ArcaMax

In February, the National Institutes of Health -- the world's largest public funder of biomedical research -- began an ideological purge of its grants. Without warning, hundreds of research projects -- many of which had been underway for years, representing thousands of hours of work and billions of dollars in investment -- were abruptly canceled without a scientifically valid explanation.

The NIH cited only vague connections to "gender identity" and "diversity, equity, and inclusion," or other now-forbidden topics such as vaccine hesitancy and COVID-19, as justification, claiming these projects no longer aligned with "agency priorities."

These funding cuts raise serious ethical concerns for study participants and risk many lifesaving findings going unpublished. The NIH has undermined research on life-threatening diseases that affect us all such as cancer, HIV and Alzheimer's -- and dangerously implies that some patients are more worthy of care than others. These actions stifle scientific progress and put lives at risk.

Importantly, under long-standing law and practice, the NIH does not have the authority to arbitrarily terminate grants. Its funding decisions must be guided by congressional mandates, regulatory requirements and scientific expertise, not vague and undefined criteria.

The ACLU won't let political ideology dictate public health. So we sued.

APHA v. NIH Complaint

On behalf of researchers, the American Public Health Association; the International Union, United Automobile, Aerospace and Agricultural Implement Workers of America (aka United Auto Workers or UAW); and Ibis Reproductive Health, the ACLU filed a lawsuit challenging this sweeping cancellation of grants. Joining us are our ACLU of Massachusetts affiliate and our partners at Protect Democracy and the Center for Science in the Public Interest.

Behind each canceled grant was a team of scientists who had spent months -- often years -- crafting applications that ran over 200 pages, marshaling data and community partnerships to explain why the scientific gap they aimed to fill was urgent and nationally significant. Beyond funding, securing a grant was a vote of confidence in the scientific merit and public health importance of their work.

As part of our lawsuit, we collected statements from affected scientists as they lay off staff, prematurely end interventions and dismantle years of work. Below, they describe the real consequences -- on science, communities and the future of public health -- when research is erased for political reasons.

Nicole Maphis

My research is dedicated to my grandmother, who was diagnosed with Alzheimer's disease. Watching her condition worsen shaped my commitment to understanding Alzheimer's and dementia more deeply. While I was in the process of applying for a training grant, NIH stripped away its funding and cost me two years of career-defining experience.

Of the nearly 7 million Americans living with Alzheimer's, fewer than 5% have a known genetic cause. That means that the vast majority develop the disease without a clear familial link. I study whether excessive alcohol consumption during critical periods of life can increase this risk, which is an emerging area of research. Scientists have begun to identify this connection, but much remains unknown. My research aims to explain how alcohol exposure may prime the brain for Alzheimer's and to ultimately identify ways to reduce or prevent that harm.

To pursue this work, I applied for NIH's MOSAIC K99/R00 award, which supports early-career scientists from underrepresented backgrounds. I am a woman, a first-generation college graduate, and I come from a low-income family. I devote significant time to STEM outreach, including teaching neuroscience workshops to 7th-grade girls. I applied for MOSAIC because I thrive in mentorship-based programs, and the structure would have positioned me for a faculty career.

Over the course of 70 weeks, I poured hundreds of hours into my application -- time I could have used writing for publications or developing other proposals. When my first submission was not discussed, I revised it carefully based on reviewer feedback and submitted it again. I had no reason to think my application was at risk, until I noticed the MOSAIC program announcement had closed two years early and the website was quietly taken down. When I contacted NIH, I was eventually told that my application had been placed on hold while the agency "reviewed its research priorities."

After many emails, calls and even secondhand updates on social media, I learned that my proposal had been removed from the discussion list the morning of review. I would also not receive any feedback on it. On March 21, a reviewer who participated in that meeting told me that my application was "highly regarded and likely to have received funding" if NIH had not changed course.

Now that NIH is refusing to consider my application, I feel like my career trajectory has been limited. NIH has shelved research that would have deepened public understanding of how alcohol may contribute to Alzheimer's disease and offered new paths for intervention. That work is on hold, and so is my career.

Katie Edwards

I saw firsthand the devastation that sexual violence causes. At a young age, I wanted to do something to prevent it and have dedicated my entire career to identifying solutions that can prevent sexual and related forms of violence among the most vulnerable youth in our nation. Now, instead of focusing on our life-saving work, I often spend 15 hours a day trying to manage the fallout from NIH's unprecedented cancellations of my grants.

LGBTQ+ youth experience disproportionately higher rates of violence and adversity than their counterparts -- rates that increase at the intersection of race, gender and sexuality. Early in my career, I realized how little research existed to understand these disparities and that violence prevention strategies specifically for LGBTQ+ youth and Indigenous youth were essentially nonexistent. My work has since focused on filling this gap: Our lab was the first to show reduced violence and alcohol use among LGBTQ+ youth and sexual violence among Indigenous youth. Beyond preventing violence, this work is helping youth to feel proud of who they are and to be hopeful about their futures.

In March, NIH abruptly terminated six grants for which I was a principal investigator or co-investigator. Across those awards, it cited that each project "no longer effectuates agency priorities," without any individualized feedback, advance notice or acknowledgement of our published progress. I do not understand how rigorous, peer-reviewed research intended to protect vulnerable youth conflicts with agency priorities that seem to have shifted overnight with no official policy that I was made aware of. Most concerning is the message that this sends to vulnerable youth: You are not a priority and you do not matter. All of this will cost lives.

One terminated grant aimed to predict which factors lead to sexual assault among sexual-minority men and trans-masculine people and to support their recovery. We made significant progress on this study since its approval in 2022. NIH even renewed it three times. Our goal was to offer evidence-based guidance to reduce disparities and the staggering costs of sexual violence in the U.S. Now that funding is gone, we cannot develop recommendations, and the communities served by this research will no longer benefit. This was the largest study ever on sexual assault among sexual minority men and it is devastating that so much hard work, thoughtfulness and heart went into a project that now collapsing.

Building on work done by a previously funded NIH project, another terminated grant tested a caregiver program to help families build bonds and support LGBTQ+ youth. We were mid-intervention with our first cohort when our funding was pulled. To abide by our ethical obligations, we were forced to prematurely begin interventions for the control group and can no longer test our hypotheses using a rigorous randomized control methodology. We also had to pause recruitment, which means that dozens of families who would have likely benefited from the intervention cannot access the intervention. This sends a message to families that they do not matter to the current administration.

Altogether, the six terminations represent millions in lost funding -- a devastating loss to my research team, the communities we serve and our study participants. I am racing to find replacement funding. While I have already submitted more than 25 proposals to nonprofit and donor organizations, to date we have raised about $10,000. While we are deeply grateful for these funds, they cannot make up for the millions of dollars lost and I am not hopeful that despite how hard we try to raise other funds, we will come close to what we lost in NIH funding.

On a personal level, I have never been more devastated in my entire life. The emotional and physical toll this has taken on me feels insurmountable and is impacting my family too. I am doing everything I can not to give up and to stay strong for the youth and communities I serve and my 50-plus staff. They are the reason I do this work and the reason I must continue to fight for justice in public health research.

Lisa Francois is a freelance writer. For more than 100 years, the ACLU has worked in courts, legislatures, and communities to protect the constitutional rights of all people. With a nationwide network of offices and millions of members and supporters, the ACLU takes on the toughest civil liberties fights in pursuit of liberty and justice for all. To find out more about the ACLU and read features by other Creators Syndicate writers and cartoonists, visit the Creators website at www.creators.com.

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