CHAPTER 3

El Rio Health Center: Arizona Border HIV/AIDS Care Project

The Arizona Border HIV/AIDS Care (ABHAC) project was an effort by El Rio Health Center (Tucson, Arizona) to address HIV risk behaviors among at-risk populations along the Arizona–Mexico border. The clinic serves the population living within 62 miles of the international border between Arizona and Mexico. The region includes four counties: Cochise, Santa Cruz, Pima (where Tucson is located), and Yuma (Health Resources and Services Administration [HRSA], n.d.). The population of Pima County is 946,362 (U.S. Census Bureau, 2006) and includes the Tohono O’odham Indian Nation, which shares 75 miles of border with Mexico (Southwest Border Rural Health Research Center, 2004). Many Tohono O’odham and Yaqui Indians reside in Sonora, Mexico, which was historically a part of the Tohono O’odham homeland and was divided by the international border (Smithsonian Center for Education and Museum Studies, n.d.). The Cocopah Tribe residing south of Yuma, near Somerton, was similarly separated from tribal members who reside in Sonora, Mexico. Before the establishment of the border, these people traveled freely across tribal land, and many tribe members still have relatives living in Mexico.

Area Demographics

The counties of Cochise, Santa Cruz, and Yuma are sparsely populated rural communities and account for the bulk of Arizona’s border population. The U.S. Census Bureau (2006) reported a total population of 358, 392 for the three counties (Santa Cruz, 43,080; Cochise, 127,757; Yuma, 187,555). Approximately 29 percent of all Arizonans are of Hispanic origin, whereas 32 percent of Cochise County (U.S. Census Bureau, 2005), 81 percent of Santa Cruz County (U.S. Census Bureau, 2000),6 32 percent of Pima County (U.S. Census Bureau, 2005), and 56 percent of Yuma County residents are of Hispanic origin (U.S. Census Bureau, 2005). Hispanics represent a significant majority of the population in Arizona cities that are contiguous to the U.S.–Mexico border: 94 percent in Nogales, 95 percent in Somerton, 89 percent in San Luis and 86 percent in Douglas (U.S. Census Bureau, 2000). A majority of Hispanics in Arizona are of Mexican or Mexican American descent.

Like much of the U.S.–Mexico border region, Arizona’s border region is an economically depressed area. The region continues to have higher rates of unemployment and poverty as well as a lower median household income than the State’s average. For example, approximately 25 percent of individuals and 21 percent of families in Santa Cruz County live below the Federal Poverty Level, compared with 14 percent of individuals and 10 percent of families statewide (U.S. Census Bureau, 2000). Because many of the residents in the border region speak only Spanish or have limited English proficiency, access to education, employment, and health care is limited.

Local HIV/AIDS Epidemiologic Data

HIV risk behaviors among at-risk populations along the Arizona–Mexico border are as high or higher than in other areas of the United States. Intravenous drug use (IDU) has increased dramatically as the Arizona border has become a major corridor for illegal drug traffic coming from Mexico (U.S. Department of Justice, 2007). The combination of drug use, poverty, and isolation or hopelessness contributes to conditions that place people at increased risk for HIV transmission through risk behaviors such as unprotected sex.

From 1981 through June 2003, the Arizona Department of Health Services (ADHS) Office of HIV/AIDS reported 98 AIDS cases in Cochise County (in the southeast), 29 cases in Santa Cruz County (including Nogales), 1,779 cases in Pima County (including Tucson), and 108 cases in Yuma County (including the city of Yuma; ADHS Office of HIV/AIDS, 2003). Over the same period, reported HIV cases in the region totaled 1,195, including 57 in Cochise County, 11 in Santa Cruz County, 1,068 in Pima County, and 59 in Yuma County (ADHS Office of HIV/AIDS, 2003).

In 2004 the ADHS Office of HIV/AIDS revised its reporting procedures to count “emergent”7 rather than cumulative cases, in order to identify the State’s first contact with patients with a diagnosis of either HIV or AIDS. This procedure would prevent duplicate counts of patients whose disease progresses from HIV to AIDS. The State also changed from biannual to annual reporting.

Trends of emergent HIV infection among all racial ethnic groups in Arizona are reflective of broader population trends. For example, non-Hispanic Blacks constituted just 3.2 percent of Arizona’s population in 2003 and accounted for 12.9 percent of emergent HIV infection cases. This disproportionate impact is not seen among other minority groups. In 2003, Hispanics of all races constituted 27.8 percent of the State population but 30.8 percent of emergent HIV infection. American Indian and Alaska Natives were 4.8 percent of the State population in 2003 and 4.8 percent of emergent HIV infection. Asian and Pacific Islanders made up 2.2 percent of the State population in 2003 and 0.7 percent of emergent HIV infections (ADHS Office of HIV/AIDS, 2004b).

The proportion of AIDS cases among non-Hispanic Whites in Arizona is steadily declining. In the 1980s, when non-Hispanic Whites were about 75 percent of the State population, 83 percent of AIDS cases reported in Arizona were among this group. By 2001, the population of non-Hispanic Whites had declined to 64.3 percent, and the group’s share of reported AIDS cases had dropped to 56.2 percent. Most notably among the demographic changes, non-Hispanic Blacks accounted for just 3.1 percent of Arizona’s population but 12.6 percent of the State’s reported AIDS cases in 2001. This disproportionate impact of HIV/AIDS was not seen among Hispanics, who constituted 25.6 percent of the State population in 2001 and accounted for 24.9 percent of the State’s reported AIDS cases that year (ADHS Office of HIV/AIDS, 2004a).

In Yuma County, Hispanics made up 55 percent of new HIV cases and 50 percent of new AIDS cases (ADHS Office of HIV/AIDS, 2004c). In Cochise (Bisbee and Douglas) and Santa Cruz (Nogales) counties, Hispanics made up 53 percent of the new HIV cases and 55 percent of the new AIDS cases (ADHS Office of HIV/AIDS, 2004c). From 1981 through June 2003, the ADHS Office of HIV/AIDS (2003) reported 235 AIDS and 127 HIV cases for Cochise, Santa Cruz, and Yuma counties combined.

In Yuma County, between 1998 and 2002, heterosexual sex was the predominant mode of transmission for new HIV and AIDS cases (45 percent and 42 percent, respectively). Men who have sex with men (MSM) was the predominant mode of transmission for new HIV cases in Cochise and Santa Cruz counties (53 percent and 60 percent, respectively; ADHS Office of HIV/AIDS, 2004c).

People who were diagnosed with AIDS between 1998 and 2002 and were between ages 30 and 39 made up 45 percent of all AIDS cases. People testing positive for HIV who were between ages 20 and 29 made up 34 percent of all HIV cases, and those who were between ages 30 and 39 made up 40 percent of all HIV cases.

The highest number of HIV/AIDS cases is reported in Pima County, but current and historical records do not report cases by residency within that designated border region. A large proportion of Tucson’s HIV-positive population resides in the less affluent south and west sections of the city. For the purposes of the project’s enrollment and evaluation, Pima County numbers are not included in the ABHAC project data (the goal was to focus on the border population, and most of Pima County is not on the border).

Surveys of HIV-related service providers in the border region found that the surveillance data significantly underestimate the incidence of HIV in Arizona’s border corridor (ADHS Office of HIV/AIDS, 2004). The main explanation for the underreporting is that the numbers represent only people tested locally and reported to the State system. Within the rural border communities, the stigma associated with being HIV positive remains strong, especially in Mexican American neighborhoods. Given the close family ties of border communities, HIV status may not be kept confidential in communities. Consequently, many at-risk people often are not tested in their communities but prefer to be diagnosed in a larger metropolitan area, such as Tucson. The same concerns about confidentiality among those who are HIV positive hinder access to primary health care.

Access to Care

HIV care in rural border counties varies widely. In the border counties, county health departments are the primary sources of HIV counseling and testing and referral to primary health care services. After a person tests positive for HIV in either Cochise or Yuma County, the health department staff refer him or her to the community health center (CHC) for primary medical care; in Santa Cruz County, however, Mariposa CHC provides HIV counseling and testing. There, after someone tests positive for HIV, staff register the person for primary medical care at the clinic.

Barriers in access to HIV care in Arizona’s rural communities include travel distance, concerns about confidentiality and stigma, quality of medical care, and lack of health insurance (HRSA, 2003). Language and cultural differences between patient and provider, high poverty, and an international border that separates communities exacerbate the perceived barriers to care.

Overview of the Arizona Border HIV/AIDS Care Project

El Rio Neighborhood Health Center (El Rio)/Special Immunology Associates (SIA) is a specialty clinic that provides HIV/AIDS medical care. El Rio is a nonprofit provider of comprehensive health care for uninsured and underinsured Tucson residents. It has been in operation since 1970 and has served more than 57,000 registered patients (El Rio Health Center, 2006). The Bureau of Primary Health Care recognized the clinic for its quality and scope of health care and in 2004, the clinic received the Russell E. Brady Award in recognition of its innovative HIV programs. El Rio’s patient demographics are predominantly women and children of Hispanic heritage. The clinic serves equal numbers of insured (private) and uninsured patients as well as patients who qualify for Arizona Health Care Cost Containment System (AHCCCS), Arizona’s health care program for the indigent.

Within the framework of the El Rio mission (see box), services at El Rio/SIA have been designed for optimal accessibility and affordability within a comprehensive framework of culturally sensitive services delivered by providers who are highly qualified in outpatient medical care to people living with HIV/AIDS (PLWHA).

El Rio’s health care services are supported through grants (e.g., HRSA Community Health Center, Migrant Health Center, Health Care for the Homeless, and Healthy Schools grants; Arizona Department of Health; and private foundations) and third-party insurance revenue. As an established clinic with an annual operating budget of more than $30 million, El Rio has the personnel and technological resources to support special projects such as those funded under the Special Projects of National Significance (SPNS) U.S.–Mexico Border Health Initiative. The center has an active and committed board of directors that seeks innovative approaches for improving health care services. El Rio has achieved recognition for numerous special creative programs, such as the Pima Community Access Program, an El Rio entity created as an insurance look-alike for the uninsured working poor; integration of behavioral or mental health with primary medical care providers; and other innovative programs to target health issues such as diabetes, pediatric asthma, women’s wellness, and HIV/AIDS care. In 2000, El Rio was honored by Computerworld magazine for its Health-e-AZ online software package, which was developed by El Rio for statewide utilization to expedite the application process of enrolling uninsured patients in AHCCCS.

THE EL RIO MISSION To be an accessible and affordable community health center that provides comprehensive quality health care in an atmosphere of respect and dignity for patient and staff, always sensitive to the cultural differences in the community. Through direct services, advocacy, and education, the Center will strive to improve the health and well being of its patients and community.

 

El Rio/SIA has been providing outpatient medical care for HIV-positive residents of Pima County for more than 12 years. Enrollment of HIV/AIDS patients from 2000 to 2004 exceeded 1,400 and averaged more than 160 new patients each year. Staff members include four physicians and a nurse practitioner who have extensive experience in the treatment of HIV/AIDS. They provide outpatient medical care with the support of a registered nurse, three licensed practical nurses, and three medical assistants. The clinic also has on staff five continuity-of-care coordinators (i.e., medical case managers), a medical records clerk, an AIDS drug assistance medication coordinator, and two office staff. Other onsite services include mental health services with psychotropic medication prescribed by a psychiatrist and monitored by a psychiatric nurse practitioner. Nutritional counseling is provided by a certified nutritionist. Medications and lab services are available onsite, and substance abuse counseling is provided onsite through agreements with the local behavioral health agency funded under Ryan White HIV/AIDS Program Part B. Services and staffing patterns have been designed to provide an accessible, integrated, comprehensive continuum of medical and social support services.

Clinic services at El Rio/SIA are available 5 days per week; an El Rio/SIA physician is on call at all times. Services are sensitive to the special needs of HIV/AIDS patients. Patients are eligible regardless of age, gender, race, national origin, ethnicity, sexual orientation, or socioeconomic status. Through Ryan White HIV/AIDS Program funds (Parts B and C) and third-party contracts, services are provided to uninsured patients and those insured through most private or public health insurance plans. If hospitalized, El Rio/SIA patients receive inpatient care from El Rio/SIA physicians, whose familiarity with the patient and the disease helps optimize care.

El Rio/SIA has long been an active advocate for services to PLWHA. El Rio/SIA works with and is represented in the following organizations that focus on HIV/AIDS: Pima County HIV/AIDS Care Consortium (Ryan White HIV/AIDS Program Part B), the Arizona AIDS Drug Assistance Program Advisory Committee, the Southern Arizona HIV Prevention Planning Group, the faculty of the Arizona AIDS Education and Training Center (AETC), and the statewide HIV/AIDS Coordination Council.

As indicated earlier, El Rio/SIA became a partner in the SPNS Border Health Initiative to strengthen its work with populations at risk for HIV by increasing its outreach and care capacity. An evaluation component helped the agency assess its outreach efforts and learn about patients’ perceived barriers to accessing health care in Arizona border communities. The 5-year experience increased staff capacity to design evaluation protocols, collect data, and coordinate evaluation efforts with SPNS staff, other partner SPNS grantees, and staff at the Centro de Evaluación at the University of Oklahoma.

Service Delivery Model

The ABHAC project reflected the planning efforts of seven area agencies striving to address the distinctive health care needs of PLWHA who live along the Arizona–Mexico border. ABHAC proposed using the SPNS initiative to strengthen its outreach to at-risk populations by increasing opportunities for HIV testing and counseling. The goal was to increase the number of patients who accept referrals to primary health care by identifying and removing patients’ perceived barriers to care. A key component of the initiative was to increase capacity of rural primary health care providers to care for PLWHA.

El Rio was well-positioned to serve as the lead agency for the ABHAC project for two reasons. First, El Rio had organizational and administrative resources for undertaking such a collaborative project. Second the unit chief at El Rio/SIA was a key resource for the clinic and a leader in the treatment of HIV/AIDS, and he was interested in developing a physician co-management model for increasing localized care for PLWHA. He had extensive experience both in providing care and serving as consultant to primary care physicians caring for PLWHA.

Potential project collaborators were surveyed to identify the needs of HIV/AIDS health care service delivery systems and potential barriers to consumers of those services. They were asked to submit ideas for innovative and extended services designed to integrate regional medical service systems, thereby ensuring proper continuity of care. The following partners agreed to collaborate in the ABHAC project:

• Arizona AETC
• Border Health Foundation
• Chiricahua CHC
• Cochise County Health Department
• El Rio CHC
• Impact Consultants, Inc.
• Mariposa CHC
• Sunset CHC
• Yuma County Health Department

The collaborating organizations agreed on the following goals for the project:

• Increase HIV testing and counseling with referrals to primary care, and target the expansion and effectiveness of outreach activities to help identify HIV-positive people
• Increase local patient access to primary care providers who are knowledgeable in treating HIV through patient co-management and training physicians
• Use the ABHAC project to ensure coordination of care and communication between HIV-related service providers in the border region.

Outreach Services

A primary focus of the ABHAC project was to increase outreach efforts to at-risk groups who live along the U.S.–Mexico border. Ryan White HIV/AIDS Program funding, including the SPNS grant funds, made it possible to increase outreach staff at CHCs, county health departments, and other health promotion programs and to provide essential training. The Arizona AETC trained outreach workers. The focus of the training was to familiarize the workers with HIV/AIDS and how the illness affects people. Training included learning about their role as a paraprofessional working with a professional medical team. Trainees were taught to recognize risky behaviors and learned strategies for helping clients overcome perceived barriers to HIV testing and accessing care. Outreach workers received ongoing supervision and participated in various staff meetings within the agency and with partner agencies to learn referral procedures, eligibility requirements, and changes in social service resources.

Primary Care System Enhancement

Training of physicians and support staff was designed to reduce interference with client and patient schedules. Training took place during lunch; the Arizona AETC facilitated training and provided food for the participants. Staff of the Arizona AETC collaborated with an El Rio/SIA physician to develop training that focused on eight core HIV educational content areas. Training sessions were offered quarterly. In Year 4 (2004), the eight core educational units were compiled into a self-paced training manual that was developed by the Arizona AETC director. The Chiricahua CHC staff translated the training manual into Spanish. The manual is now used by CHCs for their HIV training programs in southern Arizona.

Physician training used a medical co-management model developed by the El Rio/SIA physician who became the consulting HIV expert (CHE) for the project. He identified primary care physicians who were interested in strengthening their skills in treating PLWHA. In the first phase of training, the physician trainee would observe the CHE’s interaction with the patient. At the end of the day, the CHE would review and discuss each patient’s case with the trainee. During Phase 1 (Year 2), the CHE scheduled a monthly clinic visit at each site. In Year 3 of the training, the patient care was transferred to the health center physician, and the CHE provided consultation. The course of treatment selected by the physician was the focus of the educational consultation. In Cochise County (Chiricahua CHC) and Santa Cruz County (Mariposa CHC), the CHE provided monthly consultation to clinic staff. In Yuma County (Yuma), an infectious disease (ID) physician provided medical care to HIV-positive patients and consultation to the Sunset CHC. The CHE and Yuma County ID physician communicated quarterly to discuss ABHAC patient care.

The Medical Co-Management Model

The medical co-management model consists of a CHE, a local primary care provider (LPCP) and his or her clinic, and any ancillary local organizations that are involved in the delivery of services to PLWHA.

The Medical Co-Management of PLWHA

Physicians generally concur that PLWHA receive quality HIV care from physicians experienced in HIV care. The HIV Medicine Association (HIVMA) and the American Academy of HIV Medicine (AAHIVM) both call for all PLWHA to have access to an HIV expert. Both organizations define HIV expertise as knowledge that is based in training, experience, and HIV-specific continuing medical education (CME). The HIVMA and AAHIVM classify as specialists physicians who see a total caseload of at least 25 HIV-positive patients over a 2-year period and pursue HIV-related CME.8 U.S. metropolitan areas usually have had higher incidences of HIV/AIDS than rural areas. Consequently, rural areas have an insufficient number of experienced HIV providers to care for patients living there. To address this problem, the ABHAC project developed a model for the medical co-management of PLWHA. The model sought to address the needs of primary care physicians and PLWHA along the Arizona–Mexico border. The model involves in two phases: initiation and maintenance.

The Initiation Phase

The initiation phase seeks to improve the capacity of the LPCP and his or her clinic to serve HIV-infected patients with quality care. The clinic administration and staff must be informed of any plans to see PLWHA, and their concerns must be addressed. Often the administrator expresses concerns about the cost of HIV care and its potential impact on provider productivity. Clinic staff generally require education about the nature of HIV infection and possible occupational risk (e.g., needle sticks). The LPCP is provided with the reassurance that he or she will be adequately supported by the CHE. The involvement of local providers of ancillary services is important early in the process because the CHE will need to learn what services are available in the LPCP’s area. Such services are generally less available than in areas of higher HIV prevalence.

In the ABHAC model, the CHE travels to the LPCP’s clinic and sees HIV-infected patients with the LPCP on a regular basis, depending on patient volume and need. In the ABHAC experience, a monthly visit was necessary for the program to be successful. It also was important that the LPCP have a well-defined and sufficient period of time to devote to the patients. During the initiation phase, the CHE serves as an expert in HIV care for the LPCP and the clinic staff and provides hands-on education to the LPCP. During this phase, the CHE teaches the LPCP a culturally competent approach to bringing care to the local population of PLWHA. Finally, during this phase, the LPCP and the CHE seek to develop a mutual understanding and trust to facilitate future collaboration and cooperation. A typical day during this phase may require devoting some time to reviewing charts and case notes to anticipate patient needs and clinical issues before seeing patients in the clinic. Asking the patients seen that day to have lunch together as a group (with the LPCP) may increase patients’ awareness of new issues in HIV care and build trust in the LPCP. After lunch, patients not only have learned about HIV but also have a better idea of their physician’s level of understanding of the disease. The length of this phase varies with the number of patients seen and the needs of the clinic and the LPCP. The ABHAC project found that the initiation phase requires at least 18 to 24 months.

The Maintenance Phase

The maintenance phase is intended to provide opportunities to reinforce and practice skills acquired through trainings and consultations. Throughout this phase, the objective is continued HIV patient care by the LPCP, either as a developing HIV expert or within a more loosely maintained co-management model. In some cases, the LPCP will be able to see a sufficient number of PLWHA to improve upon his or her knowledge of HIV and become an expert in this area. The CHE makes fewer personal visits to the LPCP’s clinic but may continue to serve as a resource for consultation, education, and quality assurance. In the ABHAC model, the CHE travels to the LPCP’s clinic quarterly and meets with the LPCP to conduct chart reviews and to discuss any specific issues of concern to the LPCP. During those quarterly visits, the CHE continues to see some patients with the LPCP to demonstrate continued commitment to the patient community. The chart review on all active patients uses the same quality assurance and chart audit tools that are used at the CHE’s clinic. The CHE then leads a didactic session over lunch with the LPCP and clinic staff as well as other local HIV caregivers.

Components of Success

The ABHAC project developed the medical co-management model at three sites along the Arizona–Mexico border. The key component for success was identification of a LPCP who was interested in participating in the program. Not all primary care physicians are interested in providing HIV care. Even though the clinic administration may be able to provide incentives, such as additional time or some other form of compensation to participating physicians, without genuine interest from the physician, the model will not work.

Administrative buy-in is another key to success. Adoption of a co-management model to care for PLWHA requires more provider time and more resources than caring for patients without HIV disease. CHCs that do not receive funds for HIV care are less likely to participate in the delivery of HIV medical care because of the associated cost. Fortunately, CHCs like the ABHAC partners make decisions on the basis of the needs of the community they serve, not simply on fiscal considerations.

Administrative support was gained in two ways: first, by presenting epidemiological data showing that significant numbers of PLWHA live in the CHC catchment area, and second, by ABHAC staff sharing personal stories of patients who were unable to access quality care in their own communities.

The personal characteristics of the CHE also are important in ensuring success. It is critical that the LPCP feel comfortable with the CHE and that the CHE work to involve the clinic and the community in the co-management model. Often, physicians with expertise in HIV are so immersed in clinical care of their patients that they overlook the anxieties that HIV still evokes in many health care providers and in the general public.

Finally, early collaboration with local community-based organizations was important in gaining their support and fostering greater understanding and acceptance of the co-management model among patients.

In summary, the medical co-management of PLWHA is a model that promotes the professional development of clinicians caring for patients living in areas of low HIV prevalence. Consequently, patients are able to access medical care from experienced providers of HIV care in their community. The application of this model has the potential to improve health outcomes and lower health care costs for PLWHA in rural areas.

Intervention Results

The goals of the ABHAC project were as follows:

• To provide HIV outreach services to 13,000 underserved people (predominantly of Mexican origin) who live or work along the Arizona–Mexico border and are at risk for becoming infected with HIV
• To enhance the capacity of regional health care agencies to provide culturally appropriate and accessible care for border-area PLWHA
• To provide for the early detection of HIV and implement treatment protocols in a culturally competent and timely manner.

By 2004, the ABHAC project had reached more than 30,000 people through in-person and group contacts. Of the people contacted through outreach, 5,336 elected to be tested for HIV; of those, 33 tested positive for HIV. Nine tests were inconclusive. By August 2004 the project had enrolled 128 patients, distributed among counties as follows: Cochise, 45 percent; Yuma, 48 percent; and Santa Cruz, 7 percent. The project also continues to serve people who test positive for HIV. The project saw a growing number of women who tested positive for HIV but had no identifiable risk factors other than having a spouse or male partner who had tested HIV positive. The women learned of their diagnosis after their male partner was hospitalized or had died of AIDS.

Implementation

The ABHAC project experienced some obstacles during implementation. The project was helped by the established relationships among the leadership of El Rio Health Center staff and the project collaborators as well as by relationships among the collaborators. The project coordinator had a background in HIV/AIDS and behavioral health that was especially useful for the project and had collaborated with the project evaluator on other behavioral science research studies.

The departure of the Chiricahua CHC medical director proved to be beneficial to the center. The director had been ambivalent about treating HIV-positive patients because of concerns about confidentiality. After the medical director left the CHC, the CEO worked out an arrangement for the staff from the three entities (the CHC, El Rio/SIA, and ABHAC) to work together to enroll HIV-positive patients into the CHC and the ABHAC project.

Each collaborating site had turnover issues involving the staff assigned to work on the project. However, project staff were highly motivated and dedicated to the goals of the project, and site collaborators worked hard to ensure that ABHAC activities were not adversely affected by the changes. Staff working on the project were highly motivated and dedicated to the goals of the project and to education of the community about HIV disease.

The components of ABHAC were structured as follows:

• The project provided outreach to people who are HIV infected or who may be at risk for HIV infection. Outreach was also used to educate rural border communities about HIV/AIDS and the services available in their communities. Outreach was conducted through existing health promotion programs and county health departments. Outreach workers provided information on HIV/AIDS and locations and times of HIV testing sites.
  
  
• HIV counseling and testing was conducted by the county health departments in Cochise and Yuma counties, respectively. In Santa Cruz County, HIV counseling and testing was conducted by the Mariposa CHC. The Mariposa CHC provided counseling and testing and enrolled patients immediately after a positive diagnosis. People testing positive for HIV in Cochise and Yuma counties were referred to their local CHC for primary medical care. The HIV counseling and testing sites recorded who was referred for testing on the Centers for Disease Control (CDC) Bubble Form for the State; as a result, it was possible for the State health department to report to the project coordinator all HIV counseling and testing by counties associated with the ABHAC project.
  
  
• PLWHA who received care at the CHCs were informed about the ABHAC project and invited to participate. After patients agreed to participate, they were assigned to a staff member who explained the project, asked for signed consent to collect information for the purpose of evaluation, and gave a copy to the patient. The project staff then administered the multisite data modules, a process that took approximately 45 to 60 minutes to complete. After the multisite and local evaluation forms were completed and forwarded to the project evaluators, the participant consent forms were sent to the project coordinator for recordkeeping. Data were collected for evaluation purposes on each participant at baseline, and the Quality of Life and Client Satisfaction modules (Modules E and G; see Chapter 1) were completed 30 days after the baseline. The CHE trained CHC physicians in completion and submission of medical care data (e.g., the Karnofsky Performance Scale; Coffey et al., 2006).
  
  
• The Arizona AETC assessed the collaborating sites for training needs and scheduled training sessions.
  
  
• As the medical co-manager consultant to the CHC’s physicians, the CHE kept a schedule for monthly visits and met with the participating providers on a quarterly basis. The CHE and physicians at the El Rio/SIA clinic were available for medical consultation at all times.
  
  
• The evaluation data (multisite modules) were collected at each enrollment site, and the completed modules were then mailed to the project evaluators or hand-delivered during the bimonthly meeting of project collaborators. The project evaluators entered, cleaned, and submitted the data to the multisite evaluation center at the University of Oklahoma. The project evaluators provided quarterly reports to the project collaborators. Data issues were discussed and resolved at the bimonthly collaborator meetings.

The project was recognized by the Arizona Department of Health Office of HIV/STD Services for its outreach work with minority communities and was awarded Ryan White HIV/AIDS Program Part B Minority AIDS Initiative funds. The funds provided outreach and education to HIV-positive minority residents of rural communities who are AIDS Drug Assistance Program (ADAP) participants.

Role of Evaluation in the Service Delivery Model

The project evaluators collected both qualitative and quantitative data and conducted quality assurance checks on all the data. The qualitative data added context to the quantitative data and provided a more meaningful analysis of the statistical findings. The project conducted a thorough evaluation of process and patient outcomes in the context of both direct patient services and program goals and objectives.

Focus groups and in-depth interviews with PLWHA, key community stakeholders, and program staff were held to identify patient and program needs from the various stakeholders’ perspectives. Information obtained through this process was used to improve outreach and case-finding strategies, service delivery protocol, and development of provider networks. The process provided the program with the means to be more responsive to the expressed needs of the targeted community groups. The qualitative evaluation also was used to identify perceived social, economic, and cultural barriers to accessing care. The strategies for reducing the barriers to access and retention to care were in part based on the input obtained from project stakeholders and collaborators.

Quantitative data collection activities entailed using standardized instruments, such as questionnaires and patient chart reviews, to provide a comprehensive account of program inputs, activities, outputs, patient outcomes, and program outcomes. Program outcome measures included the number of people contacted through outreach, the number of PLWHA enrolled in the project, and health outcomes indicators.

The project found that cultural and linguistic competencies are essential skills for working with populations who live in the U.S.–Mexico border region. Those competencies are particularly helpful in providing health care to monolingual Spanish speakers. The project contracted with local evaluators who had extensive research background in measuring cultural competency. Project providers conducted an annual assessment designed to assess staff members’ cultural exposure, experience, and willingness to interact with multicultural populations and socially marginalized groups, such as IDUs and MSM. The instrument measured several domains, such as the value of human diversity, the understanding of culture and its application to particular communities, and the understanding of the dynamics of interpersonal interactions. The Arizona AETC and CHE developed staff in-service training sessions based on findings from the annual cultural competency assessment.

The ABHAC project team worked closely with the multisite evaluation center to address local data and evaluation issues. This process ultimately resulted in improved documentation of outreach activities and improved delivery of patient services.

Importance of Evaluation Results in Service Delivery

Between February 2001 and March 2005, the ABHAC project enrolled 128 patients in the study. Sixty percent of the patients were Hispanic; 16 percent were women; and 31 percent were heterosexual. Other sociodemographic characteristics of the study population were as follows:

• Most patients (80 percent) had a high school education.
• Most patients (64 percent) were unemployed.
• Most patients (71 percent) reported annual incomes of $10,000 or less.
• More than half (56 percent) were single.
• Seven percent of enrolled patients reported being homeless.
• On the average, patients traveled 54 miles to receive health care.
• Almost 25 percent of the patients reported having no insurance coverage (this group excluded patients enrolled in AHCCCS).
• Mental health issues, alcohol abuse, and drug abuse were reported as a concern for 36 percent, 20 percent, and 25 percent of the patients, respectively. Low income (71 percent) and rural isolation (39 percent) were associated with substance abuse.

In addition, the data revealed the following HIV-related characteristics among patients:

• Most patients acquired the virus through MSM (56 percent) and heterosexual contact (25 percent); the remaining 19 percent were infected through IDU and other categories.
• More than half of the patients (51 percent) were HIV positive but did not have AIDS and had been diagnosed since February 1995.
• A total of 34 percent of patients rated their health as fair or poor.

During each patient visit, health care providers recorded patients’ CD4 counts, viral load, and number of opportunistic infections as indicators of health. The mean CD4 count for all patients enrolled was 475, and the mean viral load was 27,946. The goal is to have each patient achieve a CD4 count above 300 and a viral load in the undetectable range (below 50). Physicians completed a Karnofsky Performance Scale (Coffey et al., 2006) at each patient visit. The Karnofsky scale measures a patient’s disease progression and his or her ability to care for his or her own daily needs. The scale is calibrated from 0 (death) to 100 (fully functional). The mean Karnofsky value for enrolled patients was 87. A score of 80 indicates some signs or symptoms of the disease, but the patient is able to participate in normal activities with some effort.

In January 2004, the ABHAC Annual Health Provider’s Cultural Competence Assessment was administered for the third time. The assessment was given to support staff (not physicians) to assess their attitudes about providing care and culturally competent services to PLWHA. The findings indicated that most nonphysician health care providers supported the need to provide culturally competent health care. Also, each of the sites surveyed (CHCs and county health departments) endorsed the development of specialized HIV/AIDS care. This capacity would be achieved through ongoing training and education offered by the AETC and physicians who specialize in HIV medical care.

During the ABHAC project, more than 30,000 people were reached through individual and group contact encounters. A total of 88 physician-to-physician discussions involving more than 169 hours of consultation were reported through Year 4 (2004). Although ABHAC did not reach its target enrollment of 280 patients, many of the program goals, such as providing patient care in rural CHCs, were achieved. In addition, the project achieved several short-term objectives, such as improving confidentiality and increasing the willingness of physicians to care for HIV-positive patients. The project’s plan to implement telemedicine was not feasible as a result of the limited availability of technology resources in rural health care settings.

The Chiricahua CHC experienced an increase in the number of HIV-positive patients, an indication that the implementation of ABHAC in the clinic was openly accepted. An issue the Chiricahua CHC and the other health centers encountered was the reluctance of PLWHA to be seen in the health center because of fear of disclosure of HIV status. With the implementation of the co-management model, the health centers’ attending physician saw patients monthly and consulted with SIA’s CHE. The co-management model helped develop the physicians’ comfort with seeing HIV-positive patients and changed the perception that the clinic staff had of PLWHA. In addition, the Chiricahua CHC has collaborated with the Cochise County Health Department to provide dental services to PLWHA and to coordinate case management services.

CASE STUDY “Juan,” a 35-year-old Hispanic man, was hospitalized and referred to the SIA physician on April 14, 2003. He had difficulty walking because of neurological problems that affected his motor skills. He was diagnosed with late-stage HIV disease and enrolled in the ABHAC project on April 24, 2003. Juan’s lab results revealed a CD4 count of 10, a viral load greater than 750,000, and significant neurological impairment. Juan’s Karnofsky Performance Scale score was 40 (the optimum is 100), indicating significant disability and need for special care and assistance. Juan was not able to live independently and meet his daily needs. Juan was placed on antiretroviral therapy, fluconazole for oral candidiasis, and trimethoprim/sulfamethoxazole (Bactrim) for Pneumocystis prophylaxis. After hospital discharge and follow-up visits to SIA to see the consulting HIV expert (CHE), Juan was transferred to the attending physician at the Chiricahua CHC in Bisbee, Arizona. There, Juan’s care was managed by a physician who consulted with the CHE on the case. After 1 year of antiretroviral therapy, Juan’s CD4 count was 120 and his viral load was less than 50. He was ambulatory, his mental status was clear, and he was aware of the time and the date. His Karnofsky score was 80 (indicating normal activity with some effort and some signs or symptoms of disease), an increase of 40 points. Juan seemed well groomed and was able to get around without assistance. He was referred for a mental function status evaluation to determine the presence of HIV-related dementia or other organic problem.

 

Cochise, Santa Cruz, and Yuma counties all reported an increased awareness of HIV/AIDS and acceptance of PLWHA in their communities. This change was observed by the service providers who educate the community and through events such as the community coming together to support awareness activities (e.g., World AIDS Day). In Cochise County, World AIDS Day was celebrated on the U.S.–Mexico border; the activities included a candlelight procession with participants who met at the border. In each county, the project collaborators were able to affect the perceptions and attitudes of CHC staff toward HIV/AIDS. The collaborators also were able to involve the faith-based organizations, government agencies, and social service providers in community outreach activities and HIV education.

Lessons Learned

From its participation in the SPNS U.S.–Mexico Border Health Initiative, El Rio/SIA learned several key lessons. First, establishing and maintaining community collaboration and structured avenues of communications are critical to achieving successful outcomes. ABHAC initiated monthly meetings among the collaborators to receive input, answer questions, and resolve issues related to project implementation. Through this process, ABHAC learned not to assume that working in a health care field in and of itself makes a person knowledgeable about the HIV transmission process or management of HIV disease.

Second, the CHC administration initially seemed reluctant to support all activities of the project. Through education and compensation for health care staff activities, health care centers became more open to project activities, including education and training.

Third, patients at the health care clinics worried that rural health care physicians did not have skills in HIV primary health care equal to those of physicians in urban centers who have experience in caring for many patients living with HIV. Consequently, educating patients about the co-management model of HIV care became an important component of the project. Patients needed reassurance that their HIV care was of a comparable quality to what they would receive in an urban center.

Another concern among patients was the possibility of a breach in confidentiality; therefore, during the implementation of the project, patients were made aware that the CHCs were addressing their concerns. As more patients were treated by rural CHCs, their perception of receiving inferior quality care and of having their confidentiality breached was alleviated or at least diminished.

Another lesson was that assessment of the training needs of health center staff and physicians is important to the success of any project, as is having knowledgeable training staff or access to an AETC. When scheduling trainings in rural settings, it is important that staff not interfere in the daily
operations of the clinic and the scheduled appointment times. The development and use of the co-management model for physician training and the self-paced HIV training manual for clinic staff proved to be effective for the project.

Finally, the process for communicating with collaborators was essential for the continued progress of ABHAC. Collaborators participated in monthly meetings that were based on a structured agenda in Years 1 and 2 (i.e., while the project was being implemented), then had bimonthly meetings in Years 3, 4, and 5; the approach successfully maintained clear communication.

Sustainability

The ABHAC project director and project coordinator began working with the collaborating partners to identify funding sources that could maintain project activities at some level. The project participants began to discuss the issue of sustainability at the start of Year 4 by adding this topic to the bimonthly meeting agenda. At each meeting, the group discussed funding opportunities for which the project might be eligible, either as an individual respondent or in collaboration with another agency. Patients who were receiving their medical care at El Rio/SIA remained at the clinic until the termination of the SPNS project; they continued to receive care beyond the SPNS project, although other Ryan White HIV/AIDS Program funds, not SPNS, paid for their care. Patients enrolled at the border CHCs that were eligible for Ryan White HIV/AIDS Program Part B funding were transferred from SPNS to that funding stream so that they could continue to receive medical care within the clinic.

The Arizona AETC continues to offer training opportunities to providers who practice along the Arizona–Mexico border. Project collaborators are aware that they may request training from the Arizona AETC at any time and that if funds are available, the AETC will try to meet their request. And finally, the CHE is seeking funds from pharmaceutical companies to support a rural medical training program that would provide HIV care updates and case presentations to rural health providers.

References

Arizona Department of Health Services Office of HIV/AIDS. (2003). Arizona HIV/AIDS semi-annual surveillance report, 10(1). Retrieved August 2, 2007, from www.azdhs.gov/phs/hiv/pdf/semi0703.pdf

Arizona Department of Health Services Office of HIV/AIDS. (2004a). Comprehensive HIV prevention plan 2004–2006. Retrieved July 25, 2007, from www.azdhs.gov/phs/hiv/pdf/hiv_prevplan.pdf

Arizona Department of Health Services Office of HIV/AIDS. (2004b). Executive summary: HIV/AIDS annual report, March 2004. Retrieved July 25, 2007, from www.azdhs.gov/phs/hiv/pdf/2004exec_summry.pdf

Arizona Department of Health Services Office of HIV/AIDS. (2004c). Prevalence and incidence by county, 1998-2002. Retrieved August 6, 2007, from www.azdhs.gov/phs/hiv/pdf/counties.pdf

Arizona Department of Health Services Office of HIV/AIDS. (2006). Executive summary: HIV/AIDS annual report, March 2006. Retrieved August 8, 2007, from http://www.azdhs.gov/phs/hiv/pdf/2006_executive_summary.pdf

Coffey, S., Balano, K., Stringari-Murray, S., Lawrence Hicks, M., Graeber, C., Mandel, N., et al. (Eds.). (2006). Clinical manual for management of the HIV-infected adult (2nd ed.). Newark, NJ: AIDS Education and Training Center National Resource Center. Retrieved July 17, 2007, from www.aids-ed.org/aidsetc?page=cm-1003_karnofsky

Health Resources and Services Administration. (n.d.). Border county health workforce profiles: Arizona. Retrieved July 16, 2007, from http://bhpr.hrsa.gov/healthworkforce/border/arizona/a.htm

Health Resources and Services Administration, HIV/AIDS Bureau. (2003). Advancing HIV/AIDS care along the U.S./Mexico border: A report on the border health initiative. Rockville, MD: Author.

Smithsonian Center for Education and Museum Studies. (n.d.). The Arizona-Sonora border: Line, region, magnet, and filter. Retrieved July 30, 2007, from www.smithsonianeducation.org/migrations/bord/azsb.html

Southwest Border Rural Health Research Center. (2004). Arizona rural health plan. Retrieved July 30, 2007, from www.rho.arizona.edu/Programs/documents/AZ_RHP20050419.pdf

U.S. Census Bureau. (2000). Census 2000 demographic profile highlights. Retrieved August 2, 2007, from http://factfinder.census.gov/home/saff/main.html?_lang=en

U.S. Census Bureau. (2005). American community survey data profile highlights. Retrieved July 17, 2007, from http://factfinder.census.gov/home/saff/main.html?_lang=en

U.S. Census Bureau. (2006, July 1). Arizona—county: Population estimates. Retrieved July 17, 2007, from http://factfinder.census.gov/servlet/GCTTable?_bm=y&-geo_id=04000US04&-_box_head_nbr=GCT-
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U.S. Department of Justice. (2007). Arizona: High intensity drug trafficking area drug market analysis. Retrieved July 17, 2007, from www.usdoj.gov/ndic/pubs22/22934/22934p.pdf

Additional Resources

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Doyle, D., Hanks, G., & MacDonald, N. (Eds.). (1993). Oxford textbook of palliative medicine. New York: Oxford University Press.

Hollen P. J., Gralla R. J., Cris, M. G., Cox, C., Belanie, C. P., Grunberg, S. M., et al. (1994). Measurement of quality of life in patients with lung cancer in multicenter trials of new therapies. Cancer, 73, 2087–2098.

Huba, G. J., Melchior, L. A., staff of The Measurement Group, Cherin, D., & HRSA/HAB SPNS Cooperative Agreement Steering Committee. (1996). Module 73: Karnofsky and Disease Stage Scale. Culver City, CA: The Measurement Group. Retrieved from www.themeasurementgroup.com/modules/mods/module73.htm

O’Toole, D. M., & Golden, A. M. (1991). Evaluating cancer patients for rehabilitation potential. Western Journal of Medicine, 155, 384–387.

Schag, C. C., Heinrich, R. L., & Ganz, P. A. (1984). Karnofsky performance status revisited: Reliability, validity, and guidelines. Journal of Clinical Oncology, 2, 187–193.

6 2005 data are not available for Santa Cruz, Nogales, Somerton, San Luis, and Douglas counties.
7 “In Arizona’s HIV/AIDS reporting, estimates of incidence are based upon the sum of new HIV cases, and new AIDS cases which were not diagnosed as HIV infections in any prior calendar year. These cases are referred to as emergent cases and are used as an estimate of incidence. Cases of HIV/AIDS can only be counted as emergent in the year they were first diagnosed with HIV infection. Persons who were emergent as HIV and diagnosed as AIDS in the same calendar year are counted as emergent AIDS to avoid double counting.” (ADHS, 2006, p. 1)
8 For information on specialization requirements, see www.hivma.org/Content.aspx?id=1782 and
http://www.aahivm.org/index.php?option=com_content&task=category&sectionid=6&id=173&Itemid=236.