A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders

J.R. Baker, S.O. Crudder, B. Riske, V. Bias and A. Forsberg

American Journal of Public Health, 2005, vol. 95, issue 11, 1910-1916

Abstract: People with rare, inherited chronic health conditions, such as hemophilia, face added physical, social, emotional, and fiscal challenges beyond those that are common to more prevalent chronic conditions. In 1975, a partnership among clinicians, consumers, and government agencies created a nationwide regional health delivery system that increased access to clinical care, prevention, and research, thereby improving health outcomes for people with hemophilia in the United States. Today, more than 130 Comprehensive Hemophilia Diagnostic and Treatment Centers in 12 regions serve 70%-80% of the nation's hemophilia patients. Health care leaders and advocates for other rare, expensive, chronic disorders may find that regionalization improves survival and reduces disability among affected populations. However, diverse and stable resources are needed to sustain such a model in our profit-oriented US health care arena.

Date: 2005
References: Add references at CitEc
Citations:

Downloads: (external link)
http://hdl.handle.net/10.2105/AJPH.2004.051318

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:aph:ajpbhl:10.2105/ajph.2004.051318_7

DOI: 10.2105/AJPH.2004.051318

Access Statistics for this article

American Journal of Public Health is currently edited by Alfredo Morabia

More articles in American Journal of Public Health from American Public Health Association
Bibliographic data for series maintained by Christopher F Baum ().