

But New Orleans, like many other cities, has a long history of lead contamination in its soil, from sources including lead-based paint, leaded gasoline, and emissions from waste incinerators and other industrial facilities. Lead particles spread easily by wind, eventually settling in the topsoil.

The federal hazard level for lead in soil was 400 ppm , when the Environmental Protection Agency lowered it to 200 ppm for most residential areas and 100 ppm in urban areas like New Orleans with multiple sources of lead exposure. Last fall, the Trump administration , arguing it was confusing to have two thresholds. It didn’t argue that the 100-ppm level was safe.

More of a guide than a mandate, the EPA screening levels can steer federal cleanup actions and are often adopted by state and city governments to inform local responses to lead contamination. California has long had a much of 80 ppm.

Mielke said the Trump administration’s change doesn’t align with the science, which has long shown that children are harmed when exposed to soil with levels below 100 ppm. He was one of several scientists who had pushed for lower thresholds after the EPA established its first screening levels more than 30 years ago.

He said the 100-ppm level should still be applied in urban areas, especially New Orleans.

Verite conducted soil tests on the 84 city parks that property inventories and maps list as having play structures. Samples were taken from surface soil, which is most likely to come into contact with children’s hands and toys or be inhaled when kicked up during play or blown by the wind.

The average soil sample collected by Verite contained lead levels of about 121 ppm. Elevated lead levels tended to follow the age of the neighborhood. The city’s older neighborhoods, including the Irish Channel and Algiers Point, had some of the highest lead levels, while places like Gentilly and New Orleans East, developed mostly after the 1950s, tended to have lower levels, according to Verite’s findings.

The highest lead levels were found at Evans Park in the Freret neighborhood. Beside a low-hanging oak branch, on ground worn bare by children’s play, Verite recorded lead at 5,998 ppm, nearly 60 times the 100-ppm urban soils threshold.

Verite spoke to more than a dozen parents at playgrounds throughout the city, and most were surprised at the levels of lead in the parks.

In the Irish Channel, Meg Potts watched her son run around the dusty Brignac playground. All of Verite’s samples at that park surpassed the threshold the EPA deemed safe for urban areas, reaching nearly 600 ppm.

Potts knew high lead levels existed in the city but said she didn’t realize her neighborhood park could be a source of exposure for her son.

“ I’m just, like, thinking about all of this now because he’s had to go in and have his lead tested,” she said. “He’s like right on the cusp of having too-high lead.”

Katner, the LSU researcher, said Verite’s results can serve as a starting point for city officials to conduct more comprehensive testing in parks, noting that even a single lead hot spot in a park is concerning.

“The kid playing in that part of the park is going to get the highest dose,” she said.

A Legacy of Lead

Before the 1970s, lead was ubiquitous. A that most of the U.S. population born before the 1980s was poisoned by dangerously high levels of lead in early childhood, resulting in an average loss of at least one IQ point.

Lead pollution from cars spread into areas near roads, especially major thoroughfares, until leaded gasoline was phased out by 1996. Similarly, emissions from trash incinerators and industrial sites contaminated the surrounding soil in some New Orleans neighborhoods until they were closed in the 1970s and ’80s.

Today, the most pervasive source of lead in soil is degraded paint. Lead-based paint was used extensively for homes and buildings until it was banned in 1978. In New Orleans, most of the houses were built before 1980, according to the . As the paint deteriorates, Tulane University epidemiologist Felicia Rabito said, it can chip or turn into toxic dust.

“ The leaded paint goes straight into the dust and it goes straight into the soils, which is a major source of exposure for young children in the city,” said Rabito, who studies lead poisoning and other health conditions.

Children under 6 are especially vulnerable, in part because they like to stick their hands in their mouths. A child eating a dropped Cheerio or putting their thumb in their mouth after playing on a seesaw can be enough to cause harm. Rabito recommended that parents avoid contaminated playgrounds.

The only way to know whether a child has lead poisoning is a medical test. By , Louisiana health care providers to ensure every child between 6 months and 6 years of age receives at least two blood tests, recommended at age 1 and age 2.

But the law does not include a way to enforce those testing requirements, so many health care providers don’t test, according to a from the Louisiana Department of Health. In 2022, fewer than 1 in 10 children under 6 were screened for lead poisoning in the city, according to data from the Centers for Disease Control and Prevention.

“ There’s not anything that we can say about lead poisoning or lead levels in children in Orleans Parish with any scientific certainty,” Rabito said. “ Parents really need to get their children tested.”

Limited Soil Testing, Patchy Fixes

In 2011, the last time there was outcry over lead pollution in parks, the New Orleans health commissioner at the time, Karen DeSalvo, said the city should do “everything we can to understand what the risk might be and to remediate it.” But she also called it “not the greatest challenge, honestly,” .

Then-Mayor Mitch Landrieu promised a comprehensive response.

“The city will take all necessary measures to investigate possible lead contamination in other parks and playgrounds and remediate them as soon as possible,” he said .

Two months later, testing and remediation were completed at several parks. Parents brought their children back to the reopened playgrounds.

Despite city leaders’ assurances of a broad response, only 16 parks were tested in 2011 and the city’s piecemeal cleanup covered only patches of contaminated soil rather than entire parks, according to documents obtained through public records requests.

That stunned the vocal group of parents who had pushed for cleaning up the Markey playground. Young, one of the mothers, said the scope of the 2011 testing and remediation was much more limited than she thought.

“If the majority of the parks they tested were high, what would make them think all the others are fine?” she said.

Verite’s testing found high levels of lead at several playgrounds that were remediated in 2011, including Markey.

The results disturbed Mielke, the Tulane toxicologist.

In 2010, Mielke led an effort to reduce lead exposure at 10 private child care center playgrounds in New Orleans. He and his team covered the entire footprint of each playground with water-pervious plastic fabric and then 6 inches of Mississippi River sediment from the Bonnet Carré Spillway, a source of clean, cheap, and easily accessible soil. Lead levels fell, with most playgrounds testing below 10 ppm.

In contrast, the city’s remediation was mostly limited to areas with lead levels above 400 ppm, leaving many hazardous areas exposed. Testing and remediation reports obtained by Verite typically showed MMG focused on two or three spots in each park, with the rest going untreated.

At Easton Park in Bayou St. John, for instance, the 2011 remediation covered four areas totaling about 4,700 square feet, but the park’s playground was left untouched. Verite measured four samples around the playground that exceeded the 100-ppm threshold, including 1,060-ppm and 603-ppm readings near Easton’s swing set.

One park, Evans in the Freret neighborhood, wasn’t remediated despite lead levels as high as 610 ppm in 2011. The reason wasn’t clear in progress reports submitted by MMG. In Verite’s 2025 tests, Evans recorded the highest level, with 5,998 ppm in one location.

MMG did not respond to requests for comment.

Landrieu did not respond to a request for comment. DeSalvo, who retired last summer as Google’s chief health officer, said “extremely limited resources” forced the city to weigh its response to lead contamination in parks with the many other health threats residents faced.

“We worked to address the range of exposures whenever possible with the resources we could muster,” she said.

A Road Map for Cleanup?

Filippelli, of Indiana University, said the city should conduct comprehensive testing of every park and do regular checkups.

But because lead contamination in New Orleans parks is extensive and city leaders are struggling to close a large budget deficit, Filippelli recommends that the city remediate the worst parks first.

He and Mielke don’t believe the city must go the expensive route of full remediation, which involves digging up lead-tainted soil and trucking it to a hazardous waste landfill. It’s usually unnecessary if a park is properly capped with clean soil, Filippelli said.

Verite obtained cost estimates for 10 of the 13 parks targeted for remediation in 2011. The total cost was $83,000 in 2011, or about $120,000 today. The work covered just more than 1.3 acres across the 10 properties. Filippelli estimated that similar work could be done today for about $20,000 per acre — about a fifth of what was spent to remediate just over an acre at New Orleans parks.

Remediation should be coupled with efforts to reduce contamination from nearby sources, primarily old houses shedding lead-based paint, Rabito said.

“When you clean up soil, you’re not going to do it much good if you haven’t identified what’s contaminating the soil,” she said.

Cleaning up New Orleans parks is also likely to require sustained public pressure, said the parents involved with the lead issue in 2011.

“I was not intending to kick butts or make anybody look bad,” Claudia Copeland said of her efforts to alert parents about the dangers at Markey. “But nothing would have happened unless all these parents were calling in to the city.”

Methodology

Verite News reporters Tristan Baurick and Halle Parker were trained to use , or XRF, a handheld device that can detect the unique traits of lead at trace levels, down to 10 parts per million. The analyzer is widely used by government and university scientists.

The reporters tested 531 soil samples over a month in late 2025, following protocols developed by retired Tulane University toxicologist Howard Mielke and vetted by three other lead-contamination researchers. The reporters tested surface soil in and around play structures and other areas of parks that children use. Of the more than 110 parks in New Orleans, Verite concentrated on the 84 that city property inventories and maps list as having play structures. The reporters took between three and 11 samples at each park, depending on the size, site accessibility, and levels of contamination. A GPS device was used to record each sample’s location.

Verite’s results were reviewed by Adrienne Katner, a lead-contamination researcher at Louisiana State University. She verified the accuracy of the testing by comparing it with a smaller set of park soil samples collected by her team last summer.

While valid, the method did have limitations. The results can’t be used to determine the state of a whole park. But even one elevated soil sample can provide a starting point for city officials to conduct more comprehensive testing.

This article was produced in collaboration with . The four-month investigation was supported by a Kozik Environmental Justice Reporting grant funded by the National Press Foundation and the National Press Club Journalism Institute. It was also produced as a project for the USC Annenberg Center for Health Journalism’s National Fellowship fund and Dennis A. Hunt Fund for Health Journalism.

Ñî¹óåú´«Ã½Ò•îl 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 .

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This story can be republished for free (details).

La inquilina guatemalteca de su amiga, quien no sabía que estaba embarazada, acababa de dar a luz a un bebé prematuro en una casa en Nueva Orleans. Los padres no tenían residencia legal, y la madre se negó a ir al hospital por miedo a ser detenida por agentes de inmigración federales.

“Hay sangre por todos lados, y el bebé está muerto”, recuerda Rosales-Fajardo que le dijo su amiga.

Rosales-Fajardo se puso las sandalias, agarró guantes quirúrgicos y corrió hacia la casa.

Inmigrante de Brasil, Rosales-Fajardo es organizadora comunitaria en Nueva Orleans Este, que concentra una gran comunidad inmigrante. No tiene formación médica formal, pero tiene experiencia asistiendo partos.

Al llegar, observó la habitación. Un niño de 3 años estaba de pie a un lado mientras la madre se sentaba al borde de la cama. El padre sostenía a su hijo recién nacido envuelto en toallas empapadas de sangre; el bebé no respiraba.

“El bebé estaba completamente gris”, dijo después Rosales-Fajardo.

Le limpió la boca y le frotó la espalda antes de hacerle pequeñas compresiones en el pecho y darle respiración boca a boca.

Le dijo a los padres que debía llamar al 911 para que la madre y el bebé recibieran atención en un hospital. El bebé ya había nacido, pero el parto aún no había terminado.

“Le aseguré que iba a estar a salvo, se lo prometí”, dijo Rosales-Fajardo.

El miedo se sentía en la habitación. Aun así, hizo la llamada y continuó con la reanimación. Finalmente, el bebé reaccionó y se movió en brazos de Rosales-Fajardo. Cuando llegó la ambulancia, la madre intentó evitar que su esposo la acompañara, aterrada de que arrestaran a ambos. Él fue de todos modos.

Poniendo la seguridad sobre la salud

“Estas son personas trabajadoras”, dijo Rosales-Fajardo. “Todo lo que hacen es trabajar para mantener a su familia. Pero estuvieron a punto de perder a su hijo por no llamar al 911”.

A casi dos semanas de iniciada la operación del Departamento de Seguridad Nacional (DHS, por sus siglas en inglés) llamada Catahoula Crunch, que comenzó el 3 de diciembre, profesionales de salud y defensores comunitarios en Louisiana y Mississippi reportan un aumento inusual de pacientes inmigrantes que se han salteado citas médicas y muestran altos niveles de estrés.

Según , el DHS había arrestado a más de 250 personas hasta el 11 de diciembre. Aunque las autoridades federales aseguran que están enfocadas en detener a personas con antecedentes penales, la agencia (AP) informó que la mayoría de las 38 personas detenidas en los primeros dos días del operativo en Nueva Orleans no tenían historial criminal.

Desde que el presidente Donald Trump asumió el cargo en enero, las familias inmigrantes en todo el país son más proclives a evitar o posponer la atención médica, en parte por preocupaciones relacionadas con su estatus migratorio, según de KFF y The New York Times.

La encuesta reveló que casi 8 de cada 10 inmigrantes que probablemente estén viviendo en Estados Unidos sin autorización legal dijeron haber experimentado efectos negativos en su salud este año, desde ansiedad y problemas de sueño hasta el empeoramiento de afecciones como presión arterial alta o diabetes.

Las redadas migratorias federales en California, Illinois, Carolina del Norte y ahora en Louisiana y Mississippi agravan las dificultades que estas familias ya enfrentan, como el acceso limitado a servicios, barreras lingüísticas, falta de seguro médico y altos costos.

Esa renuencia a recibir atención, incluso en casos de emergencia, parece justificada en medio de las redadas.

Según la (ACLU, por sus siglas en inglés), los hospitales y centros de salud generalmente deben permitir el acceso de agentes federales a las áreas abiertas al público. En California, este año, agentes federales se han apostado  en , se han presentado en clínicas comunitarias y han custodiado a personas detenidas en .

Incluso ir o volver de una cita médica implica un riesgo, ya que las detenciones durante controles de tránsito son una práctica común de los agentes de migración.

La enfermera Terry Mogilles, del University Medical Center (UMC), dijo que los inmigrantes suelen representar al menos la mitad de los pacientes en su clínica de traumatología ortopédica en Nueva Orleans, muchos con lesiones graves relacionadas con el trabajo en la construcción que requieren cirugía. Pero ahora, Mogilles dijo que muchos de esos pacientes no van a sus citas de seguimiento, a pesar del riesgo de infecciones.

“Llamamos y no logramos comunicarnos”, dijo Mogilles. “Es muy angustiante porque no sabemos qué les está pasando después de la operación”.

El miedo se extiende en el sur

Las autoridades federales informaron que la operación Catahoula Crunch también se lleva a cabo en el sur de Mississippi, aunque la mayoría de los arrestos iniciales ocurrieron en el área metropolitana de Nueva Orleans. Las familias inmigrantes en todo Mississippi se están preparando para lo que se avecina.

Michael Oropeza, director ejecutivo de la organización El Pueblo, que presta servicios a comunidades inmigrantes de bajos ingresos en Biloxi y Forest, dijo que han visto a familias postergar atención médica, cancelar chequeos infantiles y dejar de surtir recetas.

“No es que no valoren su salud; es que no se sienten seguros”, afirmó Oropeza. “Cuando los hospitales y clínicas dejan de ser un lugar seguro, se pierde la confianza que tomó años construir. Puede desaparecer de la noche a la mañana”.

María, una residente de Biloxi originaria de Honduras, contó en español que ella y sus dos hijos han perdido citas médicas rutinarias porque están “aterrados” de salir de casa ante el aumento de la presencia de agentes federales de migración. Su esposo, quien tiene autorización para trabajar en Estados Unidos, fue detenido durante dos meses este año.

Sus hijos son ciudadanos estadounidenses. Antes tenían cobertura de Medicaid, pero María decidió darlos de baja hace tres años por miedo a que el uso de beneficios públicos afectara las solicitudes de residencia de su familia. Ahora pagan la atención médica de sus hijos de su propio bolsillo.

Cuando se sientan seguros de volver a salir, María dijo que su prioridad será buscar atención en salud mental para abordar el estrés que ha vivido su familia.

“Yo necesito visitar un médico definitivamente para que me chequee porque no me siento bien”, dijo, al describir su ansiedad, depresión e insomnio.

En Louisiana, Marcela Hernández, de , una organización sin fines de lucro que brinda ayuda directa a inmigrantes, dijo que muchas de las familias con las que trabaja . Refugiarse en casa y perder días de trabajo solo aumenta el estrés. Hernández contó que recibió 800 llamadas pidiendo comida en solo dos días, de familias que tenían miedo de salir a la calle.

Según la agencia AP, la operación federal en Louisiana y Mississippi . Cuanto más se prolongue, más teme Hernández que comience a haber desalojos, ya que las personas no podrán pagar el alquiler, lo que traumatizaría aún más a una comunidad que a menudo ha tenido que emprender viajes peligrosos para llegar a Estados Unidos, huyendo de situaciones difíciles en sus países de origen.

“No abandonas tu país sabiendo que vas a ser violada en el camino solo porque quieres venir a conocer a Mickey Mouse”, dijo.

Rosales-Fajardo, quien dirige una organización sin fines de lucro llamada El Pueblo NOLA, comentó que muchas familias le cuentan que sus hijos han comenzado a hacerse pis encima por el miedo y el estrés.

A nivel nacional, inmigrantes en situación migratoria irregular han reportado que algunos de sus hijos tienen problemas para dormir o cambios en el rendimiento escolar o en su conducta, según la .

Grupos comunitarios esperan que personas de la comunidad se movilicen para llevar alimentos y productos de higiene a los hogares de inmigrantes, y que profesionales de salud ofrezcan más visitas domiciliarias o por telemedicina.

Como en otros hospitales, las salas de espera del UMC son consideradas espacios públicos, explicó Mogilles. Pero el sindicato de enfermeras pide que el hospital establezca áreas seguras a las que los agentes federales no tengan acceso y políticas claras para proteger al personal de salud que a su vez cuida a los pacientes.

Las citas postoperatorias no pueden realizarse de forma virtual, por lo que los pacientes necesitan sentirse lo suficientemente seguros para venir, explicó Mogilles.

El cuidado prenatal y postnatal también es difícil de ofrecer de forma virtual, lo que pone en riesgo la salud de embarazadas o mujeres que han parido recientemente, explicó Latona Giwa, directora ejecutiva de Repro TLC, una organización nacional de capacitación en salud sexual y reproductiva.

Desde que en septiembre, Giwa dijo que las clínicas y proveedores con los que trabaja reportaron que el 30% de sus pacientes no habían ido a sus citas médicas. Las farmacias reportaron una caída del 40% en la recolección de medicamentos.

“Sabemos que en el manejo de afecciones crónicas, especialmente durante el embarazo, pero también en general, incluso faltar a una sola cita puede afectar el desarrollo de la afección y empeorar los resultados del paciente”, dijo Giwa.

En Louisiana, donde los resultados de salud materna , el temor al arresto podría agravar una crisis que ya se intensificó con la anulación de Roe v. Wade y poner vidas en riesgo. Giwa está especialmente preocupada por las familias con bebés prematuros en la unidad de cuidados intensivos neonatales (NICU, por sus siglas en inglés).

“Imagínate que tu bebé está en el hospital, tan vulnerable, y tú tienes miedo de ir a verlo y cuidarlo porque temes ser deportada”, dijo, señalando que la salud de un recién nacido depende en parte de la presencia de sus padres.

Esa es la situación que enfrenta la familia guatemalteca en Nueva Orleans.

En un día reciente de diciembre, Rosales-Fajardo actuó como traductora y defensora de la familia durante su primera visita para ver a su hijo en la NICU, en un hospital en la zona norte del lago Pontchartrain. El personal les dijo a los padres que necesitarían hacer ese viaje largo y riesgoso varias veces durante al menos un mes, para brindar contacto piel con piel y leche materna.

Rosales-Fajardo condujo a los padres, quienes tenían miedo de cruzar el puente por su cuenta por temor a ser detenidos. Dijo que seguirá llevándolos las veces que sea necesario.

“Cuando ven a alguien hispano manejando o algo así, ya les parece sospechoso”, dijo sobre los agentes federales.

Pero el bebé está a salvo y saludable. Y los padres nombraron a Rosales-Fajardo como su madrina.

Gwen Dilworth de Mississippi Today y Christiana Botic de Verite News colaboraron con este artículo.

Ñî¹óåú´«Ã½Ò•îl 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 .

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The friend’s Guatemalan tenant, who didn’t know she was pregnant, had just delivered a premature baby in the New Orleans house. The parents lacked legal residency, and the mother refused to go to a hospital for fear of being detained by federal immigration officers.

“There’s blood everywhere, and the baby’s dead,” Rosales-Fajardo recalled her friend saying.

Rosales-Fajardo put on her sandals, grabbed surgical gloves, and rushed to the house.

Rosales-Fajardo, herself an immigrant from Brazil, is a grassroots organizer and advocate in the New Orleans East community, where many immigrants live. She has no formal medical training, but she has experience with delivering babies.

She scanned the room when she arrived. A 3-year-old child stood to one side while the mother sat on the edge of the bed. The father held their swaddled newborn son, who wasn’t breathing and was wrapped in blood-soaked towels.

“The baby was completely gray,” Rosales-Fajardo later said.

Rosales-Fajardo wiped fluid away from his small mouth and rubbed his back before performing tiny chest compressions and breathing air into his lungs.

She told the parents she had to call 911 to get the mother and newborn to a hospital for care. The baby was out, but the delivery wasn’t over.

“I assured her. I promised her that she was going to be safe,” Rosales-Fajardo said.

Fear hung over the room. Still, she made the call and continued performing CPR. Finally, the newborn revived and squirmed in Rosales-Fajardo’s arms. When the ambulance arrived, the mother tried to keep her husband from riding with her, terrified they would both be arrested. He went, anyway.

“These are hard-working people,” Rosales-Fajardo said. “All they do is work to provide for their family. But they were almost at risk of losing their child rather than call 911.”

Putting Safety Over Health

Nearly two weeks into the Department of Homeland Security’s Operation Catahoula Crunch, which launched Dec. 3, health professionals and community advocates in Louisiana and Mississippi report that a significantly higher-than-usual number of immigrant patients have skipped health care appointments and experienced heightened stress levels.

According to a , DHS said it had arrested more than 250 people as of Dec. 11. Though federal officials say they’re targeting criminals, that most of the 38 people arrested in the first two days of the New Orleans operation had no criminal record.

Since President Donald Trump took office in January, immigrant families nationwide have become more likely to skip or delay health care, due in part to concerns about their legal status, according to a by KFF and The New York Times.

The survey found that nearly 8 in 10 immigrants likely to be living in the U.S. without legal permission say they’ve experienced negative health impacts this year, from increased anxiety to sleeping problems to worsened health conditions such as high blood pressure or diabetes. The federal immigration raids in California, Illinois, North Carolina, and now Louisiana and Mississippi add to the health care barriers that these families already face, including access to services, language barriers, lack of insurance, and high costs.

That hesitancy to receive even emergency care appears justified amid the ongoing raids. Hospitals and health facilities generally must allow federal agents in areas where the public is allowed, . In California this year, federal agents have staked out , shown up at community clinics, and guarded detainees in . Even driving to and from appointments poses a risk, as traffic stops are a popular place for immigration agents to make arrests.

University Medical Center nurse Terry Mogilles said that immigrants typically make up at least half the patients in her orthopedic trauma clinic in New Orleans, many of them with construction-related, bone-crushing injuries that require surgery. But now, Mogilles said, many of those patients aren’t coming in for follow-up appointments, despite the risk of infection.

“When we call, we can’t get through,” Mogilles said. “It is so upsetting because we have no idea what’s happening to them post-op.”

A Chill Spreads in the South

Federal officials said the Catahoula Crunch operation extends to southern Mississippi, though the bulk of the initial arrests have occurred in the Greater New Orleans area. Immigrant families throughout Mississippi are hunkering down in anticipation.

Michael Oropeza, executive director of El Pueblo, a nonprofit serving low-income immigrant communities in Biloxi and Forest, said the organization has witnessed families delay care, cancel children’s checkups, and go without refilling medication.

“It’s not because they don’t value their health; it’s because they don’t feel safe,” Oropeza said. “When hospitals and clinics are no longer that safe place, people withdraw trust that took years to build up. It can disappear overnight.”

Maria, a Biloxi resident from Honduras, said, in Spanish, she and her two children have missed routine doctors’ appointments because they are “terrified” to leave the house amid an increased presence of federal immigration officers. Her husband, who is authorized to work in the U.S., was detained for two months this year.

Her children are U.S. citizens. They previously qualified for Medicaid, but Maria opted to disenroll them three years ago out of concern that using public benefits would jeopardize her family’s residency applications, she said. The family now pays for their children’s care out-of-pocket.

When it feels safe to attend doctors’ appointments again, Maria said, her priority will be seeking mental health care to address the stress her family has endured.

“I definitely need to see a doctor to get checked out, because I don’t feel well,” she said, describing her anxiety, depression, and insomnia.

In Louisiana, Marcela Hernandez of , a nonprofit that provides direct aid to immigrants, said many of the families she works with live . Sheltering at home and missing work only adds to the stress. Hernandez said she received 800 calls for food in two days from families afraid to leave home.

The federal operation in Louisiana and Mississippi , according to the AP. The longer it goes on, Hernandez said, the more she worries evictions will come next as people can’t pay rent, further traumatizing a community whose members often had to make difficult and dangerous journeys to flee hardships in their countries of origin to reach the U.S.

“You don’t leave your country knowing that you’re gonna get raped on the way just simply because you wanna come and meet Mickey Mouse,” she said.

Rosales-Fajardo, who runs a nonprofit called El Pueblo NOLA, said families tell her how children have started urinating on themselves due to stress and fear. Nationally, immigrants who are likely to lack legal status report that some of their children have had problems sleeping and that they’ve seen changes in school performance or behavior, according to the KFF and New York Times survey.

Community groups said they hope people step up locally to deliver food and hygiene products to immigrant homes, and that health care professionals provide more at-home or telehealth visits.

Like at other hospitals, UMC’s waiting rooms are considered public spaces, Mogilles noted. But the nurses union is calling for the hospital to create safe spaces for patients that federal agents can’t access and clearer policies to protect health care workers who shield patients. Post-op appointments can’t be done virtually, so patients need to feel safe enough to come in, Mogilles said.

Prenatal and postnatal care is also challenging to provide virtually, leaving the health of new and expecting mothers vulnerable, said Latona Giwa, executive director of Repro TLC, a national sexual and reproductive health training nonprofit.

Since the in September, Giwa said, the clinics and health providers her organization works with have reported that 30% of patients had missed appointments. She said pharmacies saw a 40% drop in medication pickups.

“What we know about management of chronic conditions, especially in pregnancy, but in general, is that even missing one appointment can impact the trajectory of that condition and worsen a patient’s outcomes,” Giwa said.

In Louisiana, which already has , the fear of arrest could exacerbate the crisis worsened by the overturning of Roe v. Wade and threaten lives. She’s especially concerned about families with preterm babies in the neonatal intensive care unit, or NICU.

“Imagine your child is in the hospital, and so vulnerable, and you are terrified to go visit and care for your newborn infant because you’re worried about being deported,” Giwa said, noting that a newborn’s health partly relies on parental visits.

That’s the position the Guatemalan family in New Orleans is navigating.

On a recent day in December, Rosales-Fajardo acted as the family’s translator and advocate on their first visit to see their son in the NICU at a hospital on Lake Pontchartrain’s Northshore. Hospital staffers told the parents they would need to make the long and risky trip to the hospital repeatedly for at least a month to provide skin-to-skin contact and breast milk.

Rosales-Fajardo drove the parents, who were afraid to travel alone out of fear of being pulled over and arrested on a bridge. She said she’ll keep driving them as long as she needs to.

“Whenever they see a Hispanic driving or anything like that, that’s suspicious to them,” she said of federal agents.

But the baby is safe and healthy. And the parents have named Rosales-Fajardo his godmother.

Gwen Dilworth of Mississippi Today and Christiana Botic of Verite News contributed to this report.

Ñî¹óåú´«Ã½Ò•îl 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 .

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Acostada e inmóvil sobre una mesa plegable que hacía las veces de cama, Dunnebacke se quejaba de dolor en las piernas. La enfermera Ana Kanellos, enrollando dos pequeñas toallas blancas, mostró cómo elevarle los tobillos para aliviarle el dolor.

“¿Las piernas de mamá siempre están hinchadas? Entonces, levántaselas”, dijo Kanellos.

Unas 20 personas, residentes de Nueva Orleans, escuchaban con atención, interesadas en aprender más sobre cómo cuidar a seres queridos en casa cuando se acercan al final de sus vidas.

Alix Vargas, una de las asistentes, dijo que antes le aterraba la idea de morir. Pero hace unos tres años, la muerte de una prima muy cercana la impulse a participar en talleres grupales de escritura, lo que la ayudó a enfrentar su duelo y superar ese miedo.“Siento un fuerte llamado hacia este trabajo”, dijo. “Definitivamente es un conocimiento que quería adquirir y ampliar mi mente en ese sentido. Y además, es algo que todos vamos a experimentar en nuestras vidas”.

El taller la hizo pensar en una vecina cuya madre tiene demencia.“Inmediatamente pensé: ‘Ok, hay alguien en mi entorno cercano que está viviendo esto’”, recordó Vargas. “‘Esto es una forma práctica de poner en acción la ayuda mutua’”.

La demanda de atención médica en casa, incluyendo los cuidados paliativos domiciliarios, se ha disparado desde el inicio de la pandemia de covid, al igual que el número de personas que cuidan a familiares.

Según realizada por AARP y la Alianza Nacional de Cuidadores (National Alliance for Caregiving), se calcula que 63 millones de personas en el país —casi una cuarta parte de los adultos— brindaron cuidados a otra persona con una condición médica o discapacidad, por lo general otro adulto, el año anterior.

En los últimos 10 años, unas 20 millones de personas más han asumido este rol de cuidadoras.

Se estima que casi 1 de cada 5 personas en Estados Unidos tendrá 65 años o más para 2030, por lo que expertos en salud pronostican que la necesidad de cuidadores en el hogar seguirá creciendo.

Hay numerosos recursos en línea sobre cuidados al final de la vida, pero la capacitación práctica para preparar a personas cuidadoras no es tan accesible, y puede ser costosa. Aun así, familiares sin entrenamiento están asumiendo tareas de enfermería y atención médica.

Durante su campaña presidencial de 2024, Donald Trump prometió más apoyo para las personas cuidadoras, incluyendo un nuevo crédito fiscal para quienes cuidan a familiares. Respaldó un proyecto de ley que fue reintroducido en el Congreso este año y que permitiría otorgar créditos fiscales de hasta $5.000 a cuidadores familiares, pero la legislación no ha avanzado.

Mientras tanto, los recortes a Medicaid previstos en la ley republicana conocida como One Big Beautiful Bill Act, que el presidente Trump firmó en julio, podrían llevar a que algunos estados reconsideren su participación en programas opcionales de Medicaid, como el que ayuda a cubrir los . Esto podría hacer que morir en casa sea aún menos accesible para familias de bajos ingresos, según investigadores y defensores.

Activistas como Osha Towers tratan de ayudar a los cuidadores a navegar esta incertidumbre. Towers lidera el trabajo comunitario en LGBTQ+ en Compasión y Opciones (), una organización nacional que busca mejorar los cuidados, la preparación y la educación sobre el final de la vida.“Es sin duda algo muy aterrador, pero lo que sí sabemos que podemos hacer ahora es simplemente estar presentes para cada persona, y asegurarnos de que sepan qué necesitan para estar preparadas”, afirmó Towers.

En Nueva Orleans, una , que se enfoca en apoyar a familiares que brindan cuidados al final de la vida y en el momento de la muerte, es una de las que busca llenar ese vacío de conocimiento.

Wake organizó el taller gratuito de tres días en septiembre donde Dunnebacke, fundadora del grupo, simuló ser una paciente moribunda. Estos talleres buscan preparar a las personas para saber qué esperar cuando un ser querido está muriendo y cómo cuidarlo, incluso sin ayuda profesional costosa. Los cuidados domiciliarios a tiempo completo son poco comunes.“No se necesita ninguna formación especial para hacer este trabajo”, señaló Dunnebacke. “Solo se necesitan algunas habilidades y apoyos para poder hacerlo”.

En cierto modo, la evolución de los cuidados al final de la vida en Estados Unidos en el último siglo han vuelto a cómo era en el pasado. No fue sino hasta la década de 1960 que la mayoría de las personas comenzaron a morir en hospitales, residencias de mayores e instituciones de cuidados paliativos, en lugar de en casa.

Aunque estas instituciones pueden ofrecer atención médica avanzada inmediata y cuidados paliativos, a menudo carecen de la conexión humana que proporciona el cuidado en el hogar, según Laurie Dietrich, gerente de programas de Wake.

Ahora, más personas quieren morir en sus casas, rodeadas de su familia, pero con el apoyo y la tecnología que ofrecen las instalaciones médicas modernas.

En la última década, las doulas del final de la vida o matronas de la muerte —personas que brindan apoyo no médico y emocional a las personas moribundas y sus seres queridos— se han vuelto más populares como una forma de acompañar en ese proceso y llenar ese vacío.

Douglas Simpson, director ejecutivo de la Asociación Internacional de Doulas del Final de la Vida (), dijo que su organización reconoce la falta de recursos sobre cuidados durante la muerte, por lo que está capacitando a doulas para que actúen como educadoras comunitarias. Espera que estas doulas sean especialmente útiles en comunidades rurales y que promuevan conversaciones sobre la muerte.“Se trata de lograr que las personas se sienta más abiertas y cómodas para hablar sobre la muerte y reflexionar sobre su propia mortalidad”, dijo Simpson.

La capacitación como doula de la muerte varía según la organización, pero el grupo de Simpson se enfoca en enseñar sobre el proceso de morir, cómo respetar la autonomía de la persona que está muriendo y cómo las doulas deben cuidar de sí mismas mientras cuidan de otros.

Algunas personas que participaron en el taller de Wake ya habían recibido algún tipo de formación como doula de la muerte. Después de que la madre de Nicole Washington fue asesinada en 2023, ella consideró convertirse en doula. Pero pensó que la capacitación, que puede costar entre $800 y $3.000, era demasiado clínica e impersonal, en contraste con el enfoque comunitario de Wake.“Me siento con mucha energía, muy animada”, aseguró Washington. “Y también es muy reconfortante compartir con personas que están familiarizadas con la muerte y el duelo”

Susan Nelson, de Ochsner Health, quien ha trabajado como geriatra por 25 años, dijo que se necesitan más programas especializados como el de Wake para capacitar y preparar a las personas cuidadoras.“Aprender habilidades para cuidar a otros suele ser, lamentablemente, una experiencia de prueba y error”, añadió Nelson.

Compasión y Opciones también busca educar a personas cuidadoras. Towers explicó que la formación de la organización abarca desde la planificación anticipada hasta actuar como representante de atención médica y brindar cuidados durante la etapa final.“En este país nos hemos alejado de los cuidados al final de la vida de una forma en la que antes no lo hacíamos”, dijo Towers.

Towers señaló que este movimiento para cuidar a las personas en casa y brindarles apoyo comunitario tiene sus raíces en la epidemia de VIH/sida, cuando algunos médicos a personas con VIH. Amistades, especialmente dentro de la , comenzaron a organizar la entrega de alimentos, visitas, vigilias al pie de la cama e incluso círculos de contacto, donde los pacientes recibían gestos de consuelo como tomarse de las manos para aliviar el dolor y la sensación de aislamiento.

“Me gusta verlo como un modelo de lo que podemos volver a hacer hoy: priorizar el cuidado comunitario”, dijo Towers.

Este artículo se produjjo ​​en colaboración con . La reportera de Verité News, Christiana Botic, colaboró ​​con este informe.

Ñî¹óåú´«Ã½Ò•îl 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 .

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Dunnebacke lay still atop a folding table that was dressed as a bed, complaining that her legs hurt. Registered nurse Ana Kanellos, rolling up two small white towels, demonstrated how to elevate her ankles to ease the pain.

“ Mom’s legs are always swollen? Raise ’em up,” Kanellos said.

About 20 New Orleans residents listened intently, eager to learn more about how to care for loved ones at home when they’re nearing the end of their lives. Attendee Alix Vargas said she used to be terrified of dying. But about three years ago, a close cousin’s death led her to attend group writing workshops, helping her embrace her grief and conquer her fear.

“ I’m feeling very called towards this work,” she said. “It’s definitely knowledge that I wanted to obtain and expand my mind in that way. And this is also something that we’re all going to encounter in our lives.”

The workshop made her think about a neighbor whose mother has dementia.

“ I was immediately thinking, ‘OK, there’s someone in my immediate orbit that is experiencing this,’” Vargas recalled. ‘“Here’s a practical way to put the mutual aid in use.’”

Demand for home health care, including at-home hospice care, has skyrocketed since the onset of the covid pandemic, as has the number of family caregivers. An estimated 63 million people in the U.S. — nearly a quarter of all American adults — provided care over the previous year to another person with a medical condition or disability, usually another adult, according to by AARP and the National Alliance for Caregiving. In the past 10 years, about 20 million more people have served as caregivers.

With nearly 1 in 5 Americans expected to be 65 or older by 2030, health care experts predict the demand for at-home caregivers will continue to rise. Online resources for end-of-life care are widely available, but hands-on training to prepare people to become caregivers is not, and it can be expensive. Yet untrained family members-turned-caregivers are taking on nursing and medical tasks.

Donald Trump promised more support for caregivers during his 2024 campaign, including a pledge to create new tax credits for those caring for family members. He endorsed a bill reintroduced in Congress this year that would allow family caregivers to receive tax credits of up to $5,000, but the legislation hasn’t moved forward.

Meanwhile, the Medicaid cuts expected from Republicans’ One Big Beautiful Bill Act, which President Trump signed in July, could prompt states looking to offset their added expenses to reconsider participating in optional state Medicaid programs, such as the one that helps pay for . That would threaten to make dying at home even more unaffordable for low-income families, said advocates and researchers.

Advocates like Osha Towers are trying to help caregivers navigate the uncertainty. Towers leads LGBTQ+ engagement at , a national organization that focuses on improving end-of-life care, preparation, and education.

“It is certainly very scary, but what we know we can do right now is be able to just show up for all individuals to make sure that they know what they need to be prepared for,” Towers said.

In New Orleans, a , which focuses on supporting family caregivers providing end-of-life and death care, is one of the organizations trying to help fill the knowledge gap. Wake put on the free, three-day September workshop where Dunnebacke, the group’s founder, pretended to be a dying patient. Such workshops are aimed at preparing attendees for what to expect when loved ones are dying and how to care for them, even without costly professional help. Full-time at-home care is rare.

“You don’t have to have any special training to do this work,” Dunnebacke said. “You just need some skills and some supports to make that happen.”

In some ways, the evolution of end-of-life care in the U.S. over the past century has come full circle. It was only starting in the 1960s that people shifted from dying at home to dying in hospitals, nursing homes, and hospice facilities.

Such institutions can provide immediate advanced medical support and palliative care for patients, but they often lack the human connection that home care provides, said Laurie Dietrich, Wake’s programs manager.

Now, more people want to die in their homes, among family, but with the support and technology that comes with modern medical facilities.

In the past decade, death doulas — who support the nonmedical and emotional needs of the dying and their loved ones — have grown in popularity to help guide people through the dying process, helping to fill that gap. Douglas Simpson, executive director of the , said his organization recognizes the lack of resources for death care, so it is training doulas to be community educators. He hopes doulas can be especially useful in rural communities and lead conversations about dying.

“Making people more open, more comfortable about talking about death and considering their mortality,” Simpson said.

Death doula training varies depending on the organizer, but Simpson’s group focuses on teaching attendees about the dying process, how to maintain the autonomy of the dying person, and how to be aware of how they show up to a job and take care of themselves while caring for others.

Some people who attended Wake’s workshop had also attended some form of death doula training in the past. After Nicole Washington’s mother was killed in 2023, she considered becoming a death doula. But she thought the doula training, which can cost $800 to $3,000, was clinical and impersonal, as opposed to Wake’s community-based approach.

“I feel very energized, very uplifted,” Washington said. “It’s also really nice to be in a space with people who are familiar with death and grief.”

Ochsner Health’s Susan Nelson, who has worked as a geriatrician for 25 years, said there is a need for more specialized programs to train and prepare caregivers, like Wake’s.

“Learning caregiving skills is probably, unfortunately, more trial by fire,” Nelson said.

Compassion & Choices is another organization trying to educate caregivers. Towers said the group’s training ranges from advanced planning to acting as a health care proxy to caring for the dying.

“We’ve gone to a place in our country where we’re so removed from end-of-life care in a way that we didn’t used to be,” Towers said.

Towers said the movement to care for people at home and give them community support has roots in the AIDS epidemic, when some doctors for AIDS patients. Friends, especially in the , started coordinating food delivery, visits, bedside vigils, and even touch circles, where patients could receive comforting forms of touch such as hand-holding to ease pain and feelings of isolation.

“I like to look at it as a blueprint for what we can get back to doing now, which is again just prioritizing community care,” Towers said.

This article was produced in collaboration with . Verite News reporter Christiana Botic contributed to this report.

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For days, Laura was just a tropical storm, wet and disorganized. But the Gulf of Mexico was warm — much warmer than average. Local officials worried the temperatures could supercharge the storm as it spun toward the Louisiana coast. So, just as Laura approached the open Gulf, two days before it would make landfall 30 miles south of Stonebridge, Guidry made the call to evacuate.

“I don’t think anybody anticipated it to be as strong as it was,” she said.

Residents were sent to a partner facility about four hours north. Those with the most serious medical conditions were taken by ambulance. Others packed into vans. They avoided the highways, taking backroads for most of the drive. In the time it took to settle into the other facility, Laura rapidly strengthened into a Category 4 hurricane. It eventually became one of the strongest hurricanes to make landfall in the U.S. in the last century. It also tied for the fastest rate of intensification, with wind speeds increasing by 65 mph in just 24 hours.

A hotter Gulf and wetter climate create more opportunity for hurricanes to intensify much faster with less notice to call for evacuations, as also seen in more recent storms like Hurricanes Ida and Helene. It’s still hard to predict how much or how fast a storm will strengthen, despite recent advances in forecasting.

Representatives of southern Louisiana communities have pressed the state to overhaul its infrastructure by turning highway shoulders into temporary travel lanes to make it easier for residents to leave as the window for evacuation shortens. But the state’s underfunded Department of Transportation and Development has balked at the multibillion-dollar price tag.

The process of , especially for people living in medical facilities, older adults, or those dealing with chronic health issues. That’s why planning and timing are critical, said Guidry and other medical professionals. Gridlocks, bottlenecks, and vehicle breakdowns can result in injury, even death. In 2005, died in the evacuation of Houston ahead of Hurricane Rita, which also rapidly intensified, largely due to a fatal combination of gridlock and extreme heat.

In 2022, the Louisiana State Legislature created a task force to study the state’s contraflow plan after lengthy evacuation times ahead of Hurricane Ida the year before. When the state enacts contraflow, all travel lanes on main evacuation routes lead out of southeastern Louisiana, allowing more people to leave in a short time frame. It was once the state’s go-to strategy for last-minute mass evacuations, though it isn’t always possible to implement. To launch the state’s current contraflow plan, several triggers must be met at least 72 hours before a storm’s landfall.

“If you go back the last three years, the storms have been pretty serious. Quickly intensifying, shifting direction, and lasting longer,” said Louisiana Rep. Matt Willard (D-New Orleans), who . “So we really do need to take our contraflow processes and evacuation processes seriously and start looking at what they look like over the next decade.”

As hurricanes intensify faster, the state’s existing contraflow plan has grown less feasible. Contraflow is also labor-intensive and can make it harder to stage resources to respond in the aftermath of a storm, so state officials have moved away from the evacuation strategy.

The task force delivered several recommendations, from shortening the time needed to initiate contraflow to repairing evacuation routes closed due to safety. The task force also introduced a strategy used in Texas and Florida: widening existing highways so the shoulders can be used as additional travel lanes to relieve congestion, known as “evaculanes” or “emergency shoulder use.”

The state Department of Transportation and Development declined to pursue any of the recommendations. Instead, state agency spokesperson Rodney Mallett said, officials have focused on encouraging residents not to rely on strategies like contraflow, which is meant to be used rarely as a last resort.

Contraflow requires immense coordination among state and local agencies as well as Mississippi officials. The state has implemented contraflow twice: to evacuate 1.2 million residents ahead of Hurricane Katrina in 2005 and then for a mass evacuation of 2 million residents ahead of Hurricane Gustav in 2008. It was also partially implemented for evacuations ahead of Hurricane Ivan in 2004.

Although contraflow requires less lead time in other states, Louisiana officials say a shorter time frame isn’t possible.

The current 72-hour plan includes 22 hours for transportation staff to prepare the roads and change thousands of signals to switch directions. For Katrina, the state completed preparations for contraflow within six hours, allowing officials to open all lanes for 25 hours before the weather deteriorated.

An Alternative Evacuation Strategy

Louisiana isn’t the only state hesitant to rely on contraflow. Florida, the only state hit by more hurricanes than Louisiana and Texas, has never implemented its contraflow plan. Instead, in 2016, it implemented its plan for emergency shoulder use.

“We were looking for something that was more efficient for us to do that took less resources,” such as law enforcement staff, said Rudy Powell, the Florida Department of Transportation’s chief engineer of operations.

Contraflow is also less safe to operate at night, while emergency shoulders can run continuously without blocking out-of-state resources from entering areas ahead of the storm, such as groceries and other supplies. Depending on which highways need more capacity, Powell said, the emergency use of shoulders takes two to four hours to implement.

“This is our go-to strategy for hurricane evacuation traffic,” Powell said. “The times we implemented it, it’s made a big difference in volume and speed. The whole idea is to keep traffic flowing.”

But the Louisiana transportation department said the strategy would be too expensive.

Unlike Florida, Louisiana hasn’t historically constructed shoulders wide enough to be safely used as temporary travel lanes. The standard for highway and bridge construction in Florida has long required the state to build shoulders at least 10 feet wide. In Louisiana, shoulders must be at least 8 feet wide to accommodate traffic.  They also have to be structurally secure. Louisiana roads and bridges are narrower, such as the shoulders on the Interstate 10 bridge over the Bonnet Carré Spillway.

In 2024, the transportation department estimated that reconstructing the shoulders along I-10, I-59, and I-55 and their bridges would cost at least $1 billion, not including other structures that would need to be rebuilt to accommodate the new shoulder width. Most of that money would go toward widening the bridges, which would cost up to $28 million per mile.

Shawn Wilson led the Department of Transportation under Gov. John Bel Edwards from 2016 until Wilson resigned in early 2023 for an unsuccessful run for governor. He said the agency had begun taking steps toward rehabilitating the state’s inconsistent shoulder construction before he left, even incorporating wider shoulders on new bridges along I-12.

But any road improvements, Wilson said, are weighed against the cheaper cost to simply maintain state highways as they are. Louisiana ranks in transportation spending, and the state’s spending on highways has fallen since 2007. A is the only consistent source of revenue, but it hasn’t been enough even to maintain the state’s aging infrastructure. And the lack of funding has led to a $19 billion backlog in road projects, said Steven Procopio, president of the Public Affairs Research Council of Louisiana. In 2023, the state and federal fuel tax combined raised for the agency. Special capital projects typically rely on state surplus dollars, Procopio said.

He noted the state’s 20-cent-per-gallon fuel tax has been the same since 1990 and much of the revenue goes toward paying off old debt, not new projects.

“Inflation is just eating up the spending power of these dollars,” he said.

When To Leave

Debra Campbell said it took her 14 hours to make the 200-mile drive to Lake Charles when she evacuated New Orleans the day before Hurricane Katrina made landfall. It was the same day then-Mayor Ray Nagin finally called for a mandatory evacuation of the city. (Nagin he could have issued the order earlier.)

“It was hectic,” Campbell said. “It took so many hours for our people to get to safety. But we got out.”

Campbell made it through the slow-moving traffic unscathed, but she said others were plagued with stressors like or threats of violence from other frustrated motorists.

While more than 1 million people made it out of southeastern Louisiana, tens of thousands remained behind. Many couldn’t leave. Some didn’t have a car, while others needed to evacuate or a multiday hotel stay while waiting to return.

Campbell chaired the state’s Contraflow Task Force and leads , a nonprofit that advocates on behalf of low- to moderate-income families in the state. For years, Campbell has advocated for state and local officials to find more ways to get people out of New Orleans and the surrounding parishes, especially people who can’t afford the cost of evacuation.

“The people don’t have the resources to evacuate as it is, so they’re not going to make a move until the very last minute,” she said.

One found that insecure access to transportation can play a key role when making evacuation decisions, including whether residents can receive medical services. Low-income, car-less, and senior residents face an increased health risk throughout a hurricane as a result.

In lieu of infrastructure changes, want residents to leave as early as possible. People who are especially vulnerable to health issues while on the road should prepare their medications, monitor their blood pressure, stay hydrated, and ensure they’re able to stay cool while traveling.

The stress of traveling can exacerbate health conditions, on top of the anxiety that weighs many Louisianians down during hurricane season, said DePaul Community Health Centers pharmacy director Raymond Strong. “For all diseases, whether it’s asthma, hypertension, cancer, or HIV, stress makes it worse,” he said. Planning ahead, he said, can help manage the amount of stress patients feel.

Campbell and others advocating for the state to start planning for more rapidly intensifying storms agree that leaving early is important for safety. But Campbell isn’t convinced it’s realistic, especially for working-class residents.

“People’s finances don’t always allow them to leave early. They have to be pushed to move,” she said, adding that without a mandatory evacuation order, businesses stay open and some people try to stay and work as long as possible. “That’s why we need [the state] to open up all the lanes.”

Although the state isn’t looking to make big changes to its evacuation plans, Campbell said, there has been progress with New Orleans officials. from the city to shelters could soon be more easily accessible. The city is also considering another task force recommendation: to help alert residents during tornadoes and other hazards.

Campbell said she hopes city and state officials continue to think of more ways to help people leave before major hurricanes hit.

“We have to offer them as much as we can,” she said. “The task force needed to meet with the people who could make a difference, but now we need to see it implemented.”

This article was produced in collaboration with Verite News.

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The couple waited months to have sex until Smith felt he could share his medical status. To prepare her, Smith said, he took his girlfriend to his job in HIV prevention at the Philadelphia Center, a northwestern Louisiana nonprofit that offers resources to people with HIV, which also provided him housing at the time.

Finally, he revealed the news: Smith was diagnosed with HIV in 1994 and started taking daily antiviral pills in 2006. The virus could no longer be detected in his blood, and he couldn’t transmit it to a sexual partner.

Smith said his girlfriend seemed comfortable knowing his status. When it came to sex, there was no hesitation, he said. But a couple of years later, when Smith wanted to break up, he said, her tone shifted.

“She was like, ‘If you try to leave me, I’m gonna put you in jail,’” recalled Smith, now 68. “At the time, I really didn’t know the sincerity of it.”

After they broke up, she reported him to the police, accusing him of violating a little-known law in Louisiana — a felony called “.” He disputed the allegations, but in 2013 accepted a plea deal to spend six months in prison on the charge. He had a few months left on parole from a past conviction on different charges, and Smith thought this option would let him move past the relationship faster. He didn’t realize the conviction would also land him on the state’s sex offender registry.

For nearly two decades, Smith had dealt with the stigma associated with having HIV; the registry added another layer of exclusion, severely restricting where he could live and work to avoid minors. Not many people want to hire a sex offender, he said. Smith has been told by the local sheriff’s office he’s not allowed to do simple things, like go to a public park or a high school football game, since the conviction.

“I’ve been undetectable for 15 years, but that law still punishes us,” Smith said.

Louisiana is one of 30 states with criminal penalties related to exposing or transmitting HIV. Most of the laws were passed in the 1980s during the emergence of the AIDS epidemic. Since then, several states have amended their laws to make them less punitive or repealed them outright, including Maryland and North Dakota this year.

But Louisiana’s law remains among the harshest. The state is that may require people such as Smith to register as a sex offender if convicted, a label that can follow them for over a decade. And state lawmakers considered a bill to expand the law to apply to other sexually transmitted infections, then failed to pass it before the session ended.

Meanwhile, people with HIV also face the threat that federal funding cuts will affect their access to treatment, along with prevention efforts, supportive services, and outreach. Such strategies have proved to slow the HIV/AIDS epidemic, unlike the laws’ punitive approach.

The tax and domestic policy law previously known as the “One Big Beautiful Bill” will likely affect HIV-positive people enrolled in Medicaid by reducing federal support for Medicaid and restricting eligibility. About 40% of adults under 65 with HIV rely on Medicaid.

The Trump administration to eliminate HIV prevention programs at the Centers for Disease Control and Prevention and to cancel a grant that helps fund housing for people with HIV. The Ryan White HIV/AIDS program, the largest federal fund dedicated to supporting HIV-positive people, also faces cuts. The program serves more than half of the people in the U.S. diagnosed with HIV, including in Louisiana, according to KFF, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

Public health officials maintain that state laws criminalizing HIV exposure hurt efforts to end the HIV epidemic. Epidemiologists and other that the enforcement of such laws is often shaped by fear, not science. For example, in many states that criminalize HIV exposure, people living with HIV can face heightened criminal penalties for actions that can’t transmit the virus, such as spitting on someone. The laws further stigmatize and deter people from getting tested and treatment, undermining response to the epidemic, experts say.

At least 4,400 people in 14 states have been arrested under these laws, though data is limited and the actual number is likely higher, and the arrests aren’t decreasing, according to analyses by .

“ Some people think it’s an issue that’s gone away, and that simply isn’t the case,” said Nathan Cisneros, a researcher at the Williams Institute.

In Louisiana, found at least 147 allegations reported to law enforcement under the state’s HIV law from 2011 to mid-2022. Black people made up nearly three-quarters of the people convicted and placed on the sex offender registry. Most were Black men, like Smith. At the time of the analysis, Black people made up about two-thirds of HIV diagnoses in the state.

“ We see over and over that Black people are disproportionately affected by the HIV epidemic and disproportionately affected by policing and incarceration in the United States,” Cisneros said.

Nationally, other marginalized groups such as women, sex workers, the queer community, or people who overlap across more than one group are also disproportionately arrested and prosecuted under similar criminalization laws, Cisneros said.

Ensnared in the System

Louisiana’s law hinges on the requirement that if a person knows they have HIV, they must disclose their HIV status and receive consent before exposing someone to the virus.

Louisiana District Attorneys Association Executive Director Zach Daniels said these cases don’t come up often and can be difficult to prosecute. Daniels said the intimate nature of the cases can lead to little evidence in support of either side, especially if the accuser doesn’t contract HIV.

When it comes to talking about one’s sex life, Daniels said, “there are often no other witnesses, besides the two participants.”

Louisiana’s law is written so that “intentional exposure” can occur through “any means or contact.” That includes sex and needle-sharing, practices known to transmit the virus. But the language of the law is so broad that actions known not to transmit the virus — like biting or scratching — could be included, said Dietz, the statewide coordinator for the Louisiana Coalition on Criminalization and Health, an advocacy network founded by people living with HIV that has opposed the law.

The broad nature of the law creates opportunities for abuse, as the threat of being reported under the law can be used as a coercive tool in relationships, said Dietz, who goes by one name and uses they/them pronouns. Such threats, Dietz said, have kept people in abusive relationships and loomed over child custody battles. Dietz said they’ve supported people accused of exposing their children to HIV in ways that are not medically possible.

“ ‘Any means or contact’ could be just merely being around your kids,” they said.

The prosecutors’ organization still supports the law as a recourse for emergency responders who, in rare instances, come into contact with blood or syringes containing the virus. In one recent , the law was used against a local DJ accused of knowingly transmitting HIV to several women without informing them of his status or using a condom.

The person accused of violating the law, not the accuser, must prove their case — that they disclosed their HIV status beforehand. Without a signed affidavit or tape recording, courts can end up basing their decisions on conflicting testimonies with little supporting evidence.

That’s what Smith alleged happened to him.

After his relationship ended, he said, he remembered being called into a meeting with his parole officer where a detective waited for him, asking about his former relationship and whether his girlfriend had known about his HIV status.

Smith said yes. But that’s not what she had told police.

Verite News could not find a working phone number for Smith’s former girlfriend but corroborated the story with the incident’s police report. His attorney at the time, a public defender named Carlos Prudhomme, said he didn’t remember much about the case, and court documents are sealed because it was a sex offense.

In court, it was her word against his. So when he was offered six months in prison instead of the 10-year maximum, he switched his plea from not guilty to guilty. But he said he didn’t know his new conviction would require him to register as a sex offender once he got out — worsening the stigma.

“When people see ‘sex offender,’ the first thing that comes to their mind is rape, child molester, predator,” Smith said. “This law puts me in a category that I don’t care to be in.”

He has tried to make the most of it, despite the expense of paying fees each year to reregister. After being rejected from jobs, he started a catering business and built a loyal clientele. But he said he’s still stuck living in a poorly maintained apartment complex primarily inhabited by sex offenders.

“I understand their strategy for creating this law to prevent the spread, but it’s not helping. It’s hurting; it’s hindering. It’s destroying people’s lives instead of helping people’s lives, especially the HIV community,” he said. “They don’t care about us.”

The Case for Reform

Since 2014, there has been a nationwide effort to update or repeal state laws that criminalize HIV nondisclosure, exposure, or transmission. A dozen states have changed their laws to align more closely with modern science, and four have gotten rid of them completely in hopes of reducing stigma and improving public health outcomes, according to the .

Sean McCormick, an attorney with the center, said these changes are influenced partly by a growing body of evidence showing the laws’ negative consequences.

McCormick said the laws offer a “clear disincentive” for people to get tested for HIV. If they don’t know their status, there’s no criminal liability for transmission or exposure.

A by Centers for Disease Control and Prevention and DLH Corp. researchers found that after California updated its HIV criminalization law in 2018, respondents were more likely to get tested. Meanwhile, survey respondents in Nevada, which still had a more punitive law on the books, were less likely to get tested.

There’s no one-size-fits-all solution, McCormick said. His center works with HIV-positive people across the country to determine what legislative changes would work best in their states.

Texas was the first .

“As a person living with HIV in Texas, I’m deeply appreciative that we don’t have an HIV-specific statute that puts a target on my back,” said Michael Elizabeth, the public health policy director for the Equality Federation.

But Elizabeth points out that Texans living with HIV still face steeper penalties under general felony laws for charges such as aggravated assault or aggravated sexual assault after state courts in Texas equated the bodily fluids of a person with HIV with a “deadly weapon.”

Louisiana activists have pushed lawmakers in the state to amend the law in three ways: removing the sex offender registration requirement, requiring transmission to have occurred, and requiring clear intent to transmit the virus.

“Our strategy, as opposed to repeal, is to create a law that actually addresses the kind of boogeyman that they ostensibly created the law for: the person who successfully, maliciously, intentionally transmits HIV,” said Dietz with the Louisiana Coalition on Criminalization and Health.

In 2018, a bill to narrow the statute was amended in ways that expanded the law. For example, the updated law no longer had any definition of which actions “expose” someone to HIV.

In 2023, state lawmakers created a task force that recommended updating Louisiana’s law to align with the latest public health guidelines, limit the potential for unintended consequences, and give previously convicted people a way to clear their record.

Lawmakers in the state House pushed forward a bill this year to criminalize other sexually transmitted infections, including hepatitis B and the herpes simplex virus. That bill died in the Senate, but it spurred the creation of another legislative task force with a nearly identical mission to that of the first.

“ This state has no idea how closely we just dodged a bullet,” Dietz said.

In the meantime, the Louisiana coalition is helping Smith petition the state to take his name off the sex offender registry. Louisiana law allows people to petition to have their names removed from the registry after 10 years without any new sex crime convictions. Smith expects his case to be approved by the end of the year.

Despite the difficulty of the past 12 years, he said, he’s grateful for the chance to be free from the registry’s restrictions.

“It’s like a breath of fresh air,” Smith said. “I can do stuff that I wanted to do that I couldn’t. Like, go to a football game. Simple stuff like that, I’m going to be ready to do.”

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