Virtually all of Oregon's AIDS/HIV advocacy groups are adamant in their opposition to the so-called "name reporting" requirement, fearing that people will be scared away from being tested. Moreover, advocates worry that name reporting could jeopardize insurance benefits and health care for persons living with HIV.
In spite of their uniform opposition to the change, however, these advocacy groups worry that their concerns are falling on deaf ears; most specifically, they fear that the Health Department is not giving due regard to the concerns of HIV-positive minorities living in Oregon.
Originally proposed three years ago, the change of administrative rules has slowly churned through the ranks of bureaucrats and government boards. Waiting on activists' protests and hours of board meetings, the proposed change has moved like molasses through the system. It has finally reached its stopping point before becoming a reality. The decision now rests on the shoulders of Martin Wasserman, Director of the Health Department.
Although Wasserman claims that he is still weighing various interests in making his decision, advocacy groups believe that their opinions have little gravity. Earlier this fall, for example, a committee of community members--appointed to make a recommendation to the Health Department--strongly discouraged name reporting. Yet, their liaison to the Health Department, Mark Loveless, reported their support of the decision, thereby squelching the little input the community had.
Wasserman and other public Health Department employees have argued that the alternative tracking system to names reporting--a system currently used in Maryland known as the Unique Identifier--is too expensive to implement. Norm Costa, however, who works in HIV Prevention and Outreach in rural Yamhill County, sees this as a reflection of the state's priorities.
"We're spending a lot of money on health services," he explained. "We really should start spending more on prevention, rather than treatment. We've been treating this disease for a long time, and people are still becoming infected at the rate they were 10 years ago. We need something to stop people from becoming infected."
There are more than 25 AIDS/HIV groups working against names reporting. They accuse Wasserman of working in the interest of AIDS patients who are already diagnosed and receiving care, rather than preventing HIV in minority groups.
Costa thinks that minority groups stand to lose the most if they are required to report their names to the state. "The people of color that I work with are often particularly hesitant to get tested," he explained. "They're so terrified of giving their name to the government, if they are forced to do that, we fear they'll forego testing altogether."
Alfie Linn-Ortiz, of the Multi-Cultural HIV/AIDS Alliance of Oregon (MHAAO), agrees that the state is not acting in the interest of people of color. "There are a lot of cultural reasons people fear giving their name--taboos around homosexuality and HIV--that the state is not aware of," he explains.
Local groups such as the Multi-Cultural HIV/AIDS Alliance of Oregon, the Hispanic Parents Association, and the Hispanic Services Round Table have led opposition for the change. Recently powerful local and national groups have joined them.
In a formal statement to the Health Department, Jann Carson, Associate Director of the ACLU, wrote: "OHD has a tremendous opportunity to build trust within Oregon's marginalized communities at the same time increasing its surveillance of HIV disease. The ACLU of Oregon urges OHD to abandon name reporting."
At a public hearing held in late October, opposition to name reporting was solidified by the support of the Cascade AIDS Project, one of Portland's oldest and most established AIDS advocacy groups.
Wasserman is expected to address the issue at a meeting of the Public Health Advisory Board on December 15. He plans to announce his decision by the end of the year.
If you'd like to be involved in the opposition to names reporting, call 503-284-6807, or e-mail firstname.lastname@example.org.