‘We are flying blind’: RFK Jr.’s cuts halt data gathering on abortion, cancer, HIV, and additional topics
Former employees and external specialists assert that the reductions increase the country's susceptibility to health risks.
TroibNews 
The federal teams responsible for tracking public health issues are disappearing, jeopardizing ongoing efforts to address these challenges.
Health Secretary Robert F. Kennedy Jr.'s decision to eliminate tens of thousands of federal positions has disrupted data collection on critical health concerns, ranging from cancer rates among firefighters and mother-to-baby transmission of HIV and syphilis to drug-resistant gonorrhea outbreaks and cases of carbon monoxide poisoning.
These reductions threaten to obscure the gravity of urgent health risks and hinder the ability to determine whether situations are improving or deteriorating, leaving officials unsure of how to effectively respond. Moreover, they could obstruct assessments of the administration’s funding and policy impacts. Experts and affected employees contend that the layoffs will result in higher costs for the government over time by eliminating vital information on the effectiveness or wastefulness of programs, while allowing preventable issues to persist.
“Surveillance capabilities are crucial for identifying emerging health issues, directing resources efficiently, and evaluating the effectiveness of existing policies,” said Jerome Adams, who previously served as surgeon general during the Trump administration. “Without robust data and surveillance systems, we cannot accurately assess whether we are truly making America healthier.”
Departments that managed the Sickle Cell Data Collection Program, the National Intimate Partner and Sexual Violence Survey, the Pregnancy Risk Assessment Monitoring System, and the National Firefighter Registry for Cancer have been dissolved. Also eliminated were teams that reported statistics on nationwide abortion numbers, lead levels in children’s blood, alcohol-related fatalities, asthma rates, radon exposure, and the prevalence of HIV treatment among affected individuals.
Despite Kennedy's assertions of “radical transparency” at HHS and his belief that access to more data would lead to better health choices for Americans, nine federal employees who were laid off or placed on administrative leave over the past two weeks informed PMG that the cuts mean vital data may not be collected—or if states continue collecting it, it won’t be compiled for public viewing—on issues that stakeholders across party lines regard as priorities. Although previous years’ data remains accessible online, future updates are uncertain if these cuts go unrevoked, they warned.
Andrew Nixon, an HHS spokesperson, did not dispute the significant reductions in data collection teams but stated in a communication that “CDC is actively working to ensure continuity of operations during the reorganization period and remains committed to ensuring critical programs and surveys continue.”
Nonetheless, every employee PMG spoke with who received a “reduction in force” notice indicated they were not afforded a chance to transfer their data-gathering responsibilities to another team nor were they informed of who, if anyone, would take over those duties. While some workers are holding out hope for recall from administrative leave in the coming weeks, none have yet received updates from their supervisors.
“There was no plan in place to sunset any of it, or to transfer our expertise over to someone else or to train folks,” an anonymous employee from the CDC’s Division of Reproductive Health who was laid off shared. “Even if you're folding in some personnel, all of our team's work has essentially been eliminated overnight.”
‘We are flying blind’
Among the impacted offices is the CDC’s Atlanta-based lab that analyzes sexually transmitted infection samples nationwide, which aids state and local public health officials in identifying outbreak locations, infection rates, origins, and intervention strategies.
“Missing that expertise and that connection between laboratory information and outbreak investigation means we are flying blind,” stated Scott Becker, CEO of the Association of Public Health Laboratories. “The critical services that they provide to public health labs in the country that are really not replicated anywhere else."
The lab is unique, being one of only three worldwide and the sole U.S. facility capable of testing for new strains of “super gonorrhea” resistant to most antibiotics, a condition the Biden administration designated an “urgent public health threat” last year.
The layoffs have also stunted progress on initiatives that former President Donald Trump advocated, such as ending HIV transmission and enhancing access to IVF.
Despite Trump promoting himself as the “father of fertilization” during his campaign and signing an executive order in February instructing federal officials to explore improvements for IVF and other reproductive technologies, Kennedy disbanded the six-person team managing the National ART Surveillance System—an initiative mandated by Congress designed to track and broadcast the pregnancy success rates of fertility clinics across the country.
“The data is like consumer protection information for fertility patients,” said one of the workers, who requested anonymity for fear of retaliation. “We were putting any information out there that we could that was helpful for couples that are going to spend tens of thousands of dollars investing in what they hope will end up to be a healthy baby.”
The worker added that their team was in the midst of compiling the latest data—2023 statistics—when they were put on administrative leave and subsequently locked out of emails and offices. With the recent rise in IVF usage and minimal regulations, the team’s previous reports have driven the medical field to embrace safer and more effective IVF practices.
HIV data collection has faced severe impacts due to the cuts, according to three officials who received “reduction in force” notifications.
The behavioral and clinical surveillance branch of the CDC's HIV office was dissolved, leaving the future of multiple data collection projects uncertain. These include studies assessing how many individuals with HIV are receiving adequate treatment, identifying behaviors that elevate HIV infection risk, evaluating the effectiveness of testing and preventive measures, determining the number of undiagnosed HIV cases, and analyzing the relationship between substance abuse and HIV transmission.
“If you don't understand what are the needs for HIV prevention, then you don't understand what types of services to provide or how to direct those services to reach the greatest number of people,” an anonymous employee from one of the eliminated HIV branches expressed. “That's the big danger.”
In some instances, state health departments and healthcare providers will still gather data and report it to federal agencies—but with no one remaining to compile, analyze, or disseminate this information.
Additionally, teams dedicated to examining the underlying factors behind the data have been eliminated. Although the government will continue to record the number of infants born with HIV and syphilis, the team investigating those infections has been disbanded amidst a surge in congenital syphilis cases, a preventable infection that can be deadly if left untreated.
“We would review cases, interview mothers, and identify local systems issues and failures,” another affected employee from the Division of HIV Prevention relayed to PMG. “Little of that is going to move forward now that we’re gone.”
‘We've broken that line’
The staff focused on violence and injury prevention at the CDC was also cut, eliminating oversight of the Web-based Injury Statistics Query and Reporting System (WISQARS) and the Wide-ranging Online Data for Epidemiologic Research (WONDER). Sharon Gilmartin, executive director of the nonpartisan public health organization Safe States Alliance, noted that state and local officials rely on these databases to identify trends in fatalities, which has led to growing concern about potential gaps in updated information.
“It tells us where fatalities are increasing, where there are hot spots that we need to pay attention to, and what efforts are working,” she remarked. “It's a misnomer that this is bureaucratic streamlining and we're just getting rid of a bloated workforce. There was a very direct line between the federal workforce and the work in states and communities, and now we've broken that line.”
The cuts also targeted the National Institute for Occupational Safety and Health, eliminating the team overseeing the National Firefighter Registry for Cancer. While historical data remains online, the current link for firefighters to submit their information now leads to an error page. Furthermore, research on firefighters’ exposure to carcinogens during electric vehicle fires is on hold.
“We cannot collect any additional data,” said Micah Niemeier-Walsh, the vice president of a local union affiliate representing workers in NIOSH’s Cincinnati office, including those involved with the firefighter registry. “This is a congressionally mandated program that Trump himself signed into law in 2018, and we were researching what leads to elevated cancer rates in firefighters and how to reduce them.”
In addition, despite a push by conservative groups—such as the authors of the Heritage Foundation’s Project 2025 blueprint—for the federal government to gather more information on abortion statistics, the CDC’s team that has compiled this data for decades has been disbanded. A former team member indicated that they were in the process of analyzing the 2023 numbers—the first full year following the Supreme Court's decision to overturn Roe v. Wade—when they received reduction in force notices, leaving that vital data “sitting in inboxes and Teams folders” inaccessible to staff members who can no longer work on it.
The entirety of the CDC’s Pregnancy Risk Assessment Monitoring System (PRAMS) team was also eliminated, threatening the continuity of this long-standing database tracking maternal and infant health.
A CDC epidemiologist, stationed in a state far from the agency’s Atlanta headquarters, revealed to PMG their efforts to track various factors, including new parents' sleep practices, maternal smoking habits around infants, and postpartum depression or anxiety rates.
“[These cuts are coming] from a party that claims to be pro-family and pro-life,” the worker reflected. “But if you're not getting these data, you don't really know how moms and babies and families are doing during a really important time in their lives.”
Frederick R Cook for TROIB News
Health Secretary Robert F. Kennedy Jr.'s decision to eliminate tens of thousands of federal positions has disrupted data collection on critical health concerns, ranging from cancer rates among firefighters and mother-to-baby transmission of HIV and syphilis to drug-resistant gonorrhea outbreaks and cases of carbon monoxide poisoning.
These reductions threaten to obscure the gravity of urgent health risks and hinder the ability to determine whether situations are improving or deteriorating, leaving officials unsure of how to effectively respond. Moreover, they could obstruct assessments of the administration’s funding and policy impacts. Experts and affected employees contend that the layoffs will result in higher costs for the government over time by eliminating vital information on the effectiveness or wastefulness of programs, while allowing preventable issues to persist.
“Surveillance capabilities are crucial for identifying emerging health issues, directing resources efficiently, and evaluating the effectiveness of existing policies,” said Jerome Adams, who previously served as surgeon general during the Trump administration. “Without robust data and surveillance systems, we cannot accurately assess whether we are truly making America healthier.”
Departments that managed the Sickle Cell Data Collection Program, the National Intimate Partner and Sexual Violence Survey, the Pregnancy Risk Assessment Monitoring System, and the National Firefighter Registry for Cancer have been dissolved. Also eliminated were teams that reported statistics on nationwide abortion numbers, lead levels in children’s blood, alcohol-related fatalities, asthma rates, radon exposure, and the prevalence of HIV treatment among affected individuals.
Despite Kennedy's assertions of “radical transparency” at HHS and his belief that access to more data would lead to better health choices for Americans, nine federal employees who were laid off or placed on administrative leave over the past two weeks informed PMG that the cuts mean vital data may not be collected—or if states continue collecting it, it won’t be compiled for public viewing—on issues that stakeholders across party lines regard as priorities. Although previous years’ data remains accessible online, future updates are uncertain if these cuts go unrevoked, they warned.
Andrew Nixon, an HHS spokesperson, did not dispute the significant reductions in data collection teams but stated in a communication that “CDC is actively working to ensure continuity of operations during the reorganization period and remains committed to ensuring critical programs and surveys continue.”
Nonetheless, every employee PMG spoke with who received a “reduction in force” notice indicated they were not afforded a chance to transfer their data-gathering responsibilities to another team nor were they informed of who, if anyone, would take over those duties. While some workers are holding out hope for recall from administrative leave in the coming weeks, none have yet received updates from their supervisors.
“There was no plan in place to sunset any of it, or to transfer our expertise over to someone else or to train folks,” an anonymous employee from the CDC’s Division of Reproductive Health who was laid off shared. “Even if you're folding in some personnel, all of our team's work has essentially been eliminated overnight.”
‘We are flying blind’
Among the impacted offices is the CDC’s Atlanta-based lab that analyzes sexually transmitted infection samples nationwide, which aids state and local public health officials in identifying outbreak locations, infection rates, origins, and intervention strategies.
“Missing that expertise and that connection between laboratory information and outbreak investigation means we are flying blind,” stated Scott Becker, CEO of the Association of Public Health Laboratories. “The critical services that they provide to public health labs in the country that are really not replicated anywhere else."
The lab is unique, being one of only three worldwide and the sole U.S. facility capable of testing for new strains of “super gonorrhea” resistant to most antibiotics, a condition the Biden administration designated an “urgent public health threat” last year.
The layoffs have also stunted progress on initiatives that former President Donald Trump advocated, such as ending HIV transmission and enhancing access to IVF.
Despite Trump promoting himself as the “father of fertilization” during his campaign and signing an executive order in February instructing federal officials to explore improvements for IVF and other reproductive technologies, Kennedy disbanded the six-person team managing the National ART Surveillance System—an initiative mandated by Congress designed to track and broadcast the pregnancy success rates of fertility clinics across the country.
“The data is like consumer protection information for fertility patients,” said one of the workers, who requested anonymity for fear of retaliation. “We were putting any information out there that we could that was helpful for couples that are going to spend tens of thousands of dollars investing in what they hope will end up to be a healthy baby.”
The worker added that their team was in the midst of compiling the latest data—2023 statistics—when they were put on administrative leave and subsequently locked out of emails and offices. With the recent rise in IVF usage and minimal regulations, the team’s previous reports have driven the medical field to embrace safer and more effective IVF practices.
HIV data collection has faced severe impacts due to the cuts, according to three officials who received “reduction in force” notifications.
The behavioral and clinical surveillance branch of the CDC's HIV office was dissolved, leaving the future of multiple data collection projects uncertain. These include studies assessing how many individuals with HIV are receiving adequate treatment, identifying behaviors that elevate HIV infection risk, evaluating the effectiveness of testing and preventive measures, determining the number of undiagnosed HIV cases, and analyzing the relationship between substance abuse and HIV transmission.
“If you don't understand what are the needs for HIV prevention, then you don't understand what types of services to provide or how to direct those services to reach the greatest number of people,” an anonymous employee from one of the eliminated HIV branches expressed. “That's the big danger.”
In some instances, state health departments and healthcare providers will still gather data and report it to federal agencies—but with no one remaining to compile, analyze, or disseminate this information.
Additionally, teams dedicated to examining the underlying factors behind the data have been eliminated. Although the government will continue to record the number of infants born with HIV and syphilis, the team investigating those infections has been disbanded amidst a surge in congenital syphilis cases, a preventable infection that can be deadly if left untreated.
“We would review cases, interview mothers, and identify local systems issues and failures,” another affected employee from the Division of HIV Prevention relayed to PMG. “Little of that is going to move forward now that we’re gone.”
‘We've broken that line’
The staff focused on violence and injury prevention at the CDC was also cut, eliminating oversight of the Web-based Injury Statistics Query and Reporting System (WISQARS) and the Wide-ranging Online Data for Epidemiologic Research (WONDER). Sharon Gilmartin, executive director of the nonpartisan public health organization Safe States Alliance, noted that state and local officials rely on these databases to identify trends in fatalities, which has led to growing concern about potential gaps in updated information.
“It tells us where fatalities are increasing, where there are hot spots that we need to pay attention to, and what efforts are working,” she remarked. “It's a misnomer that this is bureaucratic streamlining and we're just getting rid of a bloated workforce. There was a very direct line between the federal workforce and the work in states and communities, and now we've broken that line.”
The cuts also targeted the National Institute for Occupational Safety and Health, eliminating the team overseeing the National Firefighter Registry for Cancer. While historical data remains online, the current link for firefighters to submit their information now leads to an error page. Furthermore, research on firefighters’ exposure to carcinogens during electric vehicle fires is on hold.
“We cannot collect any additional data,” said Micah Niemeier-Walsh, the vice president of a local union affiliate representing workers in NIOSH’s Cincinnati office, including those involved with the firefighter registry. “This is a congressionally mandated program that Trump himself signed into law in 2018, and we were researching what leads to elevated cancer rates in firefighters and how to reduce them.”
In addition, despite a push by conservative groups—such as the authors of the Heritage Foundation’s Project 2025 blueprint—for the federal government to gather more information on abortion statistics, the CDC’s team that has compiled this data for decades has been disbanded. A former team member indicated that they were in the process of analyzing the 2023 numbers—the first full year following the Supreme Court's decision to overturn Roe v. Wade—when they received reduction in force notices, leaving that vital data “sitting in inboxes and Teams folders” inaccessible to staff members who can no longer work on it.
The entirety of the CDC’s Pregnancy Risk Assessment Monitoring System (PRAMS) team was also eliminated, threatening the continuity of this long-standing database tracking maternal and infant health.
A CDC epidemiologist, stationed in a state far from the agency’s Atlanta headquarters, revealed to PMG their efforts to track various factors, including new parents' sleep practices, maternal smoking habits around infants, and postpartum depression or anxiety rates.
“[These cuts are coming] from a party that claims to be pro-family and pro-life,” the worker reflected. “But if you're not getting these data, you don't really know how moms and babies and families are doing during a really important time in their lives.”
Frederick R Cook for TROIB News
