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Privacy and funding clash in the battle over HIV monitoring in the District.
It’s a somber crowd that assembles at Whitman-Walker Clinic every Tuesday and Thursday evening. The clients sit in chairs lined up along either wall, staring at their feet, or at a newspaper, or blankly forwardanyplace to avoid prolonged eye contact with the other participants in the ritual.
Some are here for the test, others for the results. But all of them will ponder an uneasy question sooner or later: Will the next caseworker who steps into this waiting room tell me I am HIV-positive?
Some 4,000 to 5,000 people are tested for HIV at Whitman-Walker’s STD clinic every year. Thousands more go to other HIV testing sites around the city. It’s a nerve-racking experience, but anxious clients have always taken comfort in the knowledge that their privacy is guaranteed. Under the current standards of reporting in the District, no one is notified when a patient tests positive for the virus that causes AIDS.
But by Jan. 1, 2002, according to the Department of Health (DOH), that is going to change.
At present, the District tracks only its diagnosed AIDS cases. But with new drugs delaying HIV’s progression into AIDS, and the epidemic’s epicenter shifting and spreading, health officials say they need to know more about where and how the virus itself is being transmitted.
“The only way that we can address this disease, any disease, is to know how it is taking hold in our community,” explains Senior Deputy Director for Health Promotion Ron Lewis, the city’s point person for HIV tracking. “The problem with monitoring AIDS is [that] it is a long-developing disease….To wait 10 years to see how the disease is taking hold in your community is very shortsighted.”
Under the new tracking system that the DOH is designing, each testing site will assign an alphanumeric code (known in HIV parlance as a “unique identifier”) to positive results. The code will contain a portion of the patient’s Social Security number (or, in cases where there is no Social Security number, a series of nines), and an accompanying report will provide information including race, gender, and mode of transmission. Epidemiologists will ask the testing sites to provide information about the person’s country of birth, as well.
The plan is a compromise to appease those who are uncomfortable with the government collecting personal information at HIV testing centers. In its current AIDS tracking system, the DOH records the actual names of those diagnosed with the condition. Lewiswho originally recommended the same system for HIV trackingstresses that the department has never suffered a breach of confidentiality with that log of names. With unique identifiers, he says, there should be no worries about potential privacy violations.
But some local civil-liberties watchdogs, particularly the influential Gay and Lesbian Activists Alliance (GLAA), still object to the changes. The GLAA charges that the system Lewis plans to use leaves patients vulnerable to privacy-rights violations and will deter people from getting tested.
“This is just one more way of scaring people out of going to the doctor,” says GLAA President Bob Summersgill.
The GLAA argues that the combination of birth country and Social Security number in the new tracking system will frighten undocumented immigrants away from testing. It has petitioned the D.C. Council to redesign the DOH’s plan in one of two ways: by removing the question about birth country from the follow-up survey or excising the Social Security number from the unique identifier.
Privacy concerns are not all that’s at stake in this clash. These changes were prompted by new Centers for Disease Control and Prevention (CDC) guidelines that require states to begin tracking HIV by the beginning of 2002. And federal funds for the District’s HIV/AIDS services could ultimately be contingent upon the CDC’s faith in the city’s HIV tracking system. Those dollars are currently doled out according to the number of AIDS cases in a certain area. Most observers believe that once a national HIV reporting system is in place, the feds will appropriate funds based on HIV infections. If D.C.’s system doesn’t pass CDC muster, the city will not be able to compete for that crucial funding.
The GLAA’s request to the D.C. Council is the latest salvo in a 20-year-long battle over HIV/AIDS reporting standardsboth here and across the nation. Proponents of stricter reporting argue that it is a vital public-health tool, taken for granted in the control of any other communicable disease. Opponents argue that privacy concerns of those affected by HIV/AIDS will be trampled by it.
HIV, of course, has never been just another communicable disease. From the first reports of its existence in 1981as a mysterious cancer that attacked gay men, even dubbed “Gay Related Immune Disorder”the disease has been at the front line of America’s culture wars. Public-health monitors originally told the nation that its primary vectors were groups already burdened with social stigmas: gays, intravenous drug users, and prostitutes. Soon, the opprobrium heaped upon these “risk groups” became inseparable from the disorder itself, and protecting the privacy of people living with HIV became a priority.
Prolonged scientific ignorance has further complicated matters. At the epidemic’s beginning, what was known about HIV/AIDS was that its patients shared the symptom of a dramatically weakened immune system and died soon after diagnosis. Scientists didn’t zero in on the virus at the root of the devastation until three years into the epidemic.
Public-health officials adapted to these circumstances, finding new ways to monitor the virus and control its proliferation. One of the uncomfortable compromises at that time was that the government would collect information on individuals who had developed AIDS rather than attempt to track the HIV virus.
That compromise held until late 1997, when federal officials first publicly mused about monitoring HIV infections. Groundbreaking drug regimens discovered in 1996 had appeared to delay the onset of AIDS indefinitely for many people, so tracking the epidemic from its endpoint was no longer viable.
Those comments sparked a bitter national debate. In the District, the battle commenced at an emotionally charged town-hall meeting convened by the health department and the CDC in April 1998. At the time, the CDC was barnstorming the country, advocating a system in which local health departments would record the names of those who tested positive, as they currently do with AIDS and countless diseases including tuberculosis.
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At that 1998 meeting, more than 100 representatives from D.C. community groups unanimously railed against that proposal and any form of HIV tracking in the city. One person after another told of being discriminated against after disclosing their HIV status. La Clinica del Pueblo, an Adams Morgan clinic that serves Latinos, released an informal study in which 85 percent of its clients said they would not have been tested if the city recorded names of those who tested positive.
Over the next three years, however, HIV tracking won staunch supporters within the health department and in the D.C. community. In large part, defectors were moved by the release of the new CDC guidelines mandating the creation of HIV tracking systems. The CDC will evaluate those systems and then approve only the tracking plans that meet its standards.
Critics of the unique-identifier systems, including the CDC, argue that they won’t meet acceptable standards of accuracy. By not recording names, say critics, these systems allow for errors such as counting a positive test more than once. (Unique-identifier proponents respond by noting that such systems have never enjoyed enough funding to get a fair tryout.)
In any event, the city has spent two years dithering over the issue. When the GLAA rallied the support of 11 of 13 councilmembers to oppose names reporting, Mayor Anthony A. Williams finally ordered the health department to come up with a unique-identifier system in August 1999. The decision put the city on a different track than most other jurisdictions. As of May 2001, according to the CDC, 35 states and territories, including Virginia, have created names-based systems. Only seven, including Maryland, have created unique-identifier systems.
As the debate in the District over HIV tracking has intensified, an odd divide has developed. Both sides now sell their positions as what’s best for black and Latino communities.
The fractures are complicated. Leaders of organizations targeting HIV/AIDS in black communities have split with the GLAA and strongly support names reporting and the DOH’s unique-identifier compromise.
Us Helping Us Executive Director Ron Simmonswhose group focuses its AIDS services and HIV testing on gay black maleshas been among the DOH’s vocal backers. “The people who were against names reporting are against surveillance in general, and therefore, whatever you come up with, they are not going to be happy,” he complains. “Like it or not, the system has to be one where you can go back and find information about the person.”
Simmons argues that the GLAA’s privacy concerns are irrelevant to the large numbers of low-income black people who are at risk for HIV in the District, particularly when African-Americans account for 74 percent of the city’s diagnosed AIDS cases.
“Odds are,” Simmons says, “if you are black or Latino or anything other than a middle-class white gay man, you’re going to have to come back into the system to get care.” Once linked to publicly financed care, patients surrender far more personal information than that required by a tracking system.
Whitman-Walker Executive Director Cornelius Baker agrees with Simmons’ assessment. “I do think that there is some racial divide in terms of the issue of privacy,” he observes. Baker notes that the health department has a good record on confidentiality and that treatment needs essentially render the discussion moot. “Most people who have HIV are already engaged in public systems,” Baker says.
Baker served on a 19-member community advisory board that drew up the proposed reporting system. He’s satisfied that it will offer both sufficient privacy protection and pass CDC muster.
GLAA President Summersgill served on the same board, and he remains unconvinced. Moreover, he’s upset that the department failed to include his objections in its official recommendation to the administration.
In Summersgill’s view, Simmons and Baker are missing the point. If the system deters people from getting tested, they’ll never receive proper care. “There are two questions that will have to be answered in order to be tested: your Social Security number and your country of origin,” Summersgill reiterates. “The net effect is they’re going to be scaring immigrant citizens and nondocumented citizens away from getting tested in the first place.”
Names-reporting opponents also point out that the District has to worry about more than the DOH’s record on privacy rights. The U.S. Congress can step in at any time and order reporting changes more sweeping even than names reporting. It could, for instance, mandate “partner notification” rules under which those who test positive are legally required to notify past sexual partners.
La Clinica’s HIV Programs Director Catalina Sol, who also served on the advisory board, agrees with the GLAA in principle, but she adds that the need for HIV tracking means “a lot of compromises.” She tentatively supports the system as designed and says she’s “not as alarmed about it as a deterrent to testing. I’m more alarmed about [the question,] ‘Is this really going to work for us?’”
One problem, Sol says, is that the metro area’s Latino population moves fluidly between the District, Maryland, and Virginiaall of which will use different methods for tracking HIV. Such variance, she observes, will make it difficult to get accurate data in all three jurisdictions.
In an August 15 letter, Summersgill asked At-Large Councilmember Phil Mendelson to introduce legislation mandating the changes in the HIV tracking system proposed by the GLAA. Mendelson and Ward 1 Councilmember Jim Graham wrote the health department in January to express their opposition to using Social Security numbers in the unique identifier. Staff for both members said their concerns about the planned system remain but declined to comment on what, if anything, they’ll do about it.
Few doubt the GLAA’s ability to effectively lobby the D.C. Council, and the group has proved time and again that it can reverse the city’s plans and policies. The GLAA is largely credited with defeating the original names-reporting plan.
Simmons is keenly aware of that fact and not a little annoyed by it. “Who has the political clout in this city,” he grouses, “poor black and brown folks or the GLAA?”
Simmons’ remark reveals a deeper issue lurking beneath this debate. Ethnic and racial minorities certainly participated in the early AIDS fight, but it was white gay activists who most effectively infiltrated the political arena and government institutions. Policy-makers came to accept their expertise. In recent years, as study after study has shown the virus’ impact on African-Americans and Latinos of all sexualities, leaders from those communities have gained policy-makers’ attention, as well.
Increasingly, the interests of the new guard collide with the sacred cows of the old. In this case, the gay community’s long-standing role as a defender of privacy rights now clashes with the need of cash-strapped black organizations to obtain data that will redirect federal funding priorities. Though the CDC believes that 54 percent of new HIV infections nationally occur among blacks (and 19 percent among Latinos), only $350 million of a federal AIDS budget that hovers around $5 billion is set aside explicitly to fund groups targeting those communities. More data may equal more money.
Whitman-Walker’s Baker argues that better statistics will speed the design of new intervention strategies. He points to a CDC study earlier this year that estimated that 30 percent of black gay men in their 20s are HIV-positive. Lewis has warned that signs suggest that black youth of all sexualities in the District are being infected in droves. Both men insist that these issues can’t be addressed without tracking HIV.
“They’re messing with the District’s ability to do epidemiological studies,” Lewis complains. He notes that the city still plans to keep an anonymous testing option but that its details have not been finalized. “I think people are really overreacting….#If GLAA fights us on the legislative side and ties our hands, I would hope that they don’t compromise our ability to meet the CDC’s guidelines.”
That’s exactly the rhetoric that the GLAA and several councilmembers rejected during the names-reporting tussle. For the GLAA, it’s Lewis and other opponents who are overreacting.
“I’m looking for a very small change here,” Summersgill sighs, “and they’ve been very resistant to that….#And if they don’t make these changes, they’re going to be discouraging people from getting tested.” CP