This month, the Pennsylvania Legislature began work on a health regulation called "names reporting." A plan to collect the names, addresses and Social Security numbers of every Pennsylvanian who has HIV for the Centers for Disease Control (CDC), names reporting--which has been enacted in other states--has piqued the fears of HIV-positive Pennsylvanians. It has also become the subject of much debate and controversy throughout the state.
The theory behind names reporting comes from epidemiologists who have determined that tracking the way HIV is spread is key to defeating the disease. That's why the CDC is pressuring states to collect the names and personal information of everyone who tests positive for HIV.
Not surprisingly, the prospect of the government maintaining lists of such information has provoked many with HIV to resist this regulation. Instead, they are petitioning a slightly more expensive data system called "unique identifiers," which would gather HIV information without collecting individuals' names. But such requests have fallen on deaf ears in the state Legislature, which is proceeding with a proposal to enact names reporting. They promise the list of names will remain confidential.
But how can they be sure?
After Florida enacted names reporting, a list of one community's HIV-positive people wound up in the wrong hands. Similar stories abound, with accidental or not-so-accidental disclosures of people's confidential information occurring everywhere from New Jersey to Alabama.
These potential breaches of confidentiality and safety have those in the HIV/AIDS community up in arms. In Pennsylvania, AIDS activists have started gearing up for a full-scale fight to keep the state from enacting names reporting.
"As an HIV-positive person myself, I plainly do not trust the state government to compile a list of all of our names and addresses and keep it confidential. I mean, give me a break," says HIV/AIDS activist Barry Busch of Chester County.
Busch, like others in his position, is worried about privacy. But his concerns go beyond that: In much of the country, publicizing a person's HIV status can lead to harassment, discrimination and even violent attacks.
To add fuel to the activists' fire, it's been shown that far fewer people seek HIV-testing once a state has passed names reporting. "People like undocumented immigrants, sex workers and prisoners are among the most at-risk populations for HIV," says Kevin Conare, director of ActionAIDS in Philadelphia. "They're also the people who least want their names reported to the government. So if they know their names will be reported, that makes them much less likely to seek treatment, less likely to seek care."
Which is why the suggestion of data collection through a "unique identifier" system has been raised. While more costly to implement, the system would track HIV-related data but would replace people's names with an unbreakable code.
The support for unique identifiers has been overwhelming in Philadelphia. Many are looking to the example of states like California, where a proposal to report HIV-positive peoples' names was defeated with good old-fashioned stubbornness.
"Basically, in California, the state had decided to enact names reporting, but then the San Francisco Department of Health, which has more HIV-positive cases than any other place in the country, told the state straight-up: You ain't getting the names," says Barry Busch. "They refused to comply with names reporting, and eventually the state reconsidered and decided to use a unique identifier system instead."
But activists aren't likely to find such San Francisco-style resistance in the Philadelphia Department of Health. In fact, Health Commissioner Walter Tsou supports names reporting, due especially to concerns of cost and efficiency.
"He's really drawn a lot of outrage, by being willing to put safety and privacy at risk to cut a few cents off the budget," says Busch. "We know he'll come around, though."
Despite Tsou's intractability on the subject, other members of city government are already moving to emulate San Francisco's stubborn victory over names reporting. This Thursday, for instance, Angel Ortiz will introduce a resolution in City Council that opposes names reporting in favor of unique identifiers. Ortiz's resolution proposes that if the state Legislature implements names reporting despite the opposition, the city of Philadelphia should refuse to comply and not give up any names.
"That's the kind of ballsyness we need," says Busch of Ortiz's proposed resolution, "to keep my name and the name of every other HIV-positive person's name out of the state government's hands."
Letters to the Editor