It’s another names project—but unlike the one that spawned the AIDSquilt, it has HIV-privacy proponents hanging by a thread. California iscontemplating a switch from anonymous HIVer tracking to naming thosewho test positive, becoming ground zero in a national medical andethical debate. In July, the Centers for Disease Control and Prevention(CDC) urged state health departments toward names-based reporting: a“single, accurate system that can provide national data to monitor thescope of the HIV/AIDS epidemic.” (All other illnesses are reported byname.)

Like the other six states promising names privacy (seesidebar), California is in a bind. Congress launches a new AIDS-fundingplan in 2007, likely contingent on each health department’s naming ofnames. California advocates and officials must choose betweendollars—they stand to lose $50 million—and protecting anonymity. Anames bill faces Cali’s legislature in January.

In 2001,California instituted a code-based system, assigning cases a15-character code. That complicated the entering and tracking of data.“Even a small error in the code adds up to thousands of incorrect[health department] notifications,” says Doug Frye, a director at LA’sDepartment of Health. Michael Montgomery, chief of California’s Officeof AIDS, adds, “We already have 38,000 [cases] reported by code since2001—we’d have to redo [them].” But Montgomery and Frye support aswitch, deeming accurate tracking essential. So does Philadelphia’sboard of health, which jumped from codes to names in August.

Manyadvocates fear the possibility that HIVers’ statuses could becomepublic, prompting discrimination. “It’s important that people with HIVdecide when their private information is disclosed,” says Jon Givner,HIV project director at Lambda Legal Defense and Education Fund. InFlorida, which mandates names reporting, HIV-patient names wereaccidentally e-mailed to 800 health department employees earlier thisyear. And the Center for AIDS Prevention Studies found that namesreporting would deter many Californians from getting tested.

ButFrye, Montgomery and many AIDS activists disagree. They point to a 2002New Mexico survey finding no drop in that names-based state’s testing.And they downplay the Florida snafu. Do they just have CDC dollar signsin their eyes? The San Francisco AIDS Foundation’s Dana van Gordersays, “A lot of people could agree to hold their noses on this and moveforward.”

Testing 1-2-3
A primer on how HIV is  recorded—and reported

Anonymous Testing
Results given verbally. Names aren’t recorded, but states tracks stats on gender, status, race and sexual orientation. Unavailable in Alabama, Idaho, Mississippi, Nevada, North Carolina, North Dakota, South Carolina, South Dakota and Tennessee.

Confidential Testing
Results and names are recorded. Medical personnel and state health departments can access these records. Insurers can see results only if they’ve paid for the test. Often required for immigration purposes. Available in all states.

Names Reporting
Testing facilities must name HIVers to state and local health departments for tracking stats. Occurs in all states except California, Hawaii, Illinois, Maryland, Massachusetts, Rhode Island, Vermont and Washington, DC.

Code-based Reporting
Newly diagnosed HIVers are reported to state and local health departments with a letters-and-numbers code. Maintains anonymity but has caused confusion in record keeping. Only seven states and DC use this one (see the states in Names Reporting at left).