Providing a national system of collaboration to improve care.

In its coordinating role, the NHPCC fosters collaboration with Regional Leadership of the U.S. Hemophilia Treatment Center Network (USHTCN) through various channels. Routine interface through in-person meetings, phone and email correspondence, and a monthly teleconference allows NHPCC staff and Regional Leadership to discuss important topics, identify and support regional priorities, and build upon their long-standing, collaborative relationships.

Along with Regional Leadership, the project officer of the Health Resources and Services Administration’s (HRSA) National Hemophilia Program participates in the monthly teleconferences. In addition, the HRSA project officer shares updates on federal reporting requirements, policy and personnel changes, Healthy People measures, and other critical issues pertinent to both the NHPCC and regional hemophilia network (RHN) cooperative agreements. This standing venue allows for meaningful exchange between the regions, the NHPCC, and HRSA.

8 Regional Hemophilia Networks & Core Centers

The NHPCC serves as a bridge among the 8 HRSA-funded regional hemophilia networks throughout the United States. Each region is supported through a regional core center. The NHPCC is coordinating national efforts to standardize care throughout the networks and improve access to care. The ultimate goal is improving the national system of integrated care for persons with blood disorders.

For locations and more detailed information about each HTC, visit the ATHN Affiliate Directory.

The New England Region was formed in 2012 by a merger of Regions I & II for the Maternal Child Health Bureau Grant. The original Region II is comprised of NY, NJ, Puerto Rico, and the Virgin Islands and remains as the region funded via ATHN to perform the CDC Community Counts surveillance.

The New England Region has 22 comprehensive Hemophilia Treatment Centers (HTCs) serving NY, NJ, PR, ME, NH, VT, RI, MA, and CT. Participating in the CDC Community Counts surveillance in Region II are 13 centers in NY, NJ, and Puerto Rico.

As a core center, The Icahn School of Medicine at Mount Sinai works to ensure that individuals with hemophilia and other bleeding disorders and their families have access to appropriate hematologic, genetic, and other medical expertise and information in the context of a multi-disciplinary comprehensive care model that provides family-centered, culturally sensitive, high-quality care. The core center comprised of the Regional Director and Regional Coordinator oversees all grant activities and comprehensive services for the region.

Recent accomplishments and projects include:

  • Updating transition surveys for patients
  • Participating in Waves I & II of the QI pilot project
  • Developing multiple educational brochures for consumers

As a core center, the Children’s Hospital of Philadelphia (CHOP) works to ensure that individuals with hemophilia and other bleeding disorders and their families have access to appropriate hematologic, genetic, and other medical expertise and information in the context of a medical home model that provides family-centered, culturally sensitive, high-quality, and comprehensive care.

CHOP oversees the services provided by the Mid-Atlantic Region III HTCs and collaborates with the Maternal and Child Health Bureau (MCHB) and the Centers for Disease Control and Prevention (CDC) to improve treatment and support for people with hemophilia and other inherited bleeding and clotting disorders. Mid-Atlantic Region III HTCs are a valuable resource at the local, regional, and national level for information about bleeding disorders.

Recent projects and accomplishments include developing several tools and resources for transition such as:

  • Transition surveys for hemophilia patient ages 12-18
  • A transition retreat for teens and parents
  • Transition guidelines for thrombosis patients
  • Transition guidelines for providers
  • Thrombosis transition survey
  • Tips for parents to encourage independent care
  • Curriculum for female relative outreach
  • A brochure about the benefits of the 340B Drug Pricing Program

The Southeast Regional Hemophilia Network (SRHN) receives federal funding from the Maternal and Child Health Bureau and the Centers for Disease Control and Prevention to provide family-centered education, state-of-the-art treatment, research, and support services for individuals and families living with bleeding disorders.

A multi-disciplinary team of professionals delivers these services at Hemophilia Treatment Centers (HTCs) throughout the region. The core team includes an adult or pediatric hematologist, a nurse coordinator, a social worker, and a physical therapist. HTC services include medical and psychosocial assessment and monitoring, home therapy teaching and monitoring, orthopedic evaluation, infectious disease management, physical therapy, dental services, genetic counseling, rehabilitation and support services. The HTC team works closely with local health care providers to meet specific needs of persons with bleeding disorders, as well as to enhance the overall quality of the person's life by assisting with the prevention and management of complications associated with bleeding disorders.

Recent Southeast regional accomplishments include:

  • The Emory University/CHOA Comprehensive Hemophilia Program has developed a new program called TRANSIT™ to empower youth. This online platform will equip young people with the skills and knowledge they need to manage their care and treatment as they transition to adulthood. This project was funded in part by the National Hemophilia Program Coordinating Center (NHPCC) as a project of national significance.
  • Annual Technical Assistance and Training Meeting, an annual education symposium has been offered to the care providers and consumer representatives from the Southeast Region. The conference is designed to improve patient care for those served in the regions’ eight states. 

The mission of the Great Plains Region is to improve the health and health care of individuals with bleeding and clotting disorders in our region. We do this by providing educational materials and opportunities for patients and the medical professionals who treat them. Several educational items have been developed by the nurses and social workers in the region, which include:

  • Emergency care for patients with hemophilia
  • Emergency care for patients with von Willebrand disease
  • Several short von Willebrand disease brochures
  • Resources for seniors with bleeding disorders that address the issues they may face as they age

The Great Plains Region hosts 4 major meetings annually, including the Regional Providers Meeting, Mid-year Nursing/Psychosocial Meeting, Dare to Soar Girls Camp, and Women’s Retreat.

The Hemophilia Foundation of Michigan (HFM) serves as the Regional Core Center for the Great Lakes Region/Region V-East. HFM strives to improve the quality of life for all people affected by bleeding and clotting disorders. The treatments centers see patients with a wide variety of disorders including hemophilia, von Willebrand disease, other factor deficiencies, as well as other rare bleeding disorders and over 3,300 patients with clotting disorders.

Centers in the Great Lakes region actively participate in projects on national, regional, and local levels. We have worked with the National Hemophilia Program Coordinating Center on two Demonstration Projects of National Significance and the National Transition Quality Improvement Project. On a more localized level, our region has made a special effort to make outreach a priority. Outreach efforts have focused not only on locations, but also patient populations. Telemedicine has been integrated into patient care at several centers allowing for the HTC staff to provide care virtually anywhere in the state. Many of our centers hold specific women’s and girl’s clinics. These clinics are coordinated with other specialists to best fit the needs of their patients. Additional outreach clinics are held to reach the large Amish population in our region.

Great Lakes Hemophilia Foundation (GLHF) programs and services are designed to educate, support, and advocate for individuals and families with bleeding disorders by increasing public awareness, ensuring access to needed medical services, providing relevant information and resources, building a supportive community among individuals and families, and promoting choices that lead to optimal health and living life without limitations.

The Mountain States Hemophilia Network (MSHN) includes seven of the 10 largest states in geographic size in the United States and covers over 1.5 million square miles. This large geographic area brings challenges but also allows for a heavy reliance on regional partnerships and collaborations with consumers and providers who are dedicated to improving health and wellness in the bleeding and clotting disorders communities. The goals of the MSHN are as follows:

  • Provide and facilitate access to integrated, comprehensive care for all persons with bleeding or clotting disorders
  • Develop, enhance, and sustain collaboration and communication with patients with bleeding disorders and their families, as well as intra-regional and inter-regional partners and stakeholders
  • Support a system to monitor clinical outcomes and evaluate models of care by facilitating and maintaining strategies for regional quality improvement
  • Foster and maintain sustainability in the provision of services to persons affected by bleeding and clotting disorders
  • Advocate in collaboration with local, state, regional and national partners on behalf of populations served to ensure access to specialized integrated care and access to insurance coverage.

The MSHN is dedicated to supporting services to minorities and other underserved populations, supporting rural and frontier locations, improving access to care, and promoting sustainability and stewardship.

The Western region is comprised of 14 HTCs providing comprehensive diagnostic, treatment, prevention, education, outreach, surveillance, research, and cost-effective pharmacy services to over 9,500 persons with suspected or diagnosed bleeding and clotting disorders.

Demographics – Our region comprises 12-13% of the US population:

  • We are a racial/ethnic plurality: 43% of our HTC patients are Hispanic; 35% White (non-Hispanic); 13% Asian, Native American, or Pacific Islander; 3% African American; and 6% Multi-racial (Source: HTDS 2015).
  • Over half are primarily insured by public programs such as Medicaid, Children with Special Healthcare Needs, the Genetically Handicapped Persons Program (California), Medquest (Hawaii), or Medically Indigent Program (Guam) (Source: Regional Comp Care Dataset 2015).

Our projects of significance include:

  • 340B Drug Pricing Program – 13 of our 14 HTCs integrate clinical pharmacy into comprehensive clinical care, reinvesting savings back into the HTC to serve more patients and expand services.
  • State Policy Advocacy – Advising state health departments, in collaboration with hemophilia consumer-based organizations on policies and programs to ensure adequate reimbursement, and access to high-quality care.
  • Outreach – More than 2/3 of all HTCs have at least one outreach clinic at offsite locations to reduce geographic barriers. Hawaii has 4 clinics on outer islands; Nevada has five, including the Duck Valley Indian Reserve.
  • Research – Our region’s robust research portfolio in bleeding and clotting involves clinical trials (including gene therapy), cost of care and burden of illness, sexuality, point of care ultrasound, and the development of new therapies (e.g., Factor XIII).
  • The Center for Inherited Blood Disorders (CIBD), our regional core center, is one of 20 designated by HRSA to 340B “Peers” in the U.S. It is the only HTC with this distinction, representing the highest standards in 340B program quality and program integrity. Regional leadership is represented on the Steering Committee of the Patient Satisfaction Survey for the U.S. HTCN.