In 2019, the US Food and Drug Administration approved a drug with the trade name of Trikafta for the treatment of cystic fibrosis (CF) in children over 12, who harbored the most common genetic mutation associated with the disease.
The National Institutes of Health played a central role in Trikafta’s discovery and development. None other than former NIH director Francis Collins was one of the leaders of the team that discovered the gene responsible for CF when he was a young NIH-funded investigator at the University of Michigan in 1989. Work then followed with the support of the NIH, the Cystic Fibrosis Foundation, and the drug company Vertex to take those insights and drive the development of new therapies for CF.
This is, ideally, how American biomedical research is supposed to work—carefully, constructively, and with the public and private sectors both playing their part. And the NIH is crucial to that process.
Over the next six years, the FDA allowed children older than 2 to take Trikafta and included a wider range of genetic mutations on the label, making the drug available to tens of thousands of patients with CF, many of them young children, and transforming their lives and the lives of their families. What once was a fatal disease, striking down most patients by their 20s, became manageable for many, vastly increasing the survival of people living with CF.
One of those people was the daughter of a young, devoutly Christian couple named Russell and Mary Vought. In 2021, the Voughts were able to get their daughter on Trifakta. As Julia Metraux reported in an article for Mother Jones in early February, Mary Vought was elated: “Today our little one starts #trikafta. Beyond grateful for this miracle drug.… We’re extremely grateful to live in a nation that leads the way on medical innovation.”
But if the Voughts could once be described as symbols of the good that government can do for public health, Russell Vought has now become a symbol of just the opposite.
Metraux told the story about the Voughts because Russell had just been appointed as the director of the Office of Management and Budget, and one of his first priorities was to attempt to gut indirect funding for research institutions from the NIH—the same kind of funding that produced the drug helping Vought’s own child. The Cystic Fibrosis Foundation responded with criticism, stating that discoveries like that of Trikafta depend on this critical infrastructure support, support that Mr. Vought was now putting in jeopardy.
Just a little over 100 days later, it is clear that Russell Vought was just getting started on dismantling biomedical research in the United States. The NIH, when Vought gets through with it, will be a shell of its former self. It’s clear that for the Voughts, gratitude or even any sense of Christian charity is trumped by political sadism. “We want the bureaucrats to be traumatically affected,” Vought said in private talks, recorded on video in 2023 and 2024, and uncovered by ProPublica and Documented, “When they wake up in the morning, we want them to not want to go to work, because they are increasingly viewed as the villains. We want their funding to be shut down.… We want to put them in trauma.”
Vought outlined his plans in Project 2025 and is clearly the brains behind many of the savage attacks on the public sector in the US, including the NIH. But who are his foot soldiers? Who is doing the dirty business at the agency level? While Elon Musk and Robert F. Kennedy Jr. are the chaos agents in chief, useful idiots for turbo-charging Vought’s vision, who is inside a place like the NIH, who is doing the day-to-day work in the destruction of our nation’s biomedical research infrastructure? To put it bluntly, who is responsible?
Two days after Trump’s second inauguration, Matthew Memoli was appointed acting NIH director. Dr. Memoli had been the director of the Laboratory of Infectious Diseases Clinical Studies Unit at the National Institute of Allergy and Infectious Diseases (NIAID). But it wasn’t his scientific, clinical, or administrative expertise that most likely won him this critical post of leading all of the NIH’s institutes and centers. Since 2021, Memoli had been a vociferous critic of Covid vaccination mandates at the agency, bringing him into conflict with the NIAID’s then-director, Anthony Fauci, and his opposition to Fauci seems to be the calling card he needed for the Trump team.
According to multiple sources with direct knowledge of what’s going on inside the NIH, all of whom were given anonymity to protect them from retribution, acting director Memoli arrived at his job already joined at the hip to a new political appointee, James McElroy. McElroy has now been appointed deputy chief of staff to the NIH director, even though positions like this are usually filled by career civil servants.
It is difficult to find anything about McElroy in the public domain, but my sources suggested to me that he is associated with Musk’s DOGE wrecking crew. In addition, Max Kozlov, a reporter at the science journal Nature, wrote that McElroy quickly met with many of the NIH’s directors and clashed with some.
If DOGE needed a guide to the inner workings of the agency, Memoli would have the knowledge to provide. And it is Memoli who pulled the trigger on the cuts to indirect costs, the pausing of grants, their terminations, the decision to slow-walk study sections and council meetings, and the purging of senior staff at the agency, from second-in-command Larry Tabak to numerous institute directors.
Memoli is now the principal deputy director at the NIH (fellow Covid skeptic Jay Bhattacharya has taken the top job), but he seems to still be leading the MAGA charge. Recently, Stat News revealed a leaked e-mail in which Memoli launched into an unhinged rant on international research:
I don’t know how to make this clearer. Subawards to foreign sites can’t continue. This has been horribly mismanaged for years, and it has been completely irresponsible. We must take immediate action. If a study has a foreign site, we need to start closing it down…
First, anyone who has had a foreign subcontract from the NIH knows they are heavily scrutinized, both by the NIH and by our own universities—the charges of gross mismanagement and irresponsibility aren’t altogether credible, particularly coming from someone who has had no relevant experience with extramural research, that is, studies outside of the NIH. Second, even if reforms are needed, the immediate shutdown of international research is, well, irresponsible, as it destroys billions of dollars in ongoing work, which will be difficult or impossible to restart down the line in many cases.
Meanwhile, as Memoli is freezing all international research and billions of dollars of other NIH funding is being held up or withdrawn, two people are cashing in on the field’s misfortune. Memoli and the new acting director of the NIAID, Jeffery K. Taubenberger, just got a windfall from RFK Jr. of, wait for it, $500 million, for their project to develop universal Covid-19 and influenza vaccines, bypassing the standard review of the merits of the work. In fact, serious questions are being raised about the viability of the approach—using whole, killed pathogens for vaccines as they did decades ago for polio—from colleagues in the field. As one scientist said to Stat News regarding efforts in the field towards universal vaccines and this new award to Memoli, “There is incredible work going on. This is not it.”
And there is another new sheriff in town. Eric Schnabel, who previously served in a leadership role in the health and fitness industry, has been recently appointed chief operating officer of the NIH. Again, it is not his substantive expertise that is relevant here: He has no experience with biomedical research or management of multibillion-dollar companies or institutions. In a brief news report on his appointment, Schnabel’s portfolio was said to be focused on “upgrading security measures, increasing operational efficiency and improving employee communication.” Schnabel intends to run a tight ship, as he explained in a recent e-mail I received, which has been leaked elsewhere:
Over the past month, I have observed firsthand the extraordinary work being done at the NIH. I’ve seen true patriots applying their intellect and passion to serve the American people. However, I have also witnessed concerning behavior that must be addressed. Some examples include:
Damage to government property
Operations lacking proper accountability
Failure to maintain clean and orderly workspaces
Complacent behavior
Instances of malicious complianceTo clarify, the definition of malicious compliance is when individuals deliberately follow instructions or rules in a way that they know will cause problems or inefficiencies—often to highlight flaws or out of protest. This behavior, while subtle, is detrimental to our mission and culture.
Let me be clear: We will not tolerate unprofessional conduct. These behaviors will be addressed fairly and swiftly. We are all accountable for creating and maintaining a safe, disciplined, and professional work environment—one where excellence is expected and where every team member can thrive. If you need additional purpose, direction, and motivation; please go and visit the children’s ward in Building 10 or the Children’s Inn. There you will find all the reason / strength that you need to continue mission.
The message is clear. Anyone who stays at the agency, or has yet to be fired, needs to get with the program; do not highlight flaws, attempt to protest, however subtly. Does all this sound threatening? Well, it probably was meant to be. Those I spoke to at the NIH reported a climate of fear, of people “obeying in advance,” rather than pushing back, and those who remain in Bethesda being uncertain about how to work in such an environment without surrendering the core values that drove them to public service in the first place.
Which leaves the new NIH director himself, Jay Bhattacharya. A critic of the NIH and a noted Covid contrarian, Dr. Bhattacharya, a health economist, said he was coming to the NIH to bring more openness and risk-taking in research, to pursue replication of research results to build a more robust evidence base for medical interventions—all terribly wholesome proposals. His biggest champions, Steven Macedo and Frances Lee from Princeton, heralded his appointment as representing “a strong dose of fresh thinking and institutional reform from experts prepared to challenge the reigning consensus and renew our commitment to the basic values of science and liberalism.”
Yet Bhattacharya’s anger over the reception of his ideas about how to handle the Covid pandemic have lingered with him for years now and seem to be a motivating force in his life. The day before Bhattacharya assumed office, Anthony Fauci’s wife, the bioethicist Christine Grady, and one of Fauci’s long time deputies, Cliff Lane, were fired—a welcoming gift from RFK Jr. and a taunt of their common foe. The same day, Fauci’s replacement at NIAID, director Jeanne Marrazzo, was also put on administrative leave, and given the choice to take a position with the Indian Health Service or depart from federal service altogether, while the NIAID’s microbiology and infectious diseases director, Emily Erbelding, was let go. Clearly, it’s not an auspicious start to the promised bright new era for biomedicine in the US that Macedo and Lee said was in store for us.
Yet, over a month into his tenure, Bhattacharya hasn’t complained or pushed back against what is happening at the NIH. In fact, he seems happy and at home after the institutes’ Red Wedding and its continuing aftermath: hundreds of fired employees; hundreds of grants terminated and hundreds more in limbo falling afoul of a list of trigger words for conservatives; thousands of careers around the US and the world up in smoke; a lost generation of biomedical research in this country; and, most tragically, the cures now delayed or forever deferred.
As a former NIH-funded researcher himself, one could have envisioned him as the hero of this tale—fighting back and creating a better NIH for our times. I held out that hope for a week or so myself, thinking he must surely see and know what is going on and would soon call a stop to it. Yet now here he sits among the rubble, surveying his kingdom of dust, and one can’t help but think he’s gotten what he wanted all along. The rest of us will have to live—and yes, die and suffer—with his legacy and the legacy of these men who would destroy the NIH.
Gregg Gonsalves is public health correspondent for The Nation. Gregg is the codirector of the Global Health Justice Partnership and an associate professor of epidemiology at the Yale School of Public Health.
Copyright c 2024 The Nation. Reprinted with permission. May not be reprinted without permission. Distributed by PARS International Corp.
Founded by abolitionists in 1865, The Nation has chronicled the breadth and depth of political and cultural life, from the debut of the telegraph to the rise of Twitter, serving as a critical, independent, and progressive voice in American journalism.
Please support progressive journalism. Get a digital subscription to The Nation for just $24.95!
Spread the word