GEORGIA (WALB) - Before you can take your baby home from the hospital, a nurse performs a quick heel-prick test—collecting drops of blood to screen for certain genetic, metabolic, blood, and endocrine disorders.

But which disorders are tested can depend on the state where your child is born, and recent cuts at the federal level has affected how new diseases are added to the newborn screening process.

One year after federal panel was cut

In April 2025, the federal government cut the Advisory Committee on Heritable Disorders in Newborns and Children—a committee made up entirely of volunteers.

That panel advised the Secretary of Health and Human Services on newborn screening policy, including whether to add conditions to the Recommended Uniform Screening Panel (RUSP)—a national list many states use to build their own newborn screening programs.

Now, the rare disease community says it’s working to make sure potentially fatal diseases aren’t missed.

A Georgia family’s push: “A child’s life should not be determined by a zip code”

Sloane and Carlyle Kirbo from Bainbridge know that gap in newborn screening firsthand.

Their son, Cloud, has Krabbe A disease, and went undiagnosed for the first half of his life. The Kirbos say that if Cloud had been born just across the border in Tennessee, the condition could have been detected at birth through newborn screening.

The family pursued a stem cell transplant—the only known treatment to prevent the progression of the disease—while also confronting the financial burden they say came with urgent care.

After Cloud’s transplant, the Kirbos pushed for change in Georgia.

This video is from March of 2023, when Krabbe A was not on the Georgia testing panel. You can follow their journey here.

National standards stalled, states left uneven

Because of their work and others in the Krabbe A community, the disease was added to the national RUSP in 2024. Still today, children in Florida and Alabama are not tested for Krabbe A since RUSP is just a recommendation.

For families and advocates, the broader concern is what happens when the federal process that once helped standardize additions to newborn screening becomes weakened.

Kevin Alexander, a rare-disease advocate, points to the value of early detection. He was diagnosed with PKU at nine days old through newborn screening—allowing treatment to begin early. He also created a documentary about his life with a rare disease.

“A child being born in one state shouldn’t be a death sentence… this is a non-partisan issue. This is about life and death."

You can watch a long-form interview with Alexander below about his experience with PKU and his work as a rare disease advocate.

Since the Advisory Committee on Heritable Disorders in Newborns and Children was dissolved, Health Secretary Robert F. Kennedy Jr. added Duchenne Muscular Dystrophy and Metachromatic Leukodystrophy to the national RUSP “following scientific review and public comment,” a press release said.

Despite this recent success, the rare disease community has been pushing for the process to add diseases to be standardized.

With the federal advisory committee dissolved, the American College of Medical Genetics and Genomics has established a Newborn Screening Coalition to help continue the work of evaluating and advancing screening recommendations.

Where Georgia stands

Georgia is among a limited number of states considered RUSP-aligned, meaning it has adopted legislation requiring screening for disorders on the RUSP list and funding future additions.

Still, lingering affects from last year’s cuts to the Center for Disease Control and Prevention could be concerning for Georgia parents.

Funding for the CDC’s state programs were cut, and many experts left the organization.

Dr. Joanne Mei was the chief of the Newborn Screening Quality Assurance Program (NSQAP) at the CDC. That program supports state laboratories, ensuring that the equipment and results from newborn screenings are accurate. She retired in 2025, and to her knowledge, no one has been hired to replace her.

Even though she said this year’s budget for the CDC is “okay” and work is still getting done with fewer employees, many of the positions in her former program are considered “detail” positions. She explained that means the positions are temporary.

In an Op Ed she wrote for Alexander’s advocacy page, she said:

Fewer CDC scientists now support states, and fewer resources are helping states adopt new technologies to improve newborn screening tests. Not only do states test newborns but they also contact families of at-risk babies. They ensure the baby has more testing, they help with medical treatments, and they track how well the baby is doing. CDC provides critical services to states, so babies are protected.

You can learn more about which conditions are on the newborn screening panel in your state here. You can also read more about the current CDC NSQAP here.

Take a look below at previous coverage from our 11 a.m. “What’s Going On newscast”:

Have a news tip or see an error that needs correction? Let us know. Please include the article’s headline in your message.

To stay up to date on all the latest news as it develops, follow WALB on Facebook and X (Twitter). For more South Georgia news, download the WALB News app from the Apple Store or Google Play.

Copyright 2026 WALB. All rights reserved.