HIV Patients Lose Privacy in Oregon

Almost 40 states now require that names of adults who test positive be reported

TUESDAY, Oct. 9, 2001 (HealthDayNews) -- With barely a ripple of national interest, Oregon last week became the latest state to require doctors to report the names of adults who test positive for HIV.

Critics of the policy, known as "name reporting," acknowledge that they have lost a battle in the ongoing war over medical privacy. Almost 40 states require doctors to give up the names of most or all patients with the virus, and the number is growing.

"This has been an ongoing struggle, but as more and more states adopt name reporting, the issue is becoming irrelevant," says Ronald Johnson, associate executive director of Gay Men's Health Crisis, an AIDS advocacy organization in New York City.

Tracking the identities of sick people is nothing new. Doctors normally send reports to local medical officials after they diagnose dozens of diseases. All 50 states compile reports of AIDS cases by name.

But HIV, the virus that causes AIDS, was in a different category. Until the late 1990s, only a few states collected names of HIV-positive patients.

Then the federal government suggested that states do a better job of collecting HIV statistics, preferably by name. With the major exception of California, many states agreed to do so, although the rules are complicated and vary widely.

In a 2000 report, officials at the Centers for Disease Control and Prevention estimated that 31 states permanently take the names of HIV-positive people. At least two other states -- Delaware and Oregon -- recently decided to only keep records of names for a time and then destroy them in favor of a different code for each patient.

Some states do not collect any information about HIV-positive patients, while others track them by using individual codes known as "unique identifiers."

Some states, including New York, instituted name reporting but continue to allow anonymous testing. Generally, that means someone can get tested and get the results by supplying an identifying number instead of a name.

Gay Men's Health Crisis remains opposed to names being reported, Johnson says. "We feel that a names-based system could be a barrier to people getting tested, because there's a fear of being reported. We're at the point in the epidemic where it's important to maximize the number of people who get tested."

But he says that HIV cases should be tracked because AIDS itself has become a treatable disease and many people go years without developing it. "Knowing the number of HIV-infected people is a better barometer of the epidemic and where the epidemic is going than reporting of AIDS cases," he says.

Oregon medical officials say they need names in order to track the disease and keep an eye on the medical profession. "We think it's important to have a name to make sure the doctors who are working with the patients are giving them the necessary services," says Dr. Grant Higginson, the state public health officer.

After a 90-day period, the names will be destroyed and codes used instead.

Higginson added that the Oregon system does allow doctors to give officials a partial name if a patient insists on confidentiality.

AIDS Action, an advocacy group based in Washington D.C., has reservations about name reporting, especially when a system requires state officials to make sure that HIV-positive patients are getting medical attention. "So many issues are going on psychologically for individuals when they first get their HIV diagnoses," says policy associate Scott Brawley. "A lot of people are not prepared to enter into care."

Also, immediate medical care may not be necessary, he says. "Some doctors are willing to wait a certain amount of time."

Confidentiality is an even bigger issue, he says, even if states promise to protect privacy. "A lot of people will go in and have the blood drawn or saliva taken (in an HIV test) and never go back to receive the results," he says. "With name reporting, you will compound that even further. You'll see a lot of people who will never go back to get their test results."

According to the CDC, the following states require health officials to collect the names of adult HIV-positive patients (as of 2000): 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.

New York has since joined the list. However, the list doesn't include states that collect names initially then discard them after a time period and use codes instead.

What To Do

Several states have changed their HIV reporting policies in recent years. Contact your state or territory AIDS agency to find out the latest. Get phone numbers by visiting the National Alliance of State and Territorial AIDS Directors.

Curious about how many people suffer from AIDS in other countries? The U.S. Census Bureau provides a wide variety of statistics. (You'll need a copy of Adobe Acrobat to read the fact sheets. Get it free here.)

SOURCES: Interviews with Ronald Johnson, associate executive director, Gay Men's Health Crisis, New York; Scott Brawley, policy associate, AIDS Action, Washington D.C.; Grant Higginson, M.D., Oregon public health officer, Salem
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