Addressing HIV/AIDS Latino perspectives and policy recommendations.

Editor's Note: In July 2003, the National Alliance of State and Territorial AIDS Directors (NASTAD) published a report that provides recommendations on how to develop programs and policies to effectively address the AIDS epidemic among Latinos.

NASTAD recommends offering ongoing training consultation to Latinos about HIV prevention and care-planning; creating public information and awareness campaigns that educate Latinos about their rights and available local services; and developing Latino leadership and expertise within government at the local, state, and national levels.

The report was developed by NASTAD's Latino Advisory Committee, staff, and consultants. Dr. George Ayala and Monica Nuno of AIDS Project Los Angeles served as primary authors. We have reprinted the Executive Summary of the report in its entirety with permission from NASTAD. To read the complete document visit NASTAD's web site at www.nastad.org. For more information contact Alberto M. Santana, MS. HIV Prevention Program Manager, NASTAD, 444 North Capitol Street, N.W., Suite 339, Washington, D.C. 20001-1512; phone: [phone]; fax: [phone].

EXECUTIVE SUMMARY

The HIV/AIDS epidemic among Latinos in the United States is as complicated as Latinos are diverse. The term Latino is a politically useful umbrella term with a potentially unifying effect. While useful, the term Latino masks significant differences among the populations included in the term: Mexican Americans (currently 60% of the Latino population), Puerto Ricans (about 15%), Cuban Americans (about 10%) and immigrants from the Dominican Republic, Central America, and South America. Latinos have settled in many parts of the country, including the Midwest and Northwest. Chicago, with 750,000 Latinos, now has the third largest Latino population in the country. Hence, the HIV/AIDS epidemic among Latinos is shaped by ethnic/cultural differences, migration, immigration policy, socioeconomic status, regional differences (Border States, Puerto Rico, air-bridge cities), and geography (rural vs. urban), as well as behavioral risk.

Latinos are now officially the largest ethnic/racial minority group in the U.S. (13% of the population), and account for 20% of persons living with AIDS, 19% of the cumulative AIDS cases reported through December 2001, and 19% of cases reported in 2001. Although men continue to make up the majority (80%) of AIDS cases among Latinos. Latina women represent a growing share of new AIDS cases reported among all Latinos each year.

Changing trends in the Latino population create specific demands on service delivery systems and require creative, coordinated and consistent uses of public resources. Moreover, resource allocations must keep pace with changes in the epidemic as well as population shifts.

Access to appropriate health care is hampered by numerous factors including: funding, stigma, racial discrimination, prejudice, fear of deportation, cultural and linguistic insensitivity, lack of knowledge about rights and available entitlements, quality of programming, and weak or fragile community-based capacity. There is a need to protect and enhance public insurance programs like the Ryan White CARE Act (RWCA) and the AIDS Drug Assistance Program (ADAP), given the relatively large proportions of Latinos dependent on these programs for care and treatment services. HIV prevention is under-funded and there are too few evidence-based interventions available to community-based providers targeting Latinos, especially Latinos at highest risk for HIV infection, namely, Latino men who have sex with men and injection drug users.

In some jurisdictions, community/participatory-planning processes (1) have been less than effective in addressing the specific HIV/AIDS prevention, care and treatment needs of Latinos. Latinos are not well represented on some planning bodies. Language barriers and the unwillingness or inability to provide interpretation services keep Latinos away. There is a continued divide between community stakeholders (planning members, community providers, consumers) and government (health departments), with many community stakeholders expressing suspicion about the actions of governmental officials. Suspicion expressed is rooted in histories of unethical and hurtful treatment of Latinos in public policies and research. Tokenism (the practice of making only a perfunctory effort or symbolic gesture towards accomplishing representation on planning bodies), the lack of ongoing training for planners, the unchecked politics of planning and the resulting lack of specificity in care and prevention plans all conspire to create planning processes that are less than adequate.

Latino communities are sometimes divided. Collaboration is often undermined by competition over limited resources, cultural and class differences, homophobia, and differences in philosophical approach. The bureaucratization (2) of the AIDS industry has created a disconnect between grassroots advocates and professionals, producing apathy on the part of highly impacted segments of the Latino population and making community mobilization difficult. This is troubling in light of some evidence that highlights the importance of community involvement and social activism at the grassroots level in promoting ownership of the issues. In some states or jurisdictions with large Latino populations there is a need to mobilize large, ethnically diverse and sometimes fractured Latino communities, to inspire their confidence and trust in the public health response to HIV/AIDS.

Race continues to be understood in dichotomous terms, Black and White. Latinos are often categorized or asked to self-select into racial groups, usually White or Black. Since racial categories are socially constructed, being "racialized" makes little sense to many Latinos for whom race has little salience. As a result, African Americans. Latinos and other people of color often feel pitted against each other, usually in competition for limited resources and political status, fueling already contentious planning processes and shutting down the possibility of multiracial/ethnic collaboration.

This policy document contains recommendations that can be used by governors, legislators, national partners, health departments and AIDS directors to address the challenges associated with HIV/AIDS in Latino communities discussed in further detail below. Recommendations offered are based on key issues that emerged from six months of research conducted in preparation for the development of this document. An extensive literature review was conducted in the following areas: policy, HIV/AIDS prevention, health services, and epidemiological research. In addition, 19 brief semi-structured phone interviews were conducted, audio taped and transcribed. Key informants were randomly selected from a master list provided by NASTAD of more than 100 Latinos from around the country, including Puerto Rico. Key informants included public health officials, behavioral/social scientists, community planning leaders, and staff from community-based organizations in large Latino population states and local jurisdictions and states and local jurisdictions where Latino populations were smaller and/or undergoing dramatic growth.

Twenty-five recommendations are offered that can be organized into six categories, and summarized as follows:

1. Work to improve access to prevention, care, and treatment services for Latinos regardless of their immigration or citizen status.

* Provide additional resources to support services to Latinos, including increased funding to Puerto Rico and states currently experiencing dramatic increases in Latino populations. Create, fund, and sustain services tailored to monolingual Spanish speaking and migrant/immigrant Latinos without regard to citizenship status. Create and support HIV prevention and care services to Latinos in and transitioning from correctional settings.

* Work to improve the coordination of services within and between states/territories and local jurisdictions.

* Combine RWCA/ADAP with state and local resources to expand prescription drug and medical services for uninsured Latinos.

* Support increased funding for the National Minority HIV/AIDS Initiative (MHAI). Now in its fourth year. the MHAI is a critical tool in the national efforts to eliminate HIV/AIDS related health disparities among racial and ethnic groups.

* Develop resource allocation methodologies that are consistent with, and that anticipate, local need. States, territorial and local health departments should work in close collaboration with planning bodies to ensure that resource allocations are commensurate with systematically demonstrated need.

* Support basic HIV/AIDS educational efforts targeting Latinos. Information about HIV/AIDS including modes of exposure, strategies for preventing HIV infection, the natural history of the disease, the importance of early detection and early treatment, and current treatment approaches should be broadly disseminated and constantly updated.

* Create public information and awareness campaigns that educate Latinos about their rights and entitlements as well as the availability and location of services locally.

* Build and support local, community-based capacity.

* Establish and uphold the highest standards for culturally competent care.

* Provide and support cultural competency training.

2. Make participatory planning processes more responsive to Latinos.

* Request and endorse a broader range of participatory mechanisms and greater clarity from the CDC and HRSA regarding the roles of various stakeholders in planning processes.

* Actively guard against conflict of interest when seating a community planning group or planning council.

* Offer ongoing training and consultation to Latinos about planning.

* Offer interpretation services whenever possible and appropriate.

3. Tap into, develop, and support Latino leadership.

* Acknowledge and seek out the contributions and counsel of Latino leaders regarding critical public health issues and decisions affecting Latino communities.

* Develop Latino leadership and expertise inside of health departments at the state and local levels and within federal agencies at the national level.

* Build and support advocacy capacity in Latino communities on policy issues.

4. Organize and mobilize Latinos.

* Encourage and support coalition work within Latino communities and between Latinos and other people of color.

5. Support local and national research.

* Identify opportunities and resources for research.

* Support formative research as part of the program design and development process.

* Promote a strong research/practice interface. Community-based research should, by design, create genuine opportunities for meaningful input and involvement of Latinos beginning with the definition of the problem and including research design, analysis and interpretation.

* Collect and report user-friendly data on Latinos for planning and program development purposes.

6. Consider establishing international collaborations.

* Establish bi-lateral memorandum of understanding (MOU) with health departments in Mexico, Puerto Rico, the Dominican Republic, Cuba, and countries in the Caribbean, South and Central America as appropriate.

* Engage and support Latin American consulates to deliver public health and HIV prevention messages to Latinos.

* Actively engage non-governmental organizations working to address HIV/AIDS in Latin American countries.

It is our hope that health departments and other public health officials at the state and federal levels will find these recommendations useful as they formulate proactive responses to the epidemic within Latino communities in their respective jurisdictions.

1. References to planning processes in this document will refer to the activines of both Ryan White CARE Planning Councils and HIV Prevention Community Planning Groups unless otherwise specified.

2. The term "bureaucratization" refers to the creation of administrative systems, marked by hierarchical authority among numerous offices, in which the need or inclination to follow rigid or complex procedures impedes effective action.

National Alliance of State and Territorial AIDS Directors

Washington, DC