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is the Ryan White CARE Act? The legislation must be reauthorized every five years, and its next reauthorization is set for September 2005. Who
was Ryan White? It’s easy to forget that Ryan White was a real person, a boy who was diagnosed with AIDS in 1984 just days after his 13th birthday. He became HIV positive as a result of a blood transfusion required for his hemophilia. After his diagnosis became public, he was not allowed to return to his school. Despite harassment from other kids and opposition from parents and school officials, Ryan and his mom Jeanne fought back by filing suit. And they won. In the process, he became a national celebrity. What
is Ryan White’s Legacy? Despite his fame, Ryan White had difficulty getting adequate care. Today, gaining access to care and services continues to be a major issue. At a meeting of the President’s Advisory Council on HIV/AIDS (PACHA) in April 2004, a group of young, African American, HIV positive peer educators from the Baltimore Pediatric HIV program spoke about their struggles with HIV and the value of peer to peer education. Though these young men and women are not national celebrities like Ryan White, their level of grace, poise, and conviction in delivering testimony was reminiscent of Ryan’s. Perhaps the most important thing about Ryan White is that he regarded going to school as his right and he fought to keep it, even in the face of extraordinary hostility. He stood up not only for himself, but for others. As an advocate, he became a part of the movement for legal, social, and economic equality under the law. Women, African Americans, Latinos and other minority populations, the disability community, and the gay, lesbian, bisexual and transgender communities have all struggled to achieve equality. HIV positive people now are a part of that tradition. By coming to the PACHA meeting, the Baltimore peer educators recognized that they have a right to receive treatment equal to that of any other patient, despite poverty and despite America’s neglect of minority communities. Many of the peer-to-peer programs for which they advocate are funded through the Ryan White CARE Act. Like Ryan White, the peer educators are continuing in the tradition of the civil rights movement. HIV has been with us now for more than the 20 years. Our understanding and even our representation of the disease has changed since Ryan White was first diagnosed. The epidemic has raged through African American and Latino neighborhoods nearly undocumented by the national media. HIV disproportionately strikes those who are in poverty and lacking services and places huge financial demands on people who are trying to maintain their health. In speaking out, the young peer educators drew attention to their struggles within an under-funded health system that does not guarantee them access to care. Ryan
White died in April, 1990 at the age of 19. His passing inspired
lawmakers to name the Comprehensive AIDS Resources Emergency Act
after him, and it became law later that year. He surely would
have been proud that the law bearing his name reaches so many
people. But he would also have urged us to do more. It’s for this
determination that we remember him still. |