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When It Comes to AIDS, a Tale of Two Washingtons

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There's plenty of blame to go around. AIDS organizations serving various communities -- Us Helping Us, which caters to black men; the Women's Collective, a haven for African American women; the Whitman-Walker Clinic, a sanctuary for many white gay men, to name just three -- have historically operated in their own silos, as though they worked in different cities. Racism, homophobia and sexism have all played a role.

For nearly a decade, congressional opponents of needle-exchange programs have prevented the city from spending its own tax money on funding one, even though a third of all new AIDS cases can be traced to a reused needle. About 210 such programs are in place in 36 cities nationwide. The new Democratic leaders on Capitol Hill says the District's ban could be lifted by next fall -- almost a year away.

But arguably the most responsible of all is the city's AIDS office, which for too long has been slowed by unstable leadership, bureaucratic malaise and staff vacancies, unable to collect reliable epidemiological data, to cut checks on time for AIDS groups and to distribute condoms.

And meanwhile, people get sick and die.

In the year that I reported on AIDS, I was fixated on finding the face of the disease in the city. I was born in 1981, the year the Centers for Disease Control and Prevention first reported that "five young men, all active homosexuals," had shown up in Los Angeles hospitals with a rare infection. I haven't known a world without AIDS. To explore the scope of the epidemic in the District is to talk about race, class, drugs, sex -- about things that we don't feel too comfortable discussing. This is, after all, a preventable disease. If you're going to have sex, use a condom, period. If you're going to shoot up, don't share a needle. That's how the thinking goes. Still, for more than a decade, the Centers for Disease Control and Prevention reported that the rate of new HIV infections in the country was staying constant -- at least 40,000 a year. They now believe that rate may be 50 percent higher.

"We were all hoping that number would go down at some point," Anthony Fauci, the longtime director of the National Institutes of Health's program on infectious diseases, told me. "It hasn't."

The quilt, as my editor and I envisioned it, was to be a living testament to the epidemic's diversity in the District. It hits gay men, straight men, transgendered people, women. It's black, white, Latin, South Asian. It's upper-middle class, middle class, poor -- some so poor they can't make the $10 co-payment for their government-subsidized HIV medications. It's young, old. It's everyone -- although blacks are disproportionately affected.

For one story, I attended gatherings of the D.C. Young Poz Socials, an HIV support group for gay men in their 20s and 30s, its members mostly white middle-class professionals who've struggled not just with coming out to their friends and families but now with being HIV-positive. "Telling someone you have HIV is like coming out all over again," said Shawn Henderson, who heads the group.

For a story about HIV-positive ex-convicts, I sat in a support group meeting almost every Wednesday for six months. Everyone was African American and male, most were unemployed, some lived in shelters, a few had just recently gotten out of the D.C. jail. Behind bars and on the streets, they told me, HIV wasn't called HIV. It was "the sauce," "the alphabets." "A lot of black people don't want to talk about this HIV thing," Kevin Robinson, one of the men at nearly every meeting, told me.

This kind of denial is part of the problem surrounding AIDS in the city. And it's fueled by the continued stigma attached to HIV/AIDS, now in its 26th year.

"The stigma is as bad as the disease itself." That's what Patricia Nalls, the founder of the Women's Collective, told me over Dunkin' Donuts and coffee one spring morning last year. Now 50, Nalls learned that she was HIV-positive in 1986, after her husband and 3-month-old daughter died within six months of each other. With recent advances in drug treatment, lives have been saved and prolonged. AIDS isn't about dying anymore, it's about living. And it's about living with the stigma, which is different for different people.

I met Wanda at the Women's Collective. She'd tested positive in early February 2006, a few weeks after her 40th birthday. She was still trying to figure out how to tell her kids. "I have not gotten the courage," she said. "I'm telling my girls to be careful -- and here I am." I remember the expression on her face, guilt topped with frustration. It wasn't really her own identity that she wanted to protect, she told me. It was that of her daughters. "You must have done something wrong to get this virus," she said. "That's what people think." She slept with "the wrong man." He didn't tell her he was positive. She wanted to use a condom. He didn't.

"What was I going to do?" she asked me. Wanda declined to be a part of the quilt. She lamented being another statistic -- a black woman with HIV.

But the statistics coming from the District's AIDS office hide more than they reveal.

That's because for years, with each new AIDS director, continuous infighting among local groups for funding, and after millions in local and federal spending, the city's AIDS office has done a poor job of performing one of its most basic functions: collecting HIV and AIDS data. And, more to the point, dependable and current data.

The new report, for example, includes the first AIDS update since 2000. HIV can incubate for years. Not knowing the most recent number of AIDS cases in the city prevents local AIDS agencies serving various communities from figuring out where the neediest, sickest residents are. The most striking detail in the report was the number of pediatric cases -- mothers passing HIV to their babies at birth. This is not something you see often in other U.S. cities. Pediatric cases are easily avoided, if women know that they're HIV-positive.

About this time last year, Marsha A. Martin, then the city's AIDS director, and Marie Sansone, then the AIDS administration's surveillance chief, invited me to their offices in Northeast Washington. They shared some shattering news.

In June 2005, the office had been evacuated because of contamination in the ceiling, they told me. Boxes had been misplaced. And in those boxes were HIV and AIDS cases, 2,000 to 3,000 of them, that had yet to be entered into the city's database.

"We were flabbergasted, just flabbergasted," Martin said.

I was just as flabbergasted listening to them, thinking of all the people in those boxes. Flabbergasted was the word that flashed through my mind as the AIDS office released its study last week. Again, the city finds itself at a crossroads facing its "modern epidemic." But this epidemic isn't so modern. It's longstanding, it's spreading and there's no more time to waste.

Sitting in the pew at Greater Mount Calvary Holy Church at Josh's memorial service on Nov. 1, with Josh's big, wide, inviting smile projected on a screen near the altar, I couldn't stop thinking about all the faces, the names, the numbers.

So many lives already lost.

vargasj@washpost.com

Jose Antonio Vargas is a Washington Post political reporter.


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