State tightens rules for tracking HIV

The names of Washington state residents who test positive for the virus that causes AIDS will be kept on file soon under a change health officials say is necessary to retain up to $5 million in federal funds for treatment.

The move dismantles a 1999 system that used codes instead of names to keep track of some 4,000 people who have been diagnosed with HIV but show no symptoms, said John Peppert, manager of HIV prevention services with the Washington Department of Health.

That system was a compromise hammered out among health officials and AIDS advocates, who worried that concerns about confidentiality might deter some people from being tested, said Mark Garrett, client advocate and community educator for the Spokane AIDS Network.

“The agency has always supported something other than a name-based system,” Garrett said.

Under current rules, names of people diagnosed with asymptomatic HIV are kept on file for 90 days with local health departments before being converted to codes and stored in secure state computer records, Peppert said. Names of about 11,000 people diagnosed with symptomatic HIV or with AIDS itself have always been retained without codes, he added.

The change is necessary to comply with new recommendations from the national Centers for Disease Control and Prevention, which are tied to allocations of funds through the federal Ryan White Care Act. The CDC won’t accept Washington’s statistics unless the state keeps names of HIV-infected people on file. Without statistics recorded by the CDC, the state could lose between $4 million and $5 million of some $23 million in allocations through the act.

Washington is among more than a dozen states that kept records using codes instead of names only. Idaho, by contrast, long has retained names of HIV-positive people, said Ross Mason, spokesman for the state Department of Health and Welfare. Those names, along with names of people with AIDS, are kept in a database connected to the statewide network, Mason said.

“Even people inside have to have a password,” he said. “It’s a pretty secure system.”

Last summer, however, CDC officials strengthened their position on name-based reporting, upgrading advice to recommend that all states keep track of HIV infection by name.

“The thing that stings the most about this CDC request for more information is that we were working under the assumption that our name-to-code system was working well,” said Garrett of the AIDS network.

But CDC officials contend that consistent, specific national data is necessary to monitor HIV infection effectively.

“It is important to have the best data possible, because only then can programs reach those who need them most,” said Jennifer Ruth, spokeswoman for the CDC. “This data allows for equitable distribution of resources, the evaluation of new prevention strategies and helps to fight the epidemic as it evolves.”

Since disease recording began, there have been no breaches in Washington’s security system, Peppert said. Electronic records are kept on a separate computer system. Paper records are kept in locked files, in a locked room, on a locked floor in a locked building, he said.

“And if you don’t have the right chips in your card, you can’t get in,” he added.

Health officials will seek emergency approval for the changes in March. Final approval is expected in June, Peppert said.

AIDS advocates reluctantly acknowledged that name-based retention is likely inevitable. It’s important now to ensure that the names stay with state officials in a secure system and that they’re not passed on to a federal database, Garrett said.

“I don’t want to create a public panic about this issue because I’m confident that the state is going to maintain confidentiality,” he said.

Early fears that identification would have a chilling effect on testing appear to be unfounded, according to several national studies, Peppert and Ruth said.

Still, Garrett acknowledged that concerns about identification remain a worry, especially in smaller communities. People concerned about confidentiality can seek anonymous testing, he noted. Spokane offices of Planned Parenthood and the Spokane Regional Health District offer anonymous tests for $30 to $40.