The program, called “Georgia Pathways to Coverage,” is the nation’s only active Medicaid work requirement.

Pathways has cost tens of millions in federal and state dollars on administration and consulting fees while enrolling 5,542 people as of Nov. 1, according to ºÚÁϳԹÏÍø News’ reporting. The congressional letter cited the reporting in its request to the Government Accountability Office.

“Republicans are hell-bent on putting mountains of red tape between Americans and their health care,” Sen. (D-Ore.), head of the Senate Finance Committee, said in a statement about the letter he co-wrote. “Taxpayers deserve to hear from an independent watchdog about the true costs of the Republican health care agenda.”

Georgia Sens. and co-signed the request.

The Democrats’ letter asks the GAO to prepare a summary of the costs to run the program — and detail how much of that has been picked up by the feds, break down the cost of the program per person, and assess how Georgia has used contractors to run the program and how federal officials have overseen it.

The request comes as President-elect Donald Trump, who supported work requirements in his first administration, is set to take office and potentially transform how people qualify for Medicaid, the joint federal-state health insurance program for people who are disabled or have low incomes.

Many GOP-led states have pushed for work requirements in public benefits programs such as Medicaid, arguing that they promote employment. Georgia’s Pathways program requires some Medicaid applicants to prove they are working, volunteering, or studying for 80 hours a month.

The first Trump administration in 13 states. Only Georgia’s program, which started on July 1, 2023, is in effect. A Medicaid work requirement launched in Arkansas was halted by a court order in 2019.

In November, South Dakota voters gave lawmakers a green light to seek a work requirement for some Medicaid enrollees. In 2023, North Carolina lawmakers if the federal government would approve such a waiver. And some GOP-led states have indicated they might also seek work requirements.

Georgia’s program has been a priority of Republican Gov. , and his team defended the program.

“The Senators should be more focused on examining the failures of the federal government to adequately provide the services they’re required to administer than looking for every opportunity to criticize states that are taking innovative approaches,” Garrison Douglas, a Kemp spokesperson, said in an emailed statement.

Enrollment in the program, which as of Dec. 13 was 5,903, has fallen far short of the state’s initial projection of more than 25,000 in the first year.

The program has cost more than $40 million in state and federal funds, largely administrative costs and not medical care for enrollees, Georgia officials have said. ºÚÁϳԹÏÍø News reported in March that Georgia officials estimated the program’s administrative costs could increase to $122 million over four years.

A spokesperson for Georgia’s Medicaid agency, Fiona Roberts, said the costs “increased significantly” because of the program’s delayed launch. While it was approved by the Trump administration, the Biden administration attempted to block it, resulting in a legal fight.

ºÚÁϳԹÏÍø News has also reported that the program has slowed processing times for other Medicaid applications and for public benefits such as cash assistance and food stamps.

Meanwhile, more than a year after Pathways’ launch, Georgia officials said they still had not removed enrollees for failing to prove they are working, volunteering, or studying for 80 hours a month, ºÚÁϳԹÏÍø News has reported.

“State leaders continue to put taxpayer dollars behind their ineffective health care program that has failed by nearly every metric,” Warnock said.

Previous federal research suggests that the high costs per enrollee associated with Georgia’s program could be repeated elsewhere. The Trump administration didn’t properly weigh administrative costs in state applications for work requirements, according to . Pathways is slated to expire on Sept. 30, unless federal officials grant an extension.

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The children, Deas said, often have been exposed to violence on hotel properties, exhibit aggression or anxiety from living in a crowded single room, and face food insecurity because some hotel rooms don’t have kitchens.

“Social trauma is the biggest challenge” when students first arrive, Deas said. “We hear a lot about sleep problems.” To meet students’ needs, Deas developed a schoolwide program featuring counselors, a food pantry, and special protocols for handling those who may fall asleep in class.

“Beyond the teaching, there’s a social part,” he said. “We have to find ways to support the families as well.”

Extended-stay hotels are often a last resort for low-income families trying to find housing. Nationally, more than 100,000 students lived in extended-stay hotels in 2022, according to the Department of Education, though officials say that is likely an undercount. Children living in hotels are considered homeless under federal law, and in some Atlanta-area counties about 40% of homeless students live in this kind of housing, according to local officials.

And with rising rents and evictions, and decreased access to federal public housing, the use of extended-stay hotels as a long-term option is becoming more frequent. Like other forms of homelessness, hotel living can lead to — or exacerbate — physical and mental health problems for children, say advocates for families and researchers who study homelessness.

In the Atlanta area, inspections of extended-stay hotels have revealed ventilation issues, insect infestations, mold, and other health threats. Children living there also can experience or witness crime and gun violence. The increasing use of extended-stay hotels is a warning sign, observers said, a reflection of the lack of sufficient affordable housing policy in the U.S.

And the crisis is having “lifelong consequences,” said Sarah Saadian of the National Low Income Housing Coalition. “The only way that we can really address that shortage is if there are significant federal resources at scale. Build more housing and bridge the gap between rents and wages.”

Often, evictions force families into hotels — and can keep them trapped there. Many landlords refuse to rent to people with evictions in their credit history, even if the tenant isn’t responsible for the displacement, said Joy Monroe, founder and CEO of the Single Parent Alliance & Resource Center, or SPARC, a nonprofit group in metro Atlanta that has helped hundreds of families move from hotels to apartments or rental homes.

Black women and other women of color, often with kids, are evicted at much higher rates and are more likely to find themselves living in extended-stay hotels, advocates say.

Some residents are also families fleeing domestic violence, they say.

Hotels often don’t require security deposits, application fees, or background checks, thus providing immediate relief for families seeking shelter. While there are higher-end options, the average rate for an economy-class extended-stay room was $56.68 a night during the first three months of 2024, according to the Highland Group, a research firm that focuses on the hotel sector — which works out to more than $1,700 a month.

And while the rooms offer respite from other forms of homelessness — like sleeping in a car or in a tent — a hotel “is no place to raise children,” said Michael Bryant, CEO of New Life Community Alliance, which helps families in South Dekalb, a part of metro Atlanta, move from hotels to homes.

Children living in hotels are often behind on vaccinations, and they may end up in the emergency room because of delays in care, said Gary Kirkilas, a pediatrician in Phoenix who helps children, teens, and families who are presently homeless or at risk of homelessness. About 75% of children with unstable housing whom he sees have at least one developmental delay, and others experience significant emotional and behavioral issues.

Tanazia Scott, who has bounced between two extended-stay hotels for several months, said her three children “feel depressed and upset” over hotel life.

An eviction sent Kassandra Norman, 58, and her two daughters into a months-long journey of staying in Atlanta-area hotels. For three months, they slept in a car outside a convenience store. “It’s hard to do homework in a car and in the hotel,” said 19-year-old Kazuri Taylor, Norman’s younger daughter.

Some hotels prohibit kids from playing outside in their parking lots, leading to additional stress, advocates say. That was the reason Yvonne Thomas, 45, and her family were evicted from an extended-stay hotel in DeKalb County, she said: “They put us out for nothing.”

And there are other problems. More than a dozen students at Dunaire Elementary live on an extended-stay property called Haven Hotel. In August, the hotel had “not maintained minimum life safety standards.” Roaches and spiders live in rooms and breezeways, according to state health inspection reports. Residents say they have been charged $1 for a roll of toilet paper.

The hotel’s owner and manager could not be reached for comment after multiple attempts.

“No one is talking about these families,” said Sue Sullivan, a community advocate and a volunteer with the Motel to Home coalition in Atlanta, who brings toys, bookbags, food, and toiletries on her hotel visits.

A February public health inspection at another DeKalb County hotel found several rooms with poor ventilation, insect infestation, and mold, among other potential health threats. In May, two people were fatally shot there.

Children who witness violence can develop anxiety, depression, and other disorders, said Charles Moore, director of the Urban Health Initiative at Emory University School of Medicine. “They can feel emotional aftershocks,” said Moore, who has visited Atlanta-area hotels.

Closing such hotels, however, can hurt families, given the shortage of affordable housing, the absence of national federal renter protections, and a dearth of places to go, said Terri Lewinson, an associate professor at the Dartmouth Institute for Health Policy and Clinical Practice. Extended-stay hotels do “offer a low-barrier option for families who have no other options,” she said.

To alleviate the housing problem, county officials and nonprofit organizations around the country have been creatively filling the gap. In the Seattle area, for example, King County officials purchased hotels and converted them into affordable housing, said Mark Skinner of the Highland Group.

In metro Atlanta, SPARC and the local United Way’s Motel to Home offer funding to help people transition into an apartment.

In DeKalb County, where Dunaire Elementary School is located, more than a third of the 1,300 homeless students live in hotels, according to Commissioner Ted Terry.

“I hope we can rescue the children,” he said. “It’s not a safe environment for them.”

Advocates who seek to help people living in hotels propose the construction of more affordable housing and stronger protections for renters against eviction. The federal government has failed to invest in repairs needed to maintain current public housing units, and 25-year-old legislation effectively prohibits the construction of new public housing.

It’s also “extremely fast, easy, and cheap” to evict tenants in Georgia, said Taylor Shelton, an associate professor of geosciences at Georgia State University, whose research focuses on social inequalities and urban spaces. “The playing field is tilted heavily toward landlords.”

Under such circumstances, the cycle of poverty is difficult to break, said Jamie Rush, a senior staff attorney at the Southern Poverty Law Center. “Most parents would want their kids in a safe, stable home,” Rush said. “You can’t budget your way out of poverty.”

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A fifth patient with similar symptoms later arrived at another local facility, according to a health system spokesperson.

The day after the Sept. 4 school shooting that killed two students and two teachers, some 80 families showed up in a county office to receive counseling from volunteer therapists who converged from across the Atlanta metro area, according to one medical provider. That Sunday, nine people received free treatment at a local church for post-traumatic stress disorder from volunteering Atlanta-area providers. On Monday, the state to help locals find counseling, faith-based support, or other aid. The needs are still great.

“We don’t really … know how we’re doing,” Amanda McKee — whose son, Asa Deslonde, is a senior at Apalachee — said two days after the shooting. “It’s second by second. It’s minute by minute. The last couple days have been unimaginable.”

When shootings of any magnitude occur, they often leave the survivors with invisible injuries that can create life-changing symptoms that sometimes paralyze them.But such problems can take time to emerge. Panic attacks and anxiety can spike across a community after a shooting and can be most intense when people return to the scene, said , chair of the Council on Communications for the .

So health providers worry that in the coming days, months, and years the community will struggle to find help for their mental health needs. Barrow County, along a highway that connects Atlanta to the college town of Athens, is a community where agriculture is steadily giving way to development.

Prior to the shooting, the area had one stand-alone inpatient mental health facility, located in Gainesville, about 30 miles away from where the shooting occurred in Barrow County, that was “constantly overwhelmed,” said Sean Couch, a spokesperson for Northeast Georgia Health System. And, the latest federal data shows, Barrow would need to add at least 13 full-time providers to no longer be considered a mental health workforce shortage area.

“We put a band-aid on a chronic situation and that band-aid isn’t going to last,” said Roland Behm, a co-founder of the Georgia Mental Health Policy Partnership, an advocacy group that represents mental health organizations in the state. “What happens three months from now?”

The scarcity of mental health providers in Barrow County is emblematic of the state as a whole. Georgia ranks nearly last among states in access to mental health care resources, according to , a nonprofit that advocates for increased mental health spending. More than live in mental health care professional shortage areas like Barrow County.

Paying for mental health care to treat such trauma is difficult nationwide. But Georgia is one of the 10 states that have for Medicaid, the nation’s safety net insurance for those with low incomes and also the largest payer for mental health services. The state has an uninsured rate of 13.6%, which is 4.1 percentage points higher than the country as a whole, according to from the U.S Census Bureau.

Even people with private health plans have trouble finding affordable, in-network mental health care because of a lack of providers willing to accept low insurance reimbursement rates, Behm said.

Tamara Conlin, CEO of , said the people who came to the initial counseling sessions that her group helped arrange in a county office showed a lot of sadness and anxiety.

“Some of them are still in shock and trying to wrap their heads around what happened,” she said.

Even before the shooting, students at Apalachee High School reported significant mental health challenges.

Nearly 200 of 1,725 student respondents reported that they had seriously considered attempting suicide one or more times in the prior year, according to . Top motivators included problems with peers, friends, or family. About half of the students from the school who answered said they felt sad, depressed, or withdrawn at least once in the prior 30 days.

County residents complained about having to travel for psychiatric care and said the “shortage of psychologists and counseling services led to untreated high anxiety and depression rates,” during a 2019 about health care access.

The lack of mental health care remained a top concern in the region during a . That year, the opioid overdose death rate in Barrow County was among the highest in Georgia, according to , and the five-year suicide rate was .

The Barrow County School System, which includes Apalachee High School, received a to boost mental health resources in schools from 2023 through 2028.

But immediately following the shooting, mental health providers across the region still had to cobble together free resources for area residents. Three volunteers helped with last Wednesday’s response at Northeast Georgia Medical Center Barrow. Advantage Behavioral Health Systems kept its Barrow clinic open on Sunday and is providing counselors to community events and local schools as they reopen.

William Smith, who heads the Atlanta Center for EMDR, is planning sessions using eye movement desensitization and reprocessing therapy to address PTSD — at least one for first responders and another for residents.

Over the weekend, brought nine golden retrievers as “comfort dogs” to help the grieving. The group’s dogs have been deployed in the wake of other school shootings, including the Uvalde, Texas, massacre.

“We can’t fix what they’re feeling,” said volunteer Paul Soost, as people gathered around a campus flagpole where they delivered flowers and messages. “We can provide comfort.”

Many health care providers expect the community’s needs to spike when students return to Apalachee High School and as the national attention on the shooting recedes.

“That’s when people start experiencing the trauma,” said Conlin, with Advantage Behavioral Health Systems, who compared the current crisis to the surge of patients she saw after the immediate threat of the covid-19 pandemic passed.

Her clinic in Barrow County already had about 750 active clients before the shooting, with about 120 under the age of 18.

McKee said she knows healing will be a long process for her son, Asa. One of his football coaches, , was among the four killed. A key step came the day after the shooting, she said, when the school’s head football coach convened the team to share how much he was hurting.

“The coach validated that they were hurt, and encouraged them to embrace that they were injured,” McKee said. “They’re not the physical injuries that were incurred by the senseless act, but they are injuries nonetheless.”

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In the town of Cuthbert, some 160 miles away, the Southwest Georgia Regional Medical Center also remains shut after closing four years ago, another Southern hospital casualty in a region dotted with them. Even a smaller facility replacing the former Cuthbert hospital “would be tremendous for the county,” said Steve Whatley, chair of the Randolph County Hospital Authority.

The two hospitals — one inner-city, the other rural — faced some of the same financial pressures, including not having enough patients with private insurance.

This year, they also shared the attention of some of Georgia’s most powerful lawmakers. by Gov. Brian Kemp, a Republican, included a provision pushed by U.S. Sen. Jon Ossoff, a Democrat.

The law amends the state’s “certificate of need” system, which allows existing hospitals and other health facilities to block would-be competitors’ plans to expand by arguing there’s insufficient need for their services.

Certificate of need laws exist in , according to the National Conference of State Legislatures. The hospital industry, especially nonprofit facilities, generally support the rules, and have argued they reduce health care costs and preserve access to quality medical services. Under CON requirements, health providers must obtain approval from the state before offering some new services or before building or expanding facilities.

Whether the laws improve care or reduce costs is questionable, researchers have found, and critics say more competition would decrease spending by insurers and consumers. In 2018, the Trump administration issued a report recommending that states their certificate of need requirements, arguing they increase health care costs.

“The evidence is pretty darn overwhelming that CON laws don’t achieve the initially stated goals of increasing access, lowering costs, and improving quality,” said Matthew Mitchell, a senior research fellow at West Virginia University.

Dan Sullivan, a Georgia-based consultant who often helps hospitals and other medical providers in their effort to preserve the laws, said that by limiting the number of providers offering very specialized health services, such as organ transplants, states can better maintain high quality of care.

Certificate of need laws can reduce fraud, Sullivan said. Florida repealed its certificate of need requirements for hospitals and many other health providers following the Trump administration’s recommendation. Fraud accelerated in the state after regulations were phased out, he said.

“At least when you file a CON, there’s at least a minimum of investigation,” Sullivan said.

He argued another benefit of the laws is that they frequently mandate a baseline level of charity care.

Other Southern states recently peeled back their certificate of need laws. Tennessee’s legislature passed a bill this year exempting more medical providers from needing to apply for a certificate. North Carolina rolled back some restrictions in an overhaul that paved the way for Medicaid expansion last year. South Carolina made a significant change to its rules last year.

This year, Republicans in Georgia’s legislature attempted to repeal the state’s certificate of need rules. The effort fell short in the face of fervent hospital opposition.

The narrower legislation that Kemp signed would instead ease the rules for building rural hospitals and exempts a potential new hospital that would partner with Morehouse School of Medicine, one of the country’s few historically Black medical schools.

That could potentially fill much of the gap left by Atlanta Medical Center’s closing.

Hospital industry officials said Morehouse would probably need a well-heeled partner, and Atrium Health, part of Charlotte, North Carolina-based Advocate Health, may be a logical match. The growth-oriented nonprofit health system has partnered with Morehouse Healthcare to run a clinic in East Point, south of Atlanta, and has a growing presence in the state. Both Morehouse and Atrium declined to discuss a potential hospital partnership with ºÚÁϳԹÏÍø News.

The shuttered AMC main campus, meanwhile, is ensnared in a moratorium the city imposed on redeveloping the site — a response to the jolting decision by its owner, Wellstar Health System, to close the hospital.

In 2022, Mayor Andre Dickens temporarily halting any new development on the site. He has criticized the “unusually abrupt closure of one of Atlanta’s most important medical centers.”

Atlanta’s city council extended the ban another 120 days in June.

A new inner-city hospital “would be a heavy lift financially,” said Josh Berlin, CEO of rule of three, an Atlanta-based health care consulting firm. That’s because it would draw largely from the area’s high level of uninsured and Medicaid patients. Georgia is one of 10 states that have not fully expanded Medicaid, and thus has a high rate of uninsured patients.

“You’ve got a community that is struggling to find care in the wake of the Atlanta Medical Center closure,” he said.

Grady Memorial Hospital and other Atlanta facilities have seen a bump in patient volume since the closure of AMC. Grady is regularly deemed “dangerously overcrowded” in .

The need to handle additional patients has sped up expansion plans for Grady, including adding more than 150 beds, said its chief strategy officer, Shannon Sale. “We knew that was going to be needed over time. The Atlanta Medical Center closure sped up that process,” she said.

In southwestern Georgia, plans are more modest.

Community leaders, including Whatley, are awaiting the results of a feasibility study that is expected to propose a downsized “rural emergency hospital,” a new federal designation that directs extra funding to eligible facilities.

The program guarantees hospitals in rural communities extra Medicare payments and an additional payment of about $3.2 million a year if they close costly inpatient services and offer only emergency and outpatient care.

Ossoff won almost $12 million in three different appropriations bills to support a rural emergency hospital in Cuthbert. He said he met with state leaders to secure the provision in the Georgia certificate of need bill that would allow it to reopen. Southwest Georgia Regional Medical Center would also have to get an exemption from federal officials to qualify for a rural emergency hospital because of its closing date.

“This is a very challenging thing to do, and we’ve still got significant hurdles to clear,” Ossoff told ºÚÁϳԹÏÍø News.

Even if it reopens, the Cuthbert facility will face the same pressures that led to its shuttering in the first place — what Ossoff called “failures of state policy.” At the time, Georgia’s decision not to fully expand Medicaid in the wake of the closure.

Brenda Clark, who works in a wellness center across the street from the closed Cuthbert hospital, said some locals are skeptical about the facility reopening.

“It’s much needed. People are hoping and praying we get it back,” she said. But “there are some people who say, ‘We’ll believe it when we see it.’”

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Whitehouse, a consultant for a local health care company that wants to build a hospital there with at least 150 beds, said the group could break ground within a year. The idea, he said, is to provide medical services beyond those currently provided by Wellstar Sylvan Grove Medical Center, an aging, nonprofit “critical access” hospital that offers limited services, including emergency care, rehabilitation, wound care, and imaging.

But it took a new law, pushed by the state’s powerful Republican lieutenant governor, Burt Jones, to clear the way for construction. The land is partly owned by his father, Bill Jones, a successful businessman whose interest in developing a hospital in his home county drew attention from state Democrats and the hospital industry.

The situation has been portrayed as “this billionaire entrepreneur, Bill Jones, exploiting the legal system through his son, imposing his will on people and trying to cash in,” Whitehouse said. “Nothing could be further from the truth.”

Woven through the drama in Butts County are arcane but consequential rules that require state approval for hospital construction and expansion. The rules, used nearly nationwide until the 1980s, require potential builders to apply for permission for new projects. State officials evaluate need based on criteria such as population growth and existing hospital capacity.

This year, Georgia lawmakers joined several other states in targeting those “certificate of need,” or CON, regulations for dramatic change. Some states have exempted certain medical providers from the process; others have been more dramatic, including South Carolina, which is .

Attempts to pave the way for a new hospital in Butts County show how debate over certificate of need laws can intensify as legislatures try to reconcile the often conflicting priorities of politicians, the health care industry, and communities.

The laws have been criticized for limiting competition, and some health care analysts, like Matthew Mitchell, a senior research fellow at West Virginia University, feel everyday people may get the short end of the stick.

“This kind of a regulation is often there because powerful businesses want them,” Mitchell said, “not because they protect consumers.”

Bill Jones, a 79-year-old former state legislator, supported a 2022 legislative push to open a new hospital in Butts County. But the effort ran into formidable opposition from Wellstar Health System, which operates Sylvan Grove and 10 other hospitals in Georgia.

“As a nonprofit health system, we are always exploring partnerships that expand our mission of enhancing wellbeing in the communities we serve,” said Matthew O’Connor, a Wellstar spokesperson. “Our analysis indicates that another hospital in this area is not needed at this time.”

This year, Georgia Democrats thought they could leverage Republicans’ interest in loosening the rules to gain support for Medicaid expansion. But Democrats were outnumbered in the legislature, and lawmakers eased several rules without that trade-off.

For example, certain hospital projects in rural counties are now exempt. Jones’ project and his home county look likely to benefit.

Burt Jones, Georgia’s lieutenant governor, who is being investigated for his role as a fake elector for Donald Trump in the 2020 presidential election, maintains his push for changes to the rules isn’t about helping his father.

“It will give people access to health care in a reasonable travel time and convenience for them as well,” Burt Jones said.

Bill Jones has used Butts County as the home base to build his business network, which includes petroleum distribution, retail convenience stores, and fast-food restaurants. In a recent interview, he complained about media coverage of his son’s legislative connection to the hospital project.

He said his interest in opening another local hospital is about community need and, at least in part, stems from his personal experience. His wife gets medical services at Emory Healthcare, more than 40 miles away in Atlanta.

“You’re not going to get the attention you need medically” at the 25-bed Sylvan Grove hospital in Jackson, he said. “Health care ought not to be about politics.”

But the lieutenant governor had to be somewhat aware that legislation he was pushing could be seen as financially benefiting a close family member, said Josh McLaurin, a Democratic state senator whose district runs from Atlanta into its northern suburbs. Fellow members of the Democratic Party were encouraged to support the certificate of need bill, even though the GOP has a majority in the Georgia Legislature, he said.

“If they want Democrats on board on a bill they could probably pass without our votes, that tends to suggest that there’s a concern about the narrative,” McLaurin said.

Hospital industry lobbyists, aware of the Jones-Butts County connection, watched the debate with fear of wholesale repeal of the certificate of need laws, which ultimately didn’t happen.

The final bill doesn’t name Butts County specifically. But it does exempt “a new general acute care hospital in a rural county” from having to obtain a certificate of need. With a population of about 27,000, Butts County meets the definition of “rural” outlined in Georgia law.

Now, the small local company for which Whitehouse works — Interstate Health Systems, which is partly owned by Bill Jones — is moving forward. Land is being cleared for medical office buildings, potentially to lure providers to the area.

Whitehouse said major hospital systems already operating in Georgia are interested in partnering on construction and operation of a new facility.

Members of the Butts County Hospital Authority, which oversees Sylvan Grove, declined to comment. But last year, county commissioners passed encouraging the hospital authority to pursue a new facility.

Byrd Garland, a retired attorney and former hospital authority member, said he’d appreciate any project that gives people local access to health care, “so they don’t have to drive an hour or two hours to get to it.”

Garland said he’s received both good and bad care at Sylvan Grove, and sometimes would rather make the trek to Atlanta to a better-resourced hospital.

“You get that kind of mindset when you’ve grown up out here in this medical desert that we’re in now,” he said.

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Like other residents, she got an unwelcome surprise in October 2022 at a public forum held by the Environmental Protection Agency at the historic Monumental Baptist Church, known for its role in the civil rights movement. The EPA notified the predominantly Black community that Sterilization Services of Tennessee —which began operations in the brick building in the 1970s — had been emitting unacceptably high levels of ethylene oxide, a toxic gas commonly used to disinfect medical devices.

Airborne emissions of the colorless gas can increase the , including breast cancer. Sims, who is 59 and Black, said she developed breast cancer in 2019, despite having no family history of it, and she suspects ethylene oxide was a contributing factor.

“I used to be outside a lot. I was in good health. All of a sudden, I got breast cancer,” she said.

Local advocates say the emissions are part of a pattern of environmental racism. The term is often applied when areas populated primarily by racial and ethnic minorities and members of low-socioeconomic backgrounds, like southwest Memphis, are burdened with a disproportionate amount of health hazards.

The drivers of environmental racism include the promise of tax breaks for industry to locate a facility in a heavily minority community, said Malini Ranganathan, an urban geographer at American University in Washington, D.C. The cheaper cost of land also is a factor, as is the concept of NIMBY — or “not in my backyard” — in which power brokers steer possible polluters to poorer areas of cities.

A manager at Sterilization Services’ corporate office in Richmond, Virginia, declined to answer questions from ºÚÁϳԹÏÍø News. An attorney with Leitner, Williams, Dooley & Napolitan, a law firm that represents the company, also declined to comment. Sterilization Services, in a legal filing asking for an ethylene oxide-related lawsuit to be dismissed, said the use of the gas, which sterilizes about half the medical devices in the U.S., is highly regulated to ensure public safety.

Besides southwest Memphis, there are nearly two dozen locales, mostly small cities — from Athens, Texas, to Groveland, Florida, and Ardmore, Oklahoma — where the EPA said in 2022 that plants sterilizing medical devices emit the gas at unusually high levels, potentially increasing a person’s risk of developing cancer.

The pollution issue is so bad in southwest Memphis that even though Sterilization Services planned to close shop by April 30, local community leaders have been hesitant to celebrate. In a letter last year to a local Congress member, the company said it has always complied with federal, state, and local regulations. The reason for its closure, it said, was a problem with renewing the building lease.

But many residents see it as just one small win in a bigger battle over environmental safety in the neighborhood.

“It’s still a cesspool of pollution,’’ said Yolonda Spinks, of the environmental advocacy organization Memphis Community Against Pollution, about a host of hazards the community faces.

The air in this part of the city has long been considered dangerous. An spews a steady plume of white smoke. A coal plant, which is now closed, leaked components of coal ash, such as arsenic, into the ground and groundwater, according to from the Tennessee Valley Authority. The TVA is proposing to gut an existing gas plant and replace turbines in the facility with new ones. A continual stream of heavy trucks chug along nearby highways and roads. Other transportation sources of air pollution include the Memphis International Airport and barge traffic on the nearby Mississippi River.

Lead contamination is also a concern, not just in drinking water but in the soil from now-closed lead smelters, said , a professor of environmental health at the University of Memphis. Almost all the heavy industry in Shelby County — and the associated pollutants — are located in southwest Memphis, Jia added.

Sources of pollution are often “clustered in particular communities,” said Darya Minovi, a senior analyst with the Union of Concerned Scientists, a nonprofit that advocates for environmental justice. When it comes to sterilizing facilities that emit ethylene oxide, areas inhabited largely by Black, Hispanic, low-income, and non-English-speaking people are disproportionately exposed, the group has found.

Four sites that the EPA labeled high-risk are in low-income areas of Puerto Rico. Seven sterilizer plants operate in that U.S. territory.

The EPA, responding to public concerns and to deepened scientific understanding of the hazards of ethylene oxide, recently released rules that the agency said would greatly reduce emissions of the toxic gas from sterilizing facilities.

KeShaun Pearson, who was born and raised in south Memphis and has been active in fighting environmental threats, said he is frustrated that companies with dangerous emissions are allowed to create “toxic soup” in minority communities.

In the area where the sterilization plant is located, 87% of the residents are people of color, and, according to the Southern Environmental Law Center, life expectancy there is about 10 years lower than the average for the county and state. The population within 5 miles of the sterilizer plant is mostly low-income, according to the Union of Concerned Scientists.

Pearson was part of Memphis Community Against the Pipeline, a group formed in 2020 to stop a crude oil pipeline that would have run through Boxtown, a neighborhood established by emancipated slaves and freedmen after the signing of the Emancipation Proclamation of 1863.

That campaign, which received public support from former Vice President Al Gore and actress-activist Jane Fonda, succeeded. After the ethylene oxide danger surfaced in 2022, the group changed the last word of its name from “pipeline” to “pollution.”

Besides breast and lymphoid cancers, animal studies have linked inhaling the gas to tumors of the brain, lungs, connective tissue, uterus, and mammary glands.

Last year, with the help of the Southern Environmental Law Center, the south Memphis community group urged the Shelby County Health Department to declare the ethylene oxide situation a public health emergency and shut down the sterilizing plant. But the health department said the company had complied with its existing air permit and with the EPA’s rules and regulations.

A health department spokesperson, Joan Carr, said Shelby County enforces EPA regulations to ensure that companies comply with the federal Clean Air Act and that the agency has five air monitoring stations around the county to detect levels of other pollutants.

When the county and the Tennessee Department of Health did a cancer cluster study in 2023, the agencies found no evidence of the clustering of high rates of leukemia, non-Hodgkin lymphoma, or breast or stomach cancer near the facility. There were “hot and cold spots” of breast cancer found, but the study said it could not conclude that the clusters were linked to the facility.

Scientists have criticized the study’s methodology, saying it did not follow the Centers for Disease Control and Prevention’s recommendations for designing a cancer cluster investigation.

Meanwhile, several people have sued the sterilizing company, claiming their health has been affected by the ethylene oxide emissions. In a lawsuit seeking class-action status, Reginaé Kendrick, 21, said she was diagnosed with a brain tumor at age 6. Chemotherapy and radiation have stunted her growth, destroyed her hair follicles, and prevented her from going through puberty, said her mother, Robbie Kendrick.

In response to proposed stricter EPA regulations, meanwhile, the Tennessee attorney general helped lead 19 other state AGs in urging the agency to “forgo or defer regulating the use of EtO by commercial sterilizers.”

Sims said she’s glad her neighborhood will have one less thing to worry about once Sterilization Services departs. But her feelings about the closure remain tempered.

“Hope they don’t go to another residential area,” she said.

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[Clarification: This article was updated at 3:15 p.m. ET on May 1, 2024, to specify which substances leaked into the ground and groundwater and what changes will occur related to the Tennessee Valley Authority’s activities in Shelby County, Tennessee.]

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Kemp’s Georgia Pathways to Coverage offers government health insurance to people earning up to the federal poverty level — $15,060 for an individual adult — if they can document that they’re working, in school, or performing other qualifying activities.

Since July, when the program began, about 3,500 people have signed up, according to state officials. That’s a small fraction of the Georgians who could enroll if the state expanded Medicaid without such requirements.

Republican leaders in several states have sought to require that people who are eligible for Medicaid through expansion work, arguing the health program for low-income Americans shouldn’t be a handout. Kemp’s experiment, aimed at single adults with low incomes who aren’t already eligible for Medicaid, is the only current effort to survive legal challenges. But critics say it creates obstacles for people in need of health care while wasting taxpayer dollars on technology, consultants, and attorney’s fees.

The Pathways program is “fiscally foolish and anti-family,” said Joan Alker, executive director and co-founder of Georgetown University’s Center for Children and Families. She noted that full-time caregiving does not qualify someone for eligibility into the program. “A lot of taxpayer money has been wasted,” she said, “and not on health care for people who need it.”

The state projected that administrative costs will increase to $122 million over four years, mostly in federal spending, as it rolls out key features of the program, including the collection of premiums and verifying enrollees’ eligibility, according to an internal planning document dated December 2022 obtained by ºÚÁϳԹÏÍø News. The primary consultant for the project is Deloitte, which is collecting hefty fees.

Georgia’s GOP-led state legislature has rejected what Democrats say would be a far simpler way to cover the state’s low-income workers: expanding Medicaid under the Affordable Care Act. That could make at least 359,000 uninsured people in Georgia newly eligible for Medicaid, according to KFF data. In addition, Georgia could reduce state spending by $710 million over two years,

Despite Georgia’s rocky implementation experience, state Republican leaders have put off considering a full Medicaid expansion. And such conservative states as Mississippi, Idaho, and South Dakota are weighing similar work requirements.

“You’re spending money, primarily here, to put people through an extra set of hoops before they get coverage,” said Benjamin Sommers, a professor of health care economics at Harvard T.H. Chan School of Public Health.

The low enrollment for Pathways has disappointed supporters, as the state projected more than 25,000 residents would enroll during its first year and 52,000 by the end of five years, according to its application to the federal government.

Chris Denson, director of policy and research at the conservative Georgia Public Policy Foundation, which supports Pathways, said the low enrollment numbers are “just part of the ramping up.”

The program was intended to start in July 2021 but was delayed two years due to legal wrangling. In December 2022, Georgia officials told the federal Centers for Medicare & Medicaid Services that it would cost at least $51 million over two years to design, develop, and implement an eligibility system, funds that would largely be channeled to Deloitte Consulting, according to the documents ºÚÁϳԹÏÍø News obtained.

About 45% of Pathways applications were still waiting to be processed, based on the state’s most recent monthly reports, said Leah Chan, director of health justice at the Georgia Budget and Policy Institute, a nonprofit research organization that supports full Medicaid expansion.

The eligibility system, she said, “the thing that we’ve spent the most money on, is actually one of the things standing in the way of the program seeing higher enrollment.”

The state Department of Community Health reported $26.6 million in Pathways spending through Dec. 31, of which more than 80% was paid for using federal funds. Deloitte was paid $2.4 million to prepare and submit the application to the federal government. Just $2 million was paid to insurers to cover medical care. In the fourth quarter, administrative costs alone rose by more than $6 million.

The total costs do not include legal fees for defending the Pathways program. The state attorney general’s office said that as of Feb. 7 those costs surpass $230,000.

In striking contrast, North Carolina has enrolled 380,000 beneficiaries in its Medicaid expansion as of March 1, according to that state’s Department of Health and Human Services. North Carolina became the 40th state to expand Medicaid under the ACA on Dec. 1, a move that has prompted fresh debate over expansion in a handful of other Southern holdout states.

Georgia, which has one of the highest uninsured rates among states, is currently the only state that requires people in its Medicaid expansion population to prove they are working or doing other qualifying activities to gain health coverage.

A spokesperson for Kemp, Carter Chapman, told ºÚÁϳԹÏÍø News that the governor “remains committed to implementing Georgia Pathways, an innovative program expanding coverage to tens of thousands of otherwise ineligible, low-income Georgians, despite the Biden administration’s continued efforts to disrupt its rollout.”

In February, citing the delays in implementation, Georgia filed a suit against the federal government to ensure the work requirement program could continue running through 2028 instead of 2025, when it was originally scheduled to end. CMS refused to comment because of pending litigation.

Georgia’s cost estimates are in line with what other states anticipated for administrative spending for Medicaid work requirement programs, including Kentucky’s projected spending of $272 million, according to a from the Government Accountability Office, a federal agency that recommended CMS consider administrative costs in such applications.

In Arkansas, people struggled to prove they qualified because setting up online accounts was difficult and confusing and many had limited access to the internet, said Robin Rudowitz, a vice president at KFF and director of the Program on Medicaid and the Uninsured. Arkansas’ work requirement program ended in 2019 after a judge blocked it, but not before 18,000 people lost coverage. Unlike Arkansas, which placed a work requirement on a population already receiving Medicaid expansion benefits, Georgia is offering coverage to new people who qualify. But the program’s expense may not be worth sustaining it, Sommers said.

Typically, in Medicaid, administrative costs range from 12% to 16% of overall program spending, said Laura Colbert, executive director of the advocacy group Georgians for a Healthy Future, which supports full Medicaid expansion.

“It’s reasonable to expect that at least 80% of costs of a public or private health insurance plan to go toward health care and services,” she said.

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Beal, senior risk communication adviser for the Environmental Protection Agency, has fielded questions about why the agency took so long to alert people who live near facilities that emit the chemical about unusually high amounts of the carcinogenic gas in their neighborhoods. Residents asked why the EPA couldn’t close those facilities, and they wanted to know how many people had developed cancer from their exposure.

“If you’re upset by the information you’re hearing tonight, if you’re angry, if it scares you to think about risk to your family, those are totally reasonable responses,” Beal told an audience in Laredo, Texas, in September 2022. “We think the risk levels near this facility are too high.”

There are about 90 sterilizing plants in the U.S. that use ethylene oxide, and for decades companies used the chemical to sterilize medical products without drawing much attention. Many medical device-makers send their products to the plants to be sterilized before they are shipped, typically to medical distribution companies.

But people living around these facilities have been jolted in recent years by a succession of from the federal government and media reports, an awareness that has also spawned protests and lawsuits alleging medical harm.

The EPA is expected to meet a March 1 court-ordered deadline to finalize tighter safety rules around how the toxic gas is used. The come in the wake of a that found that long-term exposure to ethylene oxide is more dangerous than was previously thought.

But the anticipated final rules — the agency’s first regulatory update on ethylene oxide emissions in more than a decade — are expected to face pushback. Medical device-makers worry stricter regulation will increase costs and may put patients at higher risk of infection from devices, ranging from surgical kits to catheters, due to deficient sterilization. The new rules are also not likely to satisfy the concerns of environmentalists or members of the public, who already have expressed frustration about how long it took the federal government to sound the alarm.

“We have been breathing this air for 40 years,” said Connie Waller, 70, who lives with her husband, David, 75, within two miles of such a sterilizing plant in Covington, Georgia, east of Atlanta. “The only way to stop these chemicals is to hit them in their pocketbook, to get their attention.”

The EPA says data shows that long-term can increase the risk of breast cancer and cancers of the white blood cells, such as non-Hodgkin lymphoma, myeloma, and lymphocytic leukemia. It the eyes, nose, throat, and lungs, and has been linked to damage to the brain and nervous and reproductive systems. Children are potentially more vulnerable, as are workers routinely exposed to the chemical, EPA officials say. The agency calculates the risk based on how much of the gas is in the air or near the sterilizing facility, the distance a person is from the plant, and how long the person is exposed.

Waller said she was diagnosed with breast cancer in 2004 and that her husband was found to have non-Hodgkin lymphoma eight years later.

A of communities living near a sterilization facility in Laredo found the rates of acute lymphocytic leukemia and breast cancer were greater than expected based on statewide rates, a difference that was statistically significant.

Beal, the EPA risk adviser, who regularly meets with community members, acknowledges the public’s concerns. “We don’t think it’s OK for you to be at increased risk from something that you have no control over, that’s near your house,” she said. “We are working as fast as we can to get that risk reduced with the powers that we have available to us.”

In the meantime, local and state governments and industry groups have scrambled to defuse public outcry.

Hundreds of personal injury cases have been filed in communities near sterilizing plants. In 2020, New Mexico’s then-attorney general filed a lawsuit against a plant in Santa Teresa, and that case is ongoing. In a case that settled last year in suburban Atlanta, a company agreed to pay $35 million to 79 people who alleged ethylene oxide used at the plant caused cancer and other injuries.

In Cook County, Illinois, a to a woman who alleged exposure to ethylene oxide gas led to her breast cancer diagnosis. But, in another Illinois case, a jury ruled that the sterilizing company was not liable for a .

Greg Crist, chief advocacy officer for the Advanced Medical Technology Association, a medical device trade group that says ethylene oxide is an effective and reliable sterilant, attributes the spate of lawsuits to the litigious nature of trial attorneys.

“If they smell blood in the water, they’ll go after it,” Crist said.

Most states have at least one sterilizing plant. According to the EPA, a handful, like California and North Carolina, have gone further than the agency and the federal Clean Air Act to regulate ethylene oxide emissions. After a media and political firestorm raised awareness about the metro Atlanta facilities, Georgia started requiring sterilizing plants that use the gas to report all leaks.

The the EPA is set to finalize would set lower emissions limits for chemical plants and commercial sterilizers and increase some safety requirements for workers within these facilities. The agency is expected to set an 18-month deadline for commercial sterilizers to come into compliance with the emissions rules.

That would help at facilities that “cut corners,” with lax pollution controls that allow emissions of the gas into nearby communities, said Richard Peltier, a professor of environmental health sciences at the University of Massachusetts-Amherst. Stronger regulation also prevents the plants from remaining under the radar. “One of the dirty secrets is that a lot of it is self-regulated or self-policed,” Peltier added.

But the proposed rules did not include protections for workers at off-site warehouses that store sterilized products, which can continue to emit ethylene oxide. They also did not require air testing around the facilities, prompting debate about how effective they would be in protecting the health of nearby residents.

Industry officials also don’t expect an alternative that is as broadly effective as ethylene oxide to be developed anytime soon, though they support researching other methods. Current alternatives include steam, radiation, and hydrogen peroxide vapor.

Increasing the use of alternatives can reduce industry dependence on “the crutch of ethylene oxide,” said Darya Minovi, senior analyst with the Union of Concerned Scientists, an advocacy group.

But meeting the new guidelines will be disruptive to the industry, Crist said. He estimates companies will spend upward of $500 million to comply with the new EPA rules and could struggle to meet the agency’s 18-month timetable. Sterilization companies will also have difficulty adjusting to new rules on how workers handle the gas without a dip in efficiency, Crist said.

The Food and Drug Administration, which regulates drugs and medical devices, is also watching the regulatory moves closely and worries the updated emissions rule could “present some unique challenges” if implemented as proposed, said Audra Harrison, an FDA spokesperson. “The FDA is concerned about the rule’s effects on the availability of medical devices,” she added.

Other groups, like the American Chemistry Council and the Texas Commission on Environmental Quality, the state’s environmental agency, assert that ethylene oxide use isn’t as dangerous as the EPA says. The EPA’s toxicity assessment has “severe flaws” and is “overly conservative,” the council said in an emailed statement. Texas, which has several sterilizing plants, has said ethylene oxide isn’t as high a cancer risk as the agency claims, an assessment that the EPA has rejected.

Tracey Woodruff, a researcher at the University of California-San Francisco who previously worked at the EPA, said it can be hard for the agency to keep up with regulating chemicals like ethylene oxide because of constrained resources, the technical complications of rulemaking, and industry lobbying.

But she’s hopeful the EPA can strike a balance between its desire to reduce exposure and the desire of the FDA not to disrupt medical device sterilization. And scrutiny can also help the device sterilization industry think outside the box.

“We continue to discover these chemicals that we’ve already been exposed to were toxic, and we have high exposures,” she said. “Regulation is an innovation forcer.”

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DALTON, Ga. ― A group from teens to seniors gathered in an office inside a grocery store, where Spanish-language food signs cater to the large Hispanic population in this northwestern Georgia city dominated by the carpet industry.

The conversation, moderated by community leader America Gruner, focused on mental health and suicide. The Tuesday night meetings draw about a dozen people, who sit on makeshift furniture and tell their often emotional stories. Gruner formed the support group in 2019 after three Latinos ages 17 to 22 died by suicide here over a two-week period.

“We couldn’t wait for research,” said Gruner, founder and president of the Latinos. “We wanted to do something about it.”

for Hispanic people in the United States has increased significantly over the past decade. The trend has community leaders worried: Even elementary school-aged Hispanic children have tried to harm themselves or expressed suicidal thoughts.

Community leaders and mental health researchers say the pandemic hit young Hispanics especially hard. Immigrant children are often expected to take more responsibility when their parents don’t speak English ― even if they themselves aren’t fluent. Many live in poorer households with some or all family members without legal residency. And cultural barriers and language may prevent many from seeking care in a mental health system that already has spotty access to services.

“Being able to talk about painful things in a language that you are comfortable with is a really specific type of healing,” said Alejandra Vargas, a bilingual Spanish program coordinator for the Suicide Prevention Center at Didi Hirsch Mental Health Services in Los Angeles.

“When we answer the calls in Spanish, you can hear that relief on the other end,” she said. “That, ‘Yes, they’re going to understand me.’”

The Centers for Disease Control and Prevention’s provisional data for 2022 shows a record high of nearly 50,000 suicide deaths for all racial and ethnic groups.

Grim statistics from KFF show that the rise in the suicide death rate has been more pronounced among communities of color: From 2011 to 2021, the suicide rate among Hispanics jumped from 5.7 per 100,000 people to 7.9 per 100,000, according to the data.

For Hispanic children 12 and younger, the rate increased 92.3% from 2010 to 2019, according to a study .

It’s a problem seen coast to coast, in both urban and rural communities.

The , a Los Angeles-based social services organization with a primarily Latino clientele, has reported a significant increase in emergency room visits and hospitalizations among young people for risky behavior and suicidal thoughts, said Diane Elias, vice president of behavioral health at the institute. She said children as young as 8 have required hospitalization for attempting to harm themselves.

In Georgia, home to a growing Hispanic population, the suicide rate increased 55% from 2018 to 2022, according to the state Department of Public Health. , a social services organization in metro Atlanta, said it has seen alarming numbers of Hispanic children who report having suicidal thoughts.

“Our kids are interpreters, they pay bills, go to medical appointments,” putting additional stress and anxiety on them, said Belisa Urbina, CEO of Ser Familia.

Suicide is rarely caused by a single issue; many factors can increase one’s risk. These can include a previous suicide attempt, a breakup or loss, a history of depression or other mental illness, financial or job problems, lack of access to health care, and social isolation, said Robin Lee, who leads the Applied Sciences Branch in the CDC’s Division of Injury Prevention.

Mental health experts said there are many social and economic pressures on minority groups. For Hispanics, cultural and systemic obstacles may also be at play.

According to the Latino Community Fund Georgia, stress linked to immigration status has led to an increase in mental health problems.

“Not feeling like you belong, and not knowing what your life holds ahead of you” can create feelings of uncertainty and anxiety, said Vargas, the mental health worker in L.A.

A study of 547 Latino adolescents ages 11 to 16 found the detention or deportation of a family member was associated with significantly higher odds of suicidal thoughts.

“There are waves of immigrants coming as minors, displaced, and sometimes not with immediate caregivers,” Elias said. “This can put hefty burden on children. They are expected, as minors, to balance self-financing and earning money to support family or help them immigrate to the U.S.”

Lack of access to mental health care is a problem for all segments of society, particularly since the beginning of the pandemic. But minorities face added economic and societal obstacles, said , a past president of the American Psychiatric Association and a suicide researcher.

Nirmita Panchal, a senior policy analyst for KFF, said children of color “may not receive culturally sensitive mental health screenings, and their mental health symptoms may be mistakenly characterized as disruptive behaviors.”

Language also remains a significant barrier.

“We have a tremendous need for bilingual mental health providers in Georgia,” said Pierluigi Mancini, president and CEO of the , a Georgia-based consulting organization.

Gruner, who set up the Latino support group in Dalton, said she is aware of only three bilingual providers in that area. The city is in Whitfield County, where more than a third of the 100,000 residents are Hispanic.

And bias can add another obstacle.

A recent , using a secret-shopper process, found evidence of potential discrimination during the scheduling process for a mental health appointment in California. About 1 in 5 Spanish-language calls ended with the scheduler hanging up or informing the caller that no one was available to assist in Spanish.

Mental illness can also be culturally taboo among many Black and Hispanic people. (Hispanics can be of any race or combination of races.)

“There is a belief that men shouldn’t seek help — they should solve their problems themselves,” said Francisco, 55, a member of the Dalton support group who himself attempted suicide as a teen. ºÚÁϳԹÏÍø News attended the session where he and others spoke, using only their first names for privacy reasons.

To address the mental health crisis, the federal government, in conjunction with states, introduced the 988 Suicide & Crisis Lifeline in 2022 for people to connect with a crisis counselor and other resources. In July, it added a 988 text and , but a spokesperson for the Substance Abuse and Mental Health Services Administration acknowledged more work needs to be done to reach communities at risk.

Across the country, mental health professionals, researchers, and Hispanic leaders point to several ways to reduce suicide.

It’s crucial that more funding goes toward mental health generally, including prevention programs that recognize cultural, legal, and language needs, said Jagdish Khubchandani, a professor and researcher at New Mexico State University.

For now, some local leaders are filling gaps by doing community work, such as forming support groups for the Hispanic population.

Miguel Serricchio of Santa Clarita, California, facilitates bilingual support groups for people whose lives have been rocked by suicide. His son, Alex, battling anxiety, took his own life in 2016 after a breakup with his girlfriend.

“I wanted to get the word out,” Serricchio said.

Gruner, 64, who was born in Mexico City, hears from people in her weekly support group who have thought about suicide, have attempted it, or worry about their children doing the same.

During the meeting attended by ºÚÁϳԹÏÍø News, a woman named Angela said her three daughters had anxiety and depression. “One of them told me she is suffering because we are immigrants,” she said.

Another attendee, Katherine, 16, cited, among other factors, unstable living conditions. For a time, she said, “we were struggling to find a home. We would be roommates with other families,” she said.

Her friend Alejandro, also 16, said he’s struggled with suicidal thoughts after the death of his grandmother and arguments between his parents.

Vargas said that young people are looking for honesty and no judgment. They don’t want adults to dismiss their problems, telling them they’ll grow out of them.

“While the subject of suicide can be really scary or unsettling, when someone approaches you and tells you they are thinking about suicide, it can be a really wonderful, beautiful moment of hope,” Vargas said. “That opening is an opportunity to connect and support one another.”

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For her and millions of other Americans, that’s the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn’t produce enough of the hormones needed for the body to regulate metabolism.

There’s no cure for Hashimoto’s or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold.

Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective.

For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.

“I look and act like a pretty energetic person,” said VanOrden, 38, explaining that her symptoms are not visible. “But there is a hole in my gas tank,” she said. And “stress makes the hole bigger.”

Autoimmune diseases occur when the immune system mistakenly attacks and damages healthy cells and tissues. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There are more than , affecting up to an estimated , disproportionately women. Overall, the cost of treating autoimmune diseases is estimated at more than in the U.S.

Despite their frequency, finding help for many autoimmune diseases can prove frustrating and expensive. Getting diagnosed can be a major hurdle because the range of symptoms looks a lot like those of other medical conditions, and there are often no definitive identifying tests, said Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta. In addition, some patients feel they have to fight to be believed, even by a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.

“They’re often upset. Patients feel dismissed,” Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.

Insufficient medical education and lack of investment in new research are two factors that hinder overall understanding of hypothyroidism, according to Antonio Bianco, a University of Chicago endocrinologist and leading expert on the condition.

Some patients become angry when their symptoms don’t respond to standard treatments, either levothyroxine or that drug in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We will have to remain open to the possibility that we’re missing something here,” he said.

Jennifer Ryan, 42, said she has spent “thousands of dollars out-of-pocket” looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident — diagnosed with Hashimoto’s after years of fatigue and weight gain — because her levels appeared normal. She recently switched doctors and hopes for the best.

“You don’t walk around hurting all day long and have nothing wrong,” Ryan said.

And health insurers typically deny coverage of novel hypothyroidism treatments, said Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. “Insurance companies want you to use the generics even though many patients don’t do well with these treatments,” she said.

Meanwhile, the extent of Americans’ thyroid problems can be seen in drug sales. Levothyroxine is among the medications in the U.S. every year. Yet of the drug for those with mild hypothyroidism.

, paid for by AbbVie — maker of Synthroid, a brand-name version of levothyroxine — said a medical and pharmacy claims database showed that the prevalence of hypothyroidism, including milder forms, rose from 9.5% of Americans in 2012 to 11.7% in 2019.

The number of people diagnosed will rise as the population ages, said McAninch. Endocrine disruptors — natural or synthetic chemicals that can affect hormones — could account for some of that increase, she said.

In their search for answers, patients sometimes connect on social media, where they ask questions and describe their thyroid hormone levels, drug regimens, and symptoms. Some online platforms offer information that’s dubious at best, but overall, social media outlets have increased patients’ understanding of hard-to-resolve symptoms, Bianco said.

They also offer one another encouragement.

VanOrden, who has been active on Reddit, has this advice for other patients: “Don’t give up. Continue to advocate for yourself. Somewhere out there is a doctor who will listen to you.” She has started an alternative treatment — desiccated thyroid medication, an option not approved by the FDA — plus a low dose of the addiction drug naltrexone, though the data is limited. She’s feeling better now.

Research of autoimmune thyroid disease gets little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment hasn’t fully recognized hard-to-treat hypothyroid patients, but increased acknowledgment of them and their symptoms would help fund research, Bianco said.

“I would like a very clear, solid acknowledgment that these patients exist,” he said. “These people are real.”

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