A slew of National Institutes of Health grant terminations in the spring left affected Northwestern researchers with few avenues to reinstate funding for their disrupted multi-year research projects.
To get their funding reinstated and avoid abandoning projects, some professors turned to joining lawsuits to reinstate funding or working with the Office of General Counsel at NU, which can send a letter of appeal to the NIH.
After the initial $790 million federal funding freeze in April, the University announced its commitment to continue funding research affected by the freeze and the around 100 stop-work orders issued by the Department of Defense. NU extended the commitment through at least the end of 2025.
However, research projects with terminated NIH grants have not received continued financial support from the University.
“While Northwestern does not control the federal cancellation of grants or changes in federal agency funding priorities, we are working hard to restore federal research funding to the greatest extent possible,” a University spokesperson wrote in an email to The Daily.
On March 21, two of Feinberg Prof. Gregory Phillips II’s NIH grants were terminated.
Phillips had used the grants to research substance use and HIV risk in LGBTQ+ populations. He was in the fourth year of the five-year grants when they were terminated.
To research HIV risk and mental health in relation to alcohol use disparities among LGBTQ+ youth, Phillips received a $2,483,960 NIH grant. To study data monitoring the health of “sexual and gender minority populations” and community engagement to address disparities in alcohol use, substance use and mental health, Phillips received a $2,872,007 NIH grant.
“It was just a rough few months to be told that (not just) the work you’re doing is wrong and not fundable, but also who you are, because all of it was around (Diversity, Equity and Inclusion) stuff, and you can’t do LGBT stuff,” Phillips said. “It’s hard to hear that the research doesn’t matter, especially when you’re part of the community.”
Phillips joined two lawsuits to attempt to fight his grants’ terminations.
He joined 15 other plaintiffs in the Gay and Lesbian Medical Association’s lawsuit, filed on May 20, against the NIH, where Phillips said he signed his name as a resident of Chicago, not in his University capacity. On Aug. 1, a U.S. district court judge blocked the NIH from terminating research grants that funded essential research addressing the health of sexual and gender minorities, including critical HIV research.
In May, Phillips joined another lawsuit led by the American Public Health Association, adding his two terminated grants to a large list of grant terminations a judge ruled illegal and ordered NIH to reinstate.
By Sept. 17, Phillips’ grants had been reinstated. However, the funding return was contingent on fundamental changes to Phillip’s research.
“The title of the grant, the aims of the grant, the abstract of the grant, all of those were told to change, to make it more aligned with governmental priorities,” he said.
Phillips said his research is no longer able to target specific populations within the LGBTQ+ community, because he can no longer ask for information about gay or transgender individuals.
Phillips’ research relies on the Youth Risk Behavior Survey, a biennial questionnaire run by the Centers for Disease Control and Prevention that asks millions of high school students about health behaviors, including drinking, smoking tobacco and engaging in sexual activity.
In the early months of the Trump administration, the survey was removed from the CDC website, before being reinstated with a disclaimer condemning “gender ideology.” Phillips said he is unsure whether he will receive this year’s survey results.
“The loss of data that target attacks on specific populations (is) just going to exacerbate the problem of mental health, of substance use, all these things that we know are higher among LGBTQ populations,” Phillips said. “The inability to do work that focuses on them means that there’s going to be less initiatives, projects funded, research that focus just on them.”
Bea Floresca, who previously worked on Phillips’ team, said the data tells a story and is used for policymaking in addition to research.
Phillips informed Floresca that their job might be at risk before the University terminated their position. They added that multiple colleagues also lost their jobs.
Floresca said there used to be around 10 researchers working under Phillips; now there are only two.
“It’s just hard to see a lot of people I know who work in this space, including myself, just not be able to do the work that we know is helping keep our community strong at a time we know our communities are really hurting,” she said. “It’s just disappointment and exhaustion more than anything.”
Floresca was later able to secure a new position as a research project coordinator within the Feinberg School of Medicine.
Because of the hiring freeze, Phillips said it is difficult for him to hire more researchers, leaving him as the sole researcher on the project and responsible for running all data analysis.
“We’re not able to do the rigorous evidence-based science we are supposed to be doing as researchers,” Phillips said. “It’s not feasible anymore.”
Feinberg Prof. Minoli Perera studies pharmacogenomics, using a patient’s genome to predict drug response.
Perera called her NIH funding a “hard science grant” and was surprised when the grant funding her research on epigenomic drivers of drug responses in partnership with the University of Puerto Rico was terminated in March.
“People like me, whose grants have been terminated because they were ‘DEI,’ there is no relief for us,” she said.
Perera said she spent a lot of time appealing the grant’s termination, which was worth a total of $745,930, through NU’s legal counsel, and met with an NIH officer to ask why her research was considered DEI.
The NIH officer told her that using words such as “disparities and outcomes” or stating “that Puerto Ricans are a group of people that are defined as an ethnicity, but are actually composed of many different ancestries” led her grant to be flagged and “terminated at its highest level,” Perera said.
The NIH did not respond to The Daily’s request for comment by the time of publication.
Her work involved recruitment out of the University of Puerto Rico’s Hospital for patients taking clopidogrel, a drug used to treat coronary artery disease.
She said she was interested in studying Puerto Ricans taking medication due to their genomes being “unique biologically” as they have varying amounts of African ancestry.
“When we study the genomes of humans, there’s great potential for us to find things that help all humans, not just the small group of humans we study,” Perera said. “But I think in the current environment, that’s a very hard message to say in a sanitized way.”
Perera said she “sanitized” the language in the grant to try to get the funding back.
She added that in her letter to the NIH director who terminated the grant, she highlighted that because her research is in the genome, it “transcends” the group it is found in and benefits more than just that population.
Perera’s appeal failed, and her funding has yet to be restored. The project had to be stopped in the middle of the year after patients had been recruited, she said.
She said it has been difficult to continue the project because they can no longer pay employees or recruit patients, but Perera is trying to utilize the samples that have already been collected, although she noted that there is not much data. Once the NIH rejected her appeal, Perera said the only other way to get the funding back is to join a lawsuit.
Perera said she does not know how to start thinking of taking legal action against the federal government to reinstate her funding. She described the idea of a lawsuit as “daunting.”
“I feel a little lost in my ability. I needed somebody bigger than me to advocate or help guide that process,” Perera said.
Feinberg Prof. Melissa Simon expressed similar frustrations over a lack of support in their efforts to reinstate their NIH funding.
Simon was the principal investigator and project leader for a $16 million five-year NIH grant to fund the hiring of 15 new tenure-track faculty from historically underrepresented populations in the areas of cancer, cardiovascular, and brain and behavioral sciences.
The initiative, called the NU Recruitment to Transform UnderRepresentation and Achieve Equity program, was one of only 11 such awards nationwide.
The grant was terminated April 8 because it was deemed to be “harmful to the health of Americans” because of “illegal DEI activities,” Simon said.
She said NU did not allow her to appeal the termination or pursue legal action. A University spokesperson did not respond directly to a request for comment about Simon’s situation.
Simon said many of the other universities that received the same funding from the NIH Common Fund’s Faculty Institutional Recruitment for Sustainable Transformation program — including the University of Michigan, the University of California San Diego, the University of Maryland, the University of Alabama Birmingham and more — appealed or sought legal action to reinstate their funding.
“It feels as if every (primary investigator) is being left to fend for themselves, and that’s not how we get our funds turned back on,” Simon said. “That’s not how we get more grants. Right now, when you feel like an island amidst a vast ocean of no help as an investigator, or a faculty member here at this institution, it’s extremely disheartening, unsettling and scary.”
As a faculty scientist and an NU professor of almost 20 years, Simon said the lack of University support has been frustrating.
“Science is not just for today, tomorrow, next month or through December,” Simon said. “Science is a long journey that requires some commitment and investment.”
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