November #118 : Positive I.D. - by Tom Beer

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Table of Contents

Senior Class

A Place at the Table

Food for the Soul

Med Blues

Doctor's Diary - November 2005

Talking Turkey

Licking Lipo Where it Lives

Tea Cells

Ask the Sexpert - November 2005

Bedroom Gambling

Word Therapy

Employee of the Month - November 2005

No More Stickups

Postscripts from the Edge

Buzz - November 2005

Positive I.D.

Courting Disaster?

Rent's Due

Mentors - November 2005

Pushing the $$$ Envelope

I Demand a Recount

We are Family

Founder's Letter - November 2005

Mailbox - November 2005

Most Popular Lessons

The HIV Life Cycle


Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV

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November 2005

Positive I.D.

by Tom Beer

Will california—and other states—start tagging hiv positive testees?

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 name.)

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.

In 2001, 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.

Many 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.

But 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 forward.”

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).

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