An Overwhelmed D.C. Agency Loses Count of AIDS Cases
By Jose Antonio Vargas
Washington Post
December 30, 2006
In late August, barely a month into her new job, Marie Sansone of the District's AIDS agency was astounded by what she discovered: five boxes of unexamined HIV and AIDS cases that had not been touched in more than a year.
In the boxes were records of 2,000 to 3,000 cases that had yet to be entered in the city's database. The records are mostly from 2004 and 2005, some from 2003. Who's getting sicker, who needs treatment, who died. All boxed up.
"Oh, my goodness," Sansone, surveillance chief for the city's Administration for HIV Policy and Programs (AHPP), remembers saying.
"We were flabbergasted, just flabbergasted," adds Sansone's boss, AHPP Director Marsha Martin.
That information is critical to managing a spreading epidemic, now in its 25th year. Under guidelines from the federal Centers for Disease Control and Prevention, AHPP is required to collect, maintain and distribute statistics on the disease, which dozens of community-based organizations depend on for their prevention and treatment programs.
City officials acknowledge that the District is behind in tracking new cases of HIV, as well as in reporting the number of deaths from AIDS complications.
AHPP reports that about 10,000 District residents -- nearly 1 in 50 -- have AIDS. It estimates that between 17,000 and 25,000 have HIV, the virus that causes AIDS. Though AHPP started collecting HIV data in 2001, it has yet to release the statistics, and it hasn't released data on AIDS-related deaths since 2002. In contrast, Baltimore issues yearly and quarterly updates of HIV cases and AIDS-related deaths.
With the additional five boxes, the District's big problem just got bigger.
"This is very, very, very serious," Sansone says. "Getting through these boxes is of the highest priority."
And Sansone's historically disorganized, chronically understaffed surveillance department shoulders the weight of correcting the public record. Since early September, Sansone and her staff have been going through the five boxes, looking at each case, going back to local health care providers to complete reports, making sure that an HIV case is not counted as an AIDS case and vice versa. She's kept a weekly tally.
By the end of September, they'd added 15 AIDS cases and 236 HIV cases.
By the end of October, they'd added another 126 AIDS cases and 636 HIV cases.
By November, 59 more AIDS cases and 344 new HIV cases.
By Dec. 18, 110 AIDS and 107 HIV.
"We're surrounded by all these documents, all these cases," Sansone says, "and they're really all people."
* * *
Where did the boxes come from?
In June 2005, AHPP's offices in the Peoples Building in Northeast Washington were evacuated due to contamination in the ceiling. At one point, the staff was scattered to four locations. For more than a year, the room that stored boxes of lab reports, HIV and AIDS cases and death records was off-limits, with plastic sheeting over it. Plus, there was turmoil at AHPP. Lydia Watts, the 10th AIDS director of the 20-year-old agency, was fired after 11 months on the job.
Martin, who took over AHPP in September 2005, makes no excuses for the lack of attention to the surveillance department. "The only word I can use is neglect. There's been neglect to this part of the system for unfortunately more years than we know," she says.
Martin hired Sansone, whose senior management position at the city's Environmental Health Administration was being eliminated. Sansone needed a job. Martin needed a manager.
"Walking into it, you know it's going to be a mess," says Sansone, 50, who speaks in a soft monotone.
AHPP's surveillance department, she says, is like "a beat-up, very old Buick that hasn't had a major tuneup."
And the Buick is missing parts. She has a staff of 16, two of whom are consultants, and four of those positions are vacant. "Ours is really a bare-bones operation," she says.
Finding qualified staffers has always been a challenge, according to past AIDS directors. Money was a factor for years; compared with other cities, the District didn't pay much. The agency's reputation was another impediment. Joan Wright-Andoh, the surveillance chief from 1998 to 2004, says that for three years she couldn't hire a trained epidemiologist to analyze the data her office was getting.
Still, AHPP managed to release a few reports, such as one in 2003 based on 2001 data that found the District's AIDS rate the highest among large U.S. cities and that half of the new AIDS cases in Wards 7 and 8 were among women. But AIDS cases are indicative of where the epidemic was, health workers say. HIV cases, they say, serve as the barometer of where the epidemic is now.
Little has come out of AHPP since.
All the while, dozens of organizations serving various populations across the city depend on the department's surveillance data to plan and manage their programs. Two federally mandated bodies -- the HIV Prevention Community Planning Group and the Ryan White Planning Council -- charged with prioritizing and allocating more than $60 million in federal funds, are given drafts and estimates rather than actual figures.
And without reliable data, questions arise. How high are HIV rates for Latino immigrants who flock to La Clínica del Pueblo in Columbia Heights? How much money should go to the Women's Collective? Should more funds go to PreventionWorks!, which distributes clean syringes to drug users?
"The fact is, we don't have a data-driven process and we can't really say that the funding is following the epidemic," says Catalina Sol, HIV/AIDS director at La Clínica and a member of both of the HIV Prevention and Ryan White groups. "When you don't have data that people can trust, when you don't have data that is accurate, you're making people invisible."
Sansone agrees.
"Our department's mission statement reads, 'to provide a comprehensive picture of the HIV/AIDS epidemic,' " she says. "We're not doing that. Not yet."
* * *
When a D.C. resident tests positive for HIV or AIDS, a lab report goes to Sansone's office, to be followed by a city-mandated confidential case report written by a private physician, health care provider or local clinic. It's an extensive report, asking for the resident's demographic information, medical history and treatment options -- Medicaid, HMO or private insurance.
But that doesn't mean all the cases get to AHPP.
There's passive reporting and active reporting. The former means that health providers such as the Whitman-Walker Clinic report their cases to AHPP; the latter means that AHPP's field investigators must go out to the community to get the case reports. Like Baltimore, whose epidemic mirrors the District's, the city relies heavily on active reporting. But unlike Baltimore's office, which has a team of six field investigators and a field supervisor, Washington's has three field investigators and no field supervisor.
There have been problems with both methods. Some cite miscommunication. Whitman-Walker, the largest provider of HIV/AIDS services in the city, didn't report its cases for almost two years. "The city stopped sending [field] investigators two years ago. At that point we didn't know what was expected of us," says Kim Mills, a Whitman-Walker spokeswoman. The clinic resumed its reporting last August.
Others cite lack of trust to explain their inconsistency in reporting. "If I'm a clinic, I'd think, 'Any data I get from AHPP is hard for me to believe. I don't know how they got the numbers, I don't know if the numbers are accurate,' " says A. Toni Young, co-chair of the HIV Prevention Community Planning Group.
Because Sansone's department is short-staffed, everyone's pitching in, performing multiple functions.
Volta Asbury, 51, is the office assistant. She enters death records into the database. She also does some field investigation at Washington Hospital Center. She has an uncle with AIDS.
"The thing about AIDS is, a lot of people think it doesn't affect them -- until somebody's infected in their family," Asbury says.
Tiffany West-Ojo, the 28-year-old surveillance coordinator, doesn't have a relative with HIV or AIDS. But at Tulane University, where she earned a master's in public health, she was known as the "condom lady." She was working for the CDC in Atlanta when AHPP offered her a job.
"I knew what I was getting myself into," says West-Ojo, who joined AHPP in June. "But if you're an epidemiologist who's serious about your work, if you're an epidemiologist who really wants to get out in the community, this is a place to be."
* * *
The backlog from 2003 to 2005 has consumed most of the department's time, but the problem of tracking the epidemic didn't start and doesn't end with the boxes.
The city's latest epidemiologic profile, available on AHPP's Web site, goes up to 2002. It reports that 41 residents died that year. Asked to confirm that figure, AHPP e-mailed The Washington Post an updated report listing 162 deaths in 2002.
Sansone says the discrepancy is due to "cleaning up the database."
"We can't release any reports -- of HIV cases, AIDS cases or AIDS deaths -- until we get through these backlog cases," says Sansone.
So far, Sansone and her staff have entered a total of 310 AIDS cases and 1,323 HIV cases from the boxes into the city's database.
