Ryan White

by: Dean Barker

Tue Dec 01, 2009 at 05:47:09 AM EST

Turns out I'm almost the same age as Ryan White.  Remember him?

In the early 1980s, AIDS was known as gay-related immune deficiency, because the disease had first been identified among primarily homosexual communities in New York City and San Francisco. At the start of the HIV/AIDS epidemic in the United States, the disease was thought to be a "homosexual problem" and was largely ignored by policy makers.[20] White's diagnosis demonstrated to many that AIDS was not exclusive to homosexuals. In his advocacy for AIDS research, White himself always rejected any criticism of homosexuality.[37]

White was seen by some as an "innocent victim" of the AIDS epidemic. White and his family strongly rejected the language of "innocent victim" because the phrase was often used to imply that homosexuals with AIDS were "guilty". White's mother told The New York Times, "Ryan always said, 'I'm just like everyone else with AIDS, no matter how I got it.' And he would never have lived as long as he did without the gay community. The people we knew in New York made sure we knew about the latest treatments way before we would have known in Indiana. I hear mothers today say they're not gonna work with no gay community on anything. Well, if it comes to your son's life, you better start changing your heart and your attitude around."

Set to expire during the Bush years, Congress couldn't agree on changes to access so it was extended under its original provisions until Barack Obama signed an expanded version into law last month. (Notable among the nine nay votes in the House - all Republican - were Ron Paul and Virginia Foxx):

Thank you, Mr. President.  

A number of events and advances over the years have broadened our understanding of this cruel illness.  One of them came in 1984, when a 13-year-old boy from central Indiana contracted HIV/AIDS from a transfusion.  Doctors assured people that Ryan White posed no risk to his classmates or his community.  But ignorance was still widespread.  People didn't yet understand or believe that the virus couldn't be spread by casual contact.  Parents protested Ryan's attendance in class.  Some even pulled their kids out of school.  Things got so bad that the White family had to ultimately move to another town.

    It would have been easy for Ryan and his family to stay quiet and to fight the illness in private.  But what Ryan showed was the same courage and strength that so many HIV-positive activists have shown over the years and shown around -- show around the world today.  And because he did, we didn't just become more informed about HIV/AIDS, we began to take action to fight it.

In 1990, the year Ryan passed away, two great friends and unlikely political allies, Ted Kennedy and Orrin Hatch, came together and introduced the Comprehensive AIDS Resources Emergency Act -- the CARE Act -- which was later named after Ryan.

    In a few minutes, I'm going to sign the fourth reauthorization of the Ryan White CARE Act.  Now, in the past, policy differences have made reauthorizations of this program divisive and controversial.  But that didn't happen this year.  And for that, the members of Congress that are here today deserve extraordinary credit for passing this bill in the bipartisan manner that it deserves:  Tom Harkin and Mike Enzi in the Senate, we are grateful to you for your extraordinary work; Speaker Pelosi, who's always leading the charge on so many issues; Frank Pallone, Jr., Joe Barton, Barbara Lee and Donna Christensen in the House, thank you for your extraordinary work -- oh don't worry, I'm getting to Henry.  (Laughter.)  Nancy is always looking out for members, but we've got a special section for Henry.

And Chairman Henry Waxman, who began holding hearings on AIDS in 1982, before there was even a name for AIDS, was leading here in Washington to make sure that this got the informed attention that it deserved and who led the House in passing the original Ryan White legislation in 1990.