Last week, the Food and Drug Administration (FDA) approved a small pill called enlicitide. It is a tablet you swallow once a day on an empty stomach with a sip of black coffee, water, or tea. But it does something that until now took a needle and a specialist’s prescription: It lowers the most dangerous kind of cholesterol by nearly 60 percent, about as much as the strongest injectable drugs on the market.
If that sounds less innovative than some of the medical advances I sometimes cover here — there’s no AI or gene editing involved — you’re missing the story. Enlicitide is just the latest example of how medicine has been quietly making progress against the deadliest thing in the modern world.
But today, our enemy is on the retreat. In the US, the age-adjusted death rate from cardiovascular disease has fallen about three-quarters since 1950. In plain terms: A 60-year-old today is roughly four times less likely to die of heart disease this year than a 60-year-old was when Harry Truman was president. As I wrote last year, deaths specifically from heart attacks are down 89 percent since 1970.
That progress comes down to a single number. Low-density lipoprotein, or LDL, aka the “bad” cholesterol your doctor always wants you to lower. Until recently, a high LDL score was all but inescapable, something you could nudge lower with a better diet and willpower but struggle to really fix. What has changed is that we can now lower LDL for nearly anyone who needs it — further, more easily, and earlier in life than before.
A lifesaving genetic mutation
It’s a story that goes back 20 years. In the early 2000s, two geneticists at University of Texas Southwestern, Helen Hobbs and Jonathan Cohen, wanted to solve a medical mystery: Why did some individuals have striking low cholesterol levels? They combed the Dallas Heart Study for an answer. They found a handful — many of them Black Americans — carrying a broken copy of a gene called PCSK9. Their bodies cleared LDL from the blood with unusual efficiency, and the payoff was staggering: carriers of the strongest variant had about 28 percent lower LDL and roughly 88 percent lower risk of heart disease than people who did not carry the mutation.
That finding proved lowering LDL prevents heart attacks, and it handed drugmakers a target: copy that gene. Every PCSK9 drug since — including the new enlicitide — imitates a mutation a few people in Dallas were simply born with.
Millions of Americans still take the old cholesterol-lowering workhorses, statins, and they’ve proven highly effective at reducing heart disease for most people. But not everyone: Some people can’t tolerate the muscle aches; others take them faithfully and still don’t get their LDL low enough. Enlicitide is built for exactly those people: a pill as cholesterol-lowering as an injection but without the needle, and a drug that spares them the statin muscle aches.
Closing the loop
If the pill is today, gene editing is tomorrow — and it may be the answer to a problem no pill can reliably solve: getting people to keep taking their medicine.
About half of patients on statins quit them within a year, and a daily pill, however potent, only helps the people who actually take it. So that demands a fix you can’t forget. A company called Verve Therapeutics, now owned by Eli Lilly, has been testing a treatment that makes a single-letter edit to the PCSK9 gene in the liver — one infusion, in theory for life. In its first human trial, published over the spring in the New England Journal of Medicine, a single dose cut LDL by as much as 62 percent, and held it there for more than a year. Instead of a pill mimicking the effects of the genetic mutation that protected those people in Dallas, gene editing just switches off the gene.
As important as it is, cholesterol isn’t the whole story when it comes to heart disease. There’s smoking, which declined from about 40 percent of US adults in the 1960s to under 15 percent today, sparing countless arteries. High blood pressure — the silent condition that killed President Franklin D. Roosevelt at 63 in 1945, when doctors had few effective ways to treat it — can now be caught early and treated with cheap generic pills.
And then there are the GLP-1s. More than one in 10 US adults say they are currently on an anti-obesity drug, and whatever else you may think of them, they’ll make a significant dent in heart disease. In one major trial semaglutide cut cardiovascular events by 20 percent.
The war continues
Still, the war on heart disease won’t be easy to win.
Just because a pill like enlicitide has been proven to lower a lab value does not mean it’s yet proven to lower deaths. They should — the injectable versions of these drugs cut heart attacks and strokes by about 20 percent in long trials. But enlicitide’s own outcomes study won’t conclude for years.
Precisely because the condition itself so widespread, treatments for heart disease will only be effective if they are equally widespread.
Heart disease is shifting, too. The same research showing heart-attack deaths down 89 percent found deaths from other heart conditions — heart failure, arrhythmias, hypertensive disease — up 81 percent since 1970, though because heart attacks were killing several times as many people, overall heart-disease deaths have still dropped by about two-thirds since 1970. Some of that shift is perversely the result of success: people who might have died of an initial heart attack now live long enough for the heart to wear out in other ways. And some of this is the reverse of progress: As smoking and cholesterol fell, obesity climbed to about 40 percent of US adults, pulling diabetes and high blood pressure with it.
And then there’s perhaps the biggest problem in medicine: access. A 60 percent drop in cholesterol helps only the people who can actually get the drug. Half of patients abandon cheap statins within a year. Enlicitide arrives at about $300 a month with uncertain insurance coverage. The gene edit, whenever it becomes available, will certainly cost far more, and at first will reach only the sickest.
More than 60 percent of US adults are projected to have some form of heart disease over the course of their life. Precisely because the condition itself so widespread, treatments for heart disease will only be effective if they are equally widespread.
Which brings us back to that unassuming little pill. It’s just a tablet, doing what a generation of scientists spent their careers trying to do: turning one of the deadliest numbers in medicine into one you can change. It’s the kind of progress that’s too easy to miss — until it saves your life.
A version of this story originally appeared in the Good News newsletter. Sign up here!
Instead of death being declared because the brain has stopped functioning, in DCD, death is declared after circulation ceases and the heart stops beating. | Miguel Porlan for Vox
Emily Hoffman was walking home from lunch in the Pittsburgh neighborhood of Squirrel Hill in February 2023, when a driver turning left struck her on the crosswalk.
Hoffman was 34. By the time paramedics arrived on the scene, she had gone into a traumatic cardiac arrest. They strapped her onto a machine that delivered automated chest compressions and rushed her to UPMC Presbyterian, a major trauma hospital in Pittsburgh.
Over the next several days, doctors performed multiple surgeries, kept Hoffman on a ventilator, and waited until she was stable enough for an MRI. The scans showed multiple strokes and severe traumatic brain injury. She was alive, but her family understood that she was not going to make a meaningful recovery to a life she would have wanted.
The next Thursday, a week after the crash, Emily’s parents and her sister Beth Hoffman met with the care team and decided to remove ventilator support to allow her to die naturally. Organ donation came up only afterward. Emily was already a registered donor, and Beth knew it was what her sister wanted.
For most of the short history of organ transplantation, Emily would not have been the usual kind of organ donor.
Almost all transplanted organs once came from patients who died in one specific and rare way called brain death, in which the brain has irreversibly stopped functioning, even as machines keep the heart beating and the organs supplied with oxygen. Brain death is extraordinarily rare, but it happens often enough to create a workable — though far from sufficient — supply of life-saving organs.
But Emily was not one of the brain-death donors. Even after the strokes and brain injury, she still had some reflexes. She was dying, but not brain dead.
Her donation followed a different path, one that has transformed American transplantation in the last decade. It is called donation after circulatory death, or DCD. Instead of death being declared because the brain has stopped functioning, in DCD, death is declared after circulation ceases and the heart stops beating. Many more people die this way than by brain death.
Death by circulatory criteria has been legally recognized since the 1980s, but for decades, doctors rarely recovered organs this way, because, once blood stops moving through the body, organs begin to deteriorate within minutes. In recent years, however, new machines and surgical techniques have helped change that, giving doctors the ability to preserve organs outside the body, making DCD far more viable.
Hoffman’s donation is hardly an outlier anymore. In the last decade, DCD has gone from a rare practice to something that now accounts for nearly half of all organ donors who have died in the United States. In 2000, DCD donors supplied just 219 organs (kidneys, livers, lungs, hearts, and pancreas combined) to the transplantation system in the US. In 2025, DCD brought in close to 17,000 organs. (Most transplanted organs, about 85 percent, come from dead donors, though some organs, most often kidneys, can also come from living donors.)
That growth has saved lives, but it has also pushed transplant medicine into an unusually sensitive moment: the time after a family has decided to let their loved one die but before death has actually occurred.
In brain-death donation, a patient has already been declared dead before the possibility of donation is raised with the family. Because most brain-dead donors are on ventilators, with machines supplying oxygenated blood to their organs, transplant teams can take their time with the donation process.
DCD doesn’t offer that same cushion. Because organs deteriorate so quickly after circulation ceases, the work of donation — the testing, matching, surgical teams flying in — has to be set in motion once the family has decided to withdraw life support but before the patient has died.
This is where the tension in DCD begins. The process pushes transplantation into the narrow interval between that decision to let someone die and the moment death occurs. It creates a situation with almost no parallel in medicine: one set of hands caring for the dying, even as another prepares to recover and transplant their organs.
The medical system tries to manage that complexity with a strict procedural sequence. First, hospital doctors and family conclude that no treatment will bring the patient back to a life they would have wanted. Only then, and only from a separate team, does the word donation come up. The firewall is in place so that the need for organs never shapes the decision to let someone die.
“Ethically, you want to make sure that those two are uncoupled,” said Wade Smith, director of the Neurovascular Service at the University of California San Francisco.
But as DCD has scaled up, more weight is put on that narrow interval. What was once a rare event is now routine in hospitals across the country, carried out by teams with different levels of experience and overseen through rules that can vary from one place to another. At the same time, the organizations that handle organ donations are under new federal pressure to acquire and distribute more organs from eligible donors.
DCD has saved thousands of lives by making donations possible from patients who once wouldn’t have been donors. Hoffman’s donation improved several lives at once: Her kidneys went to two men, her liver to a third recipient, and her corneas helped give sight to a nine-month-old baby.
But its growth has also made the fragile period before death more consequential: how families are told, which steps can be taken while the patient is still alive, how consistently hospitals and organ donation teams follow safeguards, and who has the authority to stop the process if something feels wrong.
When DCD was still rare, these questions stayed at the edges of transplantation. Now, they are moving towards its center, as a lifesaving practice becomes a routine part of how Americans die and donate.
Key takeaways
In the past decade, there’s been a boom in the number of organs available for transplantation in the US.
Much of that growth has come from a little-known donation pathway called donation after circulatory death, or DCD.
DCD allows patients who are dying but not brain-dead to donate organs after their life support is withdrawn and their circulation stops.
That boom has raised questions about medicine’s ability to manage the boundary between life and death.
The breakthrough
Modern transplantation is a relatively young field, only about 70 years old. And from the beginning, transplantation has depended on the novel medical achievement of keeping organs functional after a person had been declared dead.
The mechanical ventilator, developed in the 1950s, made that possible. It could keep a body breathing, and its heart beating, even after the brain had stopped for good. That created, for the first time, a situation where patients were deceased by every older measure, even as their organs were still functional.
Surgeons were initially wary of recovering organs, largely because the legal lines between life and death had never been clearly drawn. Then, in 1968, a Harvard committee proposed a definition of brain death. By 1981, a model law gave states the language to recognize two ways of legal death. Your heart and lungs could stop for good (circulatory death) or your entire brain could (brain death). Today, every state recognizes some version of that framework.
With those lines in place, transplant teams could work with more confidence, and brain death turned out to be close to ideal for them. Because a ventilator kept the heart beating and blood moving through the organs, even after death, there was no ticking clock to race against. The hospital staff had time to evaluate the organs, sometimes convince families to donate them, find the right recipients, and bring in surgical teams before recovery began.
The problem was always with the math. Brain death is rare — only about three in 1,000 deaths happen in a way that leaves organs usable for transplant. That puts a hard biological ceiling on how many ideal donors there could ever be.
But demand for the organs had no such ceiling. Nearly a million Americans are diagnosed with heart failure each year, while surgeons performed just 4,636 heart transplants in 2024, after DCD became a widely used part of transplantation, up 81.5 percent from 2013. There are “just not enough organs to go around,” said Ashish Shah, chief of cardiac surgery at Vanderbilt University. The kidney numbers are even bleaker. Over 500,000 people are on dialysis in the US, but only a fraction will ever reach the waiting list, and even among those who do, many will die before receiving a transplant offer, said Dorry Segev, a transplant surgeon and researcher at NYU Langone.
The modern DCD boom grew out of this desperation, presenting the possibility of donation in far more common cases of death that transplantation surgeons had rarely been able to draw on before: catastrophic strokes, car crashes, cardiac arrests, and other injuries that left patients with no meaningful chance of recovery but short of brain death. But with DCD, the clock suddenly became a factor. Once circulation stopped, the organs deteriorated fast, and, in many cases, they were ruined before surgeons could recover them.
Because of those challenges, DCD stayed marginal for decades, at well under a tenth of all donations. Those numbers ultimately spiked because of several things that happened almost simultaneously.
One surprising thing
While reporting this story, I learned that the opioid crisis also expanded America’s supply of donated organs. Many people who died from overdoses in the US were young and otherwise healthy, making their organs suitable for transplant. It’s a grim reminder that transplantation lives in this space between one family’s — or community’s — catastrophe and another’s chance.
The first was technological. New machines, like TransMedics’ Organ Care Systems — which were first used in 2015 in the UK — could keep a recovered organ alive outside the body, pumping it with warm, oxygenated blood instead of packing it in ice, allowing a heart to beat and function as normal inside a box. This meant that even if there was delay in recovering an organ, that damage could be limited, even reversed, once the organ was put in the machine.
Other teams found ways to use machines originally developed to support failing hearts and lungs to restart circulation inside the bodies of donors after death had been declared. Transplant teams in Spain and the UK began adapting that technology before American programs picked it up for DCD hearts around 2019. Both approaches helped extend the time to successfully perform DCD.
“As soon as the results were good, the big American centers took it on,” said John Dimarakis, a cardiac transplant surgeon at the University of Washington.
Policy changes also helped push DCD further. In Hoffman’s case, the donation process was coordinated by CORE, the nonprofit responsible for organ donation in the Pittsburgh region. Organ procurement organizations, or OPOs, cover a particular region in the US, and they work with hospitals in that region to evaluate potential donors, speak with families, arrange testing, and offer organs to transplant centers. There are 54 such OPOs in the US, which are certified and regulated by the Centers for Medicare and Medicaid Services (CMS).
For years, critics argued that OPOs were judged according to weakly defined standards based on numbers they reported themselves, and poor performers were rarely penalized. But in 2020, new federal rules began ranking them against one another, with a mechanism to strip the worst performers of their territory. Facing the threat of losing their monopolies, many OPOs began pursuing harder cases they would’ve earlier passed over, according to Greg Segal, who founded patient advocacy group Organize. A larger share of those more complicated donors were DCD.
Still, no single force explains the speed of DCD’s rise. “Technology plays a big role in it,” said Nader Moazami, a cardiac surgeon at NYU Langone who helped pioneer one of the new techniques. “But it doesn’t explain how suddenly 50 percent of our donors are DCD.” In 2000, there were only 118 DCD donors in the United States. By 2025, there were 8,137. Brain death donation grew over that same period but far more slowly — from 5,867 donors a year to 8,416.
Whatever the mix, it’s clear that DCD has led to more organs, shorter waits, and saved thousands of lives that otherwise would have ended on a list. “People who have been waiting now wait less,” Dimarakis said.
On a chart, it looks like an unambiguous triumph — until you step into a hospital room.
The passage
Beth Hoffman remembers her sister Emily’s last morning. She read aloud an email from Bradley Whitford, Emily’s favorite actor from the TV drama The West Wing, who had written after hearing what had happened. Then, a playlist of Emily’s favorite songs played as the breathing tube came out. Within about 10 minutes, while “For Good” from Wicked filled the room, her sister was gone.
What Beth mostly didn’t see was the second sequence unfolding around her: the referrals, tests, calls, and scheduling that would turn Emily from a dying patient into an organ donor.
Federal rules require every hospital to alert their organ procurement organization whenever a person may be nearing death. The OPO screens those referrals, and most go nowhere. Alexandra Glazier, who runs the OPO that covers most of New England, says hers get about 50,000 such referrals a year. Only 2 or 3 percent turn out to have any medical possibility of donation at all.
Emily was one such possible case for her Pittsburgh hospital’s OPO. The organization had to reach out to her family; explain what DCD would involve; and, then, start the work that had to happen while she was still alive: reviewing her medical history, testing whether her organs could be used, matching them to recipients, and arranging the surgical teams who might fly in to recover them.
Most families never see much of that work, but some do. Smith, the UCSF neurologist, watched a family agree to withdraw life support and donate, set a time, and gather relatives for a final goodbye, only to learn that the withdrawal had to wait because the OPO still needed more tests. Some families, after being told their dying relative must stay on machines longer for donation’s sake, walk away.
For the Hoffmans, things proceeded more quietly. When the time came, Emily was wheeled into the operating room, and the breathing tube was removed there. The surgeons who would recover her organs were kept away from the withdrawal and death declaration. They often fly in from their own hospitals — sometimes several at once for different organs — but they’re walled off from everything that comes before. “We are not involved in that process,” said Dimarakis, the cardiac transplant surgeon at the University of Washington, “because it’s not ethical for us to be involved.”
That separation is the line DCD depends on. One team cares for the dying patient, withdraws support, and declares death. The other waits outside that decision and recovers the organs only after. The OPO stands between them, coordinating the donation without letting the firewall be breached.
Then comes the waiting. Once the ventilator is out, the clock starts ticking. If the heart doesn’t stop within a window — often about two hours — the organ recovery may be called off, and the patient is returned to end-of-life care. But when circulation does stop, as it did for Emily, the team counts exactly five more minutes to make sure it won’t restart on its own. Only then can a hospital physician declare death, and only then can the transplant surgeons begin.
DCD rests on a simple promise: The need for organs never causes the death. The death is already coming, and donation only changes what can come from it.
But a new frontier in DCD complicates that promise.
The reversal
Normally, after death is declared, most DCD organs are removed and preserved outside the body, either on ice or on machines that circulate oxygenated fluid or blood. The goal is to slow the damage that begins the moment circulation stops.
Then, around the mid-2010s, transplant teams in Spain and the UK began using a newer technique that restores circulation inside the dead donor’s body, before the organs are removed. It’s called normothermic regional perfusion, or NRP.
In one version of NRP, called abdominal NRP, blood is meant to be restored only below the diaphragm to preserve organs such as the kidneys and liver. In a more controversial version called thoracoabdominal NRP, it runs through the chest, as well, and the heart starts beating again.
For the transplant team, especially heart surgeons, the appeal is clear. Kidneys and livers can survive a stretch without circulation, but a heart is harder to preserve. Once it has stopped, there’s no easy way to know whether it will beat reliably again. NRP helps answer that question by restarting it inside the donor’s body after death has been declared, where surgeons can watch it work before deciding whether to recover it.
Shah, the Vanderbilt cardiac surgeon, says the technique lets doctors take hearts from donors who otherwise would not be able to yield a workable one.
But this kind of NRP is unsettling for the very reason that it is useful. If a death is declared because the heart has stopped, what does it mean to start it again inside a donor’s body, often only minutes later? Is that still death? Or something else?
The controversy isn’t simply that the heart beats again. A beating heart is not, by itself, the same as a living person. The heart of a brain-dead patient can beat, too, can be kept going by machines, and that doesn’t mean the person is alive. The deeper concern is whether restored circulation in the body could reach the brain, which could potentially restore consciousness.
To prevent blood from reaching the brain, surgeons clamp or cut the vessels that carry blood to the head before circulation is restored. That distinction is central to the defense of NRP, and it lets surgeons say they are restoring circulation and restarting the heart, not the person.
But those safeguards haven’t always worked. In a safety notice last November, the Organ Procurement & Transplantation Network (OPTN), the federal system that oversees transplant policy and data, said it had received “verified reports” that blood had unintentionally reached the brain and brainstem during NRP. Such events are extremely rare, the notice said, but can occur when a clamp fails or blood reaches the head through an unrecognized route. The notice asked transplant programs using either form of NRP to strengthen their safeguards and report any failures. But those recommendations were not national requirements and as of May 2026, the OPTN was still developing formal standards for NRP. For Claire Morgan, a transplant surgeon from North Carolina who has criticized NRP’s rollout, that is a central weakness. “It’s a bulletin. It’s not a policy,” she said. “There’s no punishment for not reporting.”
But even if blood never reaches the brain, NRP can still introduce deeper ambiguity into our understanding of circulatory death. In the first few minutes after a heart stops, it can often be brought back, an event that happens every day in a busy emergency department. In conventional DCD, however, doctors don’t try to restart the heart, because a patient or family has already decided against being revived. It is that decision, not just the stopped heart itself, that turns the moment into a death. The same goes for anyone who dies under a do-not-resuscitate order.
NRP puts pressure on that logic. The circulation declared permanently gone is deliberately brought back. “There’s a misalignment between NRP practices and the legal standard for how death is defined,” said Glazier. You cannot, critics argue, pronounce someone dead because the circulation will never return — and then return it.
Robert Truog, professor of Medical Ethics, Anaesthesia, & Pediatrics at Harvard Medical School, supports NRP but thinks the possibility of blood returning to the brain is the issue that matters most. “The only questions are, is there a risk of pain or suffering in the procurement of the organs?” he said. And there’s a possibility of that if the circulation is restarted in the brain.
None of this is settled, which is why some hospitals refuse to perform NRP at all. Moazami pioneered the NRP heart technique in the US and practices it at NYU Langone. “But you cannot do it at Columbia,” he said, “just five miles away.” Glazier’s OPO, one of the country’s largest, said her organization has done roughly 650 NRP cases since adopting the practice — but only the abdominal kind, holding off on the heart version until the national protocols are better standardized.
Claire Morgan, a transplant surgeon from North Carolina who has criticized the rollout of NRP, is more worried about what happens if something goes wrong. The donor cannot complain, families may never know if there was a concern, and clinicians who speak up may have limited protection if they challenge what happened in the operating room.
All of that matters, because NRP is already far from marginal. The Organ Procurement & Transplantation Network (OPTN), the federal system that oversees transplant policy and data, only began collecting data on whether NRP was used in a DCD recovery in October 2025. In the first five months of that reporting, from October 1, 2025, through February 28, 2026, 3,463 DCD donors were recovered nationally, according to data shared by the OPTN with Vox. More than half of those involved NRP; though, OPTN doesn’t collect data on which kind.
Vox’s analysis also found that NRP cases were concentrated among some organ procurement organizations. The top 10 OPOs accounted for 47 percent of all DCD recoveries that used NRP.
The patchwork
The core safeguard in DCD — that the decision to withdraw life support must come before questions about donation — is widely accepted. But many of the details around that sequence that shape a family’s experience, or a patient’s protection, are still handled differently from hospital to hospital, OPO to OPO.
“The entire process of DCD or donor withdrawal is not very standardized across the United States or even within states, even within different hospitals in the same city,” Moazami said.
That can mean differences in what families are told about the donation process, what medications are considered appropriate before death, whether NRP is allowed and how it is performed, and who has the clear authority to pause or stop the process if someone believes something is wrong.
That unevenness matters more now, because the transplant system has been trying, with good reason, to recover more organs. For years, many in the field, and those who depended on it, argued that the organ procurement organizations were leaving transplantable organs on the table. Greg Segal, whose advocacy group Organize helped push for stronger OPO accountability, compared the old system to a canvassing campaign where you only knock on the easiest doors. “The problem with OPOs is they were only doing the much easier ones,” he said.
A 2020 rule from the Centers for Medicare & Medicaid Services, the federal agency that oversees OPOs, was meant to change that. It ranked OPOs against one another and created a path to penalize low performers by stripping them of their territories. That policy appears to have had some impact, but it is hard to separate from other forces driving DCD’s rise including new preservation technology, like NRP and broader clinical adoption. Jeffrey Trageser and Charles Strom from the Association of Organ Procurement Organizations, the trade group that represents OPOs, argued that the metrics are too broad, evaluating OPOs partly on whether transplant centers ultimately accept organs and not fully accounting for regional differences such as age of potential donors, local rates of cancer, or how far organs must travel to reach transplant centers.
This pressure to recover more organs has also made some OPOs seem more aggressive to the clinicians working besides them. “Some people view them as vultures, which is horrible,” said Smith, the UCSF neurologist who has experienced the tension from the hospital side. “They’re trying to do their job.” Still, he added, “when you impose that [pressure], then it changes how aggressive they are.”
Both things can be true. The old system needed pressure to perform better. And pressure can create risks, or perceived risks, in a process that depends on careful judgement around a dying patient.
And the safety question isn’t a theoretical concern either. A March 2025 investigation from the Health Resources and Services Administration (HRSA), the federal agency that oversees the national transplant system, documented what can happen when those safeguards fail. In a review of attempted DCD cases at Kentucky Organ Donor Affiliates, an OPO that covered Kentucky and parts of Ohio and West Virginia, HRSA found recurring problems about staff missing vital signs in patients that raised concerns, failed to work collaboratively with hospital medical teams, failed to respect family decision-making, and documented medical data poorly. HRSA said the pattern suggested “organizational dysfunction” and a weak safety culture.
One OPO’s failure does not prove that DCD is broadly unsafe or that OPOs across the country behave the same way. But the Kentucky review showed how badly things can go when the line between patient care and organ recovery is not honored.
Since then, federal officials have been trying to close some of the gaps. HRSA has pushed for clearer family education around DCD and more standardized reporting on ventilated patients referred to OPOs, as well as opened up a reporting channel that sends misconduct concerns directly to HRSA. In a separate case, the Department of Health and Human Services also moved to shut down an OPO in South Florida after finding unsafe practices, underperformance, and paperwork errors.
Organ donation is a touchy subject, because it relies so much on the goodwill and the trust of the people who agree to give their organs so they can live on in others. But the procedural issues also matter, because there are lives at stake on both sides of the process.
Around 13 people die each day in the US waiting for organs. In that desperate landscape, the rise in DCD has led to many lives saved and helped several more live better, fuller lives. The dearth of organs even compelled my former Future Perfect colleague Dylan Matthews to sign up as a living donor and donate his kidney to a complete stranger. (You can read his story here).
And the value of the donation is not just measured in recipients saved. For the Hoffmans, the knowledge that Emily’s organs helped others offered a solace they had not expected. Emily “gave the gift of life in her death,” Beth told me.
That is the highest ideal organ donation — and DCD – can achieve: a death already coming that still changes the lives of others in need. The case for DCD is clear, but its future depends on its proponents’ ability to protect both patients and public trust.
Clarification, July 1, 6 pm ET: A previous version of this post described how the NRP process intends to stop blood from reaching the brain, but did not acknowledge cases where that does not go according to plan. The post has been updated to include a safety notice from the Organ Procurement & Transplantation Network, which said it had received “verified reports” that blood had unintentionally reached the brain and brainstem during NRP. The post has also been updated to clarify that Dorry Segev and Nader Moazami are doctors at NYU Langone.
The skyline of Lower Manhattan is reflected on the top of a monument as wildfire smoke from Canada shrouds the sunrise in New York City on July 18, 2026, as seen from Jersey City, New Jersey. | Gary Hershorn/Getty Images
In 2019, the AI researcher Rich Sutton published a short essay called “The Bitter Lesson.” Seventy years of AI research, he argued, kept demonstrating the same thing: The most effective ways to train AI rely on raw, brute-force computing power — simply scaling up — rather than clever approaches built on human insight. It didn’t matter how elegant the researchers’ work was. More compute would win every time. It’s a bitter lesson because, well, no one wants to accept that even the best efforts can go unrewarded.
This summer, climate change has been teaching its own kind of bitter lesson. Last week smoke from out-of-control Canadian wildfires reached more than 120 million Americans, sending out air quality alerts across 18-plus states from Minnesota to Virginia. Those wildfires, which were made more likely by the effects of climate change, followed record-breaking heat waves in Europe that contributed to the deaths of thousands of people.
Disasters like these inevitably renew calls for climate action, but no current US emissions policy, no amount of carbon cutting now, could clear the air, just as nothing Europe has done on climate — and it has done more than any other region, at no small cost — could protect it from those killer temperatures. Not this summer, not this decade, not the one after. The steps countries take now to reduce carbon emissions, to mitigate climate change, will not protect them from the present-day effects of climate change.
That’s the bitter lesson of climate change, and 2026 is the summer it has become unignorable. The dangerous effects we’ve been warned about are here, locked in on every timescale that matters to the people living through them. We can’t prevent the worst from happening right now, so we need to figure out how we’re going to adapt to it.
The smoke we can’t stop
Canadian wildfire smoke is as close to an unstoppable disaster as exists today. The fires are Canada’s, the ignition is mostly lightning, the fuel is a subcontinent of boreal forest no fire agency can manage, and the whole system sits outside US jurisdiction. While strategies like prescribed burning and forest thinning can help reduce the wildfires that crop up in the western US, the sheer scale of Canadian forests makes such management far more difficult, maybe impossible. There is no timescale on which American mitigation clears American air of Canadian wildfire smoke.
What this means is that for this wildfire smoke, at this moment, adaptation may be all there is.
American law has already conceded the point. Under the Clean Air Act’s Exceptional Events Rule, a state can petition the Environmental Protection Agency to strike wildfire-smoke days from the record used to judge whether its air is legally clean. In other words, the official response to one of the country’s fastest-growing air-quality threats is to delete it from the ledger.
It’s true that climate attribution science ties heat waves to warming with the highest confidence of any extreme, while wildfire is messier — a compound event filtered through ignition, fuel, and fire weather. But fire seasons are lengthening, fuels are drying, and the most extreme wildfire events on Earth more than doubled between 2003 and 2023. The pattern is intensifying fire in particular regions — the boreal north among them — and the smoke goes where the wind says.
And that smoke is worse than it looks. Wildfire PM2.5 — the microscopic particles that are particularly dangerous — is roughly three to four times more toxic to the lungs, per unit of mass, than ordinary urban particulate matter. During major smoke events, pediatric asthma visits can spike by more than 30 percent, and Harvard researchers have found the cardiorespiratory damage persists for months after the sky turns blue again. That’s especially dangerous for vulnerable populations like babies and pregnant women.
We can’t affect the winds, we struggle to stop the fires, and any current attempt to reduce warming enough to make those infernos less likely won’t be felt for years. But that doesn’t mean we’re helpless to protect ourselves from wildfire smoke, any more than we are from extreme heat.
For heat, the toolkit is even better known — and one of the best proofs it works is in, of all places, France. The historic 2003 heat wave killed some 15,000 people there, most of them elderly and alone. The national heat plan built in its aftermath — tiered alerts, registries of vulnerable residents, check-in calls, cool rooms — cut the death toll of comparable heat waves by roughly 90 percent: When France hit its all-time record of 114.8°F in 2019, fewer than 1,500 died, per the Christian Science Monitor. A recent European analysis estimates a rerun of 2003 would now kill 77 percent fewer people in France than in a world that never adapted.
So technologies exist to protect ourselves. What’s too often missing are the standards, money, and the drive to deploy protection before the disaster arrives instead of after.
Catching up to today
When it comes to wildfire smoke, some governments are ahead of the game — and some aren’t. Washington state, Oregon, and California now regulate outdoor workers’ smoke exposure by air-quality index, under rules like Cal/OSHA’s wildfire-smoke standard; California funds “clean air centers” with upgraded filtration where people can shelter on bad-air days; Colorado’s Clean Air for Schools program ships free HEPA units to K-12 classrooms. A purifier humming in a classroom is essentially doing for smoke what a cooling center does for heat.
When it comes to heat, some parts of Europe are catching up. Barcelona now runs a network of nearly 400 “climate shelters” — libraries, museums, retrofitted schoolyards — with the goal of putting one within a 10-minute walk of every resident. For the first time, the city is keeping libraries open through August to do it, which, as anyone who has visited Europe in the late summer knows, is no small thing.
So adaptation exists, and it is saving lives. But this summer has also shown what happens when cities, states, and countries aren’t ready.
In the US, the Midwestern and Northeastern states that spent last week under smoke alerts have almost none of the protections against wildfire smoke that have become more common in Western states, and no one is required to build them, because the country has no enforceable national indoor air-quality standard at all. In Europe, national heat plans are still reluctant to reach for the most powerful tool on the shelf. About one European household in five has air conditioning, compared to nearly nine in ten in the US, in large part because much of the continent still treats the machine as a moral defect.
In both cases, rich regions that have largely taken climate mitigation more seriously than some of their neighbors aren’t pursuing adaptations they need. Which really means not taking climate change as seriously as they should.
Accepting the bitter lesson
For a generation, adaptation was the word climate advocates were often reluctant to say out loud. In his 1992 book Earth in the Balance, Al Gore called adaptation “a kind of laziness, an arrogant faith in our ability to react in time to save our skins.” (He later changed his mind.) And in fairness, “we’ll just adapt” has often been a delaying tactic, an easy out for polluters.
But the ground has shifted under that caution, because the projections did exactly what projections are supposed to do: they came true.
Longer fire seasons, deadlier heat waves, smoke reaching places that never used to see it — this summer is the confirmation. And that changes what seriousness requires.If you’ve spent decades warning people that the effects of climate change are coming, you can’t treat readying for those effects as a distraction from the real work. None of this argues for easing up on emissions — each ton that isn’t emitted is adaptation nobody has to build. But preparing for what you predicted is what believing your own prediction looks like.
For AI researchers, Rich Sutton’s lesson was bitter for a specific reason. Those who resisted its conclusion weren’t foolish; they resisted it because it seemed to undercut all their hard work. They resisted it because it didn’t seem fair, just as it’s not fair that countries and states that have in many ways done much to mitigate climate change find themselves just as vulnerable, if not more so, than peers that have done comparatively little.
But here’s the other half of Sutton’s lesson: The researchers who accepted it won. They stopped defending their cleverness and built what worked. That option is open to climate politics too. The atmosphere isn’t fair, but it is consistent, and it will deliver next summer’s version of this one on schedule. We can be ready. The bitter lesson is only bitter until you have the will to act on it.
In January 2025, Linda-Gail Bekker stood inside a vaccine manufacturing plant and allowed herself to believe that the first HIV vaccine candidate conceived through African science and led by Africans might finally become a reality.
Key takeaways
HIV has stubbornly resisted prevention via a vaccine. But in mRNA, scientists think they have finally found a technology to develop one.
mRNA, which was used for the successful Covid vaccines, is a way to agilely iterate and develop new candidate vaccines quickly.
Funding for HIV research has been yanked away by the Trump administration, and mRNA vaccines have faced political scrutiny, all threatening this breakthrough.
No virus has proved more evasive. Hundreds of HIV vaccines have entered testing; none has succeeded at providing durable protection against infection. And the need remains vast: In 2025, roughly 1.2 million new HIV infections were reported; anti-retroviral treatments have turned it into more of a survivable disease, but more than half a million people died from AIDS-related causes the same year. There is still no known cure.
So researchers like Bekker, an infectious disease specialist at the University of Cape Town, have more hope now, in part because there is finally a clearer idea of what an effective vaccine needs to do. It must coax the immune system into producing a particular type of protective antibody, a rare class of defender, capable of recognizing and disabling HIV despite the virus’s extraordinary diversity and rapid ability to mutate.
No one yet knows how to reliably do that. But mRNA is uniquely suited to the task of finding out, vaccinologists say. Thanks to the platform’s speed and flexibility, researchers can iterate rapidly through the otherwise laborious process of designing, testing, and refining the series of vaccine components needed to guide the body toward making those essential antibodies.
At the start of last year, Bekker and her colleagues were ready to put that strategy to the test. The clinical trial for their new mRNA-based HIV vaccine was just on the verge of enrolling its first participants. But the project depended on the same backing that had sustained HIV vaccine research for decades: US government funding. Washington had long supplied roughly 90 percent of the world’s investment in the field. Then President Donald Trump returned to office.
Within hours of his inauguration, Trump signed an executive order freezing foreign aid. The $45 million contract from the US Agency for International Development (USAID) that was supposed to fund clinical trials like Bekker’s disappeared, as did a web of other funds, many routed through the National Institutes of Health (NIH), that had helped fuel the field’s progress for years.
The timing could hardly be more cruel. After 40-odd years of chasing a shape-shifting foe, scientists believe they now know what kind of immune response an HIV vaccine must generate — and have in mRNA a powerful new tool for pursuing it. But just as many researchers have finally glimpsed a path to victory, the United States and much of the funding has pulled away from the fight.
Pushing the envelope
From the outset, the target for preventing HIV was clear. Within a year of identifying the virus as the cause of AIDS in 1983, researchers had zeroed in on its envelope protein as the most promising point of attack for a vaccine.
Protruding from the virus’s surface in knobby clusters, the envelope protein acts like a molecular grappling hook, latching onto immune cells before pulling the virus itself inside. Without this feature, HIV cannot infect a cell.
Much as the coronavirus spike protein would later become the basis for Covid vaccines, this protein on the surface of HIV seemed an obvious bullseye. But identifying the target didn’t mean researchers could hit it. Most of what the immune system sees of the envelope protein is actually just a decoy. The parts that stick out and draw the strongest immune response are also its most changeable, differing from one strain to the next and mutating freely whenever antibodies close in, leaving the body to waste its firepower on a target that keeps slipping away.
Candidate vaccines kept making the same mistake. They would elicit plenty of antibodies, but not the kind that could keep up with the virus. Time and again, promising candidate vaccines generated excitement in the laboratory, only to come up empty when it mattered most in large-scale clinical testing.
The field’s fortunes started to change in the late 2000s when researchers began studying the small fraction of people living with HIV who developed antibodies capable of recognizing the virus’s concealed, conserved features. Though these hard-won antibodies came too late to protect their makers, they gave scientists a molecular blueprint for the defenses a vaccine would need to build.
As the field came to learn, these “broadly neutralizing antibodies” do not appear overnight but rather after years of battle with the virus.
The challenge, then, was to design a vaccine that would not just trigger an immune response but guide a person’s immune system through the same evolutionary journey. This would require a succession of vaccine components to prompt a carefully choreographed process within the body, rather than the single, fixed target that suffices for shots against measles or hepatitis B.
It was a strategy rooted in rational design but dependent on trial and error. Progress would come through a steady stream of small proof-of-concept studies, each informing the next generation of vaccine candidates. Ordinarily, it would take at least a year — often longer — to manufacture and prepare each vaccine iteration before it could be tested in people.
But then the Covid pandemic rocketed mRNA into the spotlight.
The mRNA advantage
mRNA technology upends the old recipe of vaccine development. Conventional shots work by showing the immune system a mugshot of the enemy: a killed or weakened germ, or one of its proteins, grown batch by batch in vats of cells or eggs. An mRNA vaccine takes a different route. Rather than supplying the mugshot, it supplies the instructions to draw one: a short, lab-printed strip of messenger RNA, the molecule cells normally use to ferry genetic directions from DNA to their protein-making machinery.
Inject the right sequence, and it will program the body’s own cells to become tiny factories, producing the target protein and presenting it to the immune system as if it were the real intruder. Because it is all just code, refining a design means editing text, not rebuilding a factory — the work of days, not months.
“We’ve been able to design vaccines in real time,” said University of Pennsylvania Perelman School of Medicine assistant professor Ted Kreider, who is a specialist in infectious diseases.
To HIV researchers, the appeal was obvious. HIV’s greatest weapon was its ability to shift and adapt. Now, at last, a vaccine could, too.
The timing was ideal. Just as researchers were beginning to map the path to an effective vaccine, mRNA offered a way to move down that path at speed. With vaccine designs no longer bottlenecked by design and manufacturing, what once might have taken decades of stepwise vaccine development could, thanks to mRNA, be compressed into years.
Across a growing number of clinical trials, researchers are now testing different vaccine components, different sequences, and different delivery platforms, searching for the combination that most effectively nudges the immune system toward a truly HIV-thwarting response.
A paper published last month in Nature offered one such path forward, showing in monkeys that a painstaking sequence of eight shots could coax the immune system into producing potent antibodies capable of neutralizing a broad range of HIV strains. But even the study’s authors see a catch. “It’s still too many [shots] to be practical in humans,” said Dennis Burton, a professor of immunology and microbiology at Scripps Research who worked on the project.
Whether mRNA ultimately becomes the vaccine itself — or simply the tool that helps researchers discover it — remains an open question.
The fundamental challenge for now, after all, is vaccine design, notes Mark Feinberg, president and CEO of IAVI, a nonprofit research organization focused on developing vaccines against HIV. And for that task, he says, “the most obvious advantage of mRNA is simply the speed of getting an idea from the laboratory to the clinic.”
But if the technology reaches the finish line, researchers say it could offer other advantages as well. Because the protein is made inside the body’s own cells rather than in a lab, it folds and displays itself much as it would on the real virus, giving the immune system a more faithful target to train against. That way, when the real virus arrives, the body already knows its true face.
It also gives vaccine designers an unusual number of knobs to turn, notes Kristie Bloom, an mRNA vaccine researcher and molecular biologist at the University of Witwatersrand in South Africa. By altering the vaccine’s formulation, dose, or genetic design, researchers can shape not just the magnitude of the immune response but also its balance: favoring antibody-producing B cells, virus-killing T cells, or some mix of the two.
With mRNA, “there’s quite a bit of flexibility,” she said.
Not so fast
For all the putative upsides, however, mRNA does carry some baggage. There are concerns about public acceptance given the intense backlash and misinformation campaigns that followed the rollout of Covid-19 vaccines. And though those shots ultimately proved remarkably safe, with very low rates of serious side effects, a peculiar skin problem has emerged in early-stage trials of mRNA vaccine candidates for HIV specifically.
In two separate trials reported last year, around one in 12 participants who received mRNA-based HIV vaccines manufactured by Moderna developed chronic urticaria, a form of persistent hives that in some cases endured for years. The vaccines encoded different portions of HIV’s envelope protein, yet both produced the same unexpected side effect.
The fact that the reactions appeared across distinct vaccine designs — but never before in Moderna’s other mRNA vaccine programs — has fueled suspicion that something about HIV’s envelope protein itself may be involved. Even so, no clear explanation has emerged.
“We’ve ruled a bunch of things out,” said William Schief, a professor at Scripps Research’s department of immunology and microbiology who doubles as vice president for protein design at Moderna, “but there’s no smoking gun.”
Schief is continuing to investigate the source of the immune reactions. But not wanting an unresolved safety signal to bring the program to a halt, he and his collaborators have pressed ahead with lower-dose versions of the vaccine, betting that the hives will fade while the desired immune response remains intact.
That strategy is now being evaluated in an IAVI-backed trial led by Bekker in South Africa. Known as IAVI G004, it has yielded encouraging early results. (Unlike the African-developed vaccine whose launch was derailed by the USAID funding freeze, this study is testing a different mRNA vaccine candidate, manufactured by Moderna.)
At the lowest dose tested, just one-tenth of the amount used in the original studies, the hives that had troubled earlier trials never materialized, Bekker said. Her team has since moved on to a somewhat higher dose, seeking the sweet spot between safety and immune potency.
All of these discoveries and challenges along the way have helped map a path forward. “We know what we need to do,” said Barton Haynes, director of the Human Vaccine Institute at the Duke University School of Medicine. The task for them now is to move through the necessary iterations as quickly as the science — and the funding and political landscape — allow.
“A black hole”
When Bekker and her team learned about the sudden funding cut that would halt their African-designed, USAID-funded vaccine study in January 2025, they were already in Tanzania to prepare its launch. They immediately had to stop work on the project, which had been years in the making. “It was like falling into a black hole of depression,” she said.
And the setbacks kept coming. With prominent vaccine critic Robert F. Kennedy Jr. overseeing US health policy, the federal government moved to undermine both vaccine science broadly and mRNA technology in particular.
The NIH, in addition to terminating dozens of smaller HIV-related grants, began winding down its flagship Consortia for HIV/AIDS Vaccine Development (CHAVD) program, which has long served as a cornerstone of global HIV vaccine research, while other federal agencies curtailed support for mRNA vaccine projects across multiple disease areas.
At the same time, South Africa, the continent’s leading center for biomedical research, found itself in the Trump administration’s crosshairs over allegations of anti-white discrimination. New federal research grants were no longer permitted to support collaborations with South African scientists, severing ties that had underpinned years of international HIV research.
“That’s a perfect storm to prevent us from building on the most exciting science HIV vaccines have had in 45 years,” said Mitchell Warren, executive director of AVAC, a nonprofit dedicated to HIV prevention access and policy.
Yet for all the financial and political disruption, the scientific momentum hasn’t stopped. Philanthropic organizations and governments elsewhere have stepped up to help fill the funding gap, allowing key trials to move forward, although in scaled-down forms with more modest ambitions.
The Africa-led effort that Bekker had dreamed of was salvaged, with emergency backing from the South African Medical Research Council, albeit in diminished form and built, in the end, on the same protein-based technology that mRNA was meant to leapfrog.
The only mRNA-based HIV vaccine study that is actually underway in Africa is IAVI G004: a program designed by US scientists, not by locals, and funded largely by the Gates Foundation.
A longtime backer of HIV research, that foundation is estimated to invest around $70 million annually — with $64 million being invested in 2022, and $70 million in 2026 — across a global portfolio of HIV vaccine programs. That’s a substantial sum, though only a fraction of the hundreds of millions of dollars once provided by the NIH, USAID, and other federal agencies.
For now, some of that funding continues to flow. But even what remains is far from assured. The Trump administration’s proposed 2026 budget would slash the National Institute of Allergy and Infectious Diseases — the NIH institute that has long anchored HIV vaccine science — along with the Office of AIDS Research that coordinates HIV research across the entire NIH, leaving the field’s longer-term future in doubt.
“We’re not going to be able to fill the gap that’s been left by the US government,” said Nina Russell, director of TB& HIV research and development at the Gates Foundation. Still, she says, the foundation remains determined to keep the most promising vaccine programs moving forward: “We are super committed to it.”
All of these changes have left the research field daunted, but not hopeless. “It’s been a very disruptive time,” said Burton, who leads one of the CHAVD research hubs. But he remains convinced the field is on the right track. “The pieces of the puzzle are in place,” he said. “It’s obviously been a long, long journey, but you can begin to see the end.”
A higher bar
The funding crisis and political challenges are not the only forces reshaping HIV vaccine development.
For much of the HIV epidemic, which has killed over 40 million people worldwide, even a partially effective vaccine might have been enough to transform the course of HIV. Today, however, vaccine researchers are also competing against long-acting preventive drugs that can protect people for months at a time with just two injections.
These drugs are an enormous step forward for HIV protection, but they also raise the standard the vaccine field must meet, Warren said. “The bar for a licensed vaccine that is going to have a public health impact has gotten much higher,” he said.
But these prophylactic drugs, which began as daily pills and have evolved into long-acting injectables, are only as good as the systems that deliver them. Cost, stigma, and the need for regular clinic visits have limited access in many countries with the highest HIV burdens. A vaccine, by contrast, that provided years of protection after a handful of doses could overcome many of those barriers.
That is precisely why many scientists view the current retreat of the US government with such alarm. After decades of disappointments and billions of dollars in investment, the field finally believes it has a coherent strategy for building an effective HIV vaccine.The fear is that momentum could stall just as researchers have begun to see a path across the finish line. As a result, what once seemed like a scientific problem increasingly looks like a political one.
For Bekker, the current moment feels all too familiar. In the early 2000s, South Africa’s government embraced AIDS denialism, delaying the rollout of lifesaving treatments and forcing researchers and clinicians to battle both the virus and the state. A quarter-century later, she says, the political opponent has merely changed address to Washington, DC, threatening once again to undermine the fight against HIV and cost countless lives.
“When politics interferes in science,” Bekker said, “that is the death of scientific progress.”
Bekker still does not know whether the vaccine she watched being manufactured last year will ever reach the people it was designed to protect. She and her colleagues still hope to carry out the made-in-Africa mRNA vaccine trial they spent years designing — if they can find a way to pay for it. But Bekker remains convinced that the scientific strategy behind it is the right one, and that mRNA may yet do for HIV what it did for Covid-19, rapidly transforming decades of scientific groundwork into an effective shot.
She only hopes politics does not succeed where HIV itself has failed in slowing the field’s progress. “We should only be fighting the virus,” Bekker said. “But we’re fighting the administration and its policies, and that is a waste of our energy.”
The Trump administration’s funding cuts to USAID have stalled global HIV prevention. | Arlette Bashizi/The Washington Post
If the US wanted to be the world’s police officer, then why not try to be its doctor too?
Just two months before the invasion of Iraq in 2003, George W. Bush announced an ambitious plan to pump $15 billion into the global fight against HIV, stunning his allies in Congress, health advocates, and heads of state of the program’s intended beneficiaries.
The President’s Emergency Plan for AIDS Relief, or PEPFAR, was the largest commitment by any nation in history dedicated to addressing a single disease, a disease that killed about 3 million people in 2003, most of them living in sub-Saharan Africa, and infected 5 million more. “Ladies and gentlemen,” Bush proclaimed in his State of the Union address that year, “seldom has history offered a greater opportunity to do so much for so many.”
On that, he was right. In the two decades to follow, PEPFAR would save an astounding 25 million people’s lives through lifesaving HIV therapies, and prevent millions of babies from being born with HIV in the first place, all at a cost of about 0.08 percent of the federal budget.
And yet, in the wake of the Trump administration’s foreign aid cuts, one of the greatest achievements in American history is now at risk. PEPFAR, mercifully, still exists, saved from the sledgehammer by an outpouring of bipartisan support last February. But experts say the program has been transformed beyond recognition by countless small cuts, and the abrupt gutting of global health architecture, reshaped not by decades of accumulated wisdom around HIV prevention, but by at times absurdly petty ideology.
Key takeaways
The Trump administration has severely disrupted the global fight against HIV, with 77 percent of formerly funded health groups losing funding or experiencing payment delays, according to a new survey by amfAR.
Those most at risk of HIV — like young women and LGBTQ people — have been disproportionately affected, in part because of the administration’s war on DEI.
For decades, presidents have pushed aside ideology to maintain funding for vital HIV services, like contraceptives and outreach workers. With President Donald Trump now shifting those norms, the consequences could be catastrophic.
Over the past year, more than 77 percent of PEPFAR grantees have lost funding or had their payments delayed, according to a survey released Tuesday by the HIV research group amfAR.
Nearly two-thirds of grantees — especially those supporting vulnerable populations such as LGBTQ people, young women, and sex workers — said the cuts had disrupted their ability to offer HIV treatments and other services. The Trump administration released limited data showing a deep reduction in HIV prevention services, but a relative consistency in access to treatment earlier this year. However, this new survey paints one of the first pictures available of how PEPFAR cuts are actually being felt on the ground, and how the administration’s priorities are reshaping who and what gets funded.
According to the survey’s authors, at least 1,700 HIV-related sites or clinics have shut down as a result of cuts. Well over 16,000 health workers — including those going door to door to make sure pregnant parents get tested for HIV or children get on treatment — have lost their jobs.
Many organizations surveyed reported receiving emails when their PEPFAR grants were terminated, noting that their work violated President Donald Trump’s executive order against “unlawful diversity, equity, and inclusion.” It appears, they say, that many of these groups were flagged not because they embraced the distinctly American concept of DEI in their work, but because their name or mission description included a phrase like “gender” or “LGBTQ.”
A health clinic serving survivors of domestic violence in Mozambique, for example, might now be flagged just for using the phrase “gender-based violence” in their name. This may be part of the reason why even pregnant women — who even the Trump administration has emphasized as a critical demographic in its HIV goals — have lost access to services.
Back in 2003, Bush defied conservative critics in his own party who attempted to redirect PEPFAR funding to abstinence-only programs. For decades, American presidents have been able to see past their ideology in service of saving lives. They largely understood that contraceptives like condoms and special interventions for those most at risk, including LGBTQ people, were necessary for stopping the spread of HIV. Under the Trump administration, this norm is unraveling.
“This administration has zero interest in addressing clinical outcomes for vulnerable people with HIV,” said Asia Russell, executive director of the advocacy group Health GAP, who noted that “to be effective, HIV prevention and treatment services actually have to go where the disease is, and that risk is not evenly distributed,” surging in certain geographies like South Africa or within key populations like trans people or young women. Getting support to these groups is “morally right,” she said, but it is also “the only way to do effective HIV work, regardless of your stance on the morals or the merits.”
The fight against HIV is running on fumes
When HIV aid does get doled out these days, it is distributed with far less transparency than in the past, and in ways that often appear to be ideologically or politically driven, both in terms of the populations they serve and the countries they operate in, rather than guided by best practices.
In theory, lifesaving HIV care was exempted from sweeping aid cuts last year. But in reality, access to even the most basic HIV services and treatments has also atrophied across the board, while falling disproportionately on at-risk populations.
That’s come both in the form of direct cuts and as a byproduct of broader disruptions to the kind of outreach services, testing, and socioeconomic programs that get patients in the door to begin with.
“You can’t cut pieces of the architecture of how PEPFAR functions and expect to maintain a really robust treatment program in the long term,” said Jennifer Sherwood, director of research and public policy at amfAR. “If you cut the testing program, the prevention programs, the kind of services that allow people to stay in care and return to care, you’re going to see that you can’t maintain a treatment program.”
The number of people getting on treatment for the first time has sharply declined over the past year, even according to the administration’s own limited data drop, while access to testing, contraceptives, and other preventative services — all critical to keeping infections down in the long run — face cuts that threaten their ability to function at all.
To make matters worse, amfAR’s survey shows that services designed for the populations most at risk of HIV — such as sex workers, LGBTQ people, young women, and teenage girls — have been disproportionately affected by PEPFAR cuts. Among those who lost funding, a staggering 90 percent of organizations that serve gay and bisexual men were forced to slash access to PrEP — which strongly protects against HIV infection — and many stopped offering it entirely. The same was true for over half of organizations serving pregnant women, whose children now face a higher risk of contracting HIV in the womb.
The majority of new HIV infections are concentrated in these “key populations,” as they’re known in public health parlance, many of whom face stigma or other obstacles to obtaining care. “One really powerful aspect” of how PEPFAR used to work, said Thomas McHale, public health director at Physicians for Human Rights, was that it consistently “followed the science and followed the epidemiology” to serve “groups that are at the margins of society.” That approach appears to have been thrown out under the new administration, and in at least some cases, actively discouraged.
McHale has been documenting the impact of PEPFAR cuts in South Africa in recent months, and “what we saw was a system under severe stress and strain,” he said. It is one in which a bisexual man stopped taking his HIV medications for weeks because the LGBTQ clinic he used to go to closed. “He just couldn’t bear the stigma of accessing services in a place that’s not meant for him,” according to McHale. Similarly, a young woman was forced to wait in line for 10 hours just to refill her PrEP prescription.
“If we’re not focusing on preventing disease,” McHale said, “it’s just a more expensive and more devastating challenge to address in the future.”
Some countries may soon stop receiving PEPFAR funding altogether
As I’ve written previously, the Trump administration has attempted to remake foreign aid into a dealmaking enterprise, one in which money flows directly through national governments rather than through large, western-led non-governmental organizations or NGOs.
In theory, there are benefits to this approach, because it prioritizes the expertise of local health groups and policymakers who are often best equipped to evaluate and address the needs of those in their care. In practice, however, amfAR’s survey shows that so far, under the Trump administration, local organizations have actually lost more funding and been forced to close more sites than international groups have. “These cuts fell heavily on locally-based organizations” while NGOs have fared somewhat better, said Sherwood, “and that really runs counter to all of our global health goals.”
“I’m concerned because public health is no longer how we’re measuring success” when it comes to reaching PEPFAR’s goals, said Jirair Ratevosian, a senior fellow at the Duke Global Health Institute who served as chief of staff of PEPFAR under the Biden administration. He is especially alarmed by the decision last month to end PEPFAR support for South Africa, which has the largest HIV epidemic in the world. The administration appears to have done so in part because of Trump’s insistence that the nation is waging a nonexistent “genocide” against white Afrikaners.
“If we’re not focused on preventing disease, it’s just a more expensive and more devastating challenge to address in the future.”
Thomas McHale, Physicians for Human Rights
“HIV control is not their chief concern,” said Ratevosian, who recently ran the numbers on a separate fissure with Zimbabwe, finding that cutting PEPFAR would lead to 75,000 new HIV infections in just one year. In South Africa, similar cuts could lead to over 2 million more infections over the next two decades, a toll that would invariably cross borders, and could threaten the world’s immense, hard-won progress against HIV. “You can’t have a global HIV strategy,” said Ratevosian, “if you’re not engaging these countries.”
Priorities shift under any new administration, and it’s not abnormal for an organization to tweak its language or services to adapt. But PEPFAR, the bipartisan program which began under Republican leadership, and thrived and expanded under three successive presidencies, including during Trump’s first term, has never faced such turmoil.
“Even among organizations who didn’t lose US funding, we’re still picking up changes to the way they work, the populations they serve, the words they use,” said Sherwood of amfAR. Her group’s survey showed that nearly 80 percent of organizations that did not lose funding still altered the way their organization worked to comply with new policies. “This network of changes from the US,” she said, “are prompting a lot of changes on the ground.”
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