ACLU Says CDC Guidelines on HIV Surveillance Could Lead to Better Privacy Protections

FOR IMMEDIATE RELEASE

WASHINGTON — New guidelines from the Centers for Disease Control on HIV surveillance could pave the way for better privacy protections for people with HIV, the American Civil Liberties Union said today.

“In an historic first, the CDC guidelines commit the federal government to funding unique identifiers as a way to report new HIV cases,” said Christopher Anders, a legislative counsel for the ACLU. “CDC support for unique identifiers means that states will not be locked into an Orwellian system of collecting the names of every HIV-positive person in the state.”

The ACLU said the guidelines set three important goals for states, including:

• Improving their ability to count new HIV cases.
• Enhancing state privacy protections.
• Preserving anonymous HIV testing sites.

In the first area — improving a state’s ability to count new HIV cases — the CDC said unique identifier systems could be used. Under a unique identifier system, each person who gets tested for HIV is assigned a random and unique alpha-numeric code that is sent to the state, ensuring that the state does not have a master list of names. “The state cannot breach confidentiality if it does not have the names of HIV-positive persons,” Anders said.

One of the major flaws with the CDC guidelines, however, is that they mistakenly conclude that names systems are usually more accurate than unique identifiers.

“Unique identifier systems can without a doubt meet the tough standards set by the CDC Guidelines,” said Michael Adams, Associate Director of the ACLU’s HIV/AIDS Project. “Maryland, for example, uses a unique identifier system that is as accurate and complete as name reporting systems.”

A report that is to be published soon in a scientific journal will show that Maryland meets the 85 percent completeness rate specified in the CDC Guidelines. “Maryland did it without any help from CDC,” Adams said. “Now that CDC will provide federal funds, all states should be able to emulate Maryland — and do a better job of tracking without creating a list of names that scares away people who most need to get tested.”

Maryland was the first of four states and the District of Columbia to choose unique identifier systems. “We are hopeful that Maryland’s success will end the informal campaign by a handful of CDC officials to cajole states into adopting names,” Adams said.

The ACLU praised the CDC’s strong privacy requirements, which recommend that states adopt the model state privacy law drafted by a blue-ribbon committee of public health experts and privacy attorneys. “CDC is telling states that they have an iron-clad duty to protect the privacy of HIV-positive persons,” Anders said. “No one should have to risk having his or her name publicly leaked.”

The guidelines also order the states to do everything possible to preserve and support anonymous test sites, which some states have eliminated under the mistaken belief that anonymous testing undermined HIV surveillance.

“CDC is emphasizing that anonymous test sites save lives,” Adams said. “These guidelines tells the states that there is nothing inconsistent about tracking the HIV epidemic and preserving anonymous testing. It will save lives.”