Positive Voices: Living With HIV

People living with HIV/AIDS have fought for many things throughout the history of the epidemic. Most intimately, they have fought for their health—day by day, often hour by hour­—with unfailing courage and resilience. Most publicly, people living with HIV/AIDS have fought for an end to stigma and discrimination and the right to access high-quality health care. They have also fought for a greater voice in their own care.

The Ryan White HIV/AIDS Program not only has heard these voices but has encouraged them. The human orientation is evident in the name of the program, which serves as a testament to one consumer, Ryan White. His voice rose above the stigma and fear of the early epidemic to bring much-needed attention to improving access to quality health care and social justice for people living with HIV/AIDS.

Consumers like Ryan White were instrumental in laying the foundation of the Ryan White HIV/AIDS Program. With the 1983 drafting of the Denver Principles (PDF – 19.1 KB), people living with HIV/AIDS affirmed their right to participate in decision making about their own health care; they have continued to play a vital role in charting the course of the Ryan White HIV/AIDS Program to this day.

The adaptability of the Ryan White HIV/AIDS Program over nearly 20 years is tied to its ability to be responsive to emerging trends in the epidemic. This responsiveness would never have been possible without consumer involvement at nearly every level of program administration—something so vital that it is now mandated by law.

From participation on Planning Councils, consortia, and consumer advisory boards to consumer-led advocacy and the direct provision of services to HIV-positive peers, consumers have made their voices heard. Consumers have also been vital to evaluating the effectiveness of Ryan White programs and services, ensuring that they are best structured to serve the needs of people living with HIV/AIDS. The history of this program—and its future—would ring hollow without them.

Consumers aren’t involved at just the program level, however. They are truly instrumental in bringing Ryan White knowledge back to their communities, too. By being involved in their own care, consumers are constantly encouraging improvements in health behaviors for people living with HIV/AIDS and their partners as well as greater utilization of key services and resources for HIV care and prevention in the community.

The “positive voices” featured on this Web site represent just a fraction of the vast chorus of Ryan White consumers—who come from every culture, every region of the country, every walk of life. These stories deepen our understanding of important refrains in the history of the epidemic. More often than not, they also point the way to the future. And the more we listen, the more we learn about how that future needs to look.