CHAPTER 4

Camino de Vida Center for HIV Services: New Mexico Border Health Initiative

The New Mexico–Mexico border region is one of the fastest growing and poorest areas in the United States. Access to health care is limited by the rural nature of the area, inadequate transportation, limited resources, and low income and formal education levels. Given the lack of access to medical care, border residents infected with HIV are often diagnosed late—during an emergency room visit or inpatient hospital stay or at a sexually transmitted infection (STI) clinic. Late diagnosis translates into late entry into medical care and treatment regimens that are less effective than those started prior to the onset of AIDS.

To address those issues at the local level, Camino de Vida Center for HIV Services (CdV) applied for and received funding in 2000 under the Health Resources and Services Administration (HRSA) Special Projects of National Significance (SPNS) U.S.–Mexico Border Health Initiative. Under the SPNS initiative, CdV served as the lead agency in developing and implementing the New Mexico Border Health Initiative (NMBHI). Four other sites along the U.S.–Mexico border and a multisite evaluation center at the University of Oklahoma were also separately funded under the SPNS initiative.

Community and HIV/AIDS-Related Needs

New Mexico is probably best known for its stunning landscapes, rich cultural heritage, and strong science and agricultural industries. Approximately 42 percent of the total population (765,000) is Latino,4 and almost 47 percent of Latino children speak a second language (Kids Count, 2005). Despite those assets, the State is one of the poorest in the Nation. The following list captures just a few of the social and health challenges facing many New Mexicans on a daily basis:

• In 2003, New Mexico had the second highest proportion of uninsured of all the States (21 percent; U.S. Census Bureau, 2004).
• New Mexico has the highest proportion of people living in poverty (one in five; U.S. Census Bureau, 2004).
• Personal income and per capita health expenditures are fourth lowest in the United States (U.S. Census Bureau, 2002).
• New Mexico ranked 20th in the percentage of adults age 18 to 64 who had ever been tested for HIV in 2001 (Henry J. Kaiser Family Foundation, 2005).

TABLE 4.1. 2003 HIV/AIDS Cumulative Cases, Adults and Adolescents

Mode of Exposure	Region 5		Total New Mexico
	n	%	N	%
MSM	199	56	2,061	64
IDU	49	14	343	11
MSM/IDU	27	7	348	11
Heterosexual	35	35	10	6
Other	8	2	58	2
No identified risk	39	11	205	6

 

In the border counties targeted by the NMBHI—Doña Ana, Grant, Hidalgo, Luna, Otero, and Sierra counties—the Latino population ranges from 26 percent (Sierra County) to 65 percent (Hidalgo County; U.S. Census Bureau, 2001). Together, the border counties claim 17 percent (312,200) of the State’s population and face challenges that are even more staggering than those at the State level (Kids Count, 2005):

• 40 percent of children in the border counties are living in poverty, compared with 26 percent in nonborder counties.
• 19 percent of births in the border counties are to teenagers, compared with 17 percent of births in nonborder counties.

New Mexico is divided into five health regions by the New Mexico Department of Health: Northwest (Region 1), Northeast (Region 2), Bernalillo (Region 3), Southeast (Region 4), and Southwest (Region 5). Region 5 comprises the six border counties targeted by the NMBHI as well as Catron, Lincoln, Socorro, and Torrance counties. According to data from the New Mexico HIV/AIDS Epidemiology Program (2005), the rate of cumulative HIV/AIDS cases in Region 5 is 135 per 100,000, compared with 313 in Region 3 (which includes Albuquerque) and 302 in Region 2. For cumulative HIV/AIDS cases in 2003, the most common mode of exposure in Region 5 was men who have sex with men (MSM), at 56 percent (Table 4.1). Intravenous drug use (IDU) followed at 14 percent.

Sixty-three percent of people living with HIV disease in Region 5 at the end of 2003 were living with AIDS, compared with 61 percent for the State as a whole. That trend is supported by national data illustrating that many people with HIV do not get tested until late in the progression of the disease. Of those who do get tested, many never receive their test results (Centers for Disease Control and Prevention [CDC], 2003a). In one study conducted from May 2000 to February 2003 at 16 HIV testing and counseling sites across the country, late testers were more likely than early testers to have lower levels of formal education, to be exposed through heterosexual contact, and to be Hispanic or African American (CDC, 2003b).

In addition to being overrepresented among those who test late for HIV, Hispanics are overrepresented among new U.S. AIDS cases. Hispanics composed approximately 15 percent of the U.S. population in 2005 (U.S. Census Bureau, 2006) and 20 percent of the total number of new AIDS cases reported (CDC, 2005). Although race and ethnicity by themselves are not risk factors for HIV infection, social and economic elements, such as higher rates of poverty and limited access to health care, increase the risk for infection among Hispanics (CDC, 2006). Other dimensions related to race and ethnicity, language, gender, and sexuality also contribute to increased risk (Diaz, 1998).

In the six counties targeted by the NMBHI, the proportion of Hispanic HIV clients at CdV has increased, from 47 percent in 1997 to approximately 57 percent in 2004. The percentage of Hispanics living with HIV/AIDS in Region 5 in 2003 was 57 percent but 40 percent statewide.

Many Hispanics continue to enter care late in the progression of the disease. It is highly probable that the well-documented barriers to accessing health care in the region, such as the lack of medical insurance, high rates of poverty and unemployment, and a shortage of health care providers (HRSA, 1998), are contributing to the problem of late entry. Long distances between communities and, thus, medical providers, as well as confidentiality concerns in small communities, may be contributing factors.

HIV Services and the CdV

Beginning in the mid-1990s, HIV/AIDS services were provided under the auspices of the Community Action Agency (CAA) of Southern New Mexico. Medical care was contracted out to a variety of providers who agreed to see people living with HIV/AIDS (PLWHA). CAA provided practical support services, such as food bank and travel reimbursement, as well as counseling services. Referrals for other services, such as case management, were made to other local agencies.

In 1996, an attempt was made to provide medical care in-house by adding a part-time physician and nurse. Because of low numbers, inadequate financial resources, and pervasive negative stigma in the community, the HIV/AIDS medical clinic was discontinued after 2 years. In 1997, the CAA’s HIV program was designated as the HIV Health Maintenance Alliance (HMA) organization for District III by the New Mexico Department of Health (NMDOH) and was awarded a contract to provide a range of services for a designated number of clients (Figure 4.1). At that time, HMA District III overlapped with most of Health District III. Health District III is now Region 5 and includes additional counties.

The State contract mandated that the agency provide HIV testing and counseling; case management; medical care; prevention case management; medication regimen adherence support; and other support services, such as travel reimbursement, emergency assistance, and food bank. The NMDOH hired a consultant to develop best practice guidelines for delivering services under the new HMA model. The guidelines specified procedures to be followed by all HMAs to ensure statewide standards of quality care.

In 1998, the CAA initiated a contract with the local hospital, Memorial Medical Center’s (MMC) Family Residency Program, to provide leadership and medical services. The residency program was one of several satellite sites of the University of New Mexico Medical School. The residency program was designed to give medical residents family practice experience in rural communities.

FIGURE 4.1. New Mexico HIV Health Maintenance Alliance.

D

 

In early 1999, the CAA began administering Housing and Urban Development (HUD) funds through the Housing Opportunities for People with AIDS (HOPWA) program in a partnership with the Mortgage Finance Authority in Albuquerque. The HOPWA program provides funds to assist clients with housing costs; emergency assistance, such as utility support; and supportive services, such as travel reimbursement for medical care. Also in 1999, CAA and the NMDOH created Camino de Vida Center for HIV Services, a private nonprofit with 501(c)(3) status. When the doors officially opened in September 1999, the client caseload was 85.

Another important program established at approximately the same time was a privately funded AID & Comfort account that functions as a supplemental insurance program for clients. The fund was initiated through a grant from the AID & Comfort Foundation in Santa Fe and is maintained through community fundraising. The fund pays deductibles and co-payments, and it enables CdV clients to purchase private insurance through the New Mexico Medical Insurance Pool when they do not qualify through other sources.

In early 2001, CdV was awarded a grant under Ryan White HIV/AIDS Program Part C. The grant provides funds for contracting medical services with target area medical providers. Those providers include the two local community health centers (CHCs)—La Clinica de Familia and Ben Archer Health Center—the MMC Family Practice Residency program, and a number of private medical care providers. Although most of the care providers are located in Doña Ana County, others are located elsewhere in HMA District III. The Roswell area is also included under Title III.

The prevention program at CdV was first implemented at the CAA in the mid-1990s and included a focus on harm reduction. The prevention program today provides a variety of services for prospective and current clients. Anonymous HIV testing and counseling is offered free of charge onsite and in the field. The program also has a speaker’s bureau, which facilitates community presentations by PLWHA. CdV provides individual and group-level interventions as well as prevention case management, a more intensive and longer intervention. Peer advocates, added to the program in 2004, offer partner elicitation, client transportation and assistance, and an orientation and support group for new clients.

Since its inception in 1997, the client caseload at CdV has grown from 85 to 154. In 2004, the staff of 11 included an executive director, three case managers, a Ryan White HIV/AIDS Program Part C coordinator, a prevention education coordinator, two prevention outreach workers, an MIS coordinator, a bookkeeper, and a secretary/receptionist. The NMBHI project staff included a project coordinator, an administrative assistant/data manager, and health outreach workers. The NMBHI evaluation team included the local evaluator, an adjunct assistant professor in the sociology and anthropology department at New Mexico State University (NMSU), and a graduate assistant from the same department.

The New Mexico Border Health Initiative

In light of the numerous barriers to care that are common on the U.S.–Mexico border, CdV applied for and received funding to develop the NMBHI in August 2000. The project targeted Luna, Hidalgo, Otero, Sierra, Grant, and Doña Ana counties. Doña Ana County (DAC) is the most heavily populated. As mentioned earlier, access to health care in the region is affected by widespread lack of medical insurance, a shortage of health care providers, and low income and formal education levels. Limited English proficiency and immigration status are other potential barriers along the border. Outside the largest city, Las Cruces, the area is predominantly rural, and people must travel long distances for health care services (New Mexico Department of Health, 1997).

When the NMBHI model was being developed for the grant proposal in 1999, the original idea was to use promotores to reach underserved communities by providing HIV testing and counseling. In Mexican public health systems, a promotor is an indigenous community volunteer, usually a woman, who has the trust of her peer community. Thus, Goal 1 was to develop and maintain a promotor program to increase the identification, testing, and enrollment of MSM, IDUs, and women at risk for HIV infection.

The intent was for promotores to test and enroll into care 10 newly diagnosed Latinos every year from 2000 to 2005, resulting in a program group comprising 50 people. The plan was to compare this program group to newly diagnosed Latinos who were entering care through referrals from local hospitals or STD clinics or as walk-ins to the CdV office. Goals 2 and 3 in the original proposal—to increase access to care through comprehensive case management and to support HIV primary care through client education—were to be directed at the 50 newly diagnosed clients. Goal 4 was to enhance the quality of care for all clients through provider training and education.

To carry out and evaluate those goals, a project coordinator, case manager, data manager, administrative assistant, four promotores, and a local evaluator were hired in fall 2000. HIV testing and data collection began in March 2001, and by the end of June, close to 100 people had been tested for HIV and had participated in the NMBHI study. One participant tested positive for HIV but was lost to follow-up.

CdV MISSION STATEMENT We are a nonprofit organization committed to connecting people affected by HIV/AIDS with prevention, community education, medical care, and support services promoting better health and well-being in the southern New Mexico border area.

 

By the middle of Year 2 and the completion of another 100 HIV tests, it became clear that finding 10 new Latino clients greatly exceeded what could be accomplished. Low HIV prevalence and incidence rates in the area were the most important reasons, but in addition, the promotores were unable to reach the highest risk populations because the targeted group differed from the traditional clientele of promotores.

Major personnel changes also occurred in the first 18 months of the program. The program coordinator, data manager, and local evaluator positions all changed, and two of the four promotores did not remain on the project. Taking into account those challenges, the new and continuing program and evaluation staff worked together to set more appropriate goals for outreach. With guidance from the multisite evaluation team at the University of Oklahoma, Goals 2 and 3 in the logic model were adjusted to include a broad focus on all CdV clients. Figure 4.2 shows the adjusted logic model adopted in Year 2.

Goal 1: Outreach

At the same time that the logic model was modified, closer examination of the outreach workers revealed that they were actually more like street outreach workers than promotores. Several important characteristics of the NMBHI outreach model set it apart from the traditional promotor model. The first and perhaps most important difference was that the NMBHI outreach workers were conducting outreach beyond their respective geographic communities. Another distinguishing factor was that the NMBHI outreach workers held full-time positions in addition to being contracted to conduct HIV outreach. To more accurately reflect the actual design, their title was changed to health outreach worker (HOW).

In addition to providing HIV testing and counseling in the field to people at risk, the HOWs were also charged with raising awareness about the importance of (1) knowing one’s HIV status and (2) the benefits of early detection. For people who tested positive, the ultimate goal of the HOWs was to support them in enrolling into care.

All the HOWs were selected on the basis of their having personal or professional experience with at least one targeted group. In Year 1 of the project, the HOWs received basic HIV/AIDS training and outreach training from the U.S.–Mexico Border Health Association. This training was tailored for promotores and included HIV testing and counseling using Orasure tests in the field. From Year 2 forward, the HOWs received HIV testing and counseling training from the NMDOH. Other mandatory training topics included data collection and safety in the field.

The NMDOH also provided early intervention nursing support from the onset of the NMBHI through July 2004.

Goal 2: Case Management

The second goal of the NMBHI was to increase access to HIV primary medical care and social services for people living with HIV in southern New Mexico. Comprehensive case management was the key in accomplishing this goal.

Unlike many other States, New Mexico made case management available to all applicants who presented proof of residence in the area, a gross income of 200 percent below the Federal Poverty Level, and verification of positive HIV status. Often, CdV clients transferred from other areas or were referred to the agency after being diagnosed through an emergency room visit or hospital stay.

To meet the needs of the increasing number of Hispanic clients at CdV, bilingual and bicultural case managers were recruited to provide case management in Spanish as well as English. A “prevention for positives” grant from the CDC allowed CdV to add a bilingual prevention case manager in Year 3 of the NMBHI. As the project evolved and barriers to care were identified, CdV moved to integrate case management with medical care by having ongoing patient care staffing conferences and additional in-service trainings on other HIV/AIDS medical issues.

FIGURE 4.2. New Mexico Border Health Initiative: Logic model.

Activities	Outputs	Outcomes
		Initial	Intermediate	Long-Term
Goal 1: Establish and maintain a health outreach worker (HOW) program to increase the identification, testing, and enrollment of men who have sex with men, intravenous drug users, and women at risk for HIV infection into HIV services in southern New Mexico
Train HOWs in culturally appropriate HIV testing and counseling; assess outreach efforts	Four HOWs identified, trained, and assessed	Increase HIV knowledge; improve testing skills and attitudes toward target populations	Increase outreach to people at high risk for HIV infection	Early identification of people with HIV infection and enrollment into primary care system (before diagnosis of AIDS)
Identify and recruit prospective clients (field outreach)	500 prospective clients contacted	Increase importance of being tested	HIV test and precounseling conducted	Early identification of people with HIV infection and enrollment into primary care system (before diagnosis of AIDS)
Conduct precounseling, HIV testing, and postcounseling	150 prospective clients tested for HIV	Increase understanding of importance of knowing HIV status	60 percent of results communicated and posttest counseling conducted	Early identification of people with HIV infection and enrollment into primary care system (before diagnosis of AIDS)
Linkage to HIV primary care	People who are HIV positive enrolled within 60 days	Improve attitudes toward entering system of care	70 percent of people identified with HIV enrolled in care	Early identification of people with HIV infection and enrollment into primary care system (before diagnosis of AIDS)
Goal 2: Increase access to HIV primary care and social services for clients living with HIV/AIDS in southern New Mexico through case management
Comprehensive case management Referrals to providers	Coordination and referral of services provided for 100% of clients	Reduce barriers to primary care	Increase in social support and client satisfaction	Maintain health outcomes (CD4 count, viral load, opportunistic infection) and quality of life
Goal 3: Support HIV primary care for clients living with HIV/AIDS in southern New Mexico through client education
Client education	Disease management education provided to all clients	Increase knowledge of disease management	Improve response to primary care (appointments and drug adherence)	Same as Goal 2
Goal 4: Enhance the quality of HIV primary care for clients living with HIV/AIDS in southern New Mexico through education and training of providers
Training and education for providers	Fifty providers trained (physicians, nurses, and staff)	Increase provider understanding of HIV care	Increase capacity of community health center providers to meet HIV standards for primary care	Same as Goals 2 and 3

Inputs were deliberately omitted.

Goal 3: Client Education

The third goal of the NMBHI was to provide client education to increase HIV disease management knowledge and adherence to care. In Year 2 of the project, the agency attempted to specialize education and adherence support for clients by hiring a medical social worker, adherence nurse, and adherence counselor. The idea was that those positions would augment the case management services already being provided by the case managers. After several personnel changes, the agency moved away from using specialized staff for client education and instead trained case managers to respond to a greater range of client concerns.

By Year 3 of the project, it also became apparent that the client was the only constant in a system with ongoing physician and case manager turnover. The NMBHI coordinator decided to offer educational trainings directly to clients in a variety of venues throughout the area. The response was positive, and the trainings became known as the Client Educational Series (CES). Simultaneous translation was always provided at the trainings, and eventually the series was offered in Spanish with English translation. The New Mexico AIDS Education and Training Center (NMAETC) and the Southern Area Health Education Center (SoAHEC) assisted in the coordination of the trainings. Many of the client trainings were scheduled in conjunction with the provider trainings as discussed below.

Goal 4: Provider Education and Training

The fourth goal of the NMBHI focused on training physicians and other health care staff to provide HIV primary medical care for PLWHA. This proved to be a lofty goal, given the ever-changing medical community in the region. In just 4 years, from 2001 to 2005, CdV had three medical directors. Staff turnover at partner agencies, such as the CHCs and the NMAETC, was also prevalent.

Two organizations that provided support in coordinating the provider trainings were the NMAETC, located 225 miles north of Las Cruces in Albu-querque, and SoAHEC, located in Las Cruces. Though complicated at times, the collaboration between the NMAETC, SoAHEC, and CdV proved beneficial for all parties. At least six trainings were offered per year, and attendance remained stable.

Institutionalization of Program Components

Although most of the NMBHI project and evaluation staff did not remain at CdV after 2005, several key programmatic components were institutionalized in the agency. For example, in relationship to Goal 1, two peer advocates continue to do HIV outreach in southern New Mexico, although the frequency has diminished considerably. Moreover, through the efforts of the project, the outreach program now has a training manual that has been customized to meet local needs.

Bilingual and bicultural staff have become a mainstay in the agency and have had a positive impact on case management. Materials are routinely translated into Spanish, and presentations for clients are always available in English and Spanish.

In addition to those changes, CdV received a 3-year grant in late 2004 from the U.S. Department of Health and Human Services Office of Minority Health (OMH) to provide cultural competency training to CdV staff and collaborating medical providers. The emphasis on meeting the needs of clients with limited English proficiency includes training for clients and staff on the Stanford Chronic Disease Management Model (Lorig, Ritter, & González, 2003).

Related to the third goal, HIV education continues to be provided to clients by all direct service providers in the agency. Through SPNS, a second avenue of education—the CES—has now been institutionalized. Client demand and attendance at CES trainings remains steady and collaboration with the NMAETC and SoAHEC persists.

Finally, provider education and training (Goal 4) has been institutionalized in agency programming. The coordinator for the OMH grant has taken the lead in making sure the trainings continue, and attendance has remained steady. An annual HIV/AIDS forum, first offered in 2004, was offered again in November 2005.

Coordination and Collaboration

Before the NMBHI, CdV already had an agreement with the two area CHCs and MMC’s Family Residency Program to provide medical care for CdV patients; however, the NMBHI required a higher level of collaboration. New elements introduced by the NMBHI included HIV education and training for clinical providers and the need to access patient medical charts for the multisite longitudinal study. A provider follow-up study conducted in Year 4 also required greater communication.

The partnership between CdV and the NMAETC enabled CdV to provide funding for many area physicians and health care clinicians to attend various workshops on HIV/AIDS in the Las Cruces area. An intensive training in Denver at the University of Colorado Health Sciences Center also was offered through the partnership. As indicated earlier, SoAHEC at NMSU provided CdV with support in planning and coordinating the provider workshops. In 2004, SoAHEC assumed leadership for the CES, and the NMAETC took the lead in providing educational training for medical providers.

Another partnership initiated specifically because of the NMBHI was with the sociology and anthropology department at NMSU. Having a local evaluator who was an adjunct assistant professor in the department was beneficial for both CdV and the department. Institutional review board approval, as well as graduate research assistance, was secured through the department. Lisa Frehill, an associate professor in the department, provided technical assistance for the local qualitative study and other research-related issues as they surfaced.

Implementation Issues

As mentioned earlier, many personnel changes occurred during the first year of the project. When the original project coordinator resigned at the end of Year 1, the prevention coordinator was moved into the position. She had experience as a disease prevention specialist with the district public health office, so her background added a new dimension to the project.

Another personnel change involved the project assistant/data manager, who started as an administrative assistant doing primarily secretarial work. Her appointment as data manager was based on her proven ability to manage data generated by the outreach workers. Her bilingual and bicultural skills were an added asset for the agency in serving Spanish-speaking clients because she interviewed most client participants enrolled in the SPNS study.

In addition to personnel changes during the first year, several other factors made it challenging to implement the project. At the time of award in 2000, CdV was a new agency (founded in 1999) with a small staff providing limited social services and contracted medical services. With the addition of outreach and provider training and an added emphasis on client education, the NMBHI stimulated change inside as well as outside the organization. This rapid expansion resulted in growing pains related to formalizing agency policies and relationships with other organizations.

Another challenge was related to the fact that the NMBHI was treated as a separate component in the agency in the proposal period and during the first year. Despite trying to integrate the project into the agency beginning in Year 2 through increased communication and staff involvement, the project was never fully integrated. The consequences included a lack of understanding about the project on the part of several staff members and reduced buy-in. No doubt the ongoing high turnover in personnel at CdV made it even more difficult to integrate the NMBHI. Regular case management positions changed seven times, the director position changed at the end of Year 3, and numerous changes occurred among prevention, administration, and adherence staff during the 5-year period of the NMBHI.

Evaluation

Evaluation was a key component of the NMBHI. The original contract evaluator was a faculty member based at a university satellite in El Paso, Texas. He had experience working with promotor models in HIV and was familiar with CdV. The agency decision to move away from the promotor model in the second year of the project led to a mutual decision by the agency and the local evaluator to terminate collaboration. The agency was able to secure the services of a local adjunct assistant professor at NMSU’s department of sociology and anthropology to assume functions of evaluation.

Although the simultaneous change in evaluator and project coordinator was initially thought to be a major setback for the NMBHI, the change actually enabled a concerted focus on the adjusted goals. Having a local evaluator also facilitated securing graduate research assistants (GAs) from the sociology and anthropology department at NMSU. One such GA worked on the project for 2 years and then remained on the project for another year after she graduated in December 2003. Toward the end of the project, a graduate of the NMSU master’s program in sociology was hired on a short-term basis to replace the data manager, who had taken a new job elsewhere.

Instrument Development and Data Collection

The NMBHI involved extensive data collection at both local and multisite levels. Unique instru-ments were developed at each of the five SPNS U.S.–Mexico Border Health Initiative sites to meet local evaluation needs. Instruments that allowed data collection across all five sites were developed by the multisite evaluation center at the University of Oklahoma with input from all the sites.

The NMBHI used a total of 17 modules to collect quantitative data from four populations: the HOWs themselves, people tested for HIV in the field, CdV clients, and medical providers who attended the trainings. In the first instance, two of the modules were used to assess the HOWs annually on their knowledge of HIV, HIV testing and counseling skills, and comfort levels with the target groups.

In collecting data from the second population—people contacted through outreach—the HOWs used three modules to collect basic sociodemographic data and risk factors. A fourth module documented the impact of the contact for the outreach recipients in terms of importance of early detection and knowing their HIV status.

With CdV clients, seven multisite modules were used to document a wide variety of indicators, including basic sociodemographics, risk factors, quality of life, and client satisfaction. Two additional local modules were developed to capture social support and client understanding of disease management. In addition to the quantitative modules, two qualitative studies were conducted with a small number of clients, one under the leadership of the University of Oklahoma and one directed by the local evaluator. Medical chart reviews were also conducted by the University of Oklahoma in Years 3 and 5 of the SPNS initiative.

The fourth study population, medical providers, completed a standard NMAETC training evaluation form after every training. In collaboration with the NMAETC, the NMBHI also conducted a follow-up study of 24 providers. This study involved a 20-minute, one-on-one interview and was modeled after a previous study conducted by George Huba at The Measurement Group.

CASE EXAMPLE The following case summarizes the experiences of several clients who participated in the local study of late entry into care. It does not focus on outreach because most new clients identified by the health outreach workers (four out of the five who received test results) were identified early in the progression of the disease. “Javier” is a middle-aged heterosexual Hispanic man who immigrated to the United States from Mexico when he was very young. After he graduated from high school and joined the job market, he had one experience, in the late 1980s, that put him at risk for HIV. In the late 1990s, he began experiencing headaches and fatigue, which he attributed to increased stress. By 2000, he was having bouts of diarrhea, which he thought were a result of his diet. Over several months, Javier went to two different primary care physicians and a dermatologist in order to “cure” his symptoms. To save money, he first went to a physician in the United States referred by a friend. After no improvement, he went to a physician in Mexico, also referred by a friend. During this period, he was given many prescriptions and home remedies for his ailments, but they persisted. He was then referred to a dermatologist, who tried several prescriptions. Finally, when his body was literally shutting down, as evidenced by thrush, blisters, wasting, and a decrease in nervous system functioning, he was offered an HIV test by the dermatologist. The test came back positive, and Javier was diagnosed with AIDS. When Javier was given his diagnosis, he was also given the phone number of the Camino de Vida Center for HIV Services (CdV) and urged to call immediately. When he came to CdV the next day, he met with the prevention case manager, who explained what HIV/AIDS is, how it is transmitted, and what the lab results mean. In addition, Javier was told about the services offered at CdV and invited to enroll. He was ready to enter care, so he was interviewed to determine his level of need. Because he was 100 percent below the Federal Poverty Level, he qualified for all of CdV’s services, including case management, housing assistance, insurance assistance, mental health and substance abuse counseling, transportation assistance, and public benefits (food stamps and Social Security disability). He was also referred to the main medical provider caring for CdV clients and was asked if he would like to meet with a mental health specialist. After the appointments were set up, Javier was given his case manager’s card in case he needed anything else before their next appointment. Since entering care, Javier has had monthly phone contact with his case manager and has met face-to-face with her at least three times per year. When Javier and his case manager talk, they discuss everything: how he is doing physically, mentally, and emotionally; when he last saw his primary care physician and had labs done; how he is doing with treatment adherence and medication side effects; prevention issues; and whether there are any substance abuse issues. The case manager also conducts an ongoing needs assessment with Javier to ensure that his needs continue to be adequately met. At the end of each conversation, Javier is encouraged to discuss any issues he might have with his case manager and physician. Finally, Javier is reminded that he can and should call his case manager whenever he needs anything, even if it is just to talk. In summary, Javier had a slow start getting diagnosed. Indeed, he never thought he was at risk because he was heterosexual, monogamous, and was not in the “drug scene”; he believes that if he had seen one doctor instead of bouncing around to different ones, he might have been diagnosed sooner. Nonetheless, he quickly entered into care at CdV and began to receive the appropriate services. He has since greatly improved and continues to do well.

 

Although every HOW was responsible for collecting data from people who were tested for HIV, the data manager collected most of the quantitative data from clients. Originally, the plan was to have case managers collect the data from clients, but for reasons of continuity, consistency, and time constraints, the data manager was assigned the dual tasks of both data collection and data entry. She was also responsible for correcting data errors and coordinating the qualitative interviews.

In addition to collecting quantitative data, a local qualitative study was conducted that targeted clients who entered medical care with a CD4 of 200 or less; the study’s purpose was to examine the role of relationships of any kind in entering medical care late. A local clinical psychotherapist conducted a series of three semistructured interviews with each of 10 clients in their preferred language. The findings will be used internally by CdV staff to inform their outreach and early intervention efforts. The findings also were disseminated through an article in AIDS Care (Lain, Valverde, & Frehill, 2007).

Organizational Impact

The NMBHI was CdV’s first experience requiring outcome evaluation at the local level. Even though introducing outcome evaluation into an existing service delivery system was challenging for both staff and the administration, the benefits of evaluation quickly emerged.

One such benefit for staff and agency administration was improved understanding of the diverse groups that make up the community that the agency serves. Before the NMBHI, agency services were planned on the basis of assumptions that lacked empirical evidence. One staff assumption, for example, was that Spanish-speaking service applicants would know that CdV had Spanish-speaking staff. CdV personnel were surprised to learn that prior to accessing services, close to 60 percent of the NMBHI Spanish-speaking participants assumed that no Spanish-speaking staff would be available at CdV.

Another benefit for some staff members in the agency was the increased capacity in program evaluation. To different degrees, staff members at CdV gained valuable experience in collecting, entering, cleaning, analyzing, and interpreting data. Because of high staff turnover, however, and the departure of SPNS project staff in 2005, many people who gained an understanding of evaluation went on to work in other agencies. In essence, many of the lessons learned from the NMBHI relating to the value of evaluation did not have a long-term impact on the agency.

Even after CdV applied for and was selected as one of 23 national sites for the Client Level Data Demonstration Program in 2003, the agency faced the same challenges with designing, implementing, and sustaining a model that incorporates evaluation into strategic decision making, program improvement, and client care management.

Lessons Learned

Developing and implementing the NMBHI was an invaluable experience. As a relatively new agency in a State with low incidence of HIV/AIDS, CdV staff received the benefit of learning about outcome evaluation through practical application. The NMBHI also facilitated networking opportunities with other colleagues working in HIV/AIDS in the border region, the multisite evaluation team, and HRSA staff.

Along with the benefits came critical, hard-learned lessons. For others embarking on a project like the NMBHI, both staff and consumer representatives must be involved early in developing the program and evaluation plan. It would have helped if the SPNS initiative had been viewed as an integrated program and an opportunity to define best practices within the organization from the outset. Involving an epidemiologist familiar with local statistics is also paramount, especially when projecting the number of new clients to be served.

Likewise, when designing the program, planners should pull from local resources rather than try to arrange long-distance partnerships. Entities from outside the region can provide certain kinds of technical assistance and training, but when it comes to day-to-day involvement, close proximity is key. Using formal and informal recruiting avenues can help expand the pool of candidates for various positions that need to be filled.

Once a program is up and running, it must be flexible, and the people involved must be willing to take risks. For example, it may be necessary to try several different approaches when trying to reach people most at risk for HIV/AIDS. In the case of the NMBHI, hiring HOWs who were PLWHAs proved to be the most effective way to identify new cases. Offering formal training sessions to clients as well as to the providers was another effective approach that was discovered because the coordinator was willing to take a chance. Neither option had been identified in the original plan or incorporated into the logic model.

Summary

The New Mexico–Mexico border region is primarily a rural area with its share of complex social problems, including high rates of poverty, low formal education levels, limited health resources, little to no public transportation, and confidentiality issues in small communities.

With funding from HRSA in 2000, CdV initiated the NMBHI to develop an HIV/AIDS care model under the auspices of SPNS. According to feedback from five CdV staff members and six health care partners interviewed at the end of the project, most of those interviewed believe the effort had a positive effect in the New Mexico border region. Strengths mentioned repeatedly in the interviews were related to outreach and the addition of peer advocates, documenting the barriers to care, the building of partnerships with other agencies, and provider training and education. HIV sensitivity in the community has increased; clients are more knowledgeable about taking control of their own health, seeking appropriate care, and asking the necessary questions; and providers feel more confident in meeting the needs of CdV’s diverse clientele.

The NMBHI can serve as a replicable model that can be tailored accordingly. At the local level, the NMBHI demonstrated the importance of integrating outcome evaluation. Ideally, the next step would be to institutionalize evaluation to ensure continual monitoring and improvement of HIV/AIDS care systems in southern New Mexico.

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