Participants in one of the most ambitious community-based investigations into brain health in the United States have been told their cognitive test results will never be returned, after the Trump administration terminated the grant mid-stream. The decision has sparked anger among researchers, bewilderment among participants, and fears that vital diagnoses will be delayed for hundreds of older Black Americans already living on the sharpest edges of the health divide.
For more than a decade, the Phresh study – the Pittsburgh Hill/Homewood Research on Eating, Shopping and Health – had followed hundreds of residents in two of the city’s most disadvantaged neighbourhoods. It began as a food desert project. It became something far more significant: a detailed chronicle of how poverty, trauma and discrimination shape the ageing brain. Now, with the plug pulled, that work lies in pieces.
A community left without answers
Roderick Blair, a 70-year-old retired emergency preparedness worker, still remembers the day researchers first knocked on his door in the Homewood neighbourhood. He was not impressed. “I know about the stubbornness of some researchers where Black people were just a throw-aside,” he said. “I choose not to participate in that foolishness.”
But the researchers kept coming back. Over the years, they won his trust. Blair wore sleep monitors and fitness watches, completed exhaustive surveys about his childhood, his education, even his experiences of abuse. When the team asked him to take a cognitive test, he refused. Then a young test proctor changed his mind. He took it twice.
That second assessment was meant to capture signs of Alzheimer’s disease. Blair, like the roughly 600 other participants, will now never know what it showed. “The real loss is that we promised our participants information and feedback based on their two cognitive tests,” said Tamara Dubowitz, professor of epidemiology at the University of Pittsburgh and the study’s principal investigator. “We had all the data. We had everything we needed. And now we can’t deliver.”
The cancellation came in the form of a termination letter from the National Institutes of Health, which said the study “no longer effectuates the program goals or agency priorities”. Researchers were given 90 days to wind down operations – far too little time to conduct the neuropsychological “adjudications” that would have turned raw test scores into clinical conclusions. The specialists needed to interpret the results can no longer be paid.
For Blair, the message is unambiguous. “If you don’t agree with me, you’re going to go to the woodshed,” he said. “What has this administration done that has not been a retribution?”
A study built on trust, not just science
Phresh began in the Obama era, at the height of concern about “food deserts” – neighbourhoods without a single decent grocery store. Its design was elegant: the Hill District was due to get a new supermarket; neighbouring Homewood was not. By randomly selecting addresses in each community, researchers could isolate the health effects of investment.
But the data told a more complicated story. Health improved in the Hill District, but not because of the grocery store. The real driver appeared to be something less tangible: the psychological and physiological effects of neighbourhood improvement itself. Dubowitz and her team redesigned the study. They began measuring sleep, stress, cardiovascular health and, eventually, cognition.
La’vette Wagner, the study’s field coordinator for 15 years, said participants began opening up about trauma they had never shared before. “People started telling us other things that was happening,” she said. “They’re really having some trauma. She said, ‘OK, let’s start adding questions about mental health.’”
The natural experiment was abandoned. The neighbourhoods were no longer compared; they were treated as one. Participants were asked about childhood sexual abuse, neglect, violence, discrimination, financial strain. They disclosed stories of murdered children, of caring for grandchildren, of choosing between medicine and food. The data captured the “life course” model – the theory that what happens to you as a child echoes through your body for decades.
Rosso, a co-investigator and expert in brain health, said community-recruited participants rarely present with “pure” Alzheimer’s pathology. “They’re just not the people that are knocking down your door. Almost all of them have mixed pathology,” she said. “That’s traditional Alzheimer’s pathology, that’s vascular pathology. It’s Lewy body pathology. It’s tau pathology in the absence of amyloid. It’s a whole bunch of other stuff.”
The administration’s war on ‘woke’ science
Phresh was not the only casualty. The University of Pittsburgh has lost roughly $33m across 90 cancelled grants. Emory University has lost $92m. Nationwide, more than 5,700 NIH grants have been frozen, cancelled or disrupted since the administration began its purge of research tied to diversity, equity and inclusion.
The administration has argued that self-reported measures – surveys asking people about trauma, discrimination and stress – are not scientifically valid. NIH director Jay Bhattacharya, a Trump appointee, has said such work is “not in alignment with NIH’s priorities”. This position has baffled brain health researchers.
“Many times we ask people about events they’ve experienced and their perceptions of those events and the symptoms they have of those events,” said Negar Fani, an associate professor of psychiatry at Emory whose own study on discrimination and brain white matter was also terminated. “PTSD researchers – we don’t go into history and try to find police reports.”
The administration has also targeted studies that examine how discrimination affects mental and physical health, with legal experts suggesting the cancellations may be deliberate test cases. Lawrence Gostin, a professor of global health law at Georgetown Law, said the pattern is clear. “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.”
The University of Pittsburgh is appealing. A class-action lawsuit, brought by researchers including Dubowitz, argues that the administration is attempting to censor science whose conclusions it dislikes. Olga Akselrod, senior counsel with the ACLU’s racial justice programme, put it bluntly: “Censoring research can have life or death consequences.”
The science at stake
The loss of Phresh is not just a blow to the participants. It is a setback for an entire field of research that has spent decades trying to understand why Black Americans are nearly twice as likely to develop Alzheimer’s dementia as white Americans. Of more than 12,000 brain-imaging studies on Alzheimer’s, fewer than 700 even report race. Of those that do, more than 87% of participants are white.
The administration has championed blood tests for Alzheimer’s as a priority. But those tests, researchers warn, can be thrown off by mixed pathologies – the very thing that makes community-based research so important. “This is something that’s really, really distressing to me about this termination,” said Rosso. “We were at the cutting edge.”
Wagner is now packing up boxes of scales, sleep monitors and blood pressure cuffs. She had already started drafting letters to participants, telling them what the team had found. “Now that it’s defunded, we are not going to be able to do that,” she said.
For Blair, the betrayal is deeply personal. He had spent a career on Capitol Hill, had watched governments come and go, and had still chosen to trust. “They stayed,” he said. “They kept coming back. And that meant something.”
Why it Matters
This is not a story about one grant, or one neighbourhood, or one set of researchers. It is about what happens when science is silenced for political convenience. The data from Phresh and studies like it are not abstractions – they are the difference between an early dementia diagnosis and a late one, between a family having time to plan and a family left to scramble. The Trump administration’s assault on diversity-focused research will have consequences for decades, and the people who will feel them first are the ones who trusted science the most.
