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Once at Front Line of AIDS War, District Is Now Fighting Blind

By Jose Antonio Vargas
Washington Post Staff Writer
Sunday, March 26, 2006; A01

This is what the AIDS epidemic looks like in the District of Columbia: a disease traveling generations.

Inside the Correctional Treatment Facility, right next to the D.C. jail, there's the 34-year-old who has full-blown AIDS. She was infected with HIV by the same man who infected her mother. A few miles away, on the second floor of an apartment building in Southeast Washington, there's the 29-year-old who was infected by a childhood friend. She's four months pregnant. He's dead. And in a Northwest Washington home, there's the entire family -- the mother, 36, the father, 34, their 1-year-old baby girl -- living with HIV.

Twenty years ago this month, the District was a pioneer, one of the first U.S. cities to appoint an AIDS director and create an AIDS office to monitor the epidemic and care for those afflicted. Yet, despite the city's decades-long fight against the disease -- and amid long-standing, well-known problems in the AIDS office -- the District's new top AIDS official says the work in tracking the epidemic's scope is "beginning all over again." She can tell you how many people in the District have AIDS -- nearly 10,000. She won't be able to tell you anytime soon how many have HIV, the virus that causes AIDS.

"It's pretty pathetic, and I mean, you know, I gotta tell you, I keep this little thing up," says Marsha A. Martin, pointing to a brochure on her desk called "HIV: Getting the Facts."

"It's symbolic, emblematic of 'Let's get the facts here, folks. Let's go to the facts. Let's do straight talk.' You can argue with estimates all over the place. We don't know here."

The city's efforts to meet the basic needs of AIDS education, condom distribution and tracking HIV rates have lagged years behind the spread of the disease, an independent study has noted. By the early 1990s, the disease that had ravaged gay men began a silent march through the city's poor, predominantly black neighborhoods. The epidemic broadened its course. The city, for the most part, did not. It spent money. Nearly half a billion dollars in federal and local funds in the past eight years, city records show, were distributed to the dozens of community groups charged with prevention, housing and health care. But without a map of new HIV infections, the city was unable to recognize where AIDS was heading.

"We captured the early epidemic," says Martin, a former head of the national advocacy group AIDS Action, who took over the Administration for HIV Policy and Programs (AHPP) in September. "We are not capturing today's epidemic."

AHPP reports that nearly 1 out of 50 District residents is living with AIDS. The nation's capital has the highest rate of new AIDS cases in the country -- 179.2 per 100,000 in 2004 -- according to the Centers for Disease Control and Prevention, which ranks the District alongside the 50 states. AHPP has yet to report the city's rate of HIV infection, although it has been collecting those data since December 2001 through a "code-based" system that shields a person's identity, an alternative to a "name-based" system. "We have some data," Martin says. "We're not sure what it means."

"There is no one in D.C. who believes our HIV data is reliable," Martin continues, adding that the District is behind all major cities in monitoring the epidemic. Baltimore also collects HIV data through a "code-based" system but issues detailed quarterly reports of its new HIV numbers. "We can't tell you how accurate our HIV data is."

HIV can incubate for years. To understand what was happening with the epidemic a decade ago, experts say, look at current AIDS data. To understand what is happening right now and what will happen in the future, look at the HIV data.

A report card issued Thursday as a six-month update to the independent study by the D.C. Appleseed Center earned AHPP a rare round of applause from local AIDS advocates: a B-minus for making AIDS a top priority in the District, a B for providing rapid HIV testing at city-run facilities. But the situation was so bad before the center issued its report, say AIDS workers, that the only place to go was up.

Most telling about the report card was the grade it assigned for reporting and collecting HIV data: "Incomplete."

* * *

Three or four times a week, Patricia, who lives off Alabama Avenue in Southeast Washington, makes her way to the Women's Collective near 14th and U streets NW.

She's 56, a mother of five, HIV positive for 20 years.

There's a lot of shame and for a few years a whole lot of denial, says Patricia, who spoke on the condition that her full name not be used. Only a handful of friends know her secret. So for conversation and health care, she takes a long, meandering bus ride from Southeast to Northwest: about 25 minutes on the 82 line, all the way down near the Anacostia Metro line, then about 45 minutes -- past Capitol Hill, past the D.C. Farmer's Market, past Howard University -- on the 90 line, all the way up Florida Avenue. Sometimes, on the weekends, the trip can last way more than an hour.

She doesn't have her little sister Phyllis anymore. They used to shoot up together in their bedroom, their bathroom, behind the apartment building. Now Phyllis is dead, at 50, gone a few weeks ago from AIDS complications. She had lived long enough to watch her baby, Dyshon, the youngest of nine, die at 6 from the disease. Now Patricia worries about her youngest daughter, who has just taken up with a man she calls a "street hustler."

"He's one of those types. He thinks he's so fine. He thinks he can get anybody," Patricia says. Get tested, she begs her daughter, get tested.

"I'm afraid she's gonna wind up just like her aunt and me," Patricia says of her daughter, who is 20 and has two babies.

Today in the District, AIDS workers say, by the time many of the city's poor residents seek testing or treatment, they already have full-blown AIDS. That's what Patricia Nalls, who founded the Women's Collective, is seeing. Across the Anacostia River in Southeast Washington, Flora Terrell Hamilton, who runs Family & Medical Counseling Service Inc., is witnessing the same thing. Of the more than 1,200 clients getting treatment for HIV/AIDS each year, some are in their twenties, and a few of them already have full-blown AIDS, Hamilton says.

"We need to reinforce our early prevention efforts," she says.

Adds Nalls: "We're not reaching people early enough."

There is no citywide HIV prevention campaign in place targeting District teenagers.

Hamilton says that her group recently went to a high school in Southeast Washington -- she won't name the school -- and gave an HIV test to 100 teenagers. Two came back positive.

Adam Tenner, who heads Metro TeenAIDS, says his group also tested 100 teenagers at a go-go event in Northeast Washington last summer. One test came back positive.

Only recently did AHPP begin rapid HIV testing on inmates inside the D.C. jail, which revealed an infection rate there of between 5 and 7 percent.

* * *

In March 1986, the District became one of the first cities to put an individual in charge of monitoring AIDS. The year before, 110 AIDS cases had been diagnosed. The following year, 222 cases. The year after that, 333. "It was something that had to be done," says Jean C. Tapscott, the city's first AIDS coordinator, who attended so many funerals in her first months on the job that she became known as the "funeral lady."

That early aggressive action gradually deteriorated in the face of leadership turnover, bureaucratic malaise and political battles.

"This didn't happen overnight," says Cornelius Baker, who has headed both the National Association of People With AIDS and the Whitman-Walker Clinic, the largest provider of HIV/AIDS services in the District. "You have to understand that all these community-based organizations are busy serving their clients. And it's not like people didn't complain. People did complain. Very often.

"But there's never really been a shakeup, an overhaul. No one has really looked at the system from top to bottom and said, 'Okay, this is not working.' "

Of all the agencies in the Department of Health, the AIDS office has the highest turnover in the top job. Martin is the 11th director in 20 years. One director after another has either thrown up his or her hands in frustration and resigned or been forced out in the heat of controversy -- over funding issues, over racially tinged battles, over questions of competence.

"How can an office possibly have any kind of stability when it goes through so many directors in that period of time?" asks Hamilton, who's worked with all 11 AIDS directors in her 25 years running the Family & Medical Counseling Service. "It cannot. It's been a quick fix after a quick fix without solid planning."

During the late 1980s and early 1990s, the AIDS epidemic made its dramatic demographic shift, expanding among two populations -- gay men having unprotected sex and intravenous drug users sharing needles. This period also corresponded with a time of bureaucratic tumult in the capital. The city went bankrupt, and Congress took over. Most agencies struggled, but the persistent stigma of the disease made running an efficient AIDS office even more complicated. In 1984, the city recorded 103 deaths from AIDS complications. By 1994, it recorded 660.

Meanwhile, more than 30 community-based organizations, clinics and service providers across the city have vied for local and federal funds over the years. Divvying up those resources was a major challenge for the department, past directors say. Without precise data, armed often with no more than anecdotal evidence, they struggled to fund the right programs, cut checks in a timely fashion and then ensure compliance.

Since the first AIDS director was hired in 1986, the city has spent hundreds of millions of dollars in public funds combating HIV/AIDS. Exactly how much is unclear. The District's Office of the Chief Financial Officer could track down the annual budgets beginning only in Fiscal 1999. A review of those records indicates that spending from Fiscal 1999 through Fiscal 2006 will reach more than $500 million -- with most of that money going to community-based organizations that provide primary medical care, HIV testing and counseling, HIV prevention services and housing, among others, and to the city's AIDS Drug Assistance Program that helps residents with HIV and AIDS pay for medicine.

Before 1999, "spending was spread around various agencies," said financial spokeswoman Maryann Young, and the figures are "less reliable." Looking for figures prior to 1999, she added, had become "a research project."

Understaffing has always been an issue, especially in the office's surveillance division, which is responsible for collecting HIV and AIDS data. Caitlin Ryan, who was director in the early 1990s, counted the number of steps it took to hire someone: 16. "When the paperwork left my office, it fell off a cliff," says Ryan, "and I spent a lot of time chasing after it." Today, the vacancies in the surveillance division make up 11 of the 25 vacancies in Martin's office, which has 114 full-time employees.

Guy Weston, who was hired as director of the data and research division at the agency in 2001, says: "People were so used to seeing D- and F-quality work that they get excited over a C-plus when in fact the standard should be an A." Weston, who was the state AIDS director for Vermont, left in 2003.

* * *

In the past few months, AHPP's Martin, once a special assistant on HIV/AIDS policy in the Clinton administration, has been touring various community-based organizations. Mayor Anthony A. Williams (D) is scheduled to announce the members of the first HIV/AIDS task force, which he plans to chair. AHPP has finalized its partnership with the School of Public Health and Health Services at George Washington University, which will help staff the surveillance division. Council member David A. Catania (I-At Large), who as chairman of the council's Committee on Health has been one of the office's harshest critics, now sounds positively buoyant. "Where we are this year versus where we were last year is night and day," he says.

"You can definitely feel that the tide turning," says Paola Barahona, head of PreventionWorks!, a nonprofit group that distributes clean needles. For the first time, her organization might get a grant for testing and counseling.

"There's a lot to clean up, a whole lot to clean up, and it's going to take time," Hamilton says.

"But we all have to understand that with a disease like AIDS, time is very, very, very precious."

In an hour-long visit a few weeks ago to the cramped offices of the Women's Collective near 14th and U, Martin promised to help the center, whose two case managers serve 117 women with HIV and AIDS, find a bigger home.

Sitting in the back room, fidgeting with a crumpled, stained napkin, living with HIV for 20 years, Patricia was there, her black purse on her lap. Inside of it was a photo of her five children and the program for the memorial of her younger sister, who died from AIDS complications Feb. 12.

Even as she grieves for her sister, she fears for her daughter, too. Whenever the girl goes out, leaving the babies with her, Patricia worries, "What if she gets it, too?" The disease of generations, traveling on.

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