HIV/AIDS IN RURAL AMERICA
An Issue Paper Prepared by the National Rural Health Association-November 1997
Since the first reports of cases of AIDS in 1981, the Centers for Disease Control and Prevention (CDC) has monitored the epidemic in the United States. The cumulative total of AIDS cases reported through December 1996 was 581,429. Of these cases, 32,043, or 5.5 percent, were reported from nonmetropolitan statistical areas (non-MSAs). The Office of Management and Budget defines a metropolitan statistical area (MSA) as a county or group of counties that includes a city of 50,000 residents or an urbanized area with at least 50,000 people that is part of a county or group of counties with at least 100,000 people. Nonmetropolitan counties are all remaining counties. The cumulative deaths for the same period are 362,004. As of December 1996, there were 76,664 people living with HIV and 216,769 people living with AIDS in the United States (CDC, 1996). Other than the cumulative total from non-MSAs quoted above, the CDC does not publish rural statistics in their surveillance report.
The epidemic first became apparent in major cities, and efforts to fight it were concentrated in urban centers. More recently, the spread of the epidemic in rural America has been acknowledged in the public health arena. While the numbers are still small, there is evidence that cases are increasing rapidly in non-MSAs. According to the CDC, the number of AIDS cases in non-MSAs between 1991 and 1992 increased 9.4 percent as compared with 3.3 percent in MSAs of 50,000 to 500,000 population and 3.1 percent in MSAs with 500,000 and more. Non-MSAs, as a group, experienced a 69 percent increase in the rate of AIDS-defining opportunistic illnesses among men who have sex with men between 1989 and 1994. By comparison, the MSAs with more than 2.5 million people experienced only a 19 percent increase (CDC, 1995a). Between 1988 and 1990, the 25 counties with the highest rate of increase in AIDS cases were primarily rural counties with an average county population of 73,000. This can be contrasted with the early stages of the epidemic between 1982 and 1984, when the 25 counties with the highest rate of increase of AIDS cases had an average population of 1.1 million (Lam & Liu, 1994). Although most of the women with HIV/AIDS reside in larger cities, 6 percent of the female AIDS cases reported to the CDC during 1994 were residing in non-MSAs at the time of AIDS diagnosis (Gwinn & Wortley, 1996).
The CDC began reporting AIDS by nonmetropolitan area in spring 1991. Most states' data on rural areas is based on public health reporting. Such data may be influenced by the state's testing (anonymous or confidential), as well as approaches to partner notification and case finding. Rural residents may be more likely to travel to urban areas for HIV testing because of concerns about confidentiality. There also is evidence that rural residents are less likely to seek HIV testing. The 1991 National Health Interview Survey revealed that urban residents were 1.5 times more likely to have been tested for HIV and 1.4 times more likely to expect to have an HIV test. Compared to their urban counterparts, rural residents had a lower perception of their risk for HIV (Mainous, Neill, & Matheny, 1995).
Other studies indicate that rural HIV/AIDS patients tend to be diagnosed in later stages of the disease because their physicians do not consider them to be at risk for HIV (Calonge, Petersen, Miller, & Marshall, 1993; Miller, et al., 1995). This creates doubt as to the accuracy of data from rural areas. There also is debate about how many AIDS patients are infected in cities and return home to rural areas for care vs. those acquiring AIDS in rural America who then travel to urban areas for the high-tech treatment not available in the countryside. This is currently under study (Berry, 1993).
A team of CDC researchers interviewed 363 people reported to health departments to be living with HIV/AIDS in five rural areas of four southern states (Schable, Diaz, & Ward, 1996). Of the 213 patients, or 59 percent, who had lived outside the rural areas, 49 percent believed that they were infected in MSAs with fewer than 500,000 people, and 59 percent said that they had been diagnosed with HIV in another county or state. In a survey of adult HIV/AIDS patients conducted at the University of North Carolina Hospital, 52 percent of the rural patients thought that they had acquired HIV in a metropolitan area (Cohn, Klein, Mohr, Van der Horst, & Weber, 1994). Almost two-thirds of these patients were living out of state during the estimated time of HIV infection.
Studies of HIV/AIDS patients at university medical centers in eastern North Carolina and southeast Iowa revealed that 43 percent to 46 percent had migrated to these states and that 13 percent to 17 percent had been diagnosed with AIDS before moving (Davis, Cameron, & Stapleton, 1992; Rumley, Shappley, Waivers, & Esinhart, 1991). Other studies suggest that rural residents may travel to urban areas for HIV testing or medical treatment without changing their place of residence (Mainous & Matheny, 1996). Researchers have noted that rural HIV/AIDS patients often travel two or more hours to obtain medical care because they lack confidence in their local physicians, are unable to find a local physician who will see them, and are concerned about confidentiality (Mainous & Matheny, 1996; Rounds, 1988; Rumley, et al., 1991).
Rural HIV/AIDS patients also are less likely than urban patients to have public or private health insurance (Weslowski, Andrulis, & Martin, 1992). As a result, they may delay seeking care until they are in advanced stages of the disease and have significantly shorter survival times than their urban counterparts (Whyte, & Carr, 1992). Other service gaps and access barriers frequently noted in the rural HIV/AIDS literature include an inadequate supply of mental health and substance abuse counseling services, the lack of formal and informal support systems, and discriminatory attitudes (Berry, McKinney, & McLain, 1996; Parker, et al., 1992; Rumley, et al., 1991; Tucker, Pace, & Soth, 1991).
Of all the U.S. Census regions, the South has experienced the most rapid growth in AIDS cases. Between 1988 and October 1995, the southern states reported the largest numbers and the greatest proportionate increase (31 percent) in AIDS cases. In recent years, the South has led the nation in the percentage of adolescent and young adult AIDS patients who reside in small MSAs (50,000 to 500,000 population) and rural areas (CDC, 1995b).
The development of medical services in rural America has evolved in relation to local circumstances. For example, in a frontier area with a low number of cases, such as southeast Idaho, there is a shortage of primary care providers. Patients may have to travel long distances to access care because few of these providers are trained and willing to care for HIV/AIDS patients. Frontier areas find it difficult to establish cost-effective management programs. In a state such as Florida, public health has taken the lead in providing care. As a result, shorter distances to health care makes services more accessible, there are more providers willing to provide services, and there are sufficient cases to make service delivery more cost-effective.
FUNDING OF HIV/AIDS CARE
Initial funding for fighting the epidemic came from the federal government through appropriations administered by the Health Resources and Services Administration (HRSA). Appropriations began in fiscal year (FY) 1986 with $15 million for Health Services Demonstrations. These appropriations grew to $112 million in FY 1990. The Ryan White CARE Act was passed in FY 1991 and funded at $220 million. While there has been some overlap in funding since FY 1991, Ryan White funds have supplanted other HRSA programs. For FY 1997, Ryan White appropriations were $996 million. Cumulative HRSA funding since FY 1986 is $4.24 billion.
States also have appropriated funds. Fifty states and the District of Columbia spent almost $170 million in non-Medicaid funds in HIV-related patient care and support services during FY 1991. This represented a 38 percent increase over state-only funds appropriated for HIV-related medical and support services in FY 1986 (McKinney, Wieland, Bowen, Goosby, & Marconi, 1993). Some states, such as California, have adopted Title II funding formulas that give greater weight to rural areas. The other major source of funding for medical care for HIV/AIDS is Medicaid. It was estimated that one out of every four dollars spent on AIDS-related health care in 1992 would be covered by Medicaid at a total cost of $2.1 billion (McKinney, et al., 1993).
RYAN WHITE CARE ACT PROGRAMS
In August 1997, HRSA consolidated all of the HIV/AIDS programs into one bureau-the HIV/AIDS Bureau. Title I, administered by the Division of Service Systems, provides formula and supplemental grants to eligible metropolitan areas (EMAs) that are disproportionately affected by the HIV epidemic. These areas are eligible for Title I formula grants if they have a population of at least 500,000 and have reported more than 2,000 AIDS cases in the preceding five years. More than $1.4 billion has been awarded since FY 1991. In FY 1996, 49 EMAs received $372 million (HRSA, 1997).
Title II also is administered by the Division of Service Systems and provides formula grants to states, U.S. territories, the District of Columbia and Puerto Rico to provide health care and support services for people with HIV/AIDS. Grants are awarded based on the estimated number of living AIDS cases in the state or territory and the estimated number of living AIDS cases within the state or territory but outside of Title I EMAs. Title II funds only can be used for outpatient health care and support services. The legislation specifies minimum allotments of $100,000 for states with less than 90 living AIDS cases and $250,000 for all others. Funding requires that states provide therapeutics to treat HIV/AIDS under the AIDS Drug Assistance Program started in FY 1996. However, the amount or percentage is not specified. Since FY 1991, HRSA has awarded more than $863 million in Title II grants. In FY 1996 alone, $198 million was awarded and an additional $52 million was awarded in AIDS Drug Assistance Program funding (HRSA, 1997).
Title III(b) of the Ryan White CARE Act-the HIV Early Intervention Services Program-is administered by the Division of Community Based Programs. It supports outpatient HIV early intervention services for low-income, medically underserved people in existing primary care systems. Medical, educational and psychological services are designed to prevent the further spread of HIV/AIDS, delay the onset of illness, facilitate access to services and provide psychological support to people with HIV/AIDS. Since FY 1991, $299 million has been awarded under Title III(b).
In FY 1996 alone, $56.9 million was awarded to 151 facilities in 34 states, Puerto Rico and the District of Columbia. Approximately one-half was awarded to community and migrant health centers, while the remainder funded homeless programs, local health departments, family planning programs, comprehensive hemophilia diagnostic and treatment centers, Federally Qualified Health Centers and private nonprofits (HRSA, 1997).
The 1996 CARE act amendments authorize Title III planning grants of up to $50,000 to help public and nonprofit private entities plan for the provision of comprehensive primary health care services to people with, or at risk of, HIV disease. Legislation requires that preference be given to entities that provide primary care services in rural or underserved communities.
Title IV is a special grant program directed by the Division of Community Based Programs to coordinate access to research and HIV services for children, youth, women and families in a comprehensive, community-based, family-centered system of care. Since FY 1994-the first year of funding-$77 million in Title IV grants has been awarded. In FY 1996, $27.8 million was awarded to projects in 26 states, the District of Columbia and Puerto Rico. Eighty-two percent of the projects' clients are from poor, minority families with limited access to transportation and housing (HRSA, 1997).
Part F, another division of the 1996 CARE Act, consists of three programs. The first, administered by the Office of Science and Epidemiology, is the Special Projects of National Significance Program. This program supports the development of innovative models of HIV/AIDS care. These models are designed to address special care needs of individuals with HIV/AIDS in minority and hard-to-reach populations and are expected to be replicable and have a strong evaluation component. Since FY 1991, $60.6 million has been awarded in Special Projects of National Significance Program funding. In FY 1996, 51 grantees received more than $20.5 million (HRSA, 1997).
The second program within Part F-15 AIDS Education and Training Centers-has been established under the Division of Training and Technical Assistance. The centers are a national network that conduct targeted, multi-disciplinary education and training programs for providers in designated geographic areas. The goal of AIDS Education and Training Centers is to increase the number of health care providers who are educated and motivated to counsel, diagnose, treat and manage care for individuals with HIV/AIDS. To date, more than 600,000 providers have received training under this program (more than 100,000 in 1996). From FY 1987 to 1996, HRSA awarded $137 million in funding to the education and training centers. In FY 1996, they received $12 million in funding (HRSA, 1997).
The third component in Part F administers the AIDS Dental Reimbursement Program. The Division of Community Based Programs assists accredited dental schools and post-doctoral dental programs with uncompensated costs incurred in providing oral health treatment to HIV positive patients. Since FY 1994, $20.8 million has been awarded. In FY 1996, $6.9 million was allocated to support 102 eligible institutions (HRSA, 1997).
Reauthorization of the Ryan White CARE Act in 1996 requires grantees to conduct activities to enhance coordination across the Ryan White programs by mandating participation in the development of a Statewide Coordinated Statement of Need. The legislation requires each state's comprehensive HIV service plan describe to how the allocation and utilization of Title II funds are consistent with the statement of need, including "traditionally underserved populations and subpopulations" [Sec. 2617, (b)(2)(C)]. These statements must be submitted to the appropriate HRSA program office in final by March 31, 1998. Subsequently, the statement of need should be reviewed and updated as appropriate, or at a minimum of every three years.
HIV/AIDS SERVICES IN RURAL AMERICA
A literature review reveals that there are few meaningful statistics showing the extent of the epidemic and the health systems' response to it in rural America. No data were found on cases or people living with HIV/AIDS by county. Also, it is not clear whether or not adequate resources have been directed to rural America by the Ryan White CARE Act. According to one paper, funding for HIV/AIDS services from state and federal sources has gone primarily to urban areas, where incidence is higher (Graham, Forrester, Wysong, Rosenthal, & James, 1995). It is possible that only Title II, Title III and Part F Special Projects of National Significance Program dollars reach rural areas. HRSA currently is sponsoring a longitudinal study of people who receive medical care for HIV in rural areas as part of a larger HIV Cost and Services Utilization Study that is being conducted by the RAND Corp. through a cooperative agreement with the Agency for Health Care Policy and Research. By combining data from the rural and urban components of the study, the researchers will be able to develop estimates of the total care required by rural residents with HIV (Berry, McKinney, McLain, & Valero-Figueira, 1995).
The recent introduction of protease inhibitors into the armamentarium of drugs used to treat HIV infection is noteworthy in two ways. First, early trials show promise that, when used in combination with other drugs, the "AIDS Cocktail" for example, protease inhibitors can reduce the viral load to undetectable levels in the blood of patients. Second, however, the cost of this triple therapy is estimated to be $9,000 to $12,000 per year. The projected cost for the AIDS Drug Assistance program is $436 million a year. Protease inhibitors could bankrupt the system (Bartlett, & Moore, 1996). Early in 1997, 19 states had estimated a total shortfall in their drug assistance programs of $36 million. Many states are considering various plans to ration the use of protease inhibitors (Kelly, 1996). Fiscal limitations might result in the denial of these new drugs to the poor.
1. The NRHA affirms that education is fundamental to the prevention, control and treatment of HIV/AIDS. Accordingly, the NRHA will bring together a wide variety of public and private organizations to discuss, develop and implement three comprehensive groups of strategies relevant to rural communities. In this effort, the NRHA acknowledges that minority and special populations present particular challenges to such educational efforts and, accordingly, will focus attention on the needs of minority constituents residing in rural communities. The NRHA supports:
2. The NRHA supports the CDC collecting HIV/AIDS data by county or non-MSA and the appropriate dissemination of such data.
3. The NRHA urges HRSA to provide the yearly and cumulative funding distributions of Titles II, III and Part F Special Projects of National Significance of the Ryan White CARE Act Program to rural areas. The NRHA also urges the Agency for Health Care Policy and Research and HRSA to complete the RAND study.
4. The NRHA supports access to essential health care resources for all Americans, regardless of socioeconomic status, ethnicity, diagnosis or place of residence. This must include access to the currently expensive and clinically appropriate treatment that is essential for the preservation of the health and life of HIV/AIDS patients. Implementation will require many actions by many interests, including development of appropriate risk or alternative payment adjustment among risk-bearing payers. The NRHA urges the Health Care Financing Administration to "risk adjust" or otherwise adjust Medicare capitation payments and require states to adjust Medicaid capitation payments.
5. In coordination with the Department of Health and Human Services, the National HIV/AIDS Bureau and the Office of National AIDS Policy, the NRHA should convene a task force of experts to identify whether rural Americans have the same access to treatment for HIV/AIDS as Americans living in urban areas, and to make policy recommendations on how to increase access for those in rural America afflicted by HIV and AIDS.
6. The NRHA supports HRSA surveying states to those that are weighting their Title II formulas toward funding to rural areas and recommending a new Title II formula that would more proportionately distribute funds to rural areas.
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