After people started testing positive for hepatitis C in a coastal Florida town in December, state officials collected blood from patients, wrapped their specimens in dry ice and mailed them straight to the Centers for Disease Control in Atlanta, Ga.
The hepatitis C virus, which is spread through contact with infected blood and can lead to deadly liver cancer, is notoriously hard to identify. But if anyone could understand what was happening in Florida, it would be the Division of Viral Hepatitis in the CDC's headquarters.
Using samples from the laboratory's collection of nearly 1 million frozen specimens, scientists helped make the initial discovery of the hepatitis C virus in the 1980s. In 2020, that research was awarded the Nobel Prize in Medicine.
The scientists at the lab knew what they were doing. Quickly, they analyzed the blood from Florida using their custom software and found that nine cases were genetically linked to the same pain clinic, where it was later discovered that a doctor was improperly reusing injection vials. By March, officials in Florida had restricted the doctor's medical license to limit the spread of the virus and packaged new patient samples to send to the CDC for testing, CDC employees told NPR.
But on April 1, the outbreak investigation was brought to a halt. All 27 of the lab's scientists received an email from the U.S. Department of Health and Human Services informing them that they were losing their jobs. Like thousands of other employees who received similar emails that day, the scientists were told they would be placed on administrative leave until June 2, after which they would no longer work for the CDC.
The email said their duties were "identified as either unnecessary or virtually identical to duties being performed elsewhere in the agency." But the kind of genetic tracing that the CDC's lab performs is not conducted by any other lab in the United States or the world, experts interviewed by NPR said.
While the lab remains shuttered, ongoing investigations of current hepatitis outbreaks have been stalled, not just in Florida, but also in Oregon, Pennsylvania, Massachusetts, New Mexico, Wisconsin, West Virginia and Georgia, according to CDC employees who work closely with the Division of Viral Hepatitis. The five CDC employees NPR spoke with requested that their names not be shared for fear of retaliation.
Scientists who specialize in infectious disease told NPR that the lab's closure puts Americans at a higher risk of contracting viral infections in the future.
"More people get sick, or you don't recognize outbreaks at all, and they just continue to spread unchecked," said the Director of Infectious Disease Programs at the Association of Public Health Laboratories, Kelly Wroblewski. "That's the ultimate risk."
Although four new samples have already arrived at the lab and three more were waiting in Florida to be sent, none have been tested by the CDC, scientists at the CDC said. Epidemiologists still working at the CDC have been trying to find another place that can do the analysis but have been unsuccessful, an agency employee told NPR.
"Commercial laboratories do not do this because it's not profitable," said the employee. "That's why no one really does it except for us."
Without the CDC's scientists available to test the genetic material in patient samples, it will be harder for epidemiologists to confirm whether people with hepatitis C were infected in the same Florida doctor's office or somewhere else where the virus could still be spreading, CDC scientists said.
"We won't know whether there are other linked cases in this clinic," said a CDC scientist. "There could potentially be hundreds more people that have been infected with hepatitis C and not know it."
NPR requested an interview with the Florida Department of Health but representatives there did not respond. When NPR reached out to the CDC to request an interview to discuss the status of the Division of Viral Hepatitis lab, a representative referred reporters to an HHS form for requesting comment. As of publication, HHS has not responded to six questions NPR asked through the form.
Two days after the lab's scientists received their reduction in force emails, HHS Secretary Robert F. Kennedy Jr. acknowledged that about a fifth of the cuts at HHS were made unintentionally and some people would be offered their jobs back.
"We're reinstating them," Kennedy told reporters on April 3. "We're going to do 80 percent cuts, but 20 percent of those are going to have to be reinstalled, because we'll make mistakes."
On April 4, the Association of Public Health Laboratories sent a letter to Kennedy urging HHS to reinstate all personnel in the Division of Viral Hepatitis and at the Division of STD Prevention, another lab at the CDC that was also shuttered.
"The [Division of Viral Hepatitis] Laboratory Branch had the highest degree of viral hepatitis expertise of any public health laboratory in the world," wrote Scott Becker, the association's CEO. "Their loss eliminated critical national testing services that do not exist anywhere else within the HHS agencies."
As of April 16, the association had not received a response from Kennedy, Becker said.
Hepatitis is an inflammation of the liver, most often caused by one of five different viruses. The disease sickens and kills tens of thousands of Americans every year. In 2022, there were more than 85,000 estimated viral hepatitis infections in all 50 states and the District of Columbia, the latest surveillance data shows. More than 14,500 people are known to have died from the infections in 2022. That number does not include patients who might have died from related complications, like long-term liver disease, without knowing the cause could have been a hepatitis infection.
Viral hepatitis is often undiagnosed and underreported. For more than 30 years, the Division of Viral Hepatitis has been trying to change that, scientists said. Hepatitis samples in the lab's collection in the CDC's headquarters have been used by scientists to invent multiple vaccines and identify new viral strains. The lab's scientists have linked thousands of infections to their sources, they said, which likely prevented dozens of outbreaks from affecting far more members of the public.
Because of the unique role that U.S. government labs like the Division of Viral Hepatitis play in disease detection and prevention, they rarely shut down. If a single scientist is expected to leave or retire, the lab creates an elaborate plan to transition their work to someone else who can continue it, said a CDC scientist.
But after employees were told their jobs were no longer needed on April 1, they were also informed they had just one day to close down the lab, scientists at the lab told NPR. Relocating around a million samples in a day would be virtually impossible, the scientists said. The samples are kept in more than 50 freezers maintained at different temperatures, ranging from -80 degrees to -20 degrees. Since the lab has no other freezer space outside the CDC where they could transfer the specimens, they're still at the CDC for now, scientists said.
"Nothing has been shut down correctly," said a CDC employee. "These aren't pieces of equipment you can just unplug."
The lab's computer genomic analysis program – called the Global Hepatitis Outbreak and Surveillance Technology, or GHOST – is also in limbo. That's the program that allowed scientists to link the genetic information from patients in Florida to the doctor's office where the infections spread. More than 20 other states access the CDC's GHOST technology remotely by uploading their own samples directly to the program. But the system, which was built with help from a more than $6 million dollar allocation from Congress, is not fully remote. To function correctly, and to allow the program to keep improving itself with artificial intelligence, it requires frequent in-person maintenance by scientists working at high-end computer stations located at the CDC, said four CDC employees who work with the technology.
"If we don't have the experts behind it, we're not going to be able to use it," said a health worker at the CDC involved with the Florida outbreak investigation. "Something will happen and it will glitch and it will go down. If this happens, it's going to take decades to come back from that, and that's devastating not just to us, but to the American people."
Scientists have been trying to go into the lab to prevent the GHOST program from shutting down, CDC employees told NPR, even though their jobs have not been reinstated. But communication about access to the lab has been inconsistent.
Shortly after they were told to pack up their materials in one day, the scientists were informed that they could keep entering the lab through April 11. A few returned to find some of the lab's equipment already malfunctioning. Soon after, the scientists heard they could retain access to the lab through April 25. But that access has not always been granted immediately. Multiple scientists who tried to enter CDC headquarters on April 14 were initially turned away due to issues with their key cards, two CDC employees told NPR.
Expensive equipment and irreplaceable specimens could be permanently lost if scientists cannot keep working in the lab, CDC employees said.
"You have to do certain things to make sure they're set up for long-term pauses," said a CDC scientist. "That's millions of dollars worth of equipment if they're not shut down correctly."
When functioning properly, the lab can also respond to unexpected public health emergencies. For almost a year, starting in April 2020, the Division of Viral Hepatitis tested specimens from people infected with the novel COVID-19 virus to better understand it. The lab generated some of the first data on the prevalence of COVID-19 across the U.S., workers told NPR.
"We were there during the pandemic when everyone was afraid and we didn't know anything about COVID," said one CDC scientist. "And now we're thrown out, just like that."
In interviews with NPR, four scientists who worked in the lab said they and their colleagues are hoping they'll be able to return to keep doing their work at the Division of Viral Hepatitis, which they said saves American lives.
"Everyone is saying that this seems to be a mistake," said a CDC scientist. "If they knew the impact of these programs, they would never do this."
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