Catastrophic HHS Cuts

According to multiple officials, over half of the Centers for Disease Control and Prevention’s workforce focusing on developmental disabilities and birth defects was laid off this month, including teams working on studies regarding adults with intellectual and developmental disabilities and sickle cell disease. Collecting data for research about Americans with sickle cell disease is likely to be interrupted by the cuts. 

“If it is not restored, it will disrupt life-saving public health programs, halt critical research, and increase preventable hospitalizations, complications, and deaths. Its elimination runs counter to the Administration’s stated commitment to addressing chronic disease,” according to Dr. Belinda Avalos, president of the American Society of Hematology.

According to The National Heart, Lung, and Blood Institute, sickle cell disease, often known as sickle cell anemia, is a group of genetic diseases that damage hemoglobin, the main protein that transports oxygen in red blood cells. 

Normally, red blood cells are disc-shaped and flexible, allowing them to travel freely through blood channels. Red blood cells in sickle cell disease are misshaped, often crescent- or “sickle”-shaped, as a result of a gene mutation affecting the hemoglobin molecule. When red blood cells sickle, they become stiff and difficult to move, preventing blood flow to the rest of the body.

Sickle cell disease can cause serious complications, including the abrupt development of intense episodes of pain, called pain crises, that occur due of impeded blood flow and often require medical attention. These pain episodes are also referred to as “sickle cell crisis” and “vaso-occlusive crisis.” Chronic pain, stroke, lung issues, eye problems, infections, and renal disease are among the other issues that people with sickle cell disease may face.

The cuts also have an impact on the National Center on Birth Defects and Developmental Disabilities’ Disability and Health Data Science team’s collaboration with the National Syndromic Surveillance Program Disability Data, which monitors emergency department visits to detect public health outbreaks and other health issues affecting people with disabilities. 

 Everyone who worked on the program was laid off. The surveillance program data helps the public “better understand the health status of adults with and without disabilities in their state or territory,” said an inside source, who asked not to be identified because they plan to appeal.

 The National Center on Birth Defects and Developmental Disabilities has also helped to fund the Special Olympics Healthy Athletes program. The program offers free health screenings, education, services, and referrals to adults with intellectual and developmental disabilities (IDD). Between fiscal years 2021 and 2024, the initiative provided 99,000 health screenings and educated 27,290 health professionals and students about the health needs of people with intellectual and developmental disabilities. 

 Congress founded the National Center on Birth Defects and Developmental Disabilities  25 years ago. Employees affected by the downsizing received a harsh and unexpected email on April 1 informing them of their job losses. 

NCBDDD does research to develop initiatives that improve the lives of people with disabilities, which affect one in every four adults in the United States. “NCBDDD was the only center at CDC solely dedicated to addressing the needs of individuals with disabilities, birth defects, rare conditions, and bleeding disorders,” the source said. “Many are deeply concerned about the full impact these RIFs will have on the vulnerable populations we serve.”

The National Center on Birth Defects and Developmental Disabilities has also discontinued work on the congressionally mandated Early Hearing Detection and Intervention programs, which pay for state initiatives to detect and diagnose children’s hearing problems. According to the center’s data, nearly all babies in the United States are now screened for hearing loss, an increase from fewer than half 25 years ago. States had also collaborated with the branch on attempts to boost follow-up rates.

Cutting staff and programs within the United States Department of Health and Human Services will impact millions of Americans. While these changes may save money, scaling back the number of employees at the  Department of Health and Human Services could mean little progress in research and treatments for various medical conditions. Millions of Americans could suffer because of these cuts. 

Sources:

Clark, Cheryl. “Nearly Half of CDC Birth Defects and Disabilities Staff Cut.” MedPage Today, Ziff-Davis, LLC. , 10 Apr. 2025, http://www.medpagetoday.com/special-reports/features/115054. 

Erickson, Bo. “Thousands of Black Children with Sickle Cell Disease Struggle to Access Disability Payments.” CBS News, CBS Interactive, 27 Dec. 2023, http://www.cbsnews.com/news/sickle-cell-disease-children-social-security-ssi-disability/.  

Tin, Alexander. “CDC Faces Backlash for Cutting Sickle Cell, Adult Disability Programs.” CBS News, CBS Interactive, 10 Apr. 2025, http://www.cbsnews.com/amp/news/cdc-cuts-sickle-cell-adult-disability-programs/. 

“What Is Sickle Cell Disease?” National Heart Lung and Blood Institute, U.S. Department of Health and Human Services, 28 Aug. 2024, http://www.nhlbi.nih.gov/health/sickle-cell-disease.