DENNIS A. HUNT FUND FOR HEALTH JOURNALISM Grantees
David Barer and Josh Hinkle, KXAN News
In Texas, those charged with crimes and found mentally incompetent are entitled to restoration treatment at a state hospital before returning to jail and standing trial. Mental Competency Consequences, an investigation by 2021 National Fellows David Barer and Josh Hinkle, shows the system waitlists many hundreds each year while awaiting beds. Some die before receiving treatment. It’s a growing issue — Texas has experienced a 38 percent spike in the number of people who are found incompetent to stand trial in the last 20 years, according to state data. With financial assistance from the Dennis A. Hunt Fund, Hinkle and Barer investigated how mentally ill Texans fall through the cracks of the criminal justice system, exposing crucial data the state doesn’t track, and what the agencies could do to address the issue. State agencies in Texas responsible for maintaining waitlists for individuals who are entitled to restoration treatment don’t keep track of whether those individuals die in-custody. Hinkle and Barer turned to county-level data to find out for themselves. Their review of records from Texas’ five most populous counties found that since 2015 almost a dozen people languished in jail while awaiting treatment, ultimately dying before they would ever receive it. Among them was Naquan Carter, a 23-year-old who grew up bouncing from foster families to group homes. Medical forms from a 2017 arrest suggest he was suicidal and depressed. Naquan was diagnosed with bipolar and schizoaffective disorders stemming from mental and intellectual disabilities. At 6’3” and more than 300 pounds, his large stature belied his nature. The county sheriff described him as a “gentle giant.” Naquan was awaiting transfer to a state-supported living center in 2018 when guards found him dead in his jail cell. Surveillance footage shows Naquan fell from his bed, where he remained for 2 hours and 39 minutes. Corrections officers checked his cell or walked by almost a dozen times before noticing.
Barer and Hinkle have continued their reporting on the issue following the broadcast of their project. On May 18, 2022, they reported that the number of people jailed while awaiting evaluation or treatment in a state mental hospital had reached 2,309 in March, the most ever. Several legislators told Barer and Hinkle that the problem could be solved. “We know what the solutions are: workforce, expanded Medicaid, and a diversion out of jail circumstance and into a doctor’s office,” State Sen. Sarah Eckhardt, D-Auston told them. “Currently this crisis management is ineffective. It’s inefficient. It’s unfair, and it’s exceedingly intrusive on the individual who is suffering.” The state began collecting data on the race of inmates awaiting psychiatric evaluation or treatment only after Barer's and Hinkle's project pointed out the lapse. Data released by the state in May confirm Barer's and Hinkle's calculations that Blacks wait longer to be transferred than Whites or Latinos, a disparity the state initially called "an anomaly," but later said might be explained by prolonged medical holds for conditions that can't be treated in a state hospital, or a person's specialized programming needs.
Early Impacts: Prison policy researchers and members of the state agency responsible for the restoration treatment waitlists suggested that Hinkle and Barer’s findings should lead to policy changes, including tracking of data related to demographics, race, ethnicity, homelessness and in-custody deaths. Just weeks after publication, the state began tracking data related to race and ethnicity of people in-custody who were waitlisted for restoration treatment — a key piece of data that Barer and Hinkle’s investigation found was not being tracked. In addition, the Joint Committee on Access and Forensic Services is looking into the causes of a potential solutions to the lengthy waitlist. “Our goal for this committee right now is to keep analyzing the data to see what it tells us in terms of hopefully we will be able to have some data driven recommendations for policy actions or legislative action,” Stephen Glazier, a member of the committee, told Barer and Hinkle in April.
The project has received 14 awards, including two national Edward R. Murrow Awards; two awards from the Texas Association of Broadcasters in the investigative and multimedia/digital storytelling categories (and two awards in those same categories from the Headliners Foundation of Texas' Charles E. Green Awards); four regional Emmys; and the First Amendment Award from Society of Professional Journalists (SPJ) Fort Worth Professional Chapter.
Jorge Carrasco and Juan Cooper, Noticias Telemundo
Noticias Telemundo, a national news show that reaches almost 1.2 million Spanish-speaking households nightly, began broadcasting Carrasco’s and Cooper’s Fellowship project, a five-part video and text series, on June 14. Headlined Salud de Alquiler (“Health for Hire”), the program investigated why many Latinos -- more than 15,000 between 2015 and 2019—enroll in clinical trials of drugs -- many over and over again -- and found that the root cause was poverty. "The clinics want the participants and the participants want the money,” Dr. Olveen Carrasquillo, chief of general medicine at the University of Miami, told the reporters. “So that creates a system that is ripe for abuse."
In Part One, “Risk Health for Money,” they told the story of the late María Elisa Rangel, a 38-year-old undocumented immigrant who in 2015 signed up for a Phase 1 clinical trial of a potential epilepsy drug at the Celerion research center in east Phoenix. (Phase 1 trials assess the toxicity of an investigative drug.) She was paid $8,300 for taking the drug, spending a month hospitalized under observation and having more than 30 blood draws. Experts told Carrasco and Cooper that Rangel wasn’t adequately informed of the risk of DRESS Syndrome, a serious drug reaction. Nearly three months after she began taking the drug, Rangel died of “an adverse reaction to an experimental drug,” according to an autopsy. Rangel’s husband sued and in March received a confidential settlement.
In Part Two, “Recruiting the Desperate,” Carrasco and Cooper reported an apparent anomaly: Latinos are underrepresented in clinical trials of drugs on patients who are sick (Phase 2 and 3 trials), but are apparently overrepresented in Phase 1 trials, which require participants to be healthy. The lure for the Phase 1 trials: payments that average up to $250 a day (more if hospitalization is required) and no requirement for legal immigration status. Nahara Candelaria, a Cuban immigrant who has taken part in numerous studies, told the reporters she does it to pay for legalizing her and her daughter’s immigration statuses. “More than 100 people call me every day,” Marylean Camacho, a recruiter at the CenExel RCA clinic in Hollywood, Florida, said. The long-term effects of serial participation in studies is unknown, but the government allows it. Almost 30,000 clinical trials are currently underway in the United States.
Part Three, “The Price of Silence,” described the pressure participants feel to stay in trials, even if they’re experiencing side effects, so that they receive full compensation. Some also withhold side effects for fear of being terminated from a study, which can jeopardize public health, since the Food and Drug Administration assesses side effects when deciding whether to approve a new drug. One trial participant, Roberto Lamelo, a Cuban immigrant, told the reporters that he failed to report 18 straight days of diarrhea because he didn’t want to jeopardize his $6,000 payment. The reporters informed Senator Sherrod Brown, D-Ohio, of their findings, and he told them: "By participating in a trial, no one should be afraid that they will take advantage of them, harm them, or worse.” Brown has advocated for stepped-up efforts to include diverse participants in drug trials.
Part Four, “A Dangerous Lack of Regulation,” profiled Blue Fronteraz, 36, a Mexican immigrant who makes her living as a serial trial participant. To maximize her income, she once took part in three trials at once, but got scared when her hair fell out, and she didn’t know which investigational drug had caused it (nor did she report the side effect to the clinic). Medical ethicists want the government to build a national database in which clinics would have to track participants’ histories and what drugs they ingested. Some commercial registries have been developed, but participation by clinics is voluntary; most of the 25 clinics that responded to a Telemundo survey said that they use them only if the study’s sponsor requires it.
Part Five, “Clinical Trials that Give Life,” explored the reasons that drug companies actively recruit Latinos for clinical trials: to meet the FDA’s diversity goals, designed to ensure that drugs benefit all takers, since some drugs behave differently in people of different racial and ethnic backgrounds. Because Phase 2 and 3 trials are limited to people with the disease the drug is meant to address, financial incentives aren’t as important to participants. Rather, people sign up with hopes that the investigative drug will cure them. To assure sufficient representation of Latinos, many drug trials are held in Puerto Rico. In addition, clinic owners have formed Latinos in Clinical Research with a goal of diversifying the clinical trial workforce.
Laura Garcia, San Antonio Express-News
The first article in Garcia's project, Access Denied. ran April 20 in the San Antonio Express-News. Headlined "A Broken System Got Worse: How COVID Ravaged San Antonio's Southside," the project analyzed the historical and systemic contributions to the disproportionate impact of COVID-19 on San Antonio's Latino population. By analyzing 50 years of census data, redlining data from the University of Richmond and information from the city's COVID-19, the paper showed that COVID-19 infections have been more prevalent and more deadly among residents of the southern parts of the city, which is 81 percent Hispanic. The data showed that the southern neighborhoods have COVID-19 mortality rates more than double that of Bexar County overall, the state of Texas and the nation. Laura's article also revealed that the incidence of chronic conditions is also higher in Bexar County's poorer, largely Latino neighborhoods. Experts told her that the disparities started with decades-old racially-biased government policies that pushed Hispanic residents into less desirable parts of the city with weaker infrastructure and less public investment, which stunted their prospects for getting ahead. Generations later, residents of the southern third of the city still have less access to medical care, healthy food and opportunities for advancement. “COVID-19 shined a harsh light on and further exacerbated systemic inequities, especially for Latinos,” Amelie Ramirez, chair of the department of population health sciences and director of the Institute for Health Promotion Research at UT Health San Antonio, told Laura.
In her next piece, Garcia analyzed 50 years of census data, redlining data from the University of Richmond and information from the city's COVID-19 Dashboard to show how the pandemic disproportionately affected the mostly Latino residents of the city's South Side, from vaccination rates to confirmed infection rates to death rates. The 78224 ZIP code on the South Side, had a death rate of 677 per 100,000 people from the start of the pandemic through March 2022 --16 times higher than in the more affluent (and more non-Latino) 78256 ZIP code. Experts told her that the reasons were "cumulative and complex, starting with racially-biased government policies decades ago that intentionally pushed Hispanic, primarily Mexican American, residents into less desirable parts of the city with weaker infrastructure and less public investment — stunting the economic prospects of thousands of San Antonio families for generations." For her next piece, she mapped the nearly 50 emergency care facilities in San Antonio and found that the majority were on the more affluent North Side, with eight emergency rooms for every one on the South Side. The limited access to health care is one reason that South Side residents are more likely to lose limbs to diabetes and have shorter life spans. “This is the most segregated city for health in the world," Linda Hook, former director of the Metropolitan Health District’s public health nursing department, told her.
In another project follow-up, Garcia reported June 22 on plans by Bexar County Hospital District’s board of managers to build two new hospitals in medically underserved areas — one on the Southwest Side, a neighborhood on which she focused in her project, and one on the Northeast Side. Her investigation had found that options for hospitals, medical specialists and surgical centers are limited in the southern part of the city, where 81 percent of all residents are Hispanic, and 21 percent of patients are uninsured.
Garcia received a supplemental community engagement grant from the Center to experiment with new ways of engaging the public with her reporting. On May 28, the Express-News hosted a health fair at the Wesley Health and Wellness Center on San Antonio’s South Side, the neighborhood on which Garcia focused in her project, in partnership with Methodist Healthcare Ministries of South Texas, HealthTexas Primary Care Doctors and the Center for Health Journalism. More than 150 people visited 21 booths, got COVID-19 vaccinations and picked up free bags of produce. The paper’s editor interviewed Garcia and photographer Josie Norris about their findings, and Garcia then moderated a panel discussion featuring six experts on health disparities who had been sources for her project: Dr. Lyssa Ochoa, CEO and vascular surgeon at San Antonio Vascular and Endovascular Clinic; Dr. Carolina González Schlenker, UT Health San Antonio’s Department of Family and Community Medicine promotores program; Dr. Adriana Rocha Garcia, San Antonio City Councilwoman of District 4; George B. Hernández, Jr., president and CEO of University Health (Bexar County Hospital District); and Dr. Jason Miller, Psychiatrist at Texas Vista Medical Center (formerly Southwest General Hospital).
Early Impacts: Bexar County Manager David Smith cited Garcia's reporting in announcing his plans to hire a county public health director and other core staff to revamp health care in some areas of the community. He held up two maps from Garcia's project that highlighted health care inequities and disparities in largely Latino neighborhoodsas he told the county commissions: “To me, these two maps are a sort of visual mission statement for this new department that I’m forming. It is to try and make these health care outcomes more evenly distributed throughout our community.” Garcia and a colleague, Scott Huddleston, reported June 10 on the Bexar County Commission’s plans to address some of the health disparities she had reported in her Fellowship project, Access Denied. Using funds from the American Rescue Plan Act, the commission approved $30 million for a University Health medical office building on the South Side; another $20 million to be split between a University Health satellite medical clinic and a new public health school that will be run by UT Health San Antonio and the University of Texas at San Antonio; $3.5 million for upgrades at the Texas Biomedical Research Institute; and $1 million will pay for five “VillageMD” clinics inside Walgreens stores.
Allison Herreera, KOSU
Herrera of KOSU is reporting on tribal-run mental health programs in Oklahoma in the wake of a Supreme Court decision that gave Okalahoma tribes the sole authority to administer justice to members of tribes in the state.
Sabrina Moreno, Richmond Times Dispatch
Moreno investigated missteps in the handling of the COVID-19 pandemic by public health officials in Virginia. Her five-month investigation found state leaders allowed the health department to wither and shrink for more than 20 years. A series of budget cuts and underfunding led to “a severely undermanned and underfunded public health system, incapable of fulfilling its core promise to protect the health of all Virginians,” Moreno wrote in the first part of her series. She found that the state’s health department’s budget for public health totaled about $85 per person — less than it was spending in 2000, after adjusting for inflation. The disinvestment disproportionately impacted Latino communities. In at least two separate assessments, community members identified language barriers as a cause of poor health. The department faced a lawsuit in 2021 when it used Google Translate to relay COVID-19 vaccine information to Spanish speakers. That software offered shoddy translation, falsely telling Spanish readers on a state website that "the vaccine is not necessary" instead of "not required,” Moreno wrote. To inform her reporting on this pandemic, Moreno looked back to the department’s response to H1N1 in 2009, finding that language barriers and distrust of public health officials among Latino communities hampered their response. Virginia faced those same problems during the COVID-19 pandemic, something one public health historian Moreno interviewed blamed on public health officials being “engineers to these problems” but relying upon politicians to deliver funding and resources to address them. Oftentimes, politicians don’t want those types of problems being measured, and don’t provide adequate resources to track the data needed to solve the problem, Moreno reported.
In Part Two, Virginia’s COVID Response: for some Latinos, help came too late, Moreno reported that a disproportionate number of Latinos contracted COVID between March and September 2020 because they were in essential jobs and working despite the risk of exposure. The Virginia Department of Health reported that Latinos ages 35 to 44 were then dying at 11 times the rate of than Whites in the same age group. (All told, 1,022 of the 19,000 Virginians who have died from COVID were Latino.) The Virginia Department of Health received $1.4 billion in federal COVID grants, but it wasn’t enough to meet the needs of uninsured essential workers living in multigenerational households without access to quality health care or paid sick leave, so many went to work sick, Moreno reported. To put a human face on the policy issues, Moreno profiled Maria Fuentes, whose husband, Yuki Mendez, a construction worker, died of COVID on July 28, 2020, a day after the state mandated workplace protections that might have prevented him from contracting the virus. Fuentes had lost her housekeeping job early in the pandemic, but Mendez kept working to pay their bills. It wasn’t clear who caught COVID first, but Fuentes survived, and Mendez didn’t. When Fuentes tried to get assistance with rent, the information was only available in English, which she can’t read.
Yereth Rosen, Arctic Today
In rural Native Villages across the Alaskan arctic, it’s not uncommon to see children hauling buckets of human waste to dump it in a lagoon. In these indigneous communities, there’s no infrastructure for fresh water or waste. Such conditions lead to a host of challenges for residents, the most dire of which involves a litany of well-documented chronic health conditions. Rosen reported on the impacts the lack of water and sanitation infrastructure has on indigenous communities in Alaska, and the hope they have for the future. That hope, Rosen writes, could come from the federal Infrastructure Investment and Jobs Act, which allocates more than $3.7 billion for construction projects in villages for sanitation and wastewater management. The aid is needed. Respiratory syncytial virus, or RSV, plagues infants and children in rural parts of Alaska, a result of the poor water quality. “We expect that one out of every three of our infants every year in one of those communities will be hospitalized simply because they don’t have running water,” said Valerie Davidson, president of the Alaska Native Tribal Health Consortium. Illustrating the problem, Rosen headed to the village of Teller, an Iñupiat community home to about 250 people. Residents there leave bags of human waste in plastic bags outside their homes to be picked up by sanitation workers at a cost of $35 per week, unless they choose to haul it to the dumpsite by foot. They have no running water, so they must travel to a community storage tank to fill buckets at a cost between 50 and 63 cents per gallon. It’s so cost-restrictive that residents use water sparingly and often reuse water to the point of contamination. A survey of 21 rural households found an average use of 2.4 gallons per household per day, well below the 156 gallon daily average water use in the United States. Rural residents have been clamoring for improvements for years, which seem within grasp now with an infusion of federal funding. But progress over the decades to address infrastructural issues has been slow-going. “I was hoping we’d have water and sewer by now. It’s always been out of reach,” one tribal government leader said. She pointed to the mayor. “I can remember her grandma talking about it,” she said. In her second piece, “In-home water and sanitation systems offer alternatives to serve remote Alaska villages,” she reported on efforts by the Alaska Native Tribal Health Consortium to equip some individual homes in parts of rural Alaska with water and sewage microsystems that produce safe drinking water and reduce the possibility of residents developing infectious diseases because of contact with human waste. Her third story described the innovative ventilation systems installed in the homes of a four-house living laboratory at the Cold Climate Housing Research Center on the edge of the University of Alaska Fairbanks. They provide a way to balance the need for energy conservation, a perennial issue in cold climates of high latitudes, with the need for fresh indoor air, which is essential to people’s health. Native residents are advising designers of attributes needed to accommodate their lifestyles, which include multigenerational living arrangements and long-term storage of hunted and fished prey. (This story was co-published in Nunatsiaq News, the newspaper of record for the Nunavut and the Nunavik territory of Quebec.) Her fourth story reviewed the devastating impact of the 1918 Spanish Flu pandemic on Alaskans and what lessons learned from it are applicable to the COVID-19 pandemic and whatever other pandemics lie ahead. Natives accounted for 82 of the documented deaths from the 1918 pandemic, even though they made up 48 percent of the then-territory’s population at the time. More recent waves of avian flu also disproportionately affected Natives. And Natives accounted for 28 percent of COVID-19 deaths through October 2021, though they comprise just 16 percent of the population now, according to state data. Because Alaska’s large waterfowl population makes avian flu a constant concern, epidemiologists are hoping that the infection control methods developed to control COVID can be quickly reinstated if other viruses threaten.
Stephen Simpson, Arkansas Democrat-Gazette
Stephen Simpson, a Capitol reporter for the Arkansas Democrat-Gazette, reported “The Great Delta Divide,” a four-story package on health disparities in the state’s rural Delta region, where economic disinvestment and out-migration of young people have left communities lacking needed services, including health care. In his first story, he reported on the barriers to health care in Arkansas’ Delta region, where many people live long distances from hospitals and specialists are few and far between. Residents are also more likely to have low incomes and chronic conditions, such as obesity, which have contributed to shorter lifespans. In his second story, he documented the population decline in most towns in the Delta over the past decade, while the Central and Northwest metropolitan areas of Arkansas were growing. His third story delved further into the reasons for the population decline, including the closure of the Blytheville Air Force Base in 1992, which led to an almost 50% decline in population, His fourth story reported on the high rates of depression in the Delta’s poorest counties, which are predominantly Black. “You see this trauma and depression just getting passed down from generation to generation, and I believe it’s affecting their health,” Dr. Valencia Andrew-Pirtle, a family medicine specialist in Blytheville told him. In a sidebar with that piece, a banker, George Makris Jr. expressed the view that declining infrastructure – health care, school systems and broadband – are holding back economic growth in Little Rock. For his final story, he interviewed community leaders about what the state government could do to help reverse the decline of the Delta. His project included a series of interactive graphs documenting lagging population growth in the Delta; health care shortages in the state; poverty in the Delta; food insecurity in the Delta; life expectancy in the Delta; and the high rate of COVID deaths in the Delta.