Developing a systematic approach to make the best care even better.

The NHPCC is working with our partners to align strategic efforts around projects that address our national priorities as identified in the national needs assessments and Maternal and Child Health Bureau (MCHB) core measures. The projects strive to increase access to care for underserved members of the blood disorders population and to improve the care delivered once a person is engaged with the HTC system of care.

The NHPCC collaborates with the regional hemophilia networks (RHNs), the Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC), and the National Heart, Lung and Blood Institute (NHLBI) to report on blood disorder-specific measures as part of the Healthy People national agenda for improving health in the United States. Healthy People provides science-based, 10-year objectives for improving the health of all Americans.

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Healthy People 2030: Rare Bleeding Disorders Elevated on the National Health Agenda with Commitment from National Hemophilia Program Coordinating Center and Treatment Centers

During this Bleeding Disorders Awareness Month, the U.S. Hemophilia Treatment Center Network (USHTCN) and the National Hemophilia Program Coordinating Center (NHPCC) recommit to addressing the health challenges faced by the bleeding disorders community as outlined in Healthy People 2030 (HP2030).

Bleeding Disorders, A National Priority
Hemophilia has recently been named one of only two rare, bleeding disorders in HP2030, identified as a pressing public health issue alongside conditions such as cancer, diabetes and heart disease. Released by the U.S. Department of Health and Human Services in August 2020, HP2030 is a focused list of national objectives that aims to track and improve the health and well-being of society over the next decade. One of these priorities, BDBS-01, will strive to reduce the proportion of people with severe hemophilia who have more than four joint bleeds per year. Inclusion of BDBS-01 is significant for the hemophilia community. Hemophilia is a chronic bleeding disorder that primarily affects males, with bleeding events that result in significant pain, and may lead to hospitalization, disability, and days missed from work and school.

“Inclusion of bleeding disorders as a priority on the national health agenda is an important achievement and has resulted from a coordinated, dedicated advocacy by our community,” said Amy Shapiro, MD, CEO and co-medical director at the Indiana Hemophilia & Thrombosis Center, Inc., a member HTC within the Great Lakes Regional Hemophilia Network. “Together with our federal partners and treatment centers across the country, we are committed to achieving this goal.”

Working Together to Achieve Better Patient Outcomes
Data on BDBS-01 is gathered at over 140 HTCs in the U.S. through the Community Counts: CDC Public Health Surveillance Project for Bleeding Disorders on individuals of all severity of disease. HTC diligence has assisted in elevating these chronic conditions to a level of national public health awareness. The NHPCC, in collaboration with the Health Resources and Services Administration, will use these data to report on HP2030 progress, increase understanding of bleeding disorders to improve health, advocate for enhanced policies, and work towards enriching patient quality of life.

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Healthy People 2020

Each decade since 1990 when data was first reported, Healthy People has identified various health quality indicators to measure and improve. Blood disorders were included for the first time as part of the Healthy People 2020 (HP2020) quality indicators, a significant step in recognizing blood disorders as a national health priority. HP2020 data for the first four national blood disorder measures below was gathered at 146 HTCs across the country through Community Counts: CDC Public Health Surveillance Project for Bleeding Disorders:

  • BDBS-15 Von Willebrand Disease
  • BDBS-16 Joint Disease
  • BSBS-8 High School Completion
  • AH-5.6 Absenteeism
  • DH-5 Transition Planning (data source was the Patient Experience of Care Survey)

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Technical Assistance
Other national priorities that the NHPCC has addressed are listed below, along with various technical assistance resources.

340B Drug Pricing Program

Genetics

Staff Development

  • Orientation for HTC Staff Guidelines

Telemedicine


The National Hemophilia Program Coordinating Center is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award to the American Thrombosis and Hemostasis Network totaling $800,000 with 0 percentage financed with nongovernmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.