First they Came for our AHRQ Articles,then they Came for AHRQ: Scientific Suppression and Struggle in the United States

In many a time, in many a land,

With many a gun in many a hand,

They came by the night, they came by the day,

Came with their guns to take us away

With a knock on the door, knock on the door.

Here they come to take one more,

One more.

—Phil Ochs, “Knock on the Door”

1964 Electra Records

Our “knock on the door” came on the evening, Friday, January 31, 2025, barely ten days after Donald Trump's inauguration as the 47th U.S. president. It was an email from the Agency for Healthcare Research and Quality (AHRQ) Patient Safety Network (PSNet) editor:

“I regret to inform you that your wonderful Case and Commentary from 2022 on ‘Multiple Missed Opportunities for Suicide Risk Assessment’ has been removed from the PSNet website due to a perception that it violates the White House policy on websites ‘that inculcate or promote gender ideology’.”

Removal of our suicide article came as a shock, since (as discussed below) the offending material in our piece is simply a factual list of evidence-based risk factors and had nothing to do with promoting “gender ideology.” But it was hardly surprising, nor was it an isolated attack on scientific information and academic freedom. The next day, we were informed that another one of our articles, which addressed endometriosis, was also taken down.

In total, 20 articles were removed from the AHRQ PSNet website that weekend, along with an estimated 8000 other webpages and 3000 databases that were removed or censored. At the Centers for Disease Control and Prevention (CDC) alone, an estimated 3000 pages and databases were removed, although legal challenges that secured temporary restraining orders, coupled with resistance from the CDC advisory board, resulted in at least temporary restoration of some of those vital resources.^1,2

The thousands of removed and censored articles likely pale in comparison to the even greater number of current and future self-censored and government-censored articles, websites, and scientific proposals, that will never be published due to widespread fear and intimidation resulting from the Trump executive orders. Given both the serious implications of the now-widespread censorship, and the implications for science, public health, and government agencies and programs, we write to share the details of our experience and discuss the broader contexts and implications for public health.

Removal of AHRQ Primary Care Safety Articles on Suicide Prevention and Endometriosis

The Primary Care Improvement in Diagnostic Error (PRIDE) project was a five-year project funded by the Gordon and Betty Moore Foundation in collaboration with the Massachusetts Department of Public Health's Betsy Lehman Center for Patient Safety. Among other activities, PRIDE featured monthly discussions of anonymized cases of potential diagnostic errors. For each case, the project brought together content experts (usually clinicians with specialties relating to the missed or delayed diagnosis) and quality and safety experts to confidentially and anonymously analyze potential diagnostic errors, identify contributing factors, and discuss improvement strategies. From these case discussions the PRIDE team summarized educational lessons, which we shared on the Betsy Lehmann Center's website. For select cases, we also prepared more detailed summaries to post on the AHRQ Web M&M website—a widely recognized, readily accessible peer-reviewed forum for patient safety. ³ From 2019–2022 the PRIDE team contributed a total of eight Web M&M cases to PSNet.

When we were informed that two of our AHRQ PSNet-published cases were being removed to comply with President Trump's executive order “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government,” we were at a loss to understand how these two articles could be considered “gender ideology extremism.” The first, entitled “Multiple Missed Opportunities for Suicide Risk Assessment in Emergency and Primary Care Settings,” discussed an 18-year-old adolescent who had thoughts of killing himself and was found in a hotel room with a gun. Why was this article removed? The reason, we learned, was our use of a banned word in a paragraph listing suicide risk factors—“High risk groups include male sex, being young, veterans, Indigenous tribes, lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ),” along with “serious mental illness, prior suicide attempts and self-harming behavior, alcohol or substance use, serious recent illness or diagnosis, physical pain, a history of trauma or recent loss, and severe anxiety or insomnia.” Inclusion of “LGBTQ” as one of the evidence-based risk factors was deemed unacceptable.

The second PRIDE project article that was removed (entitled “Endometriosis: A Common and Commonly Missed and Delayed Diagnosis”) addressed clinical issues and delays in the diagnosis of endometriosis, a condition that affects one in ten women and is frequently misdiagnosed, with average reported diagnostic delays of 7–10 years.^4–6 Again, the article was flagged for a single sentence: “Although not germane to this particular case, it is important to note that endometriosis can occur in trans and non-gender-conforming people and lack of understanding this fact could make diagnosis in these populations even more challenging.” The point highlighted in that sentence is important, since clinicians may fail to consider endometriosis as a cause of abdominal pain in trans men.

We suspect that the government officials who flagged and ordered these articles to be removed as part of this digital dragnet to comply with Trump's executive orders never even read these peer-reviewed articles. The overreach leading to the articles’ removal would be laughable if it were not so serious. Suicide is a tragic mental and public health problem, with 50 000 suicide deaths and another estimated 1.6 million suicide attempts in the United States each year. Suicide education and prevention is a problem that knows no political bounds, and it needs to be sensitively, scientifically, and honestly addressed,^7–10 rather than being subject to cruel and divisive political games. Suppressing evidence-based risk factors, in the name of “Restoring Biological Truth to the Federal Government” is the opposite of truth. As we wrote to the AHRQ editor who had been instructed by the Trump administration to tell us to censor this risk factor from the article, we would be happy to revise the paper if a factual error had been identified. But revising it to make it untrue (ie, by removing a proven risk factor) would violate scientific integrity. ⁷ We reject the Trump administration's claim that the censorship of our articles promotes the “dignity, safety, and well-being” of women, or of any American citizens. ¹¹ Denying the existence of trans people instead increases stigma, augmenting suicide risk. ¹² Likewise, removing an article highlighting the misdiagnosis and unnecessary suffering of millions of women with severe pain, solely because this article acknowledges that trans men can experience the same condition, can hardly be construed as “defending women.” Further, the Trump administration's targeting LGBT people not only unfairly singles out a group of people by denying their existence but instead adds to stigma, augmenting suicide risk. Likewise, taking down an article highlighting the unnecessary suffering of millions of women with severe pain being misdiagnosed as “just normal periods” can hardly be construed as “defending women.” The list of “banned” words (see Appendix Table 1) casts an unbelievably broad net, and targets virtually every article or proposal that seriously addresses health justice or social determinants of health. Censoring articles and proposals that dare to mention LGBT issues constitutes an attack on large numbers of people along with needed research on the social determinants of health and the pursuit of health justice.

From Attacking AHRQ Articles to Attacks on the AHRQ Itself: History Repeats Itself

The removal of our articles is relatively minor compared to the massive assaults the Trump administration launched on dozens of federal agencies, including the Department of Education, the Agency for International Development (AID), the Environmental Protection Agency (EPA), the Veterans Health Administration, the National Institute for Health (NIH), the Consumer Financial Protection Bureau, and, as we highlight here, the AHRQ.

The chaos, irreparable harm, and deadly health consequences of the cuts, censorship, and intimidation are unimaginable and likely unmeasurable. The foreign aid cuts alone will cause an estimated 14 million additional deaths by 2030, including 4.5 million deaths among children younger than 5 years, hundreds of thousands of new HIV cases and 176 000 additional adults and children who, untreated, will die from HIV, and 62 000 additional people to die from tuberculosis (TB) worldwide.^13–16 The consequences of the destruction of NIH research and infrastructure funding have been widely reported, as has the cutting of over 20 000 Health and Human Services employees. However, the targeting of the AHRQ has received relatively little attention. That story is instructive and important, both for its historical context and its current implications for public health.

AHRQ's origins lie in the 1989 establishment of Agency for Health Care Policy and Research (AHCPR). That agency was charged with funding research on health care outcomes, costs, and quality, and was tasked with developing and disseminating clinical practice guidelines in partnership with the medical community. It was the first U.S. federal agency to systematically produce evidence-based guidelines to inform clinical practice on common conditions. The agency's mandate reflected a late-1980s push to use research to enhance healthcare quality and rein in variation in clinical practices and treatments that could not be justified by evidence.^17,18 ​With extensive clinical input, by the early 1990s, AHCPR had produced 15 comprehensive clinical practice guidelines on topics including congestive heart failure, sickle cell anemia, cancer pain, and low-back pain.

However, this mission put AHCPR in the crosshairs of powerful medical specialty interests when its research conclusions challenged prevailing practices. These clashes began with criticisms from ophthalmology organizations regarding an AHCPR-sponsored outcomes study on cataract surgery ¹⁹ and reached a crescendo when in 1994 the agency released a guideline on low back pain. The back pain guideline found insufficient evidence that commonly performed back surgeries (especially spinal fusion surgeries) improved outcomes for most patients with low back pain and cautioned that such surgeries often led to complications.^20,21 The guideline instead recommended conservative measures (rest, physical therapy, pain management) for most acute low back cases. These evidence-based findings struck at the heart of a high-volume, lucrative surgical practice. Soon, what had been an academic research endeavor exploded into a political firestorm and triggered intense backlash from medical specialties and industry groups who felt their livelihoods were under attack. ²² In addition to offering scientific critiques, surgeons and their industry allies attacked AHCPR on ideological grounds, accusing the agency of wasting taxpayer dollars and government interference with medical practice.

These attacks led to a lobbying campaign against AHCPR and to Republican congressional efforts to eliminate funding for AHCPR. In 1995, Representative Sam Johnson (R-Texas) introduced an amendment to eliminate funding for the agency, reminiscent of the current Trump administration and Republican congressional crusade. Johnson lambasted AHCPR on the House floor, proclaiming that even a partial cut would be a “first step toward the total elimination of this Agency”. ²³

Over the next several years, Republican-led political attacks and drastic funding cuts undermined the AHCPR, and it retreated from guideline development. A 1999 law (Public Law 106-129) renamed and transformed the agency; rather than issuing prescriptive guidelines, its mandate was limited to research to improve care quality, outcomes, and patient safety. This transformation of AHCPR into AHRQ has been described as a case study in how political and industry pressures can reshape a federal agency's trajectory. ²³ A vital effort to enhance the scientific basis for medical decision making was thwarted by fierce resistance when that science threatened entrenched interests—in this case, back surgeons and device manufacturers​.

In its more limited role during the past quarter century, AHRQ has nonetheless been the backbone of quality and effectiveness research, compiling data on health outcomes, including outcome disparities. It has overseen the development of widely used quality and safety tools such as patient experience surveys (CAHPS: Consumer Assessment of Healthcare Providers and Systems), health care safety culture surveys (SOPS: Surveys on Patient Safety Culture), and CANDOR (Communication and Optimal Resolution process and toolkit used by health care institutions and practitioners to respond in a timely, thorough, honest, transparent, and just way when unexpected events cause patient harm).

In our area of particular interest,—diagnostic safety,—AHRQ has supported the development and dissemination of a series of guides and toolkits including the DEER taxonomy (Diagnostic Error and Evaluation Research, a taxonomy to classify where errors occur in the diagnostic process); SaferDx and MeasureDx (tools and resources to identify, analyze, and learn from diagnostic safety events); CalibrateDx (a self-evaluation tool for clinicians to improve their diagnostic decision making); and TeamStepps for Diagnostic Improvement (framework for improved communication and teamwork for diagnosis).^24,25

Resisting Attacks on the AHRQ and Science

In a functioning democracy, one might expect broad bipartisan support for the AHRQ's work to improve patient safety and health outcomes and promote cost-effective health care. Unfortunately, the current U.S. political environment features a very different dynamic. In recent years there have been multiple unsuccessful Republican-led efforts to eliminate the AHRQ. In early spring of 2025, the Trump administration moved operatives from the so-called “Department of Government Efficiency” (DOGE; then headed by Elon Musk, the world's richest man) into AHRQ headquarters in Rockville, Maryland, occupying the agency with the stated goal of slashing 80 to 90% of its budget, in effect realizing ultraconservative congressman Johnson's 1995 goal of destroying AHRQ's predecessor.

Next, AHRQ was eliminated as an independent agency within the U.S. Department of Health and Human Services as part of “restructuring” in accordance with President Trump's executive order “Implementing the President's ‘Department of Government Efficiency’ Workforce Optimization.” Health and Human Services is merging the Assistant Secretary for Planning and Evaluation (ASPE) with the AHRQ to create an “Office of Strategy” charged with informing the Secretary's policies and improving the effectiveness of federal health programs. ²⁶ As of this writing, it is unclear what the future of AHRQ will be, and the fate of its mission or key functions remains uncertain. Already the staff has been reduced by 70% (down from 275 to 80 employees), and no new grants have been issued this year. Every single Republican in the U.S. House of Representatives outrageously and lethally voted for zero funding for AHRQ in the FY2026 budget. If truly coupled with the 80% staffing cuts proposed by DOGE, this almost certainly means an end to the functions and mission of AHRQ. The Trump administration also moved to eliminate the U.S. Preventive Services Task Force (USPSTF), an independent volunteer group of 16 experts, previously overseen by AHRQ. While the US Supreme Court in June ruled its elimination of the USPSTF was illegal it also ruled in such a way that strengthened the Trump Administration's authority over appointments and removals making it more vulnerable to political influence and turnover.

Taking down an important patient safety agency will not “Make America Healthy Again,” but it does call for resistance on many levels (see Box 1). Demonized and demoralized staff who remain at what is left of AHRQ live in fear, threatened and intimidated by edicts banning utterances and documents that include proscribed words (see list in Appendix Table 1). Their careers are in tatters, and their life's work in improving safety and quality is being mindlessly undone. Current projects that are “not aligned” with the administration's views have been abruptly terminated. Numerous lawsuits have challenged such actions at the AHRQ and other agencies (including one filed on our behalf by the American Civil Liberties Union that sought to restore our articles to PSNet files), but as Stephen Vladek pointed out in a New York Times op-ed entitled “The Courts Alone Can’t Save Us,” despite several court victories, irreparable damage to these agencies is being done. ²⁷

The institutional memory and knowledge loss caused by staff eliminations will be difficult or impossible to rebuild. The actions of the administration have created an atmosphere of fear in federal agencies, the research community, and in the general public, particularly immigrants, trans and LGBTQ people, women with unplanned pregnancies, and even among the majority of Americans who rely, or will eventually rely, on Medicare, Medicaid, and Social Security.

Researchers, educators, scientists, and citizens need to resist this administration's multifaceted efforts to restrict science and speech. With repercussions of the wholesale gutting of regulatory agencies that heretofore protected health beginning to be felt, public outcry is growing, and resistance and protests emerging. Educating ourselves, our colleagues, and our students on our civil and freedom of speech rights is vital to fighting external and self-imposed censorship of scientific inquiry.

Community engagement and collective action provide the best antidote to demoralization and depression. Acting together, communities of practice in patient safety, quality, public health, and medicine at large can help protect against these authoritarian attacks on science and public health. The history of efforts to improve patient safety through agencies such as AHRQ offers encouragement that we can, as in the past, resist efforts to dismantle the public health infrastructure vital to the United States and the rest of the world. We must ensure that excellence in (and freedom to pursue) research, education, and medical care are preserved. Patients deserve nothing less.

Postscript

In response to the taking down censorship of our two articles, the American Civil Liberties Union and Yale Law Student Clinic filed a lawsuit, and on May 23, 2025, Circuit Judge Leo Sorkin ruled that the removal of the articles was “a textbook example of viewpoint discrimination by the defendants [government] in violation of the First Amendment” of the U.S. Constitution. He ordered that the articles be restored within seven days. ³⁰ We and others in the legal, medical, public health, patient safety, and LGBT communities were buoyed by this successful resistance to the Trump administration's illegal and anti-science actions. While a small victory, especially compared to the enormity of the damage from Trump-era censorship and attacks, we feel it illustrates one of the many fronts where successful resistance is possible. Hopefully it can provide inspiration to others to similarly resist assaults and build a movement for a healthier, more just world.

The situation at AHRQ continues to worsen with devastating cuts in staff and funding that bode ill for AHRQ's mission and future. An estimated (no official figures are publicly available) reduction of 85% or more of AHRQ's staff has resulted from staff either having been terminated by the Trump administration DOGE-RIF (Department of Government Efficiency Reduction in Force) cuts, or by attrition as demoralized staff leaving given the undermining of the agency and their own job insecurity. No new grants have been funded in the past year, and the Agency's structural integrity and future existence is up in the air as AHRQ has been merged into the new HHS “Office of Strategy.” ³¹ In July 2025 a new Director was appointed, a molecular pathologist with ties to the conservative libertarian organizations such as the Federalist Society (particularly their Regulatory Transparency Project aimed at reducing government regulatory oversight) and the Heartland Institute (a climate change denial “free market think tank”). ³² While there have also been severe cuts and political interference at multiple other U.S. government agencies, as the only agency devoted to improving health care access, delivery and patient safety, the loss of AHRQ will unquestionably, though less visibly, result in massive harm, increased inequities, and costly inefficiencies in U.S health and health care.