Michigan's HIV testing scandal

When seasoned investigative reporter Todd Heywood set out to write a piece on government-funded HIV testing in Michigan, little did he know it would turn into a yearlong crusade. “This is by far the most time I have had to expend in any investigation in 20 years of reporting. I was truly shocked,” he says.

Heywood reports for The American Independent, a nonprofit news organization designed to investigate news that “impacts public debate and advances the common good.” This story emerged from a 2011 investigation into alleged data breaches at the Michigan Department of Community Health. What he discovered was stunning:

Since 2003, the Michigan Department of Community Health has been secretly collecting the names, dates of birth, risk categories, and other demographic information of people submitting for confidential HIV testing at grant-funded locations throughout the state and storing them in a massive database.

Scarier still, Heywood found the state not only collects results of those who tested for HIV – but their partners as well, regardless of HIV status. So if a person goes to a government grant-funded location in Michigan to be tested for HIV, his or her information gets loaded into the state database. Indefinitely. And, as Heywood discovered, that information is being used to “pursue both civil actions – known as ‘health threat to others’ actions – and criminal prosecutions against people living with HIV.”

The struggles Heywood encountered reporting this story illustrates the painful need for Michigan to transform the way it deals with public information. As Heywood explains, it’s not enough to send in a Freedom of Information Act (FOIA) request: “I was truly shocked at how difficult retrieving basic information on the data collection of private information of persons testing for HIV was.”

It should not be this difficult. Reporters and citizens alike should not have to fight for public information. In my own work at the Mackinac Center for Public Policy, I famously received a $7 million bill for information I wanted from the Michigan State Police.

It’s not just documents. The state has a day-long meeting on this very issue today – a mandatory meeting for every agency in Michigan that gets federal HIV prevention funding and testing through MDCH grants.

Heywood is not allowed to go. The initial reason from the MDCH was that ‘sensitive information’ will be presented. “I challenged that,” Heywood said. “The state (then) changed their reason to the fact I am not a grantee.” After more haggling, the state finally relented.

Heywood’s investigative reporting track record is impressive. He documented the story of Michigan State University basketball players accused in an alleged rape. His coverage of the Enbridge Energy oil spill led to a federal indictment of a Texas contractor.

But with more than 300 hours of investigation involving 60 e-mail interviews, phone calls, FOIA requests, appeals and thousands of documents that have kept Heywood occupied over the past year, Heywood said this is by far the most frustrating story he’s ever worked. And it could be the most concerning. If it takes that much investment to find that Michigan secretly keeps information about people who test negative for HIV, what else does our government know about us? And hide?