Three brain-health grants cancelled at Pitt and Emory as apparent test cases
A University of Pittsburgh study that spent 15 years following two majority-Black Pittsburgh neighborhoods through questions on food access, sleep, cardiovascular health and, finally, cognitive aging has been terminated by the National Institutes of Health. Researchers had completed two rounds of cognitive assessments on roughly 600 participants in the Hill District and Homewood before the termination arrived in August, leaving participants without the feedback they had been promised.
The Phresh study — formally the Pittsburgh Hill/Homewood Research on Eating, Shopping and Health — was launched during the Obama administration as a natural experiment on grocery-store access in the two neighborhoods. Addresses were randomly selected in the Hill District, which received a new grocery store, and in Homewood, which did not. The Hill District and Homewood sit a few miles from the University of Pittsburgh, one of the country’s major Alzheimer’s research centers.
As researchers returned to the same addresses year after year, the study evolved. “When we started collecting data around grocery stores and asking about fruits and vegetables, people started telling us other things that was happening,” said La’vette Wagner, the field coordinator for Phresh. The study expanded from food access to neighborhood noise and sleep, then to cardiovascular health, and finally to cognitive aging and dementia — gathering data on adverse childhood experiences, education, recent trauma and, in the last round, two cognitive assessments per participant.
Tamara Dubowitz, one of the study’s principal investigators and chair of epidemiology at the University of Pittsburgh, said the cancellation means the roughly 600 participants will not receive the feedback they had been promised. “The real loss is that we promised our participants information and feedback based on their two cognitive tests or assessments that they did,” Dubowitz said, speaking in her personal capacity. Researchers had planned to have a neuropsychologist and a geriatric psychiatrist interpret every participant’s results, but said the 90-day shutdown timeline — set more than five months earlier than the study’s planned end and a year earlier than researchers had hoped — does not allow time to complete those adjudications or to pay the specialists who would do the work.
The termination letter came in August, after researchers had finished their second and final round of cognitive examinations. NIH Director Jay Bhattacharya — a Trump appointee — described long-accepted self-report metrics that link trauma, deprivation and discrimination to health status as “not in alignment with NIH’s priorities related to ‘promoting research focused on scientifically valid measurable health outcomes.’” A separate letter said the work “no longer effectuates the program goals or agency priorities.” The administration has canceled, frozen or otherwise disrupted more than 5,700 medical research grants at NIH.
Roderick Blair, a 70-year-old retired emergency preparedness worker in Homewood, was among the participants. Blair initially refused to take the cognitive test, saying he was skeptical of researchers’ commitment to Black participants: “I know about the stubbornness of some researchers where Black people were just a throw-aside, [to] get two of them to say, ‘We studied all black people.’” He eventually agreed after a “delightful” young test proctor persuaded him and took the test twice. On the cancellation, Blair said: “If you don’t agree with me, you’re going to go to the woodshed … What has this administration done that has not been a retribution?”
The Phresh study is one of three brain-health grants terminated at the University of Pittsburgh and Emory University that legal experts believe are meant as test cases for the courts. All three examined how discrimination affects mental health. At Pitt, the second terminated study — called Cobra, or connectomics in brain aging — was led by Anne Cohen, a professor of psychiatry who was collecting brain scans and blood biomarkers from diverse participants. At Emory, Negar Fani, an associate professor of psychiatry, was studying how discrimination affects the white matter of the brain.
Fani said the NIH’s argument that self-reported measures are not scientifically valid would undermine much of psychiatric research. “Many times we ask people about events they’ve experienced and their perceptions of those events and the symptoms they have of those events,” she said. “PTSD researchers – we don’t go into history and try to find police reports.” The adverse childhood experiences framework — the survey instrument at the center of the dispute — was developed by a Kaiser Permanente physician and CDC researchers in the late 1990s and has been used in thousands of subsequent studies.
The cancellations are part of a broader pattern of terminations at Pittsburgh and elsewhere. The University of Pittsburgh has had 90 grants canceled, totaling about $33 million excluding reinstated awards, according to the Guardian. Emory has lost $92 million. Jared Stonesifer, the university’s head of communications, said the university is appealing the terminations and “believes these appeals are supported by a strong legal foundation and will present its position through the appropriate channels.”
Researchers at Pitt are now plaintiffs in a class-action lawsuit against NIH that argues the administration is censoring research whose conclusions it disfavors. “The plaintiff’s experiences and stories here really evidence that censoring research can have life or death consequences,” said Olga Akselrod, senior counsel with the ACLU’s racial justice program and a lead litigator. “It is dangerous for public health when research is censored based on political litmus tests, and particularly when it targets areas of research designed to address the needs of underserved populations that disproportionately experience negative health outcomes.”
Lawrence Gostin, a professor of global health law at Georgetown Law, described a recurring pattern. “The administration, particularly Secretary [Robert F] Kennedy [Jr], has followed a very clear pattern,” Gostin told the Guardian in August. “They do something that’s clearly unlawful, they get slapped down by a federal court, and then they try to cobble together a strategy that does basically the same thing but is legally defensible. I think that’s what’s going on here.”
The Alzheimer’s Association reports that nearly 7 million people in the United States live with Alzheimer’s disease and that Black Americans have nearly double the risk of developing Alzheimer’s dementia. According to the Guardian, clinical trials and research studies skew toward wealthy and white participants; studies that report race have more than 87% white participants, while the U.S. population is about 58% white. Of more than 12,000 brain-imaging studies on Alzheimer’s, only about 700 report race at all.
Andrea Rosso, an associate professor of epidemiology at Pitt and a Phresh co-investigator who also spoke in her personal capacity, said the absence of diverse participants in Alzheimer’s research means clinicians often miss the mixed pathology common in community samples. “The white people that show up in clinical samples have a much higher rate of this pure Alzheimer’s pathology, amyloid plaques, tau tangles, and very little other stuff going on in their brain,” she said. “They’re younger. They tend to be the people who are 60 years old and having Alzheimer’s disease, so they haven’t even aged enough to develop this other pathology. Whereas if you go out in the community and recruit people, again, whether they’re Black, whether they’re poor, whether whatever – they’re just not the people that are knocking down your door. Almost all of them have mixed pathology.”
Across town from the university, Wagner is packing up her office. A white box on the floor contains pamphlets — including one listing Black therapists — that data collectors handed to participants. Down the hall are the scales, fitness watches, sleep monitors, blood-pressure cuffs and sleep diaries. Wagner said her greatest concern is for participants. “We wanted to provide feedback to say, ‘OK, this is what we determined between your two tests,’” she said. “There were probably a few people, I know they said they were going to suggest that they needed to follow up with their doctor. There was some concerns. We had already started putting together those letters. Now that it’s defunded, we are not going to be able to do that.” A spokesperson for HHS, which oversees NIH, did not respond to a request for comment.