For nearly 25 years, the Maternal and Child Health Bureau and the CDC have supported a regional network of over 130 Hemophilia Treatment Centers. These Centers provide diagnostic, preventive, surveillance and treatment services through multidisciplinary teams. This care has improved the health of persons with hemophilia by increasing life expectancy, and reducing mortality, hospitalizations, and days lost from school and employment. Until recently there were no organized hemophilia services in the six US affiliated Pacific jurisdictions. Neither clinicians nor patients were knowledgeable about the disorder. Preventive care was non-existent and treatment was crisis oriented. Third party payers did not cover modern therapies.
In 1996, the federal Hemophilia Program in Region IX initiated an intensive effort to develop hemophilia services in the US affiliated Pacific. A survey uncovered 60 clinicians, primarily from Guam, who reported patients with suspected or diagnosed hemophilia. The goal was to create local expertise among clinicians and patients, to initiate consumer advocacy, and to link the Pacific into the regional and national network. Targeted technical assistance and training has resulted in the development of a hemophilia infrastructure in Guam. This has lead to successful outcomes in clinician knowledge and practice, patient identification and education; Medicaid cost savings, consumer advocacy, insurance reform, participation in CDC surveillance programs, linkages to schools, and outreach to neighboring Saipan. The presentation will describe the roles of key agencies, infrastructure building methods, and outline the quantitative benefits to patients, clinicians and Medicaid.
Learning Objectives: At the session's conclusion, participants will be able to: 1. Outline three short and long term benefits to conducting an initial case finding survey as the first step in program development in the US Pacific. 2. Identify and describe the roles and responsibilities of key public/private agencies and players in capacity building in the US Pacific. 3. Articulate capacity building attitudes and methods that can lead to or thwart sustainable programs in the US Pacific
Keywords: Asian and Pacific Islander, Access to Health Care
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: 1. Federal Hemophilia Program sponsored by the Maternal and Child Health Bureau and Centers for Disease Control and Prevention, and its regional office in Region IX.
2. Departments of Health and Social Services in Guam and CNMI
3. Hemophilia Foundat
I have a significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Relationship: Salary of primary author is paid for by the Federal Hemophilia Program grants.