Promoting Greater Involvement of People Living with HIV/AIDS

Adapted from USAID Community REACH

Uday Sonawane at the drop-in-center of Humsafar Trust in Vakola, Mumbai, India. He is HIV positive and works as a counselor motivating HIV positive people to access treatment. Uday has been trained as a research investigator and recently completed a research project that studies the level of stigma and discrimination faced by HIV positive men who have sex with men and transsexuals in India. Source: USAID/India

PLWHA Benefit Communities, Individuals, Themselves

At the community level, the involvement of PLWHA destroys myths and diminishes fearful and prejudiced responses to HIV, leading to a more compassionate and caring social environment. Often, PLWHA are the only individuals able to reach marginalized populations, such as drug users, prisoners, and sex workers. PLWHA engagement demonstrates that HIV-positive people are active and productive and contributing members of society with a great deal to contribute. While PLWHA engagement within the community changes the perceptions about HIV, it also has an impact at the individual level. As PLWHA become involved, they realize that they share similar experiences and are part of a larger movement with the potential to shape and influence politics and policies. Involvement improves self-esteem and offers a sense of personal empowerment, while decreasing feelings of shame, stigma, isolation, or depression. For many HIV-positive individuals, involvement at any level helps re-establish social relations and self-efficacy and improve psychological as well as physical health. It has also been demonstrated that involvement positively affects the health of PLWHA through increased access to information on prevention, care, and treatment.

Investing in PLWHA

The current movement led by PLWHA emphasizes that greater involvement of PLWHA cannot take root without financial investment in individuals. Investment in PLWHA is fundamental to developing and driving policies, establishing social practices, and demonstrating commitment to improving the lives of PLWHA. While levels of financial investment vary with each country and cultural context and must be adjusted to national, environmental, political, and community factors, financial investment in human resources is important to support continuous capacity building. PLWHA require skills training to ensure that they are effective champions in their roles within organizations, communities, and governments. Training could address:

• Communication
• Leadership
• Policy and advocacy
• Fundraising and proposal development
• Business practice and management
• Diplomacy
• Public speaking

Literacy in the basic science of HIV is also essential. PLWHA need up-to-date training in areas, such as prevention, care, and treatment; HIV counseling and testing; prevention of mother-to-child transmission; and human rights, stigma, and discrimination, if they are to understand their own HIV status, communicate effectively with providers, and advocate for high-quality care and treatment. Finally, financial investment is needed so that PLWHA can support themselves and their families while participating in programmatic and policy initiatives.

How USAID Promotes Greater Involvement of People Living with HIV/AIDS

As an international development agency, USAID works with a vast network of national and local partners to implement and sustain HIV/AIDS programs throughout the developing world. One such program that USAID supports, Pact’s Community REACH (Rapid and Effective Action Combating HIV/AIDS) provided two-year grants to local nongovernmental organizations (NGOs) worldwide to address issues related to positive prevention, care, and support for PLWHA; engagement and support for community caregivers involved in home-based care; and support for community engagement in antiretroviral therapy programs. In addition to focusing on donor-driven priority needs, such as scale-up for care and treatment and service delivery, Community REACH continued to actively encourage and promote the GIPA Principle. All local partners emphasized GIPA and investment in capacity building of individual PLWHA as part of the design and implementation of their programs.

GIPA In Action: The Example of Haiti

Located in Port-au-Prince, Haiti, the Foundation for Reproductive Health and Family Education (FOSREF) has been working throughout the island nation since 1998 to promote sexual and reproductive health services, family health education, and HIV prevention. With a national network of 29 health centers, the NGO provides outreach and health services to five target populations: women and men of reproductive age, sex workers and clients, youth aged 10 to 24, orphans and vulnerable children, and PLWHA. FOSREF maintains the philosophy that building the capacity of young people is a step toward developing and encouraging emerging leaders and an effective way to promote positive prevention. Though earlier efforts in Haiti had focused on prevention and the training of peer educators, counselors, and outreach workers, FOSREF specifically targeted the capacity of young people, especially those affected by and infected with HIV.

In 2003, USAID Community REACH provided a grant to FOSREF to build the leadership and communication capacity of young PLWHA in order to encourage their participation in all aspects of FOSREF’s work, including positive prevention efforts. Specifically, they were intending to:

• Build the capacity of young PLWHA as peer educators;
• Train young PLWHA in improved communication skills and increased knowledge of HIV prevention; and
• Integrate young PLWHA as key actors in all aspects of organizational management, ranging from proposal development to program implementation.

FOSREF’s youth volunteers were 10- to 24-years-old, organized into three age groups. With USAID funding, FOSREF-trained HIV-positive youth from each age group to serve as outreach workers, counselors, and peer educators. The youngest volunteers led community activities related to positive prevention. Their efforts resulted in the establishment of a community network that included family members as well as faith-based organizations. The community network offered support and encouragement to HIV-positive youth who disclosed their status.

Volunteers older than 15 years of age ran post-test clubs and were key actors in positive prevention and efforts to address stigma and discrimination. These young counselors and facilitators were trained to share their experiences, conduct training classes for peer educators, and manage the overall project. Trained youth counselors reached out to the broader population of young people and encouraged them to undergo counseling and testing. In talking about their experiences as people living with HIV, the volunteers had a powerful impact on community youth. FOSREF employed the oldest group of volunteers, many of whom attended university, as both key facilitators and HIV counseling and testing (HCT) advisors. The oldest group also managed the HCT program for youth. Until this work began, HIV counseling and testing in Haiti was extremely medicalized and was the exclusive responsibility of nurses or doctors; in addition, stigma was associated with the testing of young people. As a result of FOSREF’s efforts, the Ministry of Health revised its operational guidelines and de-medicalized counseling and testing so that physicians and nurses no longer had to run testing centers. Instead, the HCT effort focused on creating a youth-friendly environment, with peers conducting the counseling and testing sessions. This approach reduced the burden on formally trained health professionals by investing in youth and HIV-positive youth.

Why It Worked

FOSREF’s approach to working with HIV-positive youth was deemed so successful that other parts of Haiti have replicated it. FOSREF supported these efforts by providing technical assistance to other PLWHA associations and encouraging the integration of youth into all outreach activities. FOSREF attributed the success of its efforts to the full and active participation of PLWHA in all aspects of the project. It also recognized the importance of working closely with the community. Community engagement decreased the stigma and discrimination associated with disclosure of HIV status and helped foster an environment that encouraged counseling and testing. Nonetheless, working with Haiti’s communities posed challenges because of the nation’s abject poverty and poor education and low literacy levels. As a result, building the capacity of PLWHA required investment in skills training, such as basic literacy, communication, leadership, and advocacy.

Despite the challenges, FOSREF’s commitment to GIPA and investment in youth reinforced the understanding that PLWHA, and even young PLWHA within the community, can play a powerful role in response to HIV, producing a generation of emerging leaders capable of responding to Haiti’s HIV epidemic.

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