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."
[Editor's Note: To read other articles in this special magazine issue, visit the beautifully designed e-reader version.]
In December 1958, on a vacation with his wife in Kenya, a 28-year-old British tea broker named Robin Cavendish became suddenly ill. Neither he nor his wife Diana knew it at the time, but Robin's illness would change the course of medical history forever.
Robin was rushed to a nearby hospital in Kenya where the medical staff delivered the crushing news: Robin had contracted polio, and the paralysis creeping up his body was almost certainly permanent. The doctors placed Robin on a ventilator through a tracheotomy in his neck, as the paralysis from his polio infection had rendered him unable to breathe on his own – and going off the average life expectancy at the time, they gave him only three months to live. Robin and Diana (who was pregnant at the time with their first child, Jonathan) flew back to England so he could be admitted to a hospital. They mentally prepared to wait out Robin's final days.
But Robin did something unexpected when he returned to the UK – just one of many things that would astonish doctors over the next several years: He survived. Diana gave birth to Jonathan in February 1959 and continued to visit Robin regularly in the hospital with the baby. Despite doctors warning that he would soon succumb to his illness, Robin kept living.
After a year in the hospital, Diana suggested something radical: She wanted Robin to leave the hospital and live at home in South Oxfordshire for as long as he possibly could, with her as his nurse. At the time, this suggestion was unheard of. People like Robin who depended on machinery to keep them breathing had only ever lived inside hospital walls, as the prevailing belief was that the machinery needed to keep them alive was too complicated for laypeople to operate. But Diana and Robin were up for the challenges – and the risks. Because his ventilator ran on electricity, if the house were to unexpectedly lose power, Diana would either need to restore power quickly or hand-pump air into his lungs to keep him alive.
Robin's wheelchair was not only the first of its kind; it became the model for the respiratory wheelchairs that people still use today.
In an interview as an adult, Jonathan Cavendish reflected on his parents' decision to live outside the hospital on a ventilator: "My father's mantra was quality of life," he explained. "He could have stayed in the hospital, but he didn't think that was as good of a life as he could manage. He would rather be two minutes away from death and living a full life."
After a few years of living at home, however, Robin became tired of being confined to his bed. He longed to sit outside, to visit friends, to travel – but had no way of doing so without his ventilator. So together with his friend Teddy Hall, a professor and engineer at Oxford University, the two collaborated in 1962 to create an entirely new invention: a battery-operated wheelchair prototype with a ventilator built in. With this, Robin could now venture outside the house – and soon the Cavendish family became famous for taking vacations. It was something that, by all accounts, had never been done before by someone who was ventilator-dependent. Robin and Hall also designed a van so that the wheelchair could be plugged in and powered during travel. Jonathan Cavendish later recalled a particular family vacation that nearly ended in disaster when the van broke down outside of Barcelona, Spain:
"My poor old uncle [plugged] my father's chair into the wrong socket," Cavendish later recalled, causing the electricity to short. "There was fire and smoke, and both the van and the chair ground to a halt." Johnathan, who was eight or nine at the time, his mother, and his uncle took turns hand-pumping Robin's ventilator by the roadside for the next thirty-six hours, waiting for Professor Hall to arrive in town and repair the van. Rather than being panicked, the Cavendishes managed to turn the vigil into a party. Townspeople came to greet them, bringing food and music, and a local priest even stopped by to give his blessing.
Robin had become a pioneer, showing the world that a person with severe disabilities could still have mobility, access, and a fuller quality of life than anyone had imagined. His mission, along with Hall's, then became gifting this independence to others like himself. Robin and Hall raised money – first from the Ernest Kleinwort Charitable Trust, and then from the British Department of Health – to fund more ventilator chairs, which were then manufactured by Hall's company, Littlemore Scientific Engineering, and given to fellow patients who wanted to live full lives at home. Robin and Hall used themselves as guinea pigs, testing out different models of the chairs and collaborating with scientists to create other devices for those with disabilities. One invention, called the Possum, allowed paraplegics to control things like the telephone and television set with just a nod of the head. Robin's wheelchair was not only the first of its kind; it became the model for the respiratory wheelchairs that people still use today.
Robin went on to enjoy a long and happy life with his family at their house in South Oxfordshire, surrounded by friends who would later attest to his "down-to-earth" personality, his sense of humor, and his "irresistible" charm. When he died peacefully at his home in 1994 at age 64, he was considered the world's oldest-living person who used a ventilator outside the hospital – breaking yet another barrier for what medical science thought was possible.
Sarah Watts is a health and science writer based in Chicago. Follow her on Twitter at @swattswrites.
In June 2012, Kirstie Ennis was six months into her second deployment to Afghanistan and recently promoted to sergeant. The helicopter gunner and seven others were three hours into a routine mission of combat resupplies and troop transport when their CH-53D helicopter went down hard.
Miraculously, all eight people onboard survived, but Ennis' injuries were many and severe. She had a torn rotator cuff, torn labrum, crushed cervical discs, facial fractures, deep lacerations and traumatic brain injury. Despite a severely fractured ankle, doctors managed to save her foot, for a while at least.
In November 2015, after three years of constant pain and too many surgeries to count, Ennis relented. She elected to undergo a lower leg amputation but only after she completed the 1,000-mile, 72-day Walking with the Wounded journey across the UK.
On Veteran's Day of that year, on the other side of the country, orthopedic surgeon Cato Laurencin announced a moonshot challenge he was setting out to achieve on behalf of wounded warriors like Ennis: the Hartford Engineering A Limb (HEAL) Project.
Laurencin, who is a University of Connecticut professor of chemical, materials and biomedical engineering, teamed up with experts in tissue bioengineering and regenerative medicine from Harvard, Columbia, UC Irvine and SASTRA University in India. Laurencin and his colleagues at the Connecticut Convergence Institute for Translation in Regenerative Engineering made a bold commitment to regenerate an entire limb within 15 years – by the year 2030.
Dr. Cato Laurencin pictured in his office at UConn.
Photo Credit: UConn
Regenerative Engineering -- A Whole New Field
Limb regeneration in humans has been a medical and scientific fascination for decades, with little to show for the effort. However, Laurencin believes that if we are to reach the next level of 21st century medical advances, this puzzle must be solved.
An estimated 185,000 people undergo upper or lower limb amputation every year. Despite the significant advances in electromechanical prosthetics, these individuals still lack the ability to perform complex functions such as sensation for tactile input, normal gait and movement feedback. As far as Laurencin is concerned, the only clinical answer that makes sense is to regenerate a whole functional limb.
Laurencin feels other regeneration efforts were hampered by their siloed research methods with chemists, surgeons, engineers all working separately. Success, he argues, requires a paradigm shift to a trans-disciplinary approach that brings together cutting-edge technologies from disparate fields such as biology, material sciences, physical, chemical and engineering sciences.
As the only surgeon ever inducted into the academies of Science, Medicine and Innovation, Laurencin is uniquely suited for the challenge. He is regarded as the founder of Regenerative Engineering, defined as the convergence of advanced materials sciences, stem cell sciences, physics, developmental biology and clinical translation for the regeneration of complex tissues and organ systems.
But none of this is achievable without early clinician participation across scientific fields to develop new technologies and a deeper understanding of how to harness the body's innate regenerative capabilities. "When I perform a surgical procedure or something is torn or needs to be repaired, I count on the body being involved in regenerating tissue," he says. "So, understanding how the body works to regenerate itself and harnessing that ability is an important factor for the regeneration process."
The Birth of the Vision
Laurencin's passion for regeneration began when he was a sports medicine fellow at Cornell University Medical Center in the early 1990s. There he saw a significant number of injuries to the anterior cruciate ligament (ACL), the major ligament that stabilizes the knee. He believed he could develop a better way to address those injuries using biomaterials to regenerate the ligament. He sketched out a preliminary drawing on a napkin one night over dinner. He has spent the next 30 years regenerating tissues, including the patented L-C ligament.
As chair of Orthopaedic Surgery at the University of Virginia during the peak of the wars in Iraq and Afghanistan, Laurencin treated military personnel who survived because of improved helmets, body armor and battlefield medicine but were left with more devastating injuries, including traumatic brain injuries and limb loss.
"I was so honored to care for them and I so admired their steadfast courage that I became determined to do something big for them," says Laurencin.
When he tells people about his plans to regrow a limb, he gets a lot of eye rolls, which he finds amusing but not discouraging. Growing bone cells was relatively new when he was first focused on regenerating bone in 1987 at MIT; in 2007 he was well on his way to regenerating ligaments at UVA when many still doubted that ligaments could even be reconstructed. He and his team have already regenerated torn rotator cuff tendons and ACL ligaments using a nano-textured fabric seeded with stem cells.
Even as a finalist for the $4 million NIH Pioneer Award for high-risk/high-reward research, he faced a skeptical scientific audience in 2014. "They said, 'Well what do you plan to do?' I said 'I plan to regenerate a whole limb in people.' There was a lot of incredulousness. They stared at me and asked a lot of questions. About three days later, I received probably the best score I've ever gotten on an NIH grant."
In the Thick of the Science
Humans are born with regenerative abilities--two-year-olds have regrown fingertips--but lose that ability with age. Salamanders are the only vertebrates that can regenerate lost body parts as adults; axolotl, the rare Mexican salamander, can grow extra limbs.
The axolotl is important as a model organism because it is a four-footed vertebrate with a similar body plan to humans. Mapping the axolotl genome in 2018 enhanced scientists' genetic understanding of their evolution, development, and regeneration. Being easy to breed in captivity allowed the HEAL team to closely study these amphibians and discover a new cell type they believe may shed light on how to mimic the process in humans.
"Whenever limb regeneration takes place in the salamander, there is a huge amount of something called heparan sulfate around that area," explains Laurencin. "We thought, 'What if this heparan sulfate is the key ingredient to allowing regeneration to take place?' We found these groups of cells that were interspersed in tissues during the time of regeneration that seemed to have connections to each other that expressed this heparan sulfate."
Called GRID (Groups that are Regenerative, Interspersed and Dendritic), these cells were also recently discovered in mice. While GRID cells don't regenerate as well in mice as in salamanders, finding them in mammals was significant.
"If they're found in mice. we might be able to find these in humans in some form," Laurencin says. "We think maybe it will help us figure out regeneration or we can create cells that mimic what grid cells do and create an artificial grid cell."
What Comes Next?
Laurencin and his team have individually engineered and made every single tissue in the lower limb, including bone, cartilage, ligament, skin, nerve, blood vessels. Regenerating joints and joint tissue is the next big mile marker, which Laurencin sees as essential to regenerating a limb that functions and performs in the way he envisions.
"Using stem cells and amnion tissue, we can regenerate joints that are damaged, and have severe arthritis," he says. "We're making progress on all fronts, and making discoveries we believe are going to be helping people along the way."
That focus and advancement is vital to Ennis. After laboring over the decision to have her leg amputated below the knee, she contracted MRSA two weeks post-surgery. In less than a month, she went from a below-the-knee-amputee to a through-the-knee amputee to an above-the-knee amputee.
"A below-the-knee amputation is night-and-day from above-the-knee," she said. "You have to relearn everything. You're basically a toddler."
Kirstie Ennis pictured in July 2020.
Photo Credit: Ennis' Instagram
The clock is ticking on the timeline Laurencin set for himself. Nine years might seem like forever if you're doing time but it might appear fleeting when you're trying to create something that's never been done before. But Laurencin isn't worried. He's convinced time is on his side.
"Every week, I receive an email or a call from someone, maybe a mother whose child has lost a finger or I'm in communication with a disabled American veteran who wants to know how the progress is going. That energizes me to continue to work hard to try to create these sorts of solutions because we're talking about people and their lives."
He devotes about 60 hours a week to the project and the roughly 100 students, faculty and staff who make up the HEAL team at the Convergence Institute seem acutely aware of what's at stake and appear equally dedicated.
"We're in the thick of the science in terms of making this happen," says Laurencin. "We've moved from making the impossible possible to making the possible a reality. That's what science is all about."