{"id":628526,"date":"2026-09-18T12:26:09","date_gmt":"2026-09-18T12:26:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/628526\/"},"modified":"2026-09-18T12:26:09","modified_gmt":"2026-09-18T12:26:09","slug":"clear-retribution-dismay-as-key-alzheimers-study-cancelled-amid-trump-attacks-on-science-us-healthcare","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/628526\/","title":{"rendered":"\u2018Clear retribution\u2019: dismay as key Alzheimer\u2019s study cancelled amid Trump attacks on science | US healthcare"},"content":{"rendered":"

Roderick Blair was surprised when scientific researchers appeared on his doorstep in the Homewood neighborhood of Pittsburgh, Pennsylvania<\/a>.<\/p>\n

Here, on a recent summer day, police cars, an ambulance and a TV reporter crowded into a driveway on the edge of the neighborhood. A helicopter swung overhead. Saplings peeked over rooflines from gutters, windows were broken, screens tattered, doors boarded up and rippling sidewalks crumbled. Bedraggled chain link fences held back the season\u2019s tall grass.<\/p>\n

Blair\u2019s address had been randomly selected to participate in a research trial on healthy eating. Blair, a 70-year-old retired emergency preparedness worker who spent a career on Capitol Hill, was not enthusiastic.<\/p>\n

\u201cI know about the stubbornness of some researchers where Black people were just a throw-aside, [to] get two of them to say, \u2018We studied all black people,\u2019\u201d he said. \u201cI choose not to participate in that foolishness.\u201d<\/p>\n

However, as researchers stayed in the community, he was convinced of their sincerity. For more than a decade, he participated in a series of data collection efforts \u2013 wearing a sleep monitor and a fitness watch, answering detailed and highly personal survey questions about education, childhood experiences and even sexual abuse. Finally, he was asked to take a cognitive test.<\/p>\n

\u201cIt started off really basic. And they said eventually, \u2018We\u2019d like to do cognitive tests on you.\u2019 I said, \u2018That won\u2019t happen.\u2019\u201d<\/p>\n

It was a \u201cdelightful\u201d young test proctor who changed his mind, and he finally took that test too \u2013 twice. This last assessment was meant to capture cognitive changes \u2013 specifically Alzheimer\u2019s disease.<\/p>\n

But Blair \u2013 and the roughly 600 other participants \u2013 may never learn the results of his cognitive tests, despite what researchers promised and now have all the data to do so. They won\u2019t know because this grant, like hundreds of others nationally, was terminated by the Trump administration<\/a>.<\/p>\n

\u201cThe real loss is that we promised our participants information and feedback based on their two cognitive tests or assessments that they did,\u201d said Tamara Dubowitz, one of the primary investigators on the study, a professor at the University of Pittsburgh and chair of epidemiology, who spoke only in her personal capacity.<\/p>\n

This was the \u201cPhresh\u201d study, a 15-year-long research project that began as an examination of food deserts. It evolved into a rich set of data on the life course, wellbeing and eventually cognitive health of two aging, low-income and majority Black neighborhoods just a few miles from a major Alzheimer\u2019s research hub, the University of Pittsburgh.<\/p>\n

Now, the funding cuts have the potential to unnecessarily delay diagnosis of Alzheimer\u2019s disease or dementia syndromes in the group \u2013 diseases whose treatments rely on early diagnosis.<\/p>\n

Nearly 7 million people in the US live with Alzheimer\u2019s. Most are white, but Black Americans have nearly double the risk of developing Alzheimer\u2019s dementia, according to the Alzheimer\u2019s Association<\/a>. For decades, this was framed as an \u201cindividual risk factor.\u201d<\/p>\n

Roderick Blair stands outside his home in Homewood. Photograph: Justin Merriman\/The Guardian<\/p>\n

Researchers and theorists have begun to reframe this idea: that these individuals are at risk because of forces far outside their control, such as neighborhood divestment, the weathering effects of discrimination and trauma, all factors scientifically validated through years of research. As Blair and other participants shared their lifestories, habits and biometric data, as collected by surveys, wearables monitors and old-fashioned blood-pressure cuffs and scales, the impact of those forces was chronicled as data.<\/p>\n

There is no single source accounting for race in Alzheimer\u2019s research, but clinical trials<\/a> and research studies are known to skew toward wealthy and white<\/a> participants. In just one clue about the level of disparity, of more than 12,000 brain-imaging<\/a> studies on Alzheimer\u2019s, only about 700 report race at all. Studies that do report race have more than 87% white participants<\/a>. As of 2020, census data<\/a> found about 58% of the US population was white.<\/p>\n

As the Trump administration attempts to remake science according to its own priorities \u2013 canceling, freezing or otherwise disrupting more than 5,700 medical research grants<\/a> at the National Institutes of Health (NIH) \u2013 work such as Dubowitz\u2019s has been alternately labeled \u201cDEI\u201d (diversity, equity and inclusion) or unscientific.<\/p>\n

Researchers were given 90 days to shut down the study, more than five months earlier than expected and a year earlier than hoped. It\u2019s far too little time to conduct cognitive \u201cadjudications,\u201d where a neuropsychologist and geriatric psychiatrist were expected to interpret the results of all 600 participants \u2013 experts that the researchers now can\u2019t pay.<\/p>\n

To Blair, the cancellation of the study \u2013 one that the community trusted more each year that researchers stayed \u2013 was \u201cclear\u201d retribution.<\/p>\n

\u201cIf you don\u2019t agree with me, you\u2019re going to go to the woodshed,\u201d said Blair, later adding, \u201cWhat has this administration done that has not been a retribution?\u201d<\/p>\n

Dubowitz\u2019s study has a design unique among Alzheimer\u2019s research. The study was first funded in the Obama administration, at the height of concern around obesity and \u201cfood deserts\u201d \u2013 neighborhoods that lack a nearby grocery store.<\/p>\n

The study was designed around a natural experiment. The Hill District and Homewood were both predominantly Black, low-income neighborhoods near the University of Pittsburgh. Both were food deserts. The Hill District was slated to get a grocery store. Homewood was not. Thus, the study was named the Pittsburgh Hill\/Homewood Research on Eating, Shopping and Health (Phresh).<\/p>\n

Addresses were randomly selected from each neighborhood to study the health effects of the new grocery store, which is how a researcher came to knock on Blair\u2019s door. It is also a radically different selection model from most research studies, which tend to rely on interested participants.<\/p>\n

In the first round of the Phresh study, Dubowitz found health improved in Hill District and not Homewood, but not for the reason she thought. Health improvements were not linked to shopping at the grocery store. Instead, they appeared to be linked to neighborhood investment. Dubowitz redesigned the study<\/a> \u2013 moving from grocery stores to neighborhood noise and sleep, a block by block assessment of parks and sidewalks, cardiovascular health and, finally, after feedback from the now-aging cohort, to mental health and Alzheimer\u2019s disease.<\/p>\n

\u201cWhen we started collecting data around grocery stores and asking about fruits and vegetables, people started telling us other things that was happening,\u201d said La\u2019vette Wagner, the field coordinator for Phresh. \u201cI said to Tamara, \u2018These people are really going through some mental health issues. They\u2019re really having some trauma.\u2019 She said, \u2018OK, let\u2019s start adding questions about mental health.\u2019\u201d<\/p>\n

The natural experiment design was dropped. The neighborhoods were no longer compared, but seen as one. As the Alzheimer\u2019s study got off the ground, participants received hours of scientifically validated surveys assessing a whole lifetime of adversity and resilience, a theory described in academic circles as the \u201clife course\u201d model. In layperson\u2019s terms: what you went through as a child affects your health as an adult.<\/p>\n

Participants were asked about childhood sexual abuse, neglect and violence, education and recent trauma. Participants disclosed highly personal information and stories \u2013 many of which underscored the reality of life on fixed incomes or as victims of violence. A child was killed, they cared for grandkids, they struggled to afford food and medicine. Stories of relatives and friends with Alzheimer\u2019s came out. In the course of the study, Wagner\u2019s friend was diagnosed first with depression, then dementia.<\/p>\n

\u201cIn the African American community, we might think, \u2018Oh, so-and-so is withdrawn, they\u2019re not talking or they\u2019re doing things. It might be a form of depression,\u2019\u201d said Wagner. \u201cAnd I think what\u2019s happening now is people are now speaking up and speaking out, knowing to go get their family members tested.\u201d<\/p>\n

The University of Pittsburgh\u2019s Cathedral of Learning rises above homes in the Oakland neighborhood. Photograph: Justin Merriman\/The Guardian<\/p>\n

In August, the study was at the cutting edge of brain health and social epidemiology \u2013 researchers had just finished their second and final round of cognitive examinations, and were ready to \u201cadjudicate\u201d the cognitive status of participants with a neuropsychologist and geriatric psychiatrist.<\/p>\n

Then, the termination letters came.<\/p>\n

National Institutes of Health (NIH) director Jay Bhattacharya, a Trump appointee, described long-accepted self-report metrics that link trauma, deprivation and discrimination to health status as, \u201cnot in alignment with NIH\u2019s priorities related to \u2018promoting research focused on scientifically valid measurable health outcomes\u2019.\u201d The work \u201cno longer effectuates the program goals or agency priorities\u201d, one letter said. The result, researchers said, will almost certainly rebalance studies to include more white participants.<\/p>\n

The administration canceled thousands of scientific grants<\/a> in 2025, arguing they were related to DEI. Although many grants were reinstated after litigation, the administration has continued to quietly cancel more research in 2026.<\/p>\n

Alongside Phresh<\/a>, the administration terminated two more brain health grants \u2013 targeted cancellations that legal experts believe are meant as test cases for courts. All studied how discrimination impacts mental health.<\/p>\n

\u201cThe administration, particularly Secretary [Robert F] Kennedy [Jr], has followed a very clear pattern,\u201d Lawrence Gostin, a professor of global health law at Georgetown Law, told the Guardian in August<\/a>. \u201cThey do something that\u2019s 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\u2019s what\u2019s going on here.\u201d<\/p>\n

The abolished grants at Pittsburgh are among 90 that the University of Pittsburgh has had cancelled, totaling about $33m, and excluding those that were later reinstated. Emory University has lost $92m in funding<\/a>.<\/p>\n

\u201cThe University of Pittsburgh is in the process of submitting appeals to the National Institutes of Health regarding the agency\u2019s recent termination of these awards,\u201d said Jared Stonesifer, the university\u2019s head of communications.<\/p>\n

\u201cThese appeals represent the first step in the administrative process meant to act as a pathway for the university, as the recipient of the grants, to seek review of funding decisions. The university believes these appeals are supported by a strong legal foundation and will present its position through the appropriate channels. While the process is ongoing, the university remains hopeful for a favorable resolution.\u201d<\/p>\n

Researchers at Pitt are now also named plaintiffs<\/a> in a class-action lawsuit against the NIH, which argues that the administration is attempting to censor research whose conclusions it disfavors.<\/p>\n

\u201cThe plaintiff\u2019s experiences and stories here really evidence that censoring research can have life or death consequences,\u201d said Olga Akselrod, senior counsel with the American Civil Liberties Union\u2019s racial justice program, and one of the lead litigators in the case. \u201cIt 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 and some of the most accute health disparities.\u201d<\/p>\n

The cuts have come as the administration is seeking to move the entire $1tn federal grant-making<\/a> apparatus under the control of political appointees.<\/p>\n

Phresh was at the forefront of work connecting brain health to adverse experiences and resiliencies but it was not the only study to move in this direction.<\/p>\n

The second study canceled at Pitt was called the Cobra study, or connectomics in brain aging. It was led by Anne Cohen, a professor of psychiatry, who was collecting brain scans and blood biomarkers from diverse participants and then comparing those biomarkers to metrics that use US government data, such as the area deprivation index<\/a>.<\/p>\n

Anne Cohen, who led the Cobra study. Photograph: Justin Merriman\/The Guardian<\/p>\n

At Emory, associate professor of psychiatry Negar Fani was studying how discrimination impacts the white matter of the brain, collecting brain scans, biometrics and conducting sophisticated fusion analysis.<\/p>\n

In each case, race was important, but also a shorthand for something more profound \u2013 deprivation, trauma and the way those forces manifest in the body.<\/p>\n

\u201cI want to emphasize it\u2019s not just about race,\u201d said Andrea Rosso, an associate professor of epidemiology at the University of Pittsburgh, a brain health expert, and a co-investigator in the Phresh study, who also spoke in her personal capacity.<\/p>\n

\u201cThe white people that show up in clinical samples have a much higher rate of this pure Alzheimer\u2019s pathology, amyloid plaques, tau tangles, and very little other stuff going on in their brain,\u201d said Rosso. \u201cThey\u2019re younger. They tend to be the people who are 60 years old and having Alzheimer\u2019s disease, so they haven\u2019t even aged enough to develop this other pathology. Whereas if you go out in the community and recruit people, again, whether they\u2019re Black, whether they\u2019re poor, whether whatever \u2013 they\u2019re just not the people that are knocking down your door. Almost all of them have mixed pathology\u201d she said.<\/p>\n

\u201cAnd that\u2019s traditional Alzheimer\u2019s pathology, that\u2019s vascular pathology,\u201d said Rosso. \u201cIt\u2019s Lewy body pathology, which is pathology related to Parkinson\u2019s. It\u2019s tau pathology in the absence of amyloid. It\u2019s a whole bunch of other stuff.\u201d<\/p>\n

The health implications of deprivation and trauma are based on decades of validated, and even celebrated, research. One of the better-known surveys used by Dubowitz and Rosso was called ACEs, or the adverse childhood experiences study. The study was developed by a Kaiser Permanente physician and Centers for Disease Control and Prevention (CDC) researchers in the late 1990s. It was the first to associate childhood traumas \u2013 such as abuse, neglect and even divorce \u2013 with long-term health conditions, including cardiovascular disease, hormonal imbalances, long-term inflammation and even lifetime earnings.<\/p>\n

This is also what Trump administration officials, in their effort to get cancellations to legally stick, have called out as unscientific \u2013 a fact that befuddles brain health researchers. Study after study has shown that it is not just the reality of discrimination or trauma that affects health \u2013 say, being the legally vindicated victim of a hate crime \u2013 but the perception.<\/p>\n

Ramona Roush, a Cobra participant, in Beaver, Pennsylvania. Photograph: Justin Merriman\/The Guardian<\/p>\n

\u201cMany times we ask people about events they\u2019ve experienced and their perceptions of those events and the symptoms they have of those events,\u201d said Fani, who spoke to the Guardian in August, at the time the studies were terminated. \u201cPTSD researchers \u2013 we don\u2019t go into history and try to find police reports.\u201d<\/p>\n

The NIH argument \u201cthat self-reported measures are not scientifically valid \u2026 would rule out a large portion of our entire field\u201d, Fani said. \u201cWe ask people about their trauma, and symptoms, and depression, to lifestyle, to their reports about alcohol and substance abuse, their reports about physical pain and medication usage.\u201d<\/p>\n

Further, diversity in research is critical not just for racial minorities or women, who are underrepresented, but for all patients. In just one example, Cohen\u2019s recent work found that blood tests for Alzheimer\u2019s, which have been championed by the Trump administration, can be tripped up by some pathologies.<\/p>\n

\u201cThis is something that\u2019s really, really distressing to me about this termination and what we had planned for the next iteration of this grant,\u201d said Cohen. \u201cThe Cobra study contributed to several very important recent publications about the performance of these blood biomarkers\u201d with, \u201ccomorbidities like kidney disease and vascular disease.\u201d Blood samples Cohen collected for the work are now under threat of destruction because of the grant cancelation.<\/p>\n

\u201cNow, it just feels like that exploration is kind of dead in the water,\u201d said Cohen.<\/p>\n

La\u2019vette Wagner, field coordinator for the Phresh study. Photograph: Justin Merriman\/The Guardian<\/p>\n

Across town, La\u2019vette Wagner, the field coordinator for Phresh, is packing up her office in the Hill District. A white box on the floor contains pamphlets she used to give her data collectors, who then used to give them to participants, including one whose pages were filled with Black therapists. Down the hall are the scales, fitness watches, sleep monitors, blood pressure cuffs and sleep diaries.<\/p>\n

Wagner will need to start looking for a job if no new studies come in. She\u2019s been with Phresh for 15 years. But her greatest sadness is for participants.<\/p>\n

\u201cWe wanted to provide feedback to say, \u2018OK, this is what we determined between your two tests,\u2019\u201d said Wagner. \u201cThere 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,\u201d she said.<\/p>\n

\u201cNow that it\u2019s defunded, we are not going to be able to do that.\u201d<\/p>\n

A spokesperson for HHS, which oversees NIH, did not respond to a request for comment.<\/p>\n","protected":false},"excerpt":{"rendered":"Roderick Blair was surprised when scientific researchers appeared on his doorstep in the Homewood neighborhood of Pittsburgh, Pennsylvania.…\n","protected":false},"author":2,"featured_media":628527,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[103,61,60],"class_list":["post-628526","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-health","tag-ie","tag-ireland"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/628526","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=628526"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/628526\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/628527"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=628526"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=628526"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=628526"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}