Western States/Region IX

WESTERN STATES REGIONAL HEMOPHILIA NETWORK

Representing 14 Hemophilia Treatment Centers in California, Guam, Hawaii, and Nevada, providing Comprehensive diagnostic, treatment, prevention, research, and cost effective pharmacy services for a longer, healthier life.

Region IX
History

In 1975, through advocacy efforts led by hemophilia treaters and parents affiliated with the consumer advocacy organization and the National Hemophilia Foundation (NHF), and based on the experience of early novel multidisciplinary approaches in Britain and California, Congress provided support to fund 26 comprehensive hemophilia specialty clinics through Health, Education, and Welfare, now the U.S. Department of Health and Human Service Maternal and Child Health Bureau (MCHB).

Early studies verified that HTC-based care drastically reduced many hemophilia-related physical and economic consequences, including days hospitalized, number of hospital visits, average length of hospital stay, out-of-pocket expenses, unemployment, and overall costs.

What do we provide?

Federally supported Hemophilia Treatment Centers (HTC) in Region IX belong to a nationwide network of over 140 Centers that use multidisciplinary teams of blood disorder specialists to provide expert comprehensive diagnosis, medical care, outreach, education, outcomes monitoring, surveillance, and prevention services to people with hemophilia, Von Willebrand Disease, and related conditions.

What are the benefits?

Serving nearly 7,000 residents of California, Hawaii, Nevada and Guam, HTC care results in longer, healthier lives, with lower medical costs. HTC care is associated with 40% reductions in mortality and bleed-related hospitalizations, as well as increased medically supervised home infusion, fewer days lost from work and school, increased employment, and reduced overall cost of care.

HTC Teams Include:

  • Hematologists
  • Nurses
  • Social workers
  • Physical therapists
  • Orthopedists

For HIV and Hepatitis, Other Specialists in the Field

  • Infectious disease
  • Immunology
  • Gastroenterology
  • Psychology
  • Nutrition
  • Health education

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Other Facts

  • HTCs promote comprehensive care and prevent blood disorder complications to achieve goals set by the Federal Centers for Disease Control and Prevention and the Maternal and Child Health Bureau. Services are provided in line with National Hemophilia Foundation recommendations.
  • HTCs also coordinate care with dentists, genetic counselors, obstetrician/gynecologists, and primary care practitioners, and they educate school personnel.
  • HTC care in the U.S. is organized into regions. Regional leadership provide fiscal and administrative oversight, grants management, capacity building, clinical education, technical assistance, evaluation, and liaison with related public and private health agencies at the local, state, and federal levels.

Cost of Care

Patients with hemophilia, like others with rare chronic conditions, require more frequent and intensive services from various medical disciplines than do average members of the public. Yet, reimbursement for hemophilia services is based on the experience of typical healthy citizens. Therefore, additional support is needed for special prevention, diagnostic, surveillance and treatment needs.

State funding helps pay hemophilia care expenses for most people in California and Hawaii. Nevada funds a program for persons up to age 21.

Clotting factor concentrate is very expensive (averaging $100,000 per year per adult patient), yet it is necessary to prevent and treat damaging and life-threatening situations. Without it, life spans would be shortened and patients would be disabled.

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