Tuesday October 02, 2001

Oregon Starts 'Names Reporting' Policy

Randy Dotinga,  PlanetOut.com

SUMMARY:  On Monday Oregon became the latest state to require doctors to report the names of adult patients who test positive for HIV.

On Monday Oregon became the latest state to require doctors to report the names of adult patients who test positive for HIV. The state's decision would have been controversial just a few years ago, but the national reaction is muted this time because critics appear to have lost the battle over "names reporting." 

"The issue has pretty much quieted down. It's becoming moot," said Ronald Johnson, associate executive director of Gay Men's Health Crisis, an AIDS advocacy organization in New York City. 

All 50 states require doctors to report the names of patients with AIDS. Many other diseases are also reported by name. 

But HIV, which causes AIDS, had been an exception to the rule in most states until the late 1990s. Then, armed with a federal recommendation, many states started to keep track of HIV-positive people by name. Now at least 33 states do so, including Delaware, which began its naming system in July. 

According to experts, the naming system makes it easier to keep accurate statistics and to make sure HIV patients are getting proper care. But the policies of the states are a hodgepodge of rules and exceptions designed to protect privacy. 

Consider Oregon. Doctors must report the names of patients with HIV unless the tests are anonymous. The state then keeps the name for no more than 90 days while making sure that the patient is being cared for. 

After the three-month period, the state will track HIV patients by using a "unique identifier" -- a code number. Just a handful of other states -- including Delaware -- have similar "name-to-code" policies. 

"Tracking HIV infection as well as AIDS cases means that public health will have a much more accurate understanding of the disease," said Oregon public health officer Dr. Grant Higginson in a statement. "This will improve our ability to plan services and prevention activities." 

But there are loopholes. Patients with confidentiality concerns are allowed to provide only part of their full names. 

On the other hand, about 10 states give all HIV cases a number, meaning that no names are required. The other states -- including California - don't yet require reporting of HIV cases. 

Gay Men's Health Crisis prefers the no-name reporting system. "There's a risk to confidentiality and of opening the door to possible stigma and discrimination," Johnson said. 

AIDS Action, an advocacy group in Washington D.C., doesn't have a position on names reporting. But the organization is skeptical of the policy, said policy associate Scott Brawley, especially considering that an estimated 40 percent of people with AIDS never got an HIV test before they were diagnosed. 

"With names reporting, you will compound that even further," Brawley said. "You'll see a lot of people who never go back to get their test results. If your name is in a computer base, who knows who will look at it?" 

States insist that their privacy precautions are strict, but Brawley is not so sure. "If you're in a small rural town, you don't know if the secretary who will file this information is your neighbor," Brawley said. 

As of 2000, the following states required doctors to reveal the names of HIV-positive patients (list does not include states that initially collect names then turn them into codes, only identify patients by codes, or collect no information): Alabama, Alaska, Arizona, Arkansas, Colorado, Florida, Idaho, Indiana, Iowa, Kansas, Louisiana, Michigan, Minnesota, Mississippi, Missouri, Nebraska, Nevada, New Jersey, New Mexico, North Carolina, North Dakota, Ohio, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, West Virginia, Wisconsin and Wyoming.