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PROVIDING HIV/AIDS CARE IN A CHANGING ENVIRONMENT — July 2006

HIV/AIDS Care in the Border Region: Demystifying the Misconceptions

Suppose you are a seasoned provider of HIV care in an urban clinic funded by the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. You have been asked to come to a small clinic in the region along the border between the United States and Mexico; the clinic has received an innovative private grant to fund a 1-year position for a doctor with your experience. The goal is for you to provide care alongside the local doctors to bring them up to speed in the latest approaches to HIV/AIDS treatment. Your clinic is experiencing an influx of Hispanic patients, so you also hope to learn a lot from the providers and patients at the rural clinic.

Based on your experience and what you have heard about the border region, you assume the following:

After a week at the clinic, you find out that your assumptions were a little off the mark.

Public Health Along the Border

The U.S.-Mexico border region is defined as an area that extends 62 miles (100 km) on either side of this 2,000-mile border between the United States and Mexico.1 About 12 million people live in the region. The area is one of the poorest in the United States, and the unemployment rate is 250 to 300 percent higher than in the rest of the Nation.2 An estimated 350,000 people live in colonias, which are impoverished communities that have no public drinking water or waste-water systems. Residents of colonias, which are most numerous in Texas and New Mexico, tend to be Hispanics born in the United States.3

In contrast, the border region is one of the most economically prosperous areas in Mexico, in part because of its high concentration of assembly plants (maquiladoras) and other industries. Many Mexicans have migrated to the border region to work in the maquiladora zone (see box, "What Is the Maquiladora Zone"). Thousands of people legally cross the border into the United States every day: In 2004, more than 93 million northbound passenger crossings in personal vehicles and more than 48 million pedestrian crossings took place in 25 ports of entry there.4 This continual movement has serious implications for transmission of infectious diseases of all kinds. A recent report produced by the Border Infectious Disease Surveillance Project stated, “From an epidemiological perspective, the border population must be considered as one, rather than different populations on two sides of a border; pathogens do not recognize the geopolitical boundaries established by human beings.”5

What Is the Maquiladora Zone?

According to the U.S. Treasury Department’s International Trade Data System, the term maquiladora comes from the word maquilar, which means “to submit something to the action of a machine.” The word maquiladora is also applied to the production facility that processes or assembles components into finished products. Maquiladoras import component parts from the United States or other countries and export the finished product by selling them to a another maquiladora or exporter. The maquiladoras were created in 1965 by the Mexican Border Industrialization Program, which allowed U.S. and other foreign companies to assemble their products in Mexico.

Source: U.S. Department of Treasury, International Trade Data System. 2004. Maquiladora. Available at: www.itds.treas.gov/maquiladora.html.

Public health issues abound in the border region. Residents suffer disproportionately from environmental and other health problems, including hepatitis A; tuberculosis; measles; and water-borne diseases, such as shigellosis.3 In addition, diabetes is a problem in the border region because it has a high incidence among Mexican-Americans, who make up more than 50 percent of the population of the U.S. border counties.3 The border region’s rapidly growing population exacerbates the lack of adequate housing and consequences of pollution, which together help drive the high rates of disease.3 People living with HIV/AIDS (PLWHA) in border communities face limited access to care and high risks to health from endemic diseases.

HIV/AIDS Along the Border

In a study of the relation between migration to the United States and AIDS cases in Mexico, Magis-Rodriguez et al. observed that migration from Mexico to the United States can create an environment in which “numbers of sexual partners increase among men, and as a consequence of the loneliness, isolation, lack of women, and insertion in a ‘more open’ society . . . relations increase with male partners and/or with prostitutes who are often intravenous drug users [IDU].”6

Such conditions foster the spread of sexually transmitted diseases, including AIDS. Magis-Rodriguez found that among both men and women, international migrants had a higher number of sexual partners than nonmigrants. No differences were found between migrants and nonmigrants in the proportion of men who had had sex with men (MSM).6 The researchers suggested that the evidence indicates a link between migration of Mexicans to the United States and increased high-risk behavior.

Other data suggest that migration has an effect on HIV infection rates, particularly migration from the United States back to Mexico. Magis-Rodriguez et al. noted that 6,060 (12.7 percent) of the 47,617 cumulative AIDS cases in Mexico as of 2000 had lived in the United States. The California-Mexico AIDS Initiative, a joint program coordinated by the Mexican Secretariat of Health and the University of California-Los Angeles Office of the President, found rates of HIV infection among Mexican migrants in California and Mexico ranging from 0.6 to 1.1 percent—more than 3 times higher than the infection rate for the general population in Mexico (0.3 percent).7,8

CARE Act Response

Recognizing the unique public health needs of the border region, the CARE Act Special Projects of National Significance (SPNS) program funded the U.S.-Mexico Border Health Initiative to diminish health disparities among PLWHA in the border region. The goals of the 5-year initiative, which ended in 2005, included developing models of community-based health care networks along the border that improve the early identification and treatment of HIV disease and building the capacity of federally funded Community and Migrant Health Centers (CHCs) to provide quality HIV/AIDS primary care.

SPNS Grantees

Five projects (see box, "SPNS Grantees"), along with a cross-site evaluation center at the University of Oklahoma (the Centro de Evaluación), received funding under the SPNS initiative. Each project involved collaboration with local CHCs to provide care and outreach to bring people into testing and reduce the time between seroconversion and entry into care.

Each SPNS grantee provides services in a unique care environment, and the grantees’ approaches under the initiative reflected that diversity. Outreach therefore took place everywhere from truck stops to border crossings to house parties. The use of trained paraprofessionals, referred to as outreach workers or promotores, was a common outreach strategy to link the at-risk populations with professional public health or medical care providers. Another strategy of the initiative was to secure the active participation of CHCs in a collaborative approach to providing medical care and essential support services. The HIV/AIDS Bureau’s (HAB) AIDS Education and Training Centers (AETCs) nearest each project played a key role in provider and outreach worker training.

The project included a cross-site survey of clients that required grantees to complete six data collection instruments for each person receiving care in the SPNS project. The grantees collected data on a total of 1,200 HIV-positive clients brought into care. In addition, the grantees continually consulted with each other, the Centro de Evaluación, and the AETCs to resolve implementation issues that arose along the way.

SPNS Grantees

  • The Arizona Border HIV/AIDS CARE (ABHAC) Project. El Rio Neighborhood Health Center/Special Immunology Associates (SIA) in Tucson, AZ, the lead agency for the ABHAC Project, serves more than 70,000 patients (more than 1,400 of whom are PLWHA) at eight locations in the Arizona counties of Cochise, Santa Cruz, Pima, and Yuma. In the ABHAC model, outreach efforts among the project partners and existing promotore (lay community health worker) programs were expanded by increasing staffing levels at the project partners. Providers at three CHCs increased their ability to provide HIV care through the assistance of an SIA physician, who co-managed patient care and provided ongoing consultation and education to the providers.
  • The Southern California Border HIV/AIDS Project. The San Ysidro Health Center (SYHC), lead agency of the project, has provided low-cost, comprehensive health care to residents of San Diego County’s South Region since 1969. The area SYHC serves has high rates of unemployment, lack of insurance, and poverty and low levels of educational attainment. The SYHC worked with three other CHCs to coordinate care and expand outreach using outreach workers, case managers, and a social marketing campaign.
  • The New Mexico Border Health Initiative. Camino de Vida, a private, nonprofit agency in Las Cruces, NM, served as the lead agency for the New Mexico initiative, which served five counties covering 21,000 square miles. Unlike the other projects, Camino de Vida did not provide primary care but instead linked clients with a network of 15 care providers. The initiative used health outreach workers to identify and enroll people into care; increase access to HIV primary care and social services for PLWHA; and enhance the quality of care through provider training and education.
  • Proyecto Juntos (Project Together). The Valley AIDS Council (VAC), the lead agency for Proyecto Juntos, provides one-stop medical and social services at clinics in Brownsville, Harlingen, and Eagle Pass, TX. The service delivery model in Proyecto Juntos consisted of a physician and nurse at each of three CHCs. The nurses coordinated care and referrals across the CHCs and the VAC clinics; VAC provided case management for all clients.
  • The Border HIV Disease Management Model. Centro de Salud Familiar La Fe, the lead agency for the project, provides a continuum of services for El Paso County, TX, and is the sole provider of HIV/AIDS care in the area. Nurse-led care teams that provided social and medical case management and emphasized treatment adherence, assessment, education, and counseling were key components of the model.

Surprising Findings

The SPNS project’s cross-site survey of clients revealed barriers to care that were not predicted at the outset. The top barriers were

The findings underscore the need for all providers to truly understand their clients’ issues and barriers. For example, is transportation really a barrier, or are patients not coming for care because they think their benefits have been exhausted?

Other project findings might surprise many providers, and they underscore the need to look deep into the local environment to understand what makes it unique:

Table 1. People Living With HIV and AIDS, SPNS Project and United States, by Transmission Category, 2004
Transmission
Category
SPNS Project
(N = 1,200)
PLWA, United
States (%)
(N = 415,193)*
Hispanic/Latino
PLWA, United
States*
MSM 56.2 44.6 40.1
Heterosexual contact 28.8 22.9 23.5
Injection drug use 9.1 23.7 28.9
Other 6.0
1.7 1.3
PLWA, people living with AIDS.
*Percentages may not add to 100 because other Centers for Disease Control (CDC) transmission categories are not included here.
Sources: Sonleitner N, Keesee M, Ahamad ASG, et al. HIV/AIDS along the U.S.-Mexico Border: a description of demographics, lifestyle and culture, risk factors, quality of life, and barriers reported by HIV-positive clients living in the U.S.-Mexico border region. Norman: University of Oklahoma Center for Applied Social Research; 2005; and CDC. HIV/AIDS Surveillance Report. 2004;16:21. Table 11.

Table 2 provides additional information on the SPNS project service areas.

Table 2. Hispanic/Latino Population, SPNS Project Service Areas and Statewide
SPNS Project Hispanic/Latino Population (%) Statewide Hispanic/Latino Population (%)
Arizona (ABHAC) 34.1 25.3
California (San Ysidro) 28.9 32.4
New Mexico (la Fe) 75.5 42.1
Texas (El Paso) 78.2
32.0
Texas (VAC) 85.9 32.0
Source: Sonleitner N, Keesee M, Ahamad ASG, et al. HIV/AIDS along the U.S.-Mexico Border: a description of demographics, lifestyle and culture, risk factors, quality of life, and barriers reported by HIV-positive clients living in the U.S.-Mexico border region. Norman: University of Oklahoma Center for Applied Social Research; 2005.

Although these findings are surprising, remember that they reflect only the patients participating in the SPNS project. Providers’ assumptions about the population not in care are not necessarily wrong. It may be, for example, that the program reached people with the fewest barriers and that many people not receiving care for HIV do, in fact, face the predicted—and other—barriers.

Lessons for All Providers

Every SPNS site faced a unique population and a unique set of circumstances, and each project met with different successes and challenges. Although the Centro de Evaluación will provide a technical evaluation report, including an analysis of medical outcome data, many of the informal lessons learned through project implementation have implications for all CARE Act providers.

Know Your Audience

Many assumptions about a given patient population, even those held by experienced providers, simply are not true—or may have been true at one time, but no longer apply. Providers should be willing to discard preexisting notions about the population they aim to serve. In short, if providers are basing their programs on data from a 10-year-old patient survey, it is time to update those data. Surveys that include culturally appropriate questions may yield more useful data.

In the SPNS project, it was discovered that the border population most in need of care varied from site to site. Proyecto Juntos had a larger proportion of female clients than the other sites; the New Mexico and Arizona sites served significantly more non-Hispanic males than any of the other sites. In addition, factors such as residents’ vernacular and expectations about health care varied somewhat from site to site.

Data showed that the AIDS epidemic on the border does not mirror the epidemic in other parts of the country. The target population did not have significant levels of IDU, and the people at greatest risk (after MSM) were heterosexual women. Risk-reduction efforts need to place a greater emphasis on Latina women, says ABHAC’s Trujillo, because “they are the educators and caregivers.” He observes that women often “become a catalyst for their spouse’s medical adherence” because they are willing to take responsibility for ensuring their husband’s adherence and will raise issues such as medication side effects with their spouse’s provider.

Know Your Staff

People living in areas with high concentrations of PLWHA often take for granted that health care professionals are up to date on HIV treatment, but those who provide HIV care need continual learning opportunities to stay current with the standard of care. Particularly in rural areas, because of competing public health priorities, clinic staff may need supplemental training. Bob Smith, Proyecto Juntos project director, notes that CHCs in general have high turnover because of difficulty persuading new doctors to work and stay in Health Professional Shortage Areas; the turnover creates ongoing training needs. And providers in rural settings face enormous logistical barriers to continuing education: Clinic staff may want to know more about treating HIV disease but find it difficult to find the time for training in distant locales. Improved opportunities for distance learning can help ameliorate this problem.

Before the SPNS initiative, staff and clinicians at partner organizations often had not received training in HIV/AIDS treatment and had a variety of misunderstandings about the disease. Training varied from site to site and covered everything from diagnosis and treatment to data collection, maintaining confidentiality, patient interviewing techniques and, sometimes, basic information about HIV/AIDS. Across sites, efforts to train providers were complicated by time and financial constraints as well as the fears of some workers about working with HIV-positive clients (Proyecto Juntos staff had to dispel one provider’s concerns about “airborne AIDS”). AETCs provided valuable support for the training of nurses, physicians, nutritionists, and HIV case managers.

Project managers must consider not just the clinic staff but also the outreach workers and other staff. As Curiel notes, “The target population needs to feel safe with you. It’s one thing to have your personal discomfort, but as a professional, you can’t pass judgment. . . . Paraprofessionals [such as outreach workers] need some relation to the target population.”

“The decision to include HIV-positive peers brings with it strengths and challenges,” notes the El Paso site’s final report. “[But] it can be difficult to delineate in which areas of care they should be directly involved and how much input they should have in the decision-making process. The teams sometimes struggled with finding the right balance.” Conversely, at two of the Southern California Border HIV/AIDS Project sites, promotoras who conducted outreach activities with farmworkers had little experience in the field of HIV/AIDS and were hesitant to ask personal questions involving sexual practices and orientation. They received additional training from experienced urban area outreach workers, which improved their outreach skills. The training also addressed issues of HIV-related stigma—which was an important factor with target populations, outreach workers, and clinic staff across all project sites, not just the San Ysidro site.

The Workplan Must Match Reality

“Reality has a way of setting limits,” notes the El Paso site’s final report. All grantees had to adjust their original plans to accommodate such issues as patients’ work schedules, limited bilingual staff with appropriate training, and increased client caseloads. At one Southern California Border HIV/AIDS Project site, the target population was modified when sufficient numbers of youth sex workers were not found. At the New Mexico project, unanticipated growth in the number of clients (due to the closing of another clinic) and the fact that bilingual nurses were difficult to recruit led first to a change in nurse-led care team structure and, later, to the dismantling of the nurse-led care team model altogether in favor of a standard multidisciplinary team approach. (Although all clinics had bilingual staff members, the sites as a group suffered from a shortage of bilingual medical professionals.)

The New Mexico site altered its approach from a traditional “storefront” promotore model to a “peer advocate” model, because the initial approach was not reaching the target population. The peer advocates, who are HIV positive themselves, brought new patients into care and helped patients already in care deal with their fears and other concerns.

Remember the Power of Stigma

According to Smith, at one Proyecto Juntos clinic charts for patients with HIV were kept in a separate, locked file. The folders themselves had red dots on them. Staff thought they were taking steps to ensure confidentiality, when in reality, segregating the files only drew attention to them. Proyecto Juntos staff helped the clinic find a better way to ensure patient confidentiality.

At ABHAC, concerns about stigma led to changes in the workplan so that the physician with HIV expertise played a more consultative role. The way the project was originally structured, the expert physician visited on certain days; however, the physician’s presence on those days flagged the patients as needing HIV care (because the “AIDS doctor” was there). In the restructuring, patients made appointments with their regular doctor, and the consulting physician participated in the visit but did not play a primary role. The revised approach made the physician’s presence less obtrusive and helped maintain patient confidentiality.

Across the sites, even though MSM was a risk factor for many men who tested positive, stigma led many of them to deny the behavior. Rather, they tended to “blame a prostitute—and it was ‘only one time’,” says Trujillo. In one instance, he says, a woman caught her HIV-positive husband with another man, yet he still would not acknowledge MSM as a risk factor. Many programs focused on high-risk behaviors, not sexual orientation, in outreach to MSM who did not identify as gay.

Small-town residents have serious concerns about maintaining confidentiality. At all sites, project staff noted a tendency among participants to seek testing or care in the nearest big city or other community. For example, Smith observed that many Proyecto Juntos clients who lived in Brownsville would seek care in Harlingen, and vice versa. Encouraging clients to seek care locally was a challenge of all the SPNS projects.

Buy-in Is Crucial to Success

At SYHC, obtaining buy-in from managers of partner clinics overseeing the initiative was vital. Leadership needs to be actively involved because staff enthusiasm for any project, especially one that is perceived to create “extra work,” inevitably wanes as the novelty wears off. “Financial support is correlated with buy-in,” Smith observes. Proyecto Juntos enjoyed good relationships with participating CHCs, but it was difficult to sustain their interest in the project once funding ran out.

In some cases, the influx of funding for HIV services required expanding management capacity and challenged the functioning of community-based agencies delivering care. In response, HRSA project officers, Centro de Evaluación staff, and local evaluators supplied technical assistance and support to service providers through modes ranging from phone consultations to site visits to biannual grantee meetings.

Use Culturally Appropriate Methods

The Proyecto Juntos outreach campaign included TV, radio, and print materials. A TV ad targeting Latina women that encouraged them to get tested for HIV received the strongest response. “The Dios mio! factor was key,” says Smith. In other words, the women were concerned enough about what they heard to seek HIV testing. When Proyecto Juntos ran the same ad (with English-speaking actors) targeting the Latina women’s English-language counterparts, the response was minimal: just eight phone calls. Smith hypothesizes that English speakers may be more used to hearing messages about the importance of HIV testing.

ABHAC’s Trujillo observes, “Latina women were an integral part of the project; it was not your typical outreach strategy.” He notes that the women targeted generally do not ask their husbands and boyfriends what they are doing when they are away—a “don’t ask, don’t tell” approach. They often are reluctant to talk about matters related to sex. Yet, they often play crucial roles’ in their HIV-positive partners’ treatment adherence. The ABHAC promotoras hosted house parties for women, where outreach workers provided information on HIV and risk reduction in the context of broader health issues. The strategy was effective because it provided a comfortable, nonpublic venue for friends to learn about HIV. ABHAC worked with the local health department to provide oral HIV testing at the house parties.

Finally, in working with Hispanic populations, time must be allowed for translating documents to Spanish and pilot testing translated data collection instruments. Regional language differences must be accounted for.

Collaborate and Communicate

To achieve results, the relationship among project partners must be based on a foundation of mutual respect and trust. According to Curiel, the five grantees and the evaluation center experienced an extraordinary level of cooperation and communication, which helped build that trust and contributed to the success of the project. The collegiality also helped ensure high-quality data collection across sites as well as a willingness among sites to ask for assistance if they needed additional training or other resources. The Southern California Border HIV/AIDS Project, for example, found that community agency and academic partnerships were fruitful in promoting shared learning experiences; academics learned about improving the community-level and cultural relevance of questions, and community agencies benefited from systematically collected data and summary data findings that could be used for future funding opportunities. Ongoing collaboration and communication about emerging issues with clinical partners, as well as with local AETCs, Ryan White planning bodies, and Centers for Disease Control and Prevention community planning groups, helped all parties find solutions to implementation problems.

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Conclusion

The care and outreach models developed in the SPNS initiative can be adapted to other resource-poor settings addressing issues related to borders, minorities, and language barriers—but to do so, providers must truly understand their client base. Providers everywhere may not know as much about their patients and clients as they think they do.

Many assumptions in project planning—from staff capabilities to existing processes to appropriate outreach methods—must be adjusted to accommodate reality once the project is up and running. Simply gathering a little information can yield significant findings that can be used to improve care, in ways that do not require large outlays of scarce financial resources. Providers can ask questions such as the following:

Curiel notes that because of the SPNS program, all sites have increased their commitment to ongoing data collection as a tool for quality assurance and program evaluation. The Centro de Evaluación is assessing the extent to which the initiative fulfilled unmet care needs, eliminated barriers to care, optimized local service delivery systems, improved the quality of care, and adapted to client needs. Medical outcomes data are still being analyzed. The findings of the cross-site demographic survey are available at www.ou.edu/border. Because the SPNS project took time to gather information about its clients, project participants were able to improve care for their patients in many ways. And that lesson will always be relevant

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References

  1. U.S. Department of State. Environmental Cooperation: Agreement Between the United States of America and Mexico signed at La Paz. Washington, DC: U.S. Department of State; Aug. 14, 1983.
  2. Sonleitner N, Keesee M, Ahamad ASG, et al. HIV/AIDS along the U.S.-Mexico Border: a description of demographics, lifestyle and culture, risk factors, quality of life, and barriers reported by HIV-positive clients living in the U.S.-Mexico border region. Norman: University of Oklahoma Center for Applied Social Research; 2005.
  3. Bureau of Primary Health Care (BPHC). n.d. U.S.-Mexico Border Health. Available at: http://bphc.hrsa.gov/bphc/borderhealth/default.htm.
  4. U.S. Department of Transportation, Research and Innovative Technology Administration, Bureau of Transportation Statistics, Border Crossing/Entry Data. 2005. Available at: www.bts.gov/programs/international/border_crossing_entry_data/.
  5. Weinberg M, Waterman S, Lucas CA, et al. The U.S.-Mexico Border Infectious Disease Surveillance Project: establishing binational border surveillance. Emerg Infect Dis [serial online] 2003;9(1). Available at: www.cdc.gov/ncidod/EID/vol9no1/02-0047.htm.
  6. Magis-Rodriguez C, Gayet C, Negroni M, et al. Migration and AIDS in Mexico: an overview based on recent evidence. J Acquir Immune Defic Syndr. 2004;37(suppl 4):S215-S226.
  7. U.S. Agency for International Development. Health Profile: Mexico. 2005. Available at: www.usaid.gov/our_work/global_health/aids/Countries/lac/mexico_05.pdf.
  8. Barclay E. Mexican migrant communities may be on verge of HIV/AIDS epidemic. Washington, DC: Population Reference Bureau; 2006. Available at: www.prb.org; click on HIV/AIDS tab.

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For More Information

To obtain information on Medicare plan options and enrollment materials: www.medicare.gov. Toll free: 800-MEDICARE. (800-633-4227) TTY: 877-486-2048.

To locate Social Security Offices: www.socialsecurity.gov/locator. Toll-free: 800-772-1213. TTY: 800-325-0778.

To find the nearest Medicaid office, contact the State Medicaid agency.

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