It’s another names project—but unlike the one that spawned the AIDS
quilt, it has HIV-privacy proponents hanging by a thread. California is
contemplating a switch from anonymous HIVer tracking to naming those
who test positive, becoming ground zero in a national medical and
ethical 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 the
scope of the HIV/AIDS epidemic.” (All other illnesses are reported by
Like the other six states promising names privacy (see
sidebar), California is in a bind. Congress launches a new AIDS-funding
plan in 2007, likely contingent on each health department’s naming of
names. California advocates and officials must choose between
dollars—they stand to lose $50 million—and protecting anonymity. A
names bill faces Cali’s legislature in January.
California instituted a code-based system, assigning cases a
15-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’s
Department of Health. Michael Montgomery, chief of California’s Office
of AIDS, adds, “We already have 38,000 [cases] reported by code since
2001—we’d have to redo [them].” But Montgomery and Frye support a
switch, deeming accurate tracking essential. So does Philadelphia’s
board of health, which jumped from codes to names in August.
advocates fear the possibility that HIVers’ statuses could become
public, prompting discrimination. “It’s important that people with HIV
decide when their private information is disclosed,” says Jon Givner,
HIV project director at Lambda Legal Defense and Education Fund. In
Florida, which mandates names reporting, HIV-patient names were
accidentally e-mailed to 800 health department employees earlier this
year. And the Center for AIDS Prevention Studies found that names
reporting would deter many Californians from getting tested.
Frye, Montgomery and many AIDS activists disagree. They point to a 2002
New Mexico survey finding no drop in that names-based state’s testing.
And they downplay the Florida snafu. Do they just have CDC dollar signs
in their eyes? The San Francisco AIDS Foundation’s Dana van Gorder
says, “A lot of people could agree to hold their noses on this and move
A primer on how HIV is recorded—and reported
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.
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.
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.
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).