Hemophilia is a rare, inherited bleeding disorder affecting as many as 40,000 individuals, mostly males, in the United States.
If left untreated, hemophilia can cause uncontrolled bleeding and is associated with
- High direct costs from hospitalizations, outpatient visits, and drug treatments
- High indirect costs from diminished work productivity and being absent from work and school
Our work in this area
We want to promote coordinated, comprehensive, multi-disciplinary services and care.
We provide grants that help establish and maintain regional networks of Hemophilia Treatment Centers (HTCs) across the United States. These HTCs provide comprehensive services. Since 2012, HTCs have treated 91.5% of the people diagnosed with hemophilia and related blood disorders who need these services.
Program structure
We divide the program into two parts:
Eight Regional Hemophilia Networks (RHNs)
Each awardee maintains a regional network of HTCs. HTCs are subrecipients of the grants we award.
The purpose of the RHN is to strengthen the reach and impact of HTCs by:
- Building comprehensive care teams
- Using the best available research to inform how care is given
- Putting into practice quality improvement initiatives
- Providing capacity building expertise
National Hemophilia Program Coordinating Center (NHPCC):
The NHPCC support RHNs and HTCs through:
- Targeted TA to awardee to help them coordinate, evaluate, and improve the work
- Tracking national, regional, and patient-level data to assess patient outcomes
- Providing an ongoing forum for education, communication, and collaboration. This helps RHN and HTC practitioners improve care to patients and implement best practices
RHNs are a 340B covered entity
RHNs are frequently part of the 340B Drug Pricing Program. Awardees and their subrecipients earn program income on hemophilia factor drug sales. HRSA has twenty-two 340B covered entities.
Resources for grantees
Legislative Authority (law supporting this work is at 501(a)(2))
Guidance on Monitoring Standards for RHN and HTC awardees and subrecipients
Our hemophilia work in broader context
- We oversee–in collaboration with the National Heart, Lung, and Blood Institute – the Healthy People 2030 Blood Disorders Dashboard.
- The HTCs partner with the American Thrombosis and Hemostasis Network (ATHN) on a database of patient health information that communities can use for research.
- The Centers for Disease Control and Prevention (CDC) Community Counts is a public health monitoring program to gather and share information about common health issues, medical complications, and causes of death that affect people with bleeding disorders cared for in U.S. Hemophilia Treatment Centers (HTCs).