On Saturday Francis Collins resigned from the National Institutes of Health (NIH) after directing it for over a decade. His departure, coming on the heels of the expected confirmation of Stanford’s Jay Bhattacharya as his replacement, represents more than the loss of an influential physician-scientist who once led the Human Genome Project and played a central role in the United States’ COVID-19 response. It marks the culmination of a decades-long missed opportunity: despite being the world’s largest funder of biomedical research, the NIH has not built a broad public constituency to protect it from partisan destruction.
In his resignation letter, Collins notes that the institute “is the main piston of a biomedical discovery engine that is the envy of the globe. Yet it is not a household name. It should be.” He singles out two notable discoveries. “When you hear about patients surviving stage 4 cancer because of immunotherapy,” he writes, “that was based on NIH research over many decades.” And “when you hear about sickle-cell disease being cured because of CRISPR gene editing, that was built on many years of research supported by NIH.”
Collins is right, but he fails to mention the fundamental reason many Americans don’t credit the government for these achievements: they only ever learn of NIH’s work from intermediaries—deeply unpopular pharmaceutical or medical device companies—that take credit for NIH science while leveraging it to extract as much money as possible from desperate patients and families. Instead of ensuring that publicly funded discoveries become public goods, the NIH typically funnels its breakthroughs to private industry, where they are transformed into profit-driven commodities and made inaccessible to those—in the United States and around the world—who need them. This way of spurring biomedical innovation and promoting public health is in keeping with decades of neoliberal governance, even when it comes to the boldest initiatives undertaken by recent Democratic administrations. In the public-private partnerships so celebrated by liberal elites, the public has always gotten the short end of the stick.
The result is that for millions of Americans, the NIH and other scientific agencies are simply abstractions—distant bureaucracies rather than vital instruments of the public good. This state of affairs has proved fertile soil for the anti-government agenda Trump is now unleashing. The path forward cannot be simply to defend the pre-Trump status quo; we must go far beyond it.
Collins’s own examples offer a case in point. The two remarkable products of public science he mentions are now sold to patients by private companies for up to $1 million and $3.1 million, respectively. CAR-T therapy, one of several new kinds of cancer immunotherapies, traces its origins to NIH-funded research in the 1990s, yet when pharmaceutical giants Novartis and Gilead brought CAR-T treatments to market in 2017, they priced them at about $500,000 per patient (a “bargain,” they called it), profoundly limiting access and leading to rationing by insurers. Similarly, CRISPR-based gene therapy for sickle cell disease builds on two decades of NIH-backed research, including grants that helped develop the gene-editing techniques used today. But when Vertex Pharmaceuticals and CRISPR Therapeutics secured FDA approval in 2023, they set the price at $2.2 million per patient, ensuring that the communities most affected by sickle cell—African Americans and people in sub-Saharan Africa, for example—would face major barriers to access.
The work behind Moderna’s COVID-19 vaccine and new Ebola vaccines and treatments provides yet further examples of how life-saving innovations are enabled by the NIH, only to then be handed over as patents and licensing agreements to private companies to turn into profits. In Moderna’s case, NIH scientists—Barney Graham, Kizzmekia Corbett, and John Mascola—co-invented the vaccine and held critical patents on its development, but the company refused to recognize their role in key intellectual property claims. Despite receiving nearly $2.5 billion in public funding for research, development, and procurement, Moderna instead retained exclusive rights to manufacture and sell the vaccine, ultimately setting its commercial price at $130 per dose—more than quadruple its earlier federally subsidized price.
Similarly, the NIH collaborated with Merck and Janssen on Ebola vaccines, granting the companies exclusive licenses to manufacture and distribute the resulting products. Two Ebola treatments—mAb114, marketed as Ebanga by Ridgeback, and REGN-EB3, marketed as Inmazeb by Regeneron—were developed with over $750 million in funding from the United States. Despite that massive infusion of public financial support, these pharmaceutical companies retain licenses and patents giving them exclusive control over these treatments. Virtually all doses sit in the U.S. Strategic National Stockpile, largely inaccessible to affected communities abroad during Ebola outbreaks. These arrangements, established through government patent licensing and Cooperative Research and Development Agreements (CRADAs), effectively transfer publicly funded breakthroughs into corporate monopolies, allowing private firms to dictate pricing and access.
To further illustrate why we need change, consider the case of sofosbuvir, a groundbreaking treatment for hepatitis C that cures the disease in about 90 percent of people who take it and comes with few side effects. The NIH played a key role in its development over more than a decade, funding foundational research into nucleotide analogs—compounds that interfere with viral replication—between the late 1990s and early 2000s. This research laid the groundwork for the drug’s mechanism of action, and NIH grants totaling at least $60.9 million helped fund studies on antiviral compounds that ultimately led to sofosbuvir’s discovery.
In 2008, a small biotech firm, Pharmasset, further refined the compound and conducted early-stage trials. In 2011 Gilead Sciences acquired Pharmasset for $11 billion, securing exclusive rights to sofosbuvir. When Gilead launched the drug as Sovaldi in 2013, it priced a twelve-week course at an astronomical $84,000—or $1,000 per pill—despite manufacturing costs of just about $130 per pill. The result? Instead of nearly eliminating hepatitis C, treatment was rationed. Faced with prices that would have broken their budgets, Medicaid programs in Alabama, Iowa, Texas, and other states restricted access, leading to needless suffering, ongoing disease transmission, and countless preventable deaths. Meanwhile, Gilead reaped an estimated $25.8 billion in profit from Sovaldi sales between 2013 and 2018.
This perverse system, privileging financial over medical reasoning and serving the interests not of the public but of insurance and pharmaceutical companies, effectively forces people to get sicker and sicker from a curable disease before they are deemed worthy of treatment. This is the logic of American health capitalism writ large, where prevention and early treatment are systematically neglected while public research and subsidies fuel private profits and associated health care exclusion.
The consequences of the privatization of public medical research are not just economic and medical; they are also cultural and political. This system that causes preventable disease and denies treatment to those who cannot afford it while simultaneously touting itself as a great bastion of public achievement breeds widespread cynicism, nihilism, and resentment toward science, medicine, and the government. Erosion of trust, in turn, creates fertile ground for authoritarianism and for the far right’s destruction of public infrastructure. The ongoing partisan assault on public science is the result of a structural disease of which Trump and his dangerous health officials are more a symptom than simply a cause.
How could we have built public trust in the NIH so as to insulate it from such attacks? Not simply with better messaging or personal efforts to “defend science,” as many leading scientists have hoped, but by building an NIH that ensures publicly funded discoveries become universally accessible treatments rather than corporate monopolies. Imagine if, rather than relying on market-driven delivery built on a capitalist model, the NIH fed its discoveries into a government-owned drug and medical device manufacturer—one designed as public infrastructure to provide treatments to all who need them regardless of ability to pay. This is a long-standing model for drug innovation, development, and manufacturing in many other nations around the world, and it has saved millions of lives.
In Brazil, for example, public labs like Fiocruz and Instituto Butantan produce vaccines, insulin, and other vital medicines at low cost, reducing reliance on multinational firms. Sweden’s state-owned Apotek Produktion & Laboratorier AB ensures stable supplies of essential drugs and meets the needs of patients who the ‘free market’ leaves behind, prioritizing public health over profit. India’s public-sector companies and Thailand’s Government Pharmaceutical Organization likewise improve access to affordable antibiotics, HIV treatments, and more. Even the United States has a history of public manufacturing: during World War II, federal labs helped mass-produce penicillin. These examples show that publicly driven production can lower costs, expand access, and avoid monopolies on life-saving therapies.
Public sentiment around scientific research—and public funding for it—looks very different in such contexts. If Americans saw the NIH as the primary reason they or their loved ones could access cutting-edge cancer treatments without financial ruin, for example, they would likely defend it with the same ferocity that many now reserve for programs like Social Security and Medicare. But as long as the NIH’s greatest triumphs primarily enrich corporations while ordinary people experience them as expensive miracles that remain out of reach no matter how badly their loved ones may need them, there is little reason to expect mass political support for its survival.
These are neither new nor radical arguments—although we could use a good dose of radicalism in the public interest right now to counter the right-wing radicalism currently destroying our public institutions. In January, shortly before Trump’s inauguration, the NIH itself introduced a new Access Planning Policy within its Intramural Research Program, aiming to promote equitable patient access to products derived from NIH-owned patents. This policy would require organizations applying for certain commercial patent licenses to submit access plans detailing strategies to ensure broad public availability of the resulting medical products. It emphasizes flexibility to accommodate diverse biomedical technologies and sought public input to refine its implementation.
During the policy’s draft phase last year, dozens of advocacy organizations provided feedback on ways to make broad access to vital medicines a reality, advocating for binding access conditions, comprehensive access considerations, global access requirements, NIH-led assessments, transparency commitments, extension to extramural programs, and inclusion of relevant third-party intellectual property. One organization, Médecins Sans Frontières (MSF), emphasized that relying solely on companies’ voluntary measures—a position advocated for by influential billionaires like Bill Gates, among others—has repeatedly failed to meet patient needs, underscoring the necessity for more structured and enforceable access strategies.
Yet the Trump administration has jeopardized the NIH’s own important movement toward change. His officials are likely to scrap plans for improving how the NIH operates, instead choosing to simply dismantle and defund the institution rather than make it more effective and more democratic. The very underserved communities that the NIH’s Access Policy was meant to empower are now the ones suffering as critical research priorities for their benefit are being throttled and terminated at the NIH. Last week Robert F. Kennedy Jr. directed the Department of Health and Human Services, which oversees the NIH, to revoke a longstanding policy that mandated public comment before issuing health-related regulations affecting government benefits and grants, including NIH funding. This reversal undermines stakeholder input and poses legal challenges, further distancing public health agencies from the communities they are meant to serve.
The destruction Trump is presiding over creates an important opening to build meaningful support for medicine in the public interest. If Democrats rally to oppose Trump with ambitious alternative visions for public science and care, they will likely have a chance to rebuild the NIH. But when that time comes, we cannot simply return to the old model. Nostalgia for a now-collapsing era in which benefits were hoarded by the wealthy is not an effective way to defend our future.
To make the NIH durable and effective, we must transform it into an institution that genuinely works for the public. That means breaking from the tradition of funding research with public dollars while allowing private companies to monopolize its results. It means imposing price regulations and access agreements on NIH-supported private products. And it means leveraging public investment to directly manufacture and distribute treatments. With such steps, we can make scientific advancements accessible to all and worthy of their political support. Collins calls the NIH “the envy of the globe” because of its groundbreaking research, but the real object of the world’s envy of the world is the life-saving medical treatments those breakthroughs produce. If we want to defend the NIH from those seeking to destroy it, we must make it into an institution whose achievements belong to the public, not to corporations and their shareholders.
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