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Consumer Involvement

Providers and health planners had learned through the horrific service environment encountered by PLWHA in the 1980s that involvement of PLWHA is essential to building a stigma-transcending approach to care and services. Consumer involvement via Planning Councils and consortia is legislatively mandated. Consumer involvement, as detailed below, has been further encouraged and facilitated in the Ryan White HIV/AIDS Program at a level perhaps not seen in any other health care program.

  • Consumer representation on planning bodies helps to ensure that services reflect the needs of clients and that the way services are offered help PLWHA overcome barriers to care.

  • Consumer Advisory Boards created by grantees and providers help develop programs that mitigate the impact of stigma. Their value cannot be overstated.

  • Consumers, from the beginning of the epidemic, have worked as professionals in the planning, administration, and delivery of HIV/AIDS care services. The Ryan White HIV/AIDS Program created new opportunities—and a new level of need—for consumers to participate in service delivery. Beyond their extraordinary professional contributions, their presence increases an organization’s ability to reflect the PLWHA community—a quality known to help PLWHA reach past isolation and access, and stay in care. This reflection—whether of skin color, gender, or shared experience—can increase the level of empathy PLWHA are able to sense from the Ryan White community and can increase the capacity to “connect” with one another.

  • Consumers also work as peer counselors and educators. These roles repeatedly has been shown to be one of the most effective mechanisms for addressing the effects of stigma on PLWHA who have not been tested for HIV, who have not yet enrolled in care, or who may struggle to stay in care over time.

  • Similarly, the participation of consumers in support groups where PLWHA find acceptance and encouragement has been shown to be essential for many individuals struggling to cope with—in addition to the medical aspects—the social and interpersonal implications of being HIV-positive. “Support groups” may, of course, be viewed as a service provided through the Ryan White HIV/AIDS Program. But, more meaningfully, they represent an opportunity for consumers to be heard and to make a much-needed and highly valuable contribution to the healing of those around them.
Photo of a woman at the door of the NW AETC in Seattle

AIDS Education and Training Centers (AETCs)—like the Northwest AETC in Seattle, WA—have provided critical trainings through preceptorships, Web-based learning modules, clinical conferencing, and more to ensure that providers offer best practices and truly culturally competent care.

Cultural Competency

At the advent of the HIV/AIDS pandemic, the larger medical and social services systems in America were not culturally competent. And the effects were nothing short of devastating for PLWHA. It was one thing to be caught in the downward physical spiral of then-untreatable HIV/AIDS disease that robbed you of independence, dignity, and ultimately, life. It was another to be avoided by the medical system and ignored by the social services system just because of who you are.

Cultural competency, however, is teachable, and the creators of the first HIV/AIDS programs and the Ryan White HIV/AIDS Program did everything in their power to ensure that PLWHA encountered empathetic, culturally knowledgeable, and supportive providers. Grantee and provider guidelines required that applicants illustrate their cultural competency to serve target populations. This important program expectation could not be accomplished simply by putting words on a page; applicants had to clearly demonstrate their capacity, commitment, and success at serving the populations infected with and affected by HIV/AIDS. It has been a critical success of the Ryan White HIV/AIDS Program that the Ryan White community realized and acted on the fact that having the cultural competence to treat one population did not mean an organization had the cultural competence to treat another.

In addition to the clinical training they provide, the national and regional AIDS Education and Training Centers Exit Disclaimer (AETCs) have played a pivotal role in helping clinicians acquire cultural competency to serve PLWHA isolated by HIV/AIDS stigma, and stigmas related to personal characteristics, socioeconomic factors, and more. For example, the AETC National Multicultural Center at Howard University focuses specifically on developing and refining curricula and tools to improve the effectiveness of clinicians and organizations providing care to HIV patients from various ethnic and cultural backgrounds. The AETC National Center for HIV Care in Minority Communities project at HealthHIV in Washington, DC, provides technical assistance and capacity building training to community health centers across the country.

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