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Op-ed: Congress, Don't Let Down Ryan White

Op-ed: Congress, Don't Let Down Ryan White


The lifesaving Ryan White CARE Act, which passed a quarter-century ago, needs to be reauthorized without delay.

By 1989, AIDS had killed nearly 90,000 people in the United States -- most of them gay men. "AIDS hysteria" had gripped the nation for much of the decade. Elected officials called AIDS just punishment for gay men; religious leaders called it God's retribution. And they were not alone -- according to a 1985 Los Angeles Times poll, 50 percent of the adults surveyed supported a quarantine of AIDS patients and 15 percent favored tattooing people with AIDS. The fear of AIDS was a fear of gay men, fueled by ignorance and homophobia.

AIDS activists had fought for years to bring about government funding to end the disease and provide health care to those affected by it. They marched in the streets, worked the halls of Congress, told stories of horrible discrimination and humiliation. Ryan White, an Indiana schoolboy, knew what that felt like. Ryan contracted HIV from a blood transfusion, but he suffered from the same stigma and degradation that gay men had experienced, in his own hometown, at his own school -- which had banned him from attendance. Ryan's fight to attend school, beginning in 1985, when he was 14, became a spark that ignited the tinder created by years of AIDS activism in cities like New York, San Francisco, and Los Angeles.

Americans might have seen Ryan White as an "innocent victim," but he was no victim. He was an activist, and he and his parents fought the bigotry and hysteria at no small cost to their personal lives. His courage gave many people -- who up to that point were apathetic (or far worse) -- an avenue into seeing AIDS for what it was: an epidemic that demanded a coordinated national response based on an informed public health policy and compassionate human values. And it was his example and in his name that Congress could find enough bipartisan agreement to pass legislation that began responding to the country's most serious public health challenge and finally provide life-saving care to people many would have preferred remain invisible.

Twenty-five years ago this month -- nearly 10 years after the first reported cases of AIDS -- Congress passed that historic legislation. The Ryan White CARE Act funded health care and services for people living with HIV who had no other alternative. It helped create a system that has saved the lives of those who are both most marginalized in our society and who make up the majority of those living with HIV or AIDS.

Ryan_whitex400Congress will soon need to update and reauthorize the Ryan White CARE Act. It is critical that we acknowledge at this point in time that the AIDS epidemic, yesterday and today, has always been the story of bigotry and discrimination. Those most at risk for HIV are those who already suffer at the hands of society: gay and bisexual men (especially gay men of color), transgender people, injection-drug users, the undocumented, the homeless, women of color, and those living in poverty -- and often, individuals who fit into several of those categories at once. It is those who have faced historical and institutional oppression who make up the majority of those living with HIV and those most at risk for infection. If, for no other reason, this is why the Ryan White CARE Act needs to be reauthorized and properly funded.

Reauthorization would honor those early activists who watched their friends and family die from a mysterious disease at the same time many of them were ostracized and degraded by a fearful public. It would honor the memory of that Indiana schoolboy whose journey into activism was thrust upon him in the most public and difficult of ways. The history of fighting this disease has always been one of activism in the face of fear, ignorance, and apathy. This is the legacy Ryan White and those early activists have willed to us. It is our responsibility now to take up that call and fight for reauthorization of this legislation.


DARREL CUMMINGS is the chief of staff of the Los Angeles LGBT Center.

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