HIV Testing and HIV/AIDS Treatment Services in Rural Counties in 10 Southern States: Service Provider Perspectives

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1 ORIGINAL ARTICLE in 10 Southern States: Service Provider Perspectives Madeline Sutton, MD, MPH; 1 Monique-Nicole Anthony, MPH; 1,2 Christie Vila, PhD; 3 Eleanor McLellan-Lemal, MA; 1 & Paul J. Weidle, PharmD, MPH 1 1 Centers for Disease Control and Prevention, Atlanta, Georgia 2 Northrop Grumman Corporation, Information Technology, Atlanta, Georgia 3 Florida International University, Stempel School of Public Health, Miami, Florida Abstract The authors thank Dr. Alan Greenberg, Dr. Lisa Fitzpatrick, Dr. Scott D. Holmberg, Carmen Villar, Alliances of Quality Education, and the survey respondents, each of whom helped make this study possible. The authors also thank Dr. Lisa Fitzpatrick for her critical review of the manuscript. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. For further information, contact: Madeline Y. Sutton, MD, MPH, Epidemiology Branch, Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, 1600 Clifton Road, MS E-45, Atlanta, GA 30333; msutton@cdc.gov doi: /j x Context: Forty percent of AIDS cases are reported in the southern United States, the region with the largest proportion of HIV/AIDS cases from rural areas. Data are limited regarding provider perspectives of the accessibility and availability of HIV testing and treatment services in southern rural counties. Purpose: We surveyed providers in the rural south to better understand: (1) the accessibility and availability, and (2) the facilitators and barriers of HIV testing and treatment services. Methods: All county health departments (N = 326) serving populations of <50,000 persons, within 10 southern states, were mailed surveys. Responding health departments identified up to 3 HIV testing sites and up to 3 HIV treatment sites to which they refer clients. Findings: Overall, 243 of 326 (75%) health departments, 133 of 250 (53%) HIV testing sites, and 73 of 152 (48%) HIV treatment sites responded to the surveys. The number of testing sites per county ranged from 0 to 20; the number of treatment sites ranged from 0 to 4. An average distance of 50 miles for clients to travel for HIV treatment was reported by health department respondents as a barrier. Facilitators of HIV testing were (1) integrating HIV testing into other health services; (2) using rapid HIV testing; and (3) establishing easily accessible HIV testing locations and free testing services. Conclusion: Providers perceive that distance from local health departments to HIV treatment sites presents a barrier to HIV care for their clients. Future studies should ascertain clients perspectives to ensure appropriate service provisions. Key words Access to care, health disparities, health services research, rural South, HIV/AIDS services. In 2007, an estimated 40% of persons living with Acquired Immune Deficiency Syndrome (AIDS) in the United States resided in the South. 1 Additionally, of all AIDS cases among US adults and adolescents in rural areas, 67% were reported from the South, followed by 14% from the Midwest, 12% from the Northeast, and 7% from the West. 2 In southern rural areas, African Americans were disproportionately represented in the number of residents and in the number of AIDS cases almost 30% of residents and 57% of AIDS cases in The disproportionate impact of HIV/AIDS on African Americans in the rural South is consistent with the nationwide pattern: African Americans constituted 13% of the population but accounted for an alarming 50% of HIV/AIDS cases in These data suggest a compelling need for better characterization of the HIV/AIDS epidemic and of the accessibility and availability of services in the rural South. 240 The Journal of Rural Health 26 (2010) c 2010 National Rural Health Association

2 Sutton et al. The HIV/AIDS epidemic in the rural South is complex and is heavily influenced by poverty, decreased access to health care, fewer HIV/AIDS-experienced providers, HIV-related stigma, and the educational, historical, and structural challenges that can create additional barriers to HIV testing or treatment services. 3-5 In addition, African Americans in the rural South are disproportionately affected by sexually transmitted diseases, including syphilis and gonorrhea, and by concurrent sexual partnerships, both of which can increase the transmission of HIV. 6-8 Efforts to better understand the epidemic in the rural South will also improve our understanding of the racial/ethnic disparities in disease rates in the region. The wide geographic dispersion of rural residents adds to the complexity of planning and delivering HIV testing and treatment services. Data suggest that most rural residents living with HIV seek medical care in nearby urban settings, primarily because of a perceived lack of adequate medical infrastructure and a perceived lack of confidentiality among community members, including family, friends, providers, and pharmacists. 3,9-13 Additionally, persons living with HIV in rural areas disproportionately report several barriers when compared to their urban counterparts: the need to travel long distances to access services; a lack of adequately trained personnel; having to rely on providers who see fewer HIV-infected clients; a lack of public transportation; decreased access to highly active antiretroviral treatment agents; and community stigma toward persons living with HIV. 14,15 However, data are lacking regarding the availability of HIV testing and treatment services from the perspective of those who provide these services in the rural South. Our purpose was to survey primary public-sector service providers and referred public and private HIV providers in the rural South to better understand their perspectives on (1) the accessibility and availability of HIV testing and treatment services, and (2) the facilitators and barriers related to these services. Methods A descriptive cross-sectional survey of service providers in rural counties in 10 southern states was conducted during The 10 states were Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and Virginia, which are classified in US census reports as the Deep South and include 325 counties with populations of <50,000. Three types of surveys were administered during 2004: (1) a general health department survey, which was mailed to each of the 326 health departments in the 325 rural counties (1 county in Louisiana had 2 health departments); (2) an HIV testing survey, which was mailed to 250 sites (eg, previously identified health departments, private doctors offices, community-based organizations, and local outreach centers) referred by the health departments that responded to the first survey; and (3) an HIV treatment survey, which was mailed to 152 sites (eg, previously identified health departments, academic treatment centers, and private doctors offices) referred by the health departments that responded. All 3 surveys encompassed county demographics, the availability of HIV testing and treatment services, and facilitators and barriers related to accessing HIV services. Specific standardized questions asked about HIV testing included inquiries about county HIV testing locations, approximate numbers of HIV tests administered annually, numbers of persons who received results, and average distance travelled by clients to reach testing locations. Standardized HIV treatment questions included inquiries about numbers of persons treated in the past year, average distance to reach treatment sites, and accessibility by way of public transportation. Survey respondents were directors, program managers, or main contacts for HIV-related referral services, such as a nurse administrator or an HIV coordinator. Eligible survey participants were identified during the process of creating the rural county health department database for this survey. Survey respondents and alternates were verified as the appropriate contacts by regional administrators. In an effort to increase the response rate, follow-up phone calls were made and messages were sent to health department leads if the general health department surveys were not returned by the requested date. Each survey instrument also included 3 open-ended questions: (1) What can you identify as barriers to HIV counseling, testing, treatment, and education in your health department district? (2) What factors or programs have facilitated or improved access to HIV testing and/or treatment in your area? (3) Does your county have any innovative programs in place that have improved access to HIV testing and/or treatment? The open-ended responses were analyzed using Analysis Software for Word-based Records (AnSWR), version 6.4 (developed by the Centers for Disease Control and Prevention [CDC]; see The open-ended responses were independently coded by 2 analysts who used a standardized iterative approach. Intercoder agreement was assessed: discrepancies were discussed, the codebook was revised, and the data were recoded. Binary matrices were created in AnSWR and imported into UCINET 6 (Analytic Technologies, Lexington, KY), where Johnson s hierarchical clustering method 16,17 was used to help interpret coding themes and patterns. Visual Basic 6 (Microsoft Corporation, Redmond, WA) software was used for the database design for this study. The Journal of Rural Health 26 (2010) c 2010 National Rural Health Association 241

3 Sutton et al. Descriptive outcomes and response frequencies were calculated by using Statistical Analysis Software, version 9.1 (SAS Institute, Inc., Cary, NC) and are reported by mean, median, and range. Finally, to more fully describe the rural counties included in our survey, we compared county-level data from the US Census Bureau 18 and data from CDC s HIV/AIDS Reporting System (HARS). This provider survey was reviewed, approved and designated as research not involving human subjects by the institutional review board (IRB) of the National Center for HIV/AIDS, Viral Hepatitis, STD, & TB Prevention of the CDC. The Office of Management and Budget reviewed and approved the survey (OMB ). Results Health Department Surveys Of 326 rural county health departments that received mailed surveys, 243 (75%) responded (Figure 1). Response rates ranged from 45% in North Carolina to 100% in South Carolina (Table 1). Except in Tennessee, the rural counties surveyed were disproportionately African American (Table 1), and except in Florida, a substantial number of residents lived below the poverty line. Of health department survey respondents, 35 of 243 (14.4%) were not aware of any locally available HIV testing services. No demographic differences were noted between counties that reported and did not report available HIV testing services. Health department respondents estimated a median of 2 (range, 0-20) HIV testing sites per county (including the health department), 20 (range, 0-200) HIV tests each month, and 0 (mean = 2 and range, 0-27) providers per county assigned to HIV testing and treatment services. Health department respondents estimated an average of 8 miles from the health department to the nearest HIV testing site, unless the testing site was on-site at the health department. The median and mean numbers of HIV treatment sites per county were 0 and 2, respectively (range, 0-4). The estimated median distance to HIV treatment services was over 50 miles (range, miles), reflecting the fact that HIV-infected residents are often referred to HIV specialists in cities that are not proximal to their local health departments. Testing Surveys Surveys were also received from 133 of 250 (53%) testing sites referred by health departments. Of these testing site respondents, 87% reported that the health department is the main location for HIV testing (Table 2). Of the 133 testing sites, 93 (70%) performed testing without a charge; 37 (28%) charged a fee, which averaged $20 per HIV test; and 3 sites did not respond to this question. Of the 133 sites, 68 (51%) reported that they used standard HIV testing; thus, clients needed to return for results after 2 weeks. For the average estimated 327 HIV tests administered per county in 2004, 156 tests (48%) had documentation of people returning for their results. Respondents estimated that 3 tests per rural county (1%) were reported as HIV-positive in There was actually 1 positive result per rural county for Arkansas, Georgia, Louisiana, and Tennessee and 6-8 positive results for Florida, South Carolina, and Virginia. Of the responding 133 HIV testing sites, 77% reported accessibility by public transportation. Thirty-three (25%) reported providing outreach services, including mobile vans, to facilitate access for rural clients; 17 (13%) reported offering transportation to those in need. Treatment Surveys Of the 152 treatment sites referred by health departments, 73 (48%) completed the survey. Of those, 42 (57%) reported on-site pharmacy services, 29 (40%) provided care in public HIV/STD clinics, and 45 (62%) reported on-site social work and case management services (Table 3). A total of 51 (70%) rated their sites as very or somewhat accessible. A median of 14 (range, 0-1,250) HIV-infected persons per rural county received treatment in 2004; of those in treatment, 66% were African American. However, because many of the larger HIV treatment sites were in cities (not in the counties from which the clients were referred), the respondents included HIVinfected persons from nearby towns in their estimates. According to HARS data, the estimated cumulative number of persons living with HIV/AIDS through 2004, per rural county surveyed in our study, was 26, of whom 14 were African American. Open-Ended Survey Questions Of 449 respondents (health departments, testing sites, and treatment sites), 382 (85%) completed the 3 openended survey questions. There were no differences, by type of site, in the patterns of responses. Analysis of coded responses revealed that provider respondents perceived 4 barriers to HIV counseling, testing, treatment, and education for clients: (1) distrust of system privacy and confidentiality; (2) an inadequate service infrastructure affecting HIV service delivery and utilization; (3) client attitudes toward HIV; and (4) the travel distance to sites that provide HIV-related services. The first 3 themes predominated, and providers expressed these concerns in greater detail compared to the fourth theme. 242 The Journal of Rural Health 26 (2010) c 2010 National Rural Health Association

4 Sutton et al. Figure 1 Map of 325 Rural Counties in 10 Southern States Selected for Survey Mailings and the 243 Counties that Responded to the Survey This map highlights the 325 rural counties (population <50,000) surveyed in the 10 southern states. The 243 counties depicted in dark gray provided survey responses. Regarding the first barrier, respondents expressed perceptions of clients lack of trust in system privacy and confidentiality. Open-ended responses emphasized the potential for inadvertent breaches of confidentiality or anonymity that may occur when a health department is located in a small town or a rural community. Clients were thought to be concerned with being identified entering or exiting an HIV testing facility or being recognized by health department staff. Some also suggested that local residents may be concerned about HIV-related stigma. Regarding the second barrier, respondents noted specific infrastructure challenges, such as lack of funding for HIV outreach, prevention, and treatment services; lack of staff training; a dearth of HIV and infectious disease specialists; lack of transportation services; and lack of supplements or reimbursements to help with the cost of treatment. The Journal of Rural Health 26 (2010) c 2010 National Rural Health Association 243

5 Sutton et al. Table 1 Demographic Summary of 325 Rural Counties in 10 Southern States and Health Department Survey Respondents (n = 243), 2004 Rural HDs Responding Population of Residents below African County HDs to Survey Rural Counties Poverty Level Americans Hispanics State (Total No.) (No.)% (Median) % % % Alabama 28 (21) 75 21, Arkansas 37 (22) 59 15, Florida 18 (17) 94 16, Georgia 61 (43) 70 11, Louisiana 17 (14) 82 16, Mississippi 39 (38) 97 15, North Carolina 29 (13) 45 19, South Carolina 11 (11) , Tennessee 36 (30) 83 17, Virginia 49 (33) 67 15, Total 326 (243) 75 Department survey respondents (n = 243), Note: One of the 325 rural counties had 2 health departments. Regarding the third barrier, respondents reported that efforts to heighten HIV awareness and prevention were hampered by client attitudes toward HIV, lack of education about HIV transmission and communicability, and the tendency to underestimate personal risk factors for HIV infection. Some respondents mentioned that educational and prevention efforts were hindered by religious and moral objections to HIV education. Respondents also stated that inadequate knowledge of HIV and indifference to prevention messages contributed to inaccurate perceptions of personal risk factors. According to our survey respondents, the main facilitators of access to HIV testing were (1) integrating HIV testing into other health services or programs; (2) rapid oral HIV testing, along with community health education and outreach testing activities; and (3) establishing Table 2 Characteristics of 133 HIV Testing Sites in Rural Counties in 10 Southern States, 2004 Type of HIV Testing Site N (%) Public health county clinic multi-service 116 (87) Public health county clinic STD/HIV services only 2 (1) Private HIV clinic or medical office 4 (3) Hospital 5 (4) Other 6 (5) Services for Persons Diagnosed HIV Positive N (%) to Increase Access to Care Call and link patient to the clinic directly 75 (56) Give client provider phone list 36 (27) Refer client to an onsite case manager 78 (59) Refer client to a case manager at an outside agency 40 (30) Follow-up with client to document if they accessed 79 (56) an HIV care and treatment site convenient, easily accessible HIV testing locations as well as free HIV testing services. Respondents described facilitators of access to HIV treatment that were most pertinent to sites receiving Ryan White CARE Act funds (the United States largest federally funded care and treatment program for people living with HIV/AIDS) and the ability to use these funds to increase the availability of medications. Some respondents also reported a positive correlation between treatment access and provision of case management and travel support such as transport services, travel vouchers, and gasoline reimbursement. Table 3 Characteristics of 73 HIV Treatment Sites in Rural Counties in 10 Southern States, 2004 Types of Services Provided to Client per HIV Care N (%) and Treatment Site Pharmacy services 42 (57) Counseling services 45 (62) Social work and case management services 52 (71) Transportation services 31 (45) Type of HIV Care and Treatment Site N (%) Private physician office, mainly or exclusively HIV 1 (1) Private physician office, general medicine 2 (3) Public HIV (and/or) STD clinic 29 (40) Private/university HIV clinic 2 (3) Hospital outpatient clinic 4 (5) Other 35 (48) Accessibility of the HIV Care and Treatment N (%) Sites to Clients Served Extremely accessible 23 (31) Somewhat accessible 28 (38) Not very accessible 13 (18) Completely inaccessible 9 (12) 244 The Journal of Rural Health 26 (2010) c 2010 National Rural Health Association

6 Sutton et al. In addition to specifying the facilitators described above, respondents mentioned many innovative programs and services to increase the number of persons who seek HIV testing, including (1) HIV testing outside traditional health care settings; (2) ensuring that HIV education programs conducted by the local health department, community-based organizations, and faith-based groups are credited with improving access to testing; (3) walk-in HIV testing; (4) full-day testing services 5 or more days a week; (5) providing transportation services; 6) peer counselors; and (7) HIV testing in correctional facilities. Respondents reported that the addition of disease specialists, case managers, community health educators, and community partnerships helped strengthen the delivery of HIV testing and treatment services in rural areas. Discussion According to service provider survey respondents, HIV testing services were available and accessible in most counties, but accessing available HIV treatment services presented a challenge for many clients. Health care providers perceived the main treatment barriers as (1) distrust of system privacy and confidentiality; (2) an inadequate service infrastructure affecting HIV service delivery and utilization; (3) client attitudes toward HIV; and (4) the travel distance to sites that provide HIV-related treatment services. The main facilitators perceived by the service providers included (1) integrating HIV testing into other health services or programs; (2) rapid oral HIV testing, along with community health education and outreach testing activities; and (3) establishing convenient, easily accessible HIV testing locations as well as free HIV testing services. Although responding county health departments most often reported 2 HIV testing sites being available per county, the majority of responding county health departments also reported zero HIV treatment sites or HIV providers in their counties. Health department respondents reported that many clients were referred to distant sites for HIV treatment, and this was described as a barrier for clients who needed HIV treatment services. In regard to accessibility, some perspectives differed by type of HIV treatment respondent site. For example, health department providers reported that their clients would have to travel 50 miles from the health department to the nearest treatment facility; the treatment facilities reported much shorter distances. The providers at treatment sites based their perception of accessibility on information about their clients, many of whom may have been referred because they live near the facility. HIV treatment facilities may be less likely to see rural residents who are from more remote areas and are experiencing difficulties related to travel. The health department, as the first line of HIV services, likely interacts with many clients who are experiencing such difficulties and who request information about the locations of other treatment facilities. While travel distance to remote HIV treatment sites was described by providers as one barrier for clients, other barriers described by providers included rural residents concern about privacy and confidentiality, lack of HIV updates and training for provider staff members, and client attitudes toward HIV. In small, rural community settings, underscoring the importance of confidentiality with provider staff and clients is vital for any successful HIV testing program or HIV treatment service. 19 Improved, regular HIV testing and treatment trainings are also needed for providers in the rural South so that providers will feel better equipped to deal with HIV services for clients. 19 Changing client and provider attitudes about HIV will require more open, honest dialogue about HIV prevention, transmission, and treatment from providers and key community leaders in the rural South. 19 Provider respondents mentioned rapid HIV testing and free HIV testing as facilitators of increasing the number of persons who are tested. Innovative approaches that were mentioned to facilitate HIV testing included offering rapid HIV testing at pharmacies. HIV testing in pharmacies would meet the requirements of both low cost and the assurance of confidentiality, especially in rural settings, where concerns about confidentiality and cost are common. As many rural residents live below the poverty line and lack public or private insurance, providing financial assistance for routine HIV testing is a necessity if we are to make progress with the public health recommendation for routine HIV testing in health care settings. 20,21 According to responding HIV testing sites, each county reported an average of 3 positive HIV test results during As many areas of the country make efforts to allocate public health resources on the basis of disease incidence, an important next step is to determine the rural counties with the highest numbers of incident HIV cases and then to intensify public health efforts accordingly. In our study, Florida, South Carolina, and Virginia reported the highest number of new cases per rural county. However, their estimates are not consistent with HARS (described previously 22 ) estimates, which may be due in part to delays with reporting (data not shown). HARS requires several steps to accurately document each new HIV diagnosis 23 and ensure that resources are appropriately allocated. Efforts should be increased to evaluate the local and national data reports and ensure that HARS estimates are consistent with local estimates of The Journal of Rural Health 26 (2010) c 2010 National Rural Health Association 245

7 Sutton et al. HIV disease. Although not mentioned by our survey respondents, strengthening the rural South data reporting mechanisms to improve our understanding of the rural South HIV epidemic would also facilitate our HIV prevention efforts. Other approaches have been described in the literature to facilitate the provision of HIV services in rural areas. One approach would be remote consultation between infectious disease specialists and providers of HIV treatment in rural areas: this approach helps rural service providers feel confident that they have the most recent information to help guide the treatment plan for their HIV-infected clients This approach would also allow HIV care to be incorporated into the general medical care that clients may receive from their rural providers who are not HIV care specialists. This integrated services approach is being employed successfully in many areas of the United States using timed, management team county visits and/or remote consults or information exchange by Internet. 24,29 Although the establishment of reliable and sustainable Internet access in the rural South is challenging, and populations in the rural South, compared with populations in other US regions, have the lowest level of Internet access and usage, 30 federal efforts to increase broadband access for rural health care providers have been funded in recent years and could help support growing efforts to expand the sharing of HIV health information through technology. 31 Also, pilot programs are exploring the partnering of pharmacists in rural areas with physicians and nurse practitioners in educational institutions to identify and help manage both prospective and current problems related to HIV treatment medications. 32 Our study had several limitations. First, we surveyed only providers for this study. It will be important to survey rural clients to get a more accurate and well-rounded picture of accessibility, availability, and acceptability of HIV-related services in these counties in the rural South. Second, responding to the mailed surveys was a challenge for some of the rural county service providers. Follow-up telephone calls with key health department persons allowed for improved yield in survey responses. Because of the low response rate, our sample is not representative of all HIV services in the rural counties in these 10 states. Future efforts to improve survey response yield may warrant earlier, more structured engagement with lead health department staff in each county, electronic surveys where possible, or focusing survey efforts during regional HIV meetings or conferences when increased numbers of rural public and private providers may be in attendance. As the HIV/AIDS epidemic in the rural South continues to evolve, it is important to understand the perspectives of service providers in various rural settings. The local health department is the first line of care for many residents of resource-limited areas, such as the rural South. This study highlights important perspectives of rural service providers regarding the accessibility and availability of HIV services and the facilitators and barriers for clients. The varied responses regarding accessibility issues may reflect the wide range of experiences, particularly in HIV services, that are common in the health care system in the rural South. 14,15,19 Efforts to improve the availability and accessibility of HIV services in the rural South, and thus reducing the disproportionate effect of HIV on African Americans, may add insight that can be useful in reducing racial/ethnic health disparities nationwide. 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