State to keep names of HIV-positive Oregonians

Facing the loss of millions of federal dollars, Oregon health officials plan to keep on file the names of people who test positive for the virus that causes AIDS.

Under the current policy, the names of people whose HIV tests come back positive are kept for 90 days. After that, the names are replaced with a code that keeps anyone from finding out the identity of those who carry the virus.

The change is necessary to comply with a new federal requirement, said Dr. Mel Kohn, state epidemiologist with the Oregon Department of Human Services. The national Centers for Disease Control and Prevention won’t accept Oregon AIDS statistics unless the state retains the names of those infected. Without the change, Kohn said, Oregon would lose 30 percent to 40 percent of its annual $10 million in federal AIDS-treatment dollars.

That money, the state’s share of the Ryan White Care Act, buys expensive antiviral drug "cocktails" for hundreds of infected Oregonians. Such treatments can cost $15,000 to $20,000 a year, he said.

In the future, funding probably will be based on the number of HIV infections and AIDS cases officially counted by the CDC. But that agency won’t count the cases unless the state retains each name. Names are not passed along to the federal government and are kept in a secure computer that is not connected to a network, Kohn said.

Five years ago, activists opposed keeping the names on file, but stopped short of saying they would do so again.

"That’s a concern that we have, that people will perceive it as a risk to their confidentiality, and then decide not to seek testing," said Kelly Moore of the nonprofit HIV Alliance in Eugene.

She said the state has not compromised the confidentiality of test results submitted to the state Department of Human Services.

Moore said the change "is going to happen, and we don’t really have a choice at this point.”

Officials of Cascade Aids Project declined to comment on the change. But Thomas Bruner, the agency’s former executive director, said the change probably would not affect people’s willingness to have HIV tests. In 2001, when the code system went into effect, he said, some AIDS activists predicted that keeping names even temporarily would discourage people from being tested until they became very ill. But that didn’t happen, he said.

Kohn said that keeping the names will give researchers more time to ask infected people about their risk factors, Kohn said. To stop the spread of AIDS, he said, it’s important to know whether someone was infected through sex or injection drug use. Also, he said, having the names would make it less likely that AIDS cases are counted more than once.

The current code system, in which the names are deleted, is intended to protect the privacy of those who are HIV-positive.

Kohn said that despite the change, anonymous testing will still be available throughout Oregon for those who want it. With anonymous testing, a person uses a number for identification instead of a name. About 7 percent of the 104,000 HIV tests administered each year are anonymous.

Dr. Sean Schafer, a medical epidemiologist who monitors HIV in Oregon, said the most recent figures show 4,022 Oregonians live with AIDS and HIV infections, with 275 to 300 new cases reported each year. AIDS kills about 100 Oregonians a year, he said.