The Nation’s Science and Health Agencies Face a Credibility Crisis: Can Their Reputations Be Restored?
This article is part of the magazine, "The Future of Science In America: The Election Issue," co-published by LeapsMag, the Aspen Institute Science & Society Program, and GOOD.
It didn't have to be this way. More than 200,000 Americans dead, seven million infected, with numbers continuing to climb, an economy in shambles with millions out of work, hundreds of thousands of small businesses crushed with most of the country still under lockdown. And all with no end in sight. This catastrophic result is due in large part to the willful disregard of scientific evidence and of muzzling policy experts by the Trump White House, which has spent its entire time in office attacking science.
One of the few weapons we had to combat the spread of Covid-19—wearing face masks—has been politicized by the President, who transformed this simple public health precaution into a first amendment issue to rally his base. Dedicated public health officials like Dr. Anthony Fauci, the highly respected director of the National Institute of Allergies and Infectious Diseases, have received death threats, which have prompted many of them around the country to resign.
Over the summer, the Trump White House pressured the Centers for Disease Control, which is normally in charge of fighting epidemics, to downplay COVID risks among young people and encourage schools to reopen. And in late September, the CDC was forced to pull federal teams who were going door-to-door doing testing surveys in Minnesota because of multiple incidents of threats and abuse. This list goes on and on.
Still, while the Trump administration's COVID failures are the most visible—and deadly—the nation's entire federal science infrastructure has been undermined in ways large and small.
The White House has steadily slashed monies for science—the 2021 budget cuts funding by 10–30% or more for crucial agencies like National Oceanic and Atmospheric Administration (NOAA) and the Environmental Protection Agency (EPA)—and has gutted health and science agencies across the board, including key agencies of the Department of Energy and the Interior, especially in divisions that deal with issues they oppose ideologically like climate change.
Even farmers can't get reliable information about how climate change affects planting seasons because the White House moved the entire staff at the U.S. Department of Agriculture agency who does this research, relocating them from Maryland to Kansas City, Missouri. Many of these scientists couldn't uproot their families and sell their homes, so the division has had to pretty much start over from scratch with a skeleton crew.
More than 1,600 federal scientists left government in the first two years of the Trump Administration, according to data compiled by the Washington Post, and one-fifth of top positions in science are vacant, depriving agencies of the expertise they need to fulfill their vital functions. Industry executives and lobbyists have been installed as gatekeepers—HHS Secretary Alex Azar was previously president of Eli Lilly, and three climate change deniers were appointed to key posts at the National Oceanic and Atmospheric Administration, to cite just a couple of examples. Trump-appointed officials have sidelined, bullied, or even vilified those who dare to speak out, which chills the rigorous debate that is the essential to sound, independent science.
"The CDC needs to be able to speak regularly to the American people to explain what it knows and how it knows it."
Linda Birnbaum knows firsthand what it's like to become a target. The microbiologist recently retired after more than a decade as the director of the National Institute of Environmental Health Sciences, which is the world's largest environmental health organization and the greatest funder of environmental health and toxicology research, a position that often put her agency at odds with the chemical and fossil fuel industry. There was an attempt to get her fired, she says, "because I had the nerve to write that science should be used in making policy. The chemical industry really went after me, and my last two years were not so much fun under this administration. I'd like to believe it was because I was making a difference—if I wasn't, they wouldn't care."
Little wonder that morale at federal agencies is low. "We're very frustrated," says Dr. William Schaffner, a veteran infectious disease specialist and a professor of medicine at the Vanderbilt University School of Medicine in Nashville. "My colleagues within these agencies, the CDC rank and file, are keeping their heads down doing the best they can, and they hope to weather this storm."
The cruel irony is that the United States was once a beacon of scientific innovation. In the heady post World War II years, while Europe lay in ruins, the successful development of penicillin and the atomic bomb—which Americans believed helped vanquish the Axis powers—unleashed a gusher of public money into research, launching an unprecedented era of achievement in American science. Scientists conquered polio, deciphered the genetic code, harnessed the power of the atom, invented lasers, transistors, microchips and computers, sent missions beyond Mars, and landed men on the moon. A once-inconsequential hygiene laboratory was transformed into the colossus the National Institutes of Health has become, which remains today the world's flagship medical research center, unrivaled in size and scope.
At the same time, a tiny public health agency headquartered in Atlanta, which had been in charge of eradicating the malaria outbreaks that plagued impoverished rural areas in the Deep South until the late 1940s, evolved into the Centers for Disease Control and Prevention. The CDC became the world's leader in fighting disease outbreaks, and the agency's crack team of epidemiologists—members of the vaunted Epidemic Intelligence Service—were routinely dispatched to battle global outbreaks of contagions such as Ebola and malaria and help lead the vaccination campaigns to eradicate killers like polio and small pox that have saved millions of lives.
What will it take to rebuild our federal science infrastructure and restore not only the public's confidence but the respect of the world's scientific community? There are some hopeful signs that there is pushback against the current national leadership, and non-profit watchdog groups like the Union of Concerned Scientists have mapped out comprehensive game plans to restore public trust and the integrity of science.
These include methods of protecting science from political manipulation; restoring the oversight role of independent federal advisory committees, whose numbers were decimated by recent executive orders; strengthening scientific agencies that have been starved by budget cuts and staff attrition; and supporting whistleblower protections and allowing scientists to do their jobs without political meddling to restore integrity to the process. And this isn't just a problem at the CDC. A survey of 1,600 EPA scientists revealed that more than half had been victims of political interference and were pressured to skew their findings, according to research released in April by the Union of Concerned Scientists.
"Federal agencies are staffed by dedicated professionals," says Andrew Rosenberg, director of the Center for Science and Democracy at the Union of Concerned Scientists and a former fisheries biologist for NOAA. "Their job is not to serve the president but the public interest. Inspector generals are continuing to do what they're supposed to, but their findings are not being adhered to. But they need to hold agencies accountable. If an agency has not met its mission or engaged in misconduct, there needs to be real consequences."
On other fronts, last month nine vaccine makers, including Sanofi, Pfizer, and AstraZeneca, took the unprecedented stop of announcing that their COVID-19 vaccines would be thoroughly vetted before they were released. In their implicit refusal to bow to political pressure from the White House to have a vaccine available before the election, their goal was to restore public confidence in vaccine safety, and ensure that enough Americans would consent to have the shot when it was eventually approved so that we'd reach the long-sought holy grail of herd immunity.
"That's why it's really important that all of the decisions need to be made with complete transparency and not taking shortcuts," says Dr. Tom Frieden, president and CEO of Resolve to Save Lives and former director of the CDC during the H1N1, Ebola, and Zika emergencies. "A vaccine is our most important tool, and we can't break that tool by meddling in the science approval process."
In late September, Senate Democrats introduced a new bill to halt political meddling in public health initiatives by the White House. Called Science and Transparency Over Politics Act (STOP), the legislation would create an independent task force to investigate political interference in the federal response to the coronavirus pandemic. "The Trump administration is still pushing the president's political priorities rather than following the science to defeat this virus," Senate Minority Leader Chuck Schumer said in a press release.
To effectively bring the pandemic under control and restore public confidence, the CDC must assume the leadership role in fighting COVID-19. During previous outbreaks, the top federal infectious disease specialists like Drs. Fauci and Frieden would have daily press briefings, and these need to resume. "The CDC needs to be able to speak regularly to the American people to explain what it knows and how it knows it," says Frieden, who cautions that a vaccine won't be a magic bullet. "There is no one thing that is going to make this virus go away. We need to continue to limit indoor exposures, wear masks, and do strategic testing, isolation, and quarantine. We need a comprehensive approach, and not just a vaccine."
We must also appoint competent and trustworthy leaders, says Rosenberg of the Union of Concerned Scientists. Top posts in too many science agencies are now filled by former industry executives and lobbyists with a built-in bias, as well as people lacking relevant scientific experience, many of whom were never properly vetted because of the current administration's penchant for bypassing Congress and appointing "acting" officials. "We've got great career people who have hung in, but in so much of the federal government, they just put in 'acting' people," says Linda Birnbaum. "They need to bring in better, qualified senior leadership."
Open positions need to be filled, too. Federal science agencies have been seriously crippled by staffing attrition, and the Trump Administration instituted a hiring freeze when it first came in. Staffing levels remain at least ten percent down from previous levels, says Birnbaum and in many agencies, like the EPA, "everything has come to a screeching halt, making it difficult to get anything done."
But in the meantime, the critical first step may be at the ballot box in November. Even Scientific American, the esteemed consumer science publication, for the first time in its 175-year history felt "compelled" to endorse a presidential candidate, Joe Biden, because of the enormity of the damage they say Donald Trump has inflicted on scientists, their legal protections, and on the federal science agencies.
"If the current administration continues, the national political leadership will be emboldened and will be even more assertive of their executive prerogatives and less concerned about traditional niceties, leading to further erosion of the activities of many federal agencies," says Vanderbilt's William Schaffner. "But the reality is, if the team is losing, you change the coach. Then agencies really have to buckle down because it will take some time to restore their hard-earned reputations."
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This man spent over 70 years in an iron lung. What he was able to accomplish is amazing.
It’s a sight we don’t normally see these days: A man lying prone in a big, metal tube with his head sticking out of one end. But it wasn’t so long ago that this sight was unfortunately much more common.
In the first half of the 20th century, tens of thousands of people each year were infected by polio—a highly contagious virus that attacks nerves in the spinal cord and brainstem. Many people survived polio, but a small percentage of people who did were left permanently paralyzed from the virus, requiring support to help them breathe. This support, known as an “iron lung,” manually pulled oxygen in and out of a person’s lungs by changing the pressure inside the machine.
Paul Alexander was one of several thousand who were infected and paralyzed by polio in 1952. That year, a polio epidemic swept the United States, forcing businesses to close and polio wards in hospitals all over the country to fill up with sick children. When Paul caught polio in the summer of 1952, doctors urged his parents to let him rest and recover at home, since the hospital in his home suburb of Dallas, Texas was already overrun with polio patients.
Paul rested in bed for a few days with aching limbs and a fever. But his condition quickly got worse. Within a week, Paul could no longer speak or swallow, and his parents rushed him to the local hospital where the doctors performed an emergency procedure to help him breathe. Paul woke from the surgery three days later, and found himself unable to move and lying inside an iron lung in the polio ward, surrounded by rows of other paralyzed children.
Hospitals were commonly filled with polio patients who had been paralyzed by the virus before a vaccine became widely available in 1955. Associated Press
Paul struggled inside the polio ward for the next 18 months, bored and restless and needing to hold his breath when the nurses opened the iron lung to help him bathe. The doctors on the ward frequently told his parents that Paul was going to die.But against all odds, Paul lived. And with help from a physical therapist, Paul was able to thrive—sometimes for small periods outside the iron lung.
The way Paul did this was to practice glossopharyngeal breathing (or as Paul called it, “frog breathing”), where he would trap air in his mouth and force it down his throat and into his lungs by flattening his tongue. This breathing technique, taught to him by his physical therapist, would allow Paul to leave the iron lung for increasing periods of time.
With help from his iron lung (and for small periods of time without it), Paul managed to live a full, happy, and sometimes record-breaking life. At 21, Paul became the first person in Dallas, Texas to graduate high school without attending class in person, owing his success to memorization rather than taking notes. After high school, Paul received a scholarship to Southern Methodist University and pursued his dream of becoming a trial lawyer and successfully represented clients in court.
Paul Alexander, pictured here in his early 20s, mastered a type of breathing technique that allowed him to spend short amounts of time outside his iron lung. Paul Alexander
Paul practiced law in North Texas for more than 30 years, using a modified wheelchair that held his body upright. During his career, Paul even represented members of the biker gang Hells Angels—and became so close with them he was named an honorary member.Throughout his long life, Paul was also able to fly on a plane, visit the beach, adopt a dog, fall in love, and write a memoir using a plastic stick to tap out a draft on a keyboard. In recent years, Paul joined TikTok and became a viral sensation with more than 330,000 followers. In one of his first videos, Paul advocated for vaccination and warned against another polio epidemic.
Paul was reportedly hospitalized with COVID-19 at the end of February and died on March 11th, 2024. He currently holds the Guiness World Record for longest survival inside an iron lung—71 years.
Polio thankfully no longer circulates in the United States, or in most of the world, thanks to vaccines. But Paul continues to serve as a reminder of the importance of vaccination—and the power of the human spirit.
““I’ve got some big dreams. I’m not going to accept from anybody their limitations,” he said in a 2022 interview with CNN. “My life is incredible.”
When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”