This series of case studies was designed to shed light on how HIV services are organized and delivered in rural areas with high and low AIDS prevalence. For each area, extensive descriptions are provided about the epidemiology of HIV/AIDS, the gaps in services, and the financing of services. Stigma and lack of practitioner knowledge about the treatment and management of HIV infection are found to hamper diagnosis and treatment. Because of the diversity of rural areas, a classification system was designed to help distinguish between rural areas with different prevalence rates and infected populations. The classification scheme can be used in HIV planning and technical assistance. This study provides a portrait of rural HIV network development patterns that can inform public policy.
This study was undertaken to help States enhance the quality, availability, and organization of services for rural residents with HIV. It was also intended to provide information to the Federal Government and Congress to use in designing and funding HIV programs in rural areas. The study examined (1) how different rural areas plan, organize, and deliver HIV-related services; (2) what gaps and barriers exist to providing care; and (3) how Title II grant funds can be used more effectively in developing rural HIV-related service networks. Title II of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 authorizes formula grants to the States to provide outpatient medical and support services to people with HIV and AIDS. In many States these grants are the only source of funding for services in lower incidence areas.
Although about 20 percent of Americans reside in rural areas, they account for only about 5 percent of total U.S. AIDS cases. However, the number of new cases in rural areas is growing faster than in urban areas. Little is known about the epidemiology of AIDS in rural areas or how these areas have organized to plan for and deliver HIV-related services. To obtain preliminary answers to these questions, the Bureau of Health Resources Development in the Health Resources and Services Administration (HRSA) funded a study of HIV-related service delivery in four rural areas.
According to the Centers for Disease Control and Prevention (CDC) classification system, AIDS cases in nonmetropolitan areas are classified as "rural." Rural areas exhibit great variation with respect to population density, proximity to urban areas, the prevalence of AIDS, and the populations most affected by HIV. There is great heterogeneity in AIDS prevalence (cases per 100,000 population) in rural areas.
At regional meetings, representatives of the South Atlantic and Mountain Census Divisions discussed the characteristics and needs of people with HIV/AIDS, the organization and delivery of HIV-related services, and the financing of HIV/AIDS care in rural areas of their States. They also helped develop an AIDS-specific typology for categorizing different rural environments, formulating study questions, obtaining information to design case studies, and developing the discussion guide for site visits. Information from the literature review also was used to develop the discussion guide. During the site visits, information was gathered on community attitudes toward HIV/AIDS, HIV-related service gaps and barriers, service utilization patterns, outreach activities, and funding mechanisms.
Case studies were used to investigate rural areas with dramatically different AIDS prevalence rates. The South Atlantic Census Division was selected for its high AIDS prevalence and high access to HIV-related services. The Mountain Census Division was selected for its low AIDS prevalence and low access to services. In each division, two sites were identified: the Mountain Division was represented by sites in southeast Idaho and southeast New Mexico, and the South Atlantic Division was represented by the Edisto Health District of South Carolina and the Treasure Coast area of Florida.
Each case study included (1) a literature review of the characteristics of rural residents with HIV/AIDS and rural HIV-related service delivery systems; (2) a review of HRSA grantees' applications, HIV service plans, and rural HIV service delivery models; (3) site visits, including interviews of State and local officials, service providers, people with HIV, community leaders, and others; and (4) a review of data from State and local programs, reports, and Census Bureau information.
The report provided extensive descriptions of the epidemiology of HIV/AIDS, HIV-related service networks, barriers and gaps in service, and funding mechanisms in the four rural settings. To distinguish among rural areas, a typology was developed to classify areas based on degree of rurality, prevalence of AIDS, and the epidemiological and demographic characteristics of the infected populations. The typology can be used to select study sites for epidemiological and health services research on rural AIDS and to analyze variations in the development and organization of HIV service networks. It also identifies key attributes of rural environments that can influence program implementation and the transferability of service delivery models.
HIV testing and counseling were provided in all settings, primarily in health departments. Reporting by name and partner notification varied considerably. Primary care in the low-HIV-prevalence and sparsely populated Mountain Census Division was usually provided by private practice physicians. In the South Atlantic Census Division sites, which had higher rates of HIV infection and a more concentrated population, most HIV-related services were provided through public health clinics and community health centers.
Stigma against HIV/AIDS patients, men who have sex with men, intravenous drug users, and persons with low-income status, as well as lack of practitioner knowledge about the treatment of HIV infection, appeared to limit the number of private practitioners willing to diagnose and treat AIDS patients in rural areas. In Idaho and New Mexico, stigma was compounded by a shortage of primary care physicians.
Gaps in services varied with the type of rural setting. Service gaps found in most rural settings were in primary medical care, dental care, mental health counseling, substance abuse services, professional training on the treatment and management of HIV infection, transportation, and housing. Hospital-based secondary and tertiary care were available at all sites, but accessibility was limited by lack of transportation, a shortage of well-trained staff, and patients' inability to pay. Implementing case management services was difficult in some rural areas because of widely dispersed clientele, lack of experienced providers, and an inadequate reimbursement system for rural case management. In the Treasure Coast area of Florida, where the number of AIDS cases is growing rapidly, the main gap was the limited capacity of the public health system to care for all patients and to intervene at an early stage of infection.
Financing mechanisms also varied. Funds for patient care came from Federal grants, State legislatures, local governments, private insurance, Medicaid, and Medicare. In Florida, most of the State HIV funds were going to urban areas. However, the Ryan White CARE Act, Title II
formula grants benefited rural areas by giving priority to reported AIDS cases in the most recent years rather than using cumulative totals. Some programs, such as the Edisto HIV clinic, were completely dependent on Federal funds. Medicaid was the major financing mechanism for low-income residents. Although the coverage was fairly comprehensive, the criteria for eligibility and benefits varied by State, and many low-income persons did not qualify.
Planning functions, using Title II funds, were assumed by some State governments and, in two areas, by regional HIV care consortia. Regional consortia in the Mountain States had problems recruiting members because of the large distances between communities. The increase in rural AIDS cases suggests that more funding is needed to build a systematic body of knowledge about HIV infection in rural populations and to plan and develop rural HIV-related service delivery systems.
Use of Results
The case studies identified two distinct approaches to providing medical care to rural residents with HIV: (1) an HIV clinic, located in a rural health department or community health center, that develops cooperative working agreements with physicians in private practice, and (2) care provided by primary care physicians who are linked with a medical school or rural-based regional care facility for training and backup consultation. Such regionalized approaches to HIV service delivery make it easier for rural residents to access services and appear to be more cost effective than urban-based outreach programs. The case studies also documented the need to place more emphasis on HIV training and education in rural areas in order to create more positive environments for the development of medical and support services. Targeted Federal funding, through the Ryan White CARE Act and other programs,
can help rural areas plan for the development of HIV services and experiment with new ways of delivering HIV care.
The study's findings and recommendations are being used to design a national study of HIV care in rural areas that will be funded by HRSA through an interagency agreement with the Agency for Health Care Policy and Research (AHCPR). The rural study will be integrated into the design of a larger HIV Cost and Services Utilization Study that AHCPR is funding through a cooperative agreement with the RAND Corporation. A probability sample of 500 rural residents with HIV will be interviewed at two time points about their use of health and support services, barriers to care, unmet service needs, and satisfaction with service quality. Case study findings also are being used to formulate HRSA policies on rural HIV care and to provide technical assistance to States with large rural populations.
Not yet published.
Bureau of Health Resources Development, Health Resources and Services Administration
Katherine Marconi, Ph.D.
Office of Science and Epidemiology
Bureau of Health Resources Development
Health Resources and Services Administration
Room 7A07 Parklawn Building
5600 Fishers Lane
Rockville, MD 20857
(301) 443-6560 Fax: (301) 443-2511
David E. Berry, Dr.P.H.
University of Nevada, Las Vegas, NV