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

ORIGINAL ARTICLE

HIV Testing and HIV/AIDS Treatment Services in Rural Countiesin 10 Southern States: Service Provider PerspectivesMadeline Sutton, MD, MPH;1 Monique-Nicole Anthony, MPH;1,2 Christie Vila, PhD;3

Eleanor McLellan-Lemal, MA;1 & Paul J. Weidle, PharmD, MPH1

1 Centers for Disease Control and Prevention, Atlanta, Georgia2 Northrop Grumman Corporation, Information Technology, Atlanta, Georgia3 Florida International University, Stempel School of Public Health, Miami, Florida

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; e-mail:

[email protected]

doi: 10.1111/j.1748-0361.2010.00284.x

Abstract

Context: Forty percent of AIDS cases are reported in the southern UnitedStates, the region with the largest proportion of HIV/AIDS cases from ruralareas. Data are limited regarding provider perspectives of the accessibility andavailability 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 HIVtesting and treatment services.Methods: All county health departments (N = 326) serving populations of<50,000 persons, within 10 southern states, were mailed surveys. Respond-ing health departments identified up to 3 HIV testing sites and up to 3 HIVtreatment 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 thesurveys. The number of testing sites per county ranged from 0 to 20; the num-ber of treatment sites ranged from 0 to 4. An average distance of 50 miles forclients to travel for HIV treatment was reported by health department respon-dents as a barrier. Facilitators of HIV testing were (1) integrating HIV testinginto other health services; (2) using rapid HIV testing; and (3) establishing eas-ily accessible HIV testing locations and free testing services.Conclusion: Providers perceive that distance from local health departmentsto HIV treatment sites presents a barrier to HIV care for their clients. Fu-ture studies should ascertain clients’ perspectives to ensure appropriate serviceprovisions.

Key words Access to care, health disparities, health services research, ruralSouth, HIV/AIDS services.

In 2007, an estimated 40% of persons living with Ac-quired Immune Deficiency Syndrome (AIDS) in theUnited States resided in the South.1 Additionally, of allAIDS cases among US adults and adolescents in ruralareas, 67% were reported from the South, followed by14% from the Midwest, 12% from the Northeast, and 7%from the West.2 In southern rural areas, African Ameri-cans were disproportionately represented in the numberof residents and in the number of AIDS cases—almost

30% of residents and 57% of AIDS cases in 2006.2 Thedisproportionate impact of HIV/AIDS on African Ameri-cans in the rural South is consistent with the nationwidepattern: African Americans constituted 13% of the pop-ulation but accounted for an alarming 50% of HIV/AIDScases in 2007.1 These data suggest a compelling need forbetter characterization of the HIV/AIDS epidemic and ofthe accessibility and availability of services in the ruralSouth.

240 The Journal of Rural Health 26 (2010) 240–247 c© 2010 National Rural Health Association

Sutton et al. HIV Testing and HIV/AIDS Treatment Services in Rural Counties

The HIV/AIDS epidemic in the rural South is complexand is heavily influenced by poverty, decreased accessto health care, fewer HIV/AIDS-experienced providers,HIV-related stigma, and the educational, historical, andstructural challenges that can create additional barriers toHIV testing or treatment services.3-5 In addition, AfricanAmericans in the rural South are disproportionately af-fected by sexually transmitted diseases, including syphilisand gonorrhea, and by concurrent sexual partnerships,both of which can increase the transmission of HIV.6-8 Ef-forts to better understand the epidemic in the rural Southwill also improve our understanding of the racial/ethnicdisparities in disease rates in the region. The widegeographic dispersion of rural residents adds to the com-plexity of planning and delivering HIV testing and treat-ment services. Data suggest that most rural residents liv-ing with HIV seek medical care in nearby urban settings,primarily because of a perceived lack of adequate medi-cal infrastructure and a perceived lack of confidentialityamong community members, including family, friends,providers, and pharmacists.3,9-13 Additionally, personsliving with HIV in rural areas disproportionately reportseveral barriers when compared to their urban counter-parts: the need to travel long distances to access services;a lack of adequately trained personnel; having to rely onproviders who see fewer HIV-infected clients; a lack ofpublic transportation; decreased access to highly activeantiretroviral treatment agents; and community stigmatoward persons living with HIV.14,15 However, data arelacking regarding the availability of HIV testing and treat-ment services from the perspective of those who providethese services in the rural South. Our purpose was to sur-vey primary public-sector service providers and referredpublic and private HIV providers in the rural South to bet-ter understand their perspectives on (1) the accessibilityand 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 inrural counties in 10 southern states was conducted dur-ing 2004. The 10 states were Alabama, Arkansas, Florida,Georgia, Louisiana, Mississippi, North Carolina, SouthCarolina, Tennessee, and Virginia, which are classified inUS census reports as the Deep South and include 325counties with populations of <50,000.

Three types of surveys were administered during 2004:(1) a general health department survey, which wasmailed to each of the 326 health departments in the 325rural counties (1 county in Louisiana had 2 health de-partments); (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 de-partments that responded to the first survey; and (3) anHIV treatment survey, which was mailed to 152 sites (eg,previously identified health departments, academic treat-ment centers, and private doctors’ offices) referred bythe health departments that responded. All 3 surveys en-compassed county demographics, the availability of HIVtesting and treatment services, and facilitators and bar-riers related to accessing HIV services. Specific standard-ized questions asked about HIV testing included inquiriesabout county HIV testing locations, approximate numbersof HIV tests administered annually, numbers of personswho received results, and average distance travelled byclients to reach testing locations. Standardized HIV treat-ment questions included inquiries about numbers of per-sons treated in the past year, average distance to reachtreatment sites, and accessibility by way of public trans-portation. Survey respondents were directors, programmanagers, or main contacts for HIV-related referral ser-vices, such as a nurse administrator or an HIV coordi-nator. Eligible survey participants were identified duringthe process of creating the rural county health depart-ment database for this survey. Survey respondents andalternates were verified as the appropriate contacts byregional administrators. In an effort to increase the re-sponse rate, follow-up phone calls were made and e-mailmessages were sent to health department leads if the gen-eral health department surveys were not returned by therequested date.

Each survey instrument also included 3 open-endedquestions: “(1) What can you identify as barriers to HIVcounseling, testing, treatment, and education in yourhealth department district? (2) What factors or programshave facilitated or improved access to HIV testing and/ortreatment in your area? (3) Does your county have anyinnovative programs in place that have improved ac-cess to HIV testing and/or treatment?” The open-endedresponses were analyzed using Analysis Software forWord-based Records (AnSWR), version 6.4 (developedby the Centers for Disease Control and Prevention [CDC];see http://www.cdc.gov/hiv/software/answr.htm). Theopen-ended responses were independently coded by 2analysts who used a standardized iterative approach.Intercoder agreement was assessed: discrepancies werediscussed, the codebook was revised, and the data wererecoded. Binary matrices were created in AnSWR and im-ported into UCINET 6 (Analytic Technologies, Lexington,KY), where Johnson’s hierarchical clustering method16,17

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) 240–247 c© 2010 National Rural Health Association 241

HIV Testing and HIV/AIDS Treatment Services in Rural Counties Sutton et al.

Descriptive outcomes and response frequencies were cal-culated 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 in-cluded in our survey, we compared county-level datafrom the US Census Bureau18 and data from CDC’sHIV/AIDS Reporting System (HARS).

This provider survey was reviewed, approved and des-ignated as research not involving human subjects by theinstitutional review board (IRB) of the National Cen-ter for HIV/AIDS, Viral Hepatitis, STD, & TB Preventionof the CDC. The Office of Management and Budget re-viewed and approved the survey (OMB 0920-0668).

Results

Health Department Surveys

Of 326 rural county health departments that receivedmailed surveys, 243 (75%) responded (Figure 1). Re-sponse rates ranged from 45% in North Carolina to 100%in South Carolina (Table 1). Except in Tennessee, therural counties surveyed were disproportionately AfricanAmerican (Table 1), and except in Florida, a substan-tial 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 test-ing services. No demographic differences were noted be-tween counties that reported and did not report availableHIV testing services. Health department respondents es-timated a median of 2 (range, 0-20) HIV testing sites percounty (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 andtreatment services. Health department respondents esti-mated an average of 8 miles from the health departmentto the nearest HIV testing site, unless the testing site wason-site at the health department. The median and meannumbers of HIV treatment sites per county were 0 and 2,respectively (range, 0-4). The estimated median distanceto HIV treatment services was over 50 miles (range, 0-325 miles), reflecting the fact that HIV-infected residentsare often referred to HIV specialists in cities that are notproximal to their local health departments.

Testing Surveys

Surveys were also received from 133 of 250 (53%) test-ing sites referred by health departments. Of these testingsite respondents, 87% reported that the health depart-ment is the main location for HIV testing (Table 2). Ofthe 133 testing sites, 93 (70%) performed testing with-

out a charge; 37 (28%) charged a fee, which averaged$20 per HIV test; and 3 sites did not respond to this ques-tion. Of the 133 sites, 68 (51%) reported that they usedstandard HIV testing; thus, clients needed to return forresults after 2 weeks. For the average estimated 327 HIVtests 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 2004. There was actu-ally 1 positive result per rural county for Arkansas, Geor-gia, Louisiana, and Tennessee and 6-8 positive results forFlorida, South Carolina, and Virginia. Of the responding133 HIV testing sites, 77% reported accessibility by pub-lic transportation. Thirty-three (25%) reported providingoutreach services, including mobile vans, to facilitate ac-cess for rural clients; 17 (13%) reported offering trans-portation to those in need.

Treatment Surveys

Of the 152 treatment sites referred by health depart-ments, 73 (48%) completed the survey. Of those, 42(57%) reported on-site pharmacy services, 29 (40%) pro-vided care in public HIV/STD clinics, and 45 (62%) re-ported on-site social work and case management services(Table 3). A total of 51 (70%) rated their sites as veryor somewhat accessible. A median of 14 (range, 0-1,250)HIV-infected persons per rural county received treatmentin 2004; of those in treatment, 66% were African Amer-ican. However, because many of the larger HIV treat-ment sites were in cities (not in the counties from whichthe clients were referred), the respondents included HIV-infected persons from nearby towns in their estimates.According to HARS data, the estimated cumulative num-ber of persons living with HIV/AIDS through 2004, perrural county surveyed in our study, was 26, of whom 14were African American.

Open-Ended Survey Questions

Of 449 respondents (health departments, testing sites,and treatment sites), 382 (85%) completed the 3 open-ended survey questions. There were no differences, bytype of site, in the patterns of responses. Analysis of codedresponses revealed that provider respondents perceived4 barriers to HIV counseling, testing, treatment, andeducation for clients: (1) distrust of system privacy andconfidentiality; (2) an inadequate service infrastructureaffecting HIV service delivery and utilization; (3) clientattitudes toward HIV; and (4) the travel distance to sitesthat provide HIV-related services. The first 3 themes pre-dominated, and providers expressed these concerns ingreater detail compared to the fourth theme.



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 per-ceptions of clients’ lack of trust in system privacy andconfidentiality. Open-ended responses emphasized thepotential for inadvertent breaches of confidentiality oranonymity that may occur when a health departmentis located in a small town or a rural community. Clientswere thought to be concerned with being identified en-tering or exiting an HIV testing facility or being recog-nized by health department staff. Some also suggested

that local residents may be concerned about HIV-relatedstigma.

Regarding the second barrier, respondents noted spe-cific infrastructure challenges, such as lack of funding forHIV outreach, prevention, and treatment services; lack ofstaff training; a dearth of HIV and infectious disease spe-cialists; lack of transportation services; and lack of sup-plements or reimbursements to help with the cost oftreatment.



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 21,174 14.1 27.2 1.8

Arkansas 37 (22) 59 15,757 22.0 13.3 2.9

Florida 18 (17) 94 16,196 2.0 16.0 3.0

Georgia 61 (43) 70 11,666 9.0 33.0 2.0

Louisiana 17 (14) 82 16,851 7.0 31.6 1.0

Mississippi 39 (38) 97 15,156 23.0 38.7 0.9

North Carolina 29 (13) 45 19,972 8.0 28.9 2.2

South Carolina 11 (11) 100 23,478 7.0 51.5 1.4

Tennessee 36 (30) 83 17,714 12.0 8.2 1.0

Virginia 49 (33) 67 15,623 11.0 17.4 1.4

Total 326 (243) 75

Department survey respondents (n = 243), 2004.

Note: One of the 325 rural counties had 2 health departments.

Regarding the third barrier, respondents reported thatefforts to heighten HIV awareness and prevention werehampered by client attitudes toward HIV, lack of educa-tion about HIV transmission and communicability, andthe tendency to underestimate personal risk factors forHIV infection. Some respondents mentioned that educa-tional and prevention efforts were hindered by religiousand moral objections to HIV education. Respondents alsostated that inadequate knowledge of HIV and indifferenceto prevention messages contributed to inaccurate percep-tions of personal risk factors.

According to our survey respondents, the main facil-itators of access to HIV testing were (1) integrating HIVtesting into other health services or programs; (2) rapidoral HIV testing, along with community health educa-tion 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 wellas free HIV testing services.

Respondents described facilitators of access to HIVtreatment that were most pertinent to sites receivingRyan White CARE Act funds (the United States’ largestfederally funded care and treatment program for peopleliving with HIV/AIDS) and the ability to use these fundsto increase the availability of medications. Some respon-dents also reported a positive correlation between treat-ment access and provision of case management and travelsupport such as transport services, travel vouchers, andgasoline 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)



In addition to specifying the facilitators describedabove, respondents mentioned many innovative pro-grams and services to increase the number of personswho seek HIV testing, including (1) HIV testing outsidetraditional health care settings; (2) ensuring that HIVeducation programs conducted by the local health depart-ment, community-based organizations, and faith-basedgroups are credited with improving access to testing; (3)walk-in HIV testing; (4) full-day testing services 5 or moredays a week; (5) providing transportation services; 6)peer counselors; and (7) HIV testing in correctional fa-cilities. Respondents reported that the addition of dis-ease specialists, case managers, community health edu-cators, and community partnerships helped strengthenthe delivery of HIV testing and treatment services in ruralareas.

Discussion

According to service provider survey respondents, HIVtesting services were available and accessible in mostcounties, but accessing available HIV treatment servicespresented a challenge for many clients. Health careproviders perceived the main treatment barriers as (1)distrust of system privacy and confidentiality; (2) an inad-equate service infrastructure affecting HIV service deliv-ery and utilization; (3) client attitudes toward HIV; and(4) the travel distance to sites that provide HIV-relatedtreatment services. The main facilitators perceived by theservice providers included (1) integrating HIV testing intoother health services or programs; (2) rapid oral HIV test-ing, along with community health education and out-reach testing activities; and (3) establishing convenient,easily accessible HIV testing locations as well as free HIVtesting services.

Although responding county health departments mostoften reported 2 HIV testing sites being available percounty, the majority of responding county health de-partments also reported zero HIV treatment sites or HIVproviders in their counties. Health department respon-dents reported that many clients were referred to distantsites for HIV treatment, and this was described as a bar-rier for clients who needed HIV treatment services. In re-gard to accessibility, some perspectives differed by typeof HIV treatment respondent site. For example, healthdepartment providers reported that their clients wouldhave to travel 50 miles from the health department tothe nearest treatment facility; the treatment facilities re-ported much shorter distances. The providers at treat-ment sites based their perception of accessibility on infor-mation about their clients, many of whom may have beenreferred because they live near the facility. HIV treatment

facilities may be less likely to see rural residents who arefrom more remote areas and are experiencing difficultiesrelated to travel. The health department, as the first lineof HIV services, likely interacts with many clients who areexperiencing such difficulties and who request informa-tion about the locations of other treatment facilities.

While travel distance to remote HIV treatment siteswas described by providers as one barrier for clients,other barriers described by providers included rural res-idents’ concern about privacy and confidentiality, lackof HIV updates and training for provider staff members,and client attitudes toward HIV. In small, rural com-munity settings, underscoring the importance of confi-dentiality with provider staff and clients is vital for anysuccessful HIV testing program or HIV treatment ser-vice.19 Improved, regular HIV testing and treatment train-ings are also needed for providers in the rural South sothat providers will feel better equipped to deal with HIVservices for clients.19 Changing client and provider at-titudes about HIV will require more open, honest dia-logue about HIV prevention, transmission, and treatmentfrom providers and key community leaders in the ruralSouth.19

Provider respondents mentioned rapid HIV testing andfree HIV testing as facilitators of increasing the numberof persons who are tested. Innovative approaches thatwere mentioned to facilitate HIV testing included offeringrapid HIV testing at pharmacies. HIV testing in pharma-cies would meet the requirements of both low cost andthe assurance of confidentiality, especially in rural set-tings, where concerns about confidentiality and cost arecommon. As many rural residents live below the povertyline and lack public or private insurance, providing finan-cial assistance for routine HIV testing is a necessity if weare to make progress with the public health recommen-dation for routine HIV testing in health care settings.20,21

According to responding HIV testing sites, each countyreported an average of 3 positive HIV test results during2004. As many areas of the country make efforts to al-locate public health resources on the basis of disease in-cidence, an important next step is to determine the ru-ral counties with the highest numbers of incident HIVcases and then to intensify public health efforts accord-ingly. In our study, Florida, South Carolina, and Virginiareported the highest number of new cases per ruralcounty. However, their estimates are not consistent withHARS (described previously22) estimates, which may bedue in part to delays with reporting (data not shown).HARS requires several steps to accurately documenteach new HIV diagnosis23 and ensure that resources areappropriately allocated. Efforts should be increased toevaluate the local and national data reports and ensurethat HARS estimates are consistent with local estimates of



HIV disease. Although not mentioned by our survey re-spondents, strengthening the rural South data reportingmechanisms to improve our understanding of the ruralSouth HIV epidemic would also facilitate our HIV preven-tion efforts.

Other approaches have been described in the literatureto facilitate the provision of HIV services in rural areas.One approach would be remote consultation between in-fectious disease specialists and providers of HIV treatmentin rural areas: this approach helps rural service providersfeel confident that they have the most recent informationto help guide the treatment plan for their HIV-infectedclients.24-28 This approach would also allow HIV care tobe incorporated into the general medical care that clientsmay receive from their rural providers who are not HIVcare specialists. This integrated services approach is beingemployed successfully in many areas of the United Statesusing timed, management team county visits and/or re-mote consults or information exchange by Internet.24,29

Although the establishment of reliable and sustainableInternet access in the rural South is challenging, and pop-ulations in the rural South, compared with populationsin other US regions, have the lowest level of Internet ac-cess and usage,30 federal efforts to increase broadband ac-cess for rural health care providers have been funded inrecent years and could help support growing efforts toexpand the sharing of HIV health information throughtechnology.31 Also, pilot programs are exploring the part-nering of pharmacists in rural areas with physicians andnurse practitioners in educational institutions to identifyand help manage both prospective and current problemsrelated to HIV treatment medications.32

Our study had several limitations. First, we surveyedonly providers for this study. It will be important to sur-vey rural clients to get a more accurate and well-roundedpicture of accessibility, availability, and acceptability ofHIV-related services in these counties in the rural South.Second, responding to the mailed surveys was a challengefor some of the rural county service providers. Follow-uptelephone calls with key health department persons al-lowed for improved yield in survey responses. Becauseof the low response rate, our sample is not representa-tive of all HIV services in the rural counties in these 10states. Future efforts to improve survey response yieldmay warrant earlier, more structured engagement withlead health department staff in each county, electronicsurveys where possible, or focusing survey efforts dur-ing regional HIV meetings or conferences when increasednumbers of rural public and private providers may be inattendance.

As the HIV/AIDS epidemic in the rural South continuesto evolve, it is important to understand the perspectivesof service providers in various rural settings. The local

health department is the first line of care for many res-idents of resource-limited areas, such as the rural South.

This study highlights important perspectives of ruralservice providers regarding the accessibility and availabil-ity of HIV services and the facilitators and barriers forclients. The varied responses regarding accessibility issuesmay reflect the wide range of experiences, particularly inHIV services, that are common in the health care systemin the rural South.14,15,19 Efforts to improve the availabil-ity and accessibility of HIV services in the rural South,and thus reducing the disproportionate effect of HIV onAfrican Americans, may add insight that can be useful inreducing racial/ethnic health disparities nationwide. Un-derstanding the HIV/AIDS epidemic in the rural South, inaddition to its importance to the region, is a componentof understanding, and developing an action plan for, thenationwide epidemic.

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