Mere hours after birth, most newborns are tested for two things: whether they have signs of hearing loss and whether they have any of a range of rare conditions that could severely impact their health and their lives.
If they test positive for either, they qualify for a number of interventions that can dramatically improve their prospects over their lifetime.
But both tests could soon undergo dramatic changes because of drastic cutbacks at federal health agencies that public-health advocates say imperil both programs. These cutbacks could mean that certain states will not test for and respond to conditions that currently set services into motion in every state.
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“There are a lot of worthy causes that fall by the wayside when there isn’t some kind of centralized government support,” says Karl White, director of the National Center for Hearing Assessment and Management at Utah State University.
The dismantling of a critical division
The Early Hearing Detection and Intervention program (EHDI) is run partially out of the U.S. Centers for Disease Control and Prevention (CDC). The program helps states coordinate newborn hearing screening and respond to infants who fail the hearing tests. It falls under the CDC’s Disability and Health Promotion branch.
But this entire branch was eliminated in the April 1 cutbacks at CDC that slashed about 2,400 employees. EHDI had eight full-time workers and one fellow; all but one were eliminated in the cutbacks, according to current and former staff.
EHDI worked with states to analyze data to help communities follow up with families so that babies born deaf or hard of hearing get support as early as possible.
States apply for funding grants under EHDI. They submitted the applications to the CDC in January, and now the applications are sitting there with no one left to review them, White says. “There are real questions about what’s going to happen,” he says, “and whether that money is going to be available.”
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Newborn hearing screenings are a true public-health success story. Hospitals did not start screening children for hearing loss at birth until the 1990s; it wasn’t until 2000 that screening was nearly universal across states. Children’s lives can be changed dramatically by early screening and response. In the 1970s and 1980s, children weren’t diagnosed with profound hearing loss until they were 2 or 3 years old, which hampered their ability to read and write, White says. Now, children are screened at birth, and early interventions can help them meet more of these milestones.
Thanks in part to federal funding for newborn hearing screening, about 98% of newborns are screened for hearing loss before they leave the hospital, according to the CDC. This won’t change immediately, says Donna Smiley, the chief staff officer for audiology at the American Speech-Language-Hearing Association.
That’s because some EHDI funding is still administered through the Health Services Resources Administration, an agency of the U.S. Department of Health and Human Services (HHS) that was less affected by cuts.
But the HRSA funding relies on EHDI data, and it will be impossible to know where problems lie and where to send money. Eventually, state programs that rely on CDC data analysis will dissolve, Smiley says. The CDC especially helps with follow-ups when children are found to be deaf or hard of hearing.
“If babies are going to be screened but there’s not any follow-up, that’s going to be a wasted screening,” says Smiley.
White agrees that without CDC’s EHDI funding, some state hearing screening programs could collapse. According to a survey conducted by his organization in early 2024, 18 states said that their EHDI programs would be discontinued if federal money disappeared. About 37 states said the absence of federal funding “would have a major negative impact.” Though some hearing testing may continue through hospitals, there would be a gap in the coordinated response and interventions for affected babies.
“The thing I am most worried about is that money that Congress has specifically appropriated to support and expand and improve EHDI is in danger of not being allocated,” he says. In 2022, Congress passed and President Biden signed the Early Hearing Detection and Intervention Act that reauthorized EHDI program funding until 2027. It sought to improve and expand EHDI programs.
“If it can happen to USAID and FEMA—if contracts to Columbia and Harvard and other places can just be canceled—I think there’s reason to be concerned,” White says.
In a statement provided to TIME about newborn hearing screenings, an HHS spokesperson said that early childhood and newborn screening programs were being consolidated into the new Administration for a Healthy America (AHA) and the CDC to "improve efficiency and better address public health needs." The reorganization, the statement says, is aiming to "streamline operations, maximize resources, and support key priorities like early childhood health and disease prevention efforts."
A crucial rare-disease screening committee was disbanded
In their first days of life, babies also are tested, often with a heel prick, for a host of rare diseases that respond to early intervention. These tests can change a child’s life. Exactly which conditions they are tested for varies from state to state; Pennsylvania tests for 38 rare diseases, while Alaska only tests for 32, according to the National Organization for Rare Disorders, an advocacy group.
State testing has become more uniform over the last 15 years because of something called the Recommended Uniform Screening Panel, which recommends which diseases states include in their testing panel. The HHS Secretary decides what diseases are added to the list each year—usually adding one or two based on the recommendations of the Advisory Committee on Heritable Disorders in Newborns and Children. This committee decides to add new diseases if there is a screening test that can be used at population scale and if a treatment or intervention is available.
“In a remarkable feat of health policy, we created this committee that used evidence to decide what we should screen for,” says one HHS staffer not authorized to speak to the media.
Though the advisory committee is made up almost entirely of volunteers—meaning it didn’t cost the government much money—it was disbanded by the Trump Administration on April 3, says a spokesperson for the National Organization for Rare Disorders.
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The advisory committee was set to vote on May 9 whether to recommend adding two rare genetic diseases to the panel: metachromatic leukodystrophy (MLD) and Duchenne muscular dystrophy. Now, the advocates who spent years advocating for those diseases to be added have no remedy.
“The longer it’s delayed before these conditions are screened at the state level, the more children are potentially born with these conditions and don’t get the opportunity to be identified and access care,” says Allison Herrity, senior policy analyst at the National Organization for Rare Disorders.
Screening for disorders is essential because in the last few years, treatments such as gene therapy have become available to treat children early in life, Herrity says.
Lesa Brackbill knows the horrible heartbreak that can occur when a baby is born in a state that does not screen for their rare genetic disease. Her daughter Victoria was born in 2014 and seemed healthy, but at five months old, she started becoming “a completely different baby,” Brackbill says. Victoria became irritable, couldn’t keep her food down, and stopped smiling.
After an MRI, CT scan, and a genetic test, Victoria was diagnosed with Krabbe disease, a rare disorder that affects the central and peripheral nervous systems. Though there is a treatment, it was too late to intervene; she died the next year. Pennsylvania did not, at the time, screen for Krabbe at birth, although neighboring New York did. Had Pennsylvania screened for the disease, Victoria would have been able to get stem cell therapy that would have stopped the disease’s progression, Brackbill says.
“We were given a diagnosis with despair,” she says. “Newborn screening gives diagnosis with hope.”
Brackbill lobbied for the advisory committee to add Krabbe disease, which it did in 2024; now 12 states, including Pennsylvania, screen for the disease, and more are in the process of adding it. But Brackbill is now worried that the advisory committee has been dissolved and that screenings won’t evolve, but go backward.
“Without the ability to add conditions, the list is going to remain stagnant,” she says. “What good is a treatment if no one can access it?”
An essential screening for mothers may disappear
Advocates worry that the health and wellbeing of mothers—not just babies—during and after pregnancy could worsen because of the Trump Administration’s cuts to HHS. Since 1987, the federal government has conducted a study called PRAMS—the Pregnancy Risk Assessment Monitoring System—that asks women about their experiences before, during, and after pregnancy.
About 18 dedicated staff at PRAMS collected and analyzed the data that came in from states, using it to improve mother and infant health. It’s the only national data collection system with comprehensive information on mothers’ experiences.
In New Jersey, for example, PRAMS data showed that the mortality rate among Black infants was more than three times that of white infants. PRAMS further analyzed the data to look at the timing of prenatal care and barriers to postpartum care. It found that Black women also had low rates of postpartum checkups and breastfeeding initiation. Starting in 2018, New Jersey approved $4.7 million a year to community organizations to try to reduce infant mortality and increase postpartum checkups and other interactions with health care.
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But all of the PRAMS staff were laid off in the April 1 reduction in force, according to current and former employees. Now, no one is left to collect the data, analyze it, or share insights with states to improve mother and child outcomes.
Former staff say they don’t understand how the Administration can throw away decades worth of data that helped improve women and children’s lives, especially since Trump has said he would be the “fertilization president.”
“This is completely counter to the current administration’s goals of wanting to emphasize the alarming declining birth rates and high mortality rates,” said one laid-off PRAMS worker, who wished to remain anonymous because he is on administrative leave and receiving a salary until June, to TIME. “Cutting this team and program is directly contrary to their goals of trying to emphasize a pro-family culture—even a pro-life culture.”