Threats, death, data: Public health leaders recall '80s AIDS struggles

Polystyrene
This 1985 photo shows polystyrene beads, integral components of the early HIV test. Reagents coated on the beads facilitated detection of antibodies to the AIDS virus.
AP 1985

Public health leaders had no idea what to expect when AIDS emerged in the early 1980s.

People were being diagnosed with AIDS late in their illnesses and many were dying, but that only revealed part of the picture. A test for HIV, the virus that causes AIDS, didn't exist.

In 1985, Minnesota became the first state to require reporting of positive HIV tests. Officials insisted it was necessary to accurately monitor and ultimately slow the spread of HIV. But it outraged people who feared their privacy would be invaded.

Thirty years later, memories of those early struggles remain fresh among those who led the public health response to HIV.

"You don't know where the virus is going, where it's spreading," recalled Richard Danila, who was in charge of the HIV program at the Minnesota Department of Health.

The work to find and understand the virus took a huge leap forward in March 1985 when the U.S. Food and Drug Administration approved the nation's first HIV antibody test. It "basically opened up your eyes to the complete picture," Danila said.

It also triggered a national debate over access to the test results. Gay rights activists argued that data should remain a private matter between a patient and his physician. Public health leaders wanted access to the patient data to track the quickly spreading epidemic.

Minnesota already had an infectious disease reporting law, but it wasn't clear if it applied to HIV. Seven months later, Minnesota Attorney Skip Humphrey ruled it did.

Many AIDS advocates were livid that the state would be collecting names, addresses and phone numbers of people infected with HIV, said Michael Osterholm, who was state epidemiologist at the time.

"I recall very well a number of death threats I had at that time," he said.

Minnesota had collected patient data for decades on syphilis, measles and other infectious diseases. There had never been any significant concern about the practice until HIV, Osterholm said. No other disease carried the social stigma of HIV, he added. People were worried their lives would be ruined if the state mishandled their data.

"HIV defined your life," he said. "People lost jobs. People lost family members in terms of their relationships."

He says there's never been a privacy breach tied to Minnesota's infectious disease reporting law. Danila though says HIV reporting led the Health Department to boost its data security.

Today, all 50 states collect patient data from positive HIV test results.

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