In February, the National Institutes of Health (NIH) — 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 cancelled without a scientifically valid explanation. The NIH cited only vague connections to “gender identity” and “diversity, equity, and inclusion” (DEI), or other now-forbidden topics such as vaccine hesitancy and COVID, as justification, claiming these projects no longer aligned with “agency priorities.”

These funding cuts raise serious ethical concerns for study participants and risk many life-saving findings going unpublished. The NIH has undermined research on life-threatening diseases that affect us all like 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, 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.

On behalf of researchers, the American Public Health Association (APHA), the International Union, United Automobile, Aerospace and Agricultural Implement Workers of America (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 cancelled 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.

In my decades of research on HIV prevention and drug regulation, I have seen science meaningfully advance public health. Before NIH abruptly terminated our grant, I was advising a project with the potential to significantly expand access to urgently needed HIV prevention.

The NIH-funded OFFSCRIPT grant was the first study to evaluate the impact of making PrEP, a medication that significantly reduces the risk of HIV transmission, available over the counter. Although PrEP is highly effective, it remains underutilized. This research aimed to close that gap by studying how to expand access, particularly for high-risk communities. At the time of our grant’s cancellation, we were midway through work on three primary study aims. All have been halted and, now, knowledge that could have stopped the transmission of HIV is out of reach.

The termination letter was vague and did not give guidance on how to responsibly close out the study or manage participants already enrolled. Instead, NIH cited that because our grant was “based on gender identity,” it no longer aligned with “agency priorities.” This was both inaccurate and confusing. Our work on the OFFSCRIPT grant was not based on gender identity. Rather, it examined strategies to expand access to PrEP for all patients, with a focus on populations disproportionately affected by HIV and most likely to benefit from prevention measures, including cisgender men who have sex with men, transgender women, and cisgender women. NIH’s own Strategic Plan for 2021-2025 includes a bold prediction that its research will “significantly reduce the number of new HIV infections” through new implementation strategies for PrEP. OFFSCRIPT was directly aligned with that goal.

HIV prevention is a topic of great personal and professional importance to me. Now, that research has been suspended at a great loss to public health.

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 percent 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.

I was raised in a family of proud union nurses. Service, fairness, and standing up for those in need are beliefs that I hold deeply. I was called to public health through academic work, advocacy, and frontline care in LGBTQ communities. I am an associate professor at Harvard Medical School and the Harvard T.H. Chan School of Public Health. Last year, I founded the LGBTQ Health Center of Excellence. Over the past 15 years, I have received continuous NIH funding and secured more than 15 grants. But I have never seen grants rescinded so abruptly or with so little care for the researchers and participants involved.

In March, NIH terminated my entire portfolio of grants, resulting in nearly $6 million in lost funding to address LGBTQ health inequities. This is no minor adjustment. Rather, it is the abrupt defunding of one of the most federally-supported research programs on LGBTQ health in the world. With its terminations, the NIH sent a chilling message that research serving marginalized communities is no longer safe or sustainable.

My work was intended to improve the mental health of LGBTQ young adults, address adverse pregnancy outcomes of lesbian and bisexual women, and study how LGBTQ couples form families. Despite their documented impact, NIH terminated my grants because they ignored “biological realities” and were based on “gender identity.” As a result, critical findings — such as data showing that lesbian women are nearly three times as likely to experience stillbirth as heterosexual women — may never be published. As this research sits unfinished, more patients will suffer harm and systemic inequities will remain unaddressed.

At the time of these terminations, my team was actively conducting sensitive, in-depth interviews with young people. Participants were sharing intensely personal stories about the toll of anti-LGBTQ policies such as “Don’t Say Gay” laws. The next day, we abruptly cancelled multiple interviews. This sudden disruption jeopardizes the emotional well-being of already vulnerable young people and makes it clear that their contributions were not treated with the gravity they deserved. These are serious ethical concerns. Even if funding were restored today, I am not sure these participants would — or should — trust us again.

The loss of my entire grant portfolio has incapacitated the LGBTQ Health Center of Excellence. I can no longer compensate the team members who support these studies and have already made the devastating decision to let go of a senior member. I fear I will have to let go of the entire team.

Worse still, some of the brightest scientists in public health and medicine are now walking away from this field. Fearing that their scholarship is no longer safe or valued, some are taking medical leave for mental health reasons, while others downplay their focus on health equity in their CVs. Beyond the loss of individual careers, these terminations are the quiet dismantling of a generation of future leaders in medicine and public health. With them goes the hope for a more equitable future.

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 devestating 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+ staff. They are the reason I do this work and the reason I must continue to fight for justice in public health research.