ASH and 90+ Organizations Call for HHS to Immediately Restore CDC’s Division of Blood Disorders and Public Health Genomics

Apr 8, 2025

The health of millions of Americans living with blood disorders is at risk

(WASHINGTON—April 8, 2025) The American Society of Hematology (ASH) and 95 national and state organizations representing more than a million Americans living with or treating chronic and acute blood-related disorders sent a letter to Robert F. Kennedy Jr., secretary of the U.S. Department of Health and Human Services (HHS) urging him to fully restore the Centers for Disease Control and Prevention’s (CDC) Division of Blood Disorders and Public Health Genomics. ASH will be sharing the letter with other key leaders in the House and Senate.

As part of the mass layoffs and restructuring announced at HHS, nearly all the Division staff were placed on administrative leave, effectively dismantling this critical division that oversees essential programs relied on by individuals living with blood disorders.

“The CDC’s Division of Blood Disorders and Public Health Genomics is critical to care of people with blood diseases, and its elimination will have severe and irreversible consequences,” said Belinda R. Avalos, MD, ASH president. “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 and we are urging immediate action to reinstate this Division.”

The Division oversees key programs and activities that address chronic disease in the United States, including the Sickle Cell Data Collection Program, blood clot education and awareness efforts, and multidisciplinary efforts to provide educational information on thalassemia for patients and providers. The CDC’s hemophilia programs drive critical life- and cost-saving advances in care and prevention for people with bleeding disorders, and support blood and blood product safety monitoring activities of national importance.

The care of patients with blood disorders requires a strong and coordinated federal response.

Key facts about the blood disorders the Division oversees and its impact:

  • SCD affects approximately 100,000 Americans and is an inherited, lifelong disorder, which results in patients’ red blood cells becoming rigid and sickle shaped. Despite the relatively small number of individuals living with SCD, the health care system does not have a consistent method to capture the data necessary to address these individuals’ complex health challenges and connect them to comprehensive care. The Division’s Sickle Cell Data Collection Program has been critical in collecting and analyzing longitudinal data about people living in the U.S. with SCD. The Division’s sickle cell data collection, outreach, and education programs are necessary to help health care professionals understand the effects of medical interventions and inform best practices for SCD and establish cost-effective practices to improve and extend the lives of individuals with SCD.
  • Each year, 100,000 people, or 274 people each day on average, die from blood clots. A major focus of the CDC’s Blood Disorders Division is oversight of critical blood clot education and awareness efforts. The elimination of this Division will limit the CDC’s ability to promote the use of effective prevention techniques, leading to an increased risk of death and disability and higher health care spending.
  • Inherited bleeding disorders such as hemophilia and von Willebrand disease present complex, lifelong challenges for affected individuals. The Division supports critical life- and cost-saving advances in care for people with these conditions and funds the collection and dissemination of key data on bleeding disorders through the collaborative “Community Counts” program. It supports educational outreach to increase patient and provider understanding of hemophilia and its complications.
  • The Division supports nationwide blood and blood product safety monitoring. The Division’s work traces back to the tainted blood supply crisis in the 1980s, when an estimated 90% of people living with hemophilia in the U.S. contracted HIV and/or hepatitis C through the use of plasma-derived clotting factor products. CDC investigators were the first to discover and warn of HIV’s transmissibility through blood.

ASH and the following undersigned organizations urge Secretary Kennedy to reinstate the Division immediately.

Signed Organizations

  • Alaska Hemophilia Association
  • American Society for Clinical Pathology
  • American Society of Hematology
  • American Society of Pediatric Hematology/Oncology
  • American Thrombosis and Hemostasis Network (ATHN)
  • Arizona Bleeding Disorders
  • Association of Public Health Laboratories
  • Bleeding Disorders Alliance Illinois
  • Bleeding Disorders Alliance of North Dakota
  • Bleeding Disorders Association of Northeastern New York
  • Bleeding Disorders Association of South Carolina
  • Bleeding Disorders Coalition of Florida
  • Bleeding Disorders Foundation of North Carolina
  • Bleeding Disorders of the Heartland
  • Bridges Pointe, Inc.
  • Cayenne Wellness Center
  • CHES, Foundation
  • Cooley's Anemia Foundation
  • Discovering Moorer2Life
  • Foundation for Women & Girls with Blood Disorders
  • Gateway Hemophilia Association
  • Great Lakes Hemophilia Foundation
  • Greater Ohio Bleeding Disorders Foundation
  • Hemophilia Alliance
  • Hemophilia Association of New Jersey
  • Hemophilia Association of San Diego County
  • Hemophilia Association of the Capital Area
  • Hemophilia Council of California
  • Hemophilia Federation of America
  • Hemophilia Foundation of Maryland
  • Hemophilia Foundation of Michigan
  • Hemophilia Foundation of MN/SD
  • Hemophilia Foundation of Northern California
  • Hemophilia Foundation of Southern California
  • Hemophilia of Georgia
  • Hemophilia of Indiana
  • Little Hercules Foundation
  • Lone Star Bleeding Disorders Foundation
  • Louisiana Hemophilia Foundation
  • Martin Center Sickle Cell Inc
  • Mary M. Gooley Hemophilia Center
  • Maryland Sickle Cell Disease Association
  • Midwest Hemophilia Association
  • Mountain States Regional Hemostasis Network
  • MTS Sickle Cell Foundation, Inc. 
  • National Bleeding Disorders Foundation
  • National Bleeding Disorders Foundation Colorado Chapter
  • National Blood Clot Alliance
  • Nevada Chapter, National Bleeding Disorders Foundation
  • New England Hemophilia Association
  • New York City Hemophilia Chapter
  • New York State Bleeding Disorders Coalition
  • Northwest Ohio Hemophilia Foundation
  • Novant Health HTC
  • Ohio Bleeding Disorders Council
  • Oklahoma Hemophilia Foundation
  • Pacific Northwest Bleeding Disorders
  • Piedmont Health Services and Sickle Cell Agency
  • Rainbow Baby and Children’s Hospital Hemophilia Treatment Center
  • Rocky Mountain Hemophilia & Bleeding Disorders Association
  • Sangre de Oro, Inc.
  • Sick Cells
  • Sickle Cell Anemia Foundation of Oregon and P.N. West
  • Sickle Cell Anemia Resource Foundation
  • Sickle Cell Assn of Texas Marc Thomas Foundation
  • Sickle Cell Consortium
  • Sickle Cell Council of New Mexico, Inc.
  • Sickle Cell Disease Association of America - Central Alabama Chapter
  • Sickle Cell Disease Association of America Miami-Dade County Chapter
  • Sickle Cell Disease Association of America, Inc.
  • Sickle Cell Disease Association of Illinois
  • Sickle Cell Disease Partnership
  • Sickle Cell Foundation of Georgia, Inc.
  • Sickle Cell Foundation of Greater Montgomery, Inc.
  • Sickle Cell Foundation of MN
  • Sickle Cell Foundation, Inc.
  • Sickle Cell Medical Advocacy Inc
  • Sickle Cell Warriors of Wisconsin
  • Snake River Hemophilia and Bleeding Disorders, Associate
  • Southeast Alabama Sickle Cell Association Inc. (SEASCA)
  • Southwestern Ohio Hemophilia Foundation
  • St. Jude Affiliate Clinic at Novant Health Hemby Children's Hospital- Pediatric Hemophilia Treatment Center
  • Supporters of Families with Sickle Cell Disease, Inc. 
  • Tennessee Hemophilia and Bleeding Disorders Foundation
  • Texas Bleeding Disorders Coalition
  • The Coalition for Hemophilia B
  • The Hemophilia Association of New York
  • The National Medical Association
  • The Sickle Cell Association Of New Jersey
  • Tri-State Bleeding Disorder Foundation
  • United States Hemophilia Treatment Center Network
  • Uriel E. Owens Sickle Cell Disease Association of the Midwest
  • Utah Hemophilia Foundation
  • Virginia Hemophilia Foundation
  • Western New York Bloodcare
  • Western Pennsylvania Bleeding Disorders Foundation

Additional Resources:

About the American Society of Hematology
The American Society of Hematology (ASH) (hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. Since 1958, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology.

The Blood journals (https://ashpublications.org/journals) are the premier source for basic, translational, and clinical hematologic research. The Blood journals publish more peer-reviewed hematology research than any other academic journals worldwide.

Contact:
Melissa McGue, 202-552-4927
mmcgue@hematology.org