Mich.’s AIDS planning group trades transparency for protection of members’ HIV status

LANSING, MICH.—The Michigan Department of Community Health has launched an investigation into whether its HIV/AIDS advisory body violated the state’s Open Meetings Act by requiring attendees to sign a confidentiality agreement.

Michigan’s Open Meetings Act prohibits requiring a person to sign in or otherwise do something in order to attend a public meeting, said Robin Herrmann Luce, an attorney with the law firm Butzel Long, which operates the Michigan Press Association legal hotline.

But the situation raises a broader set of issues, beyond the potential  violation of the state’s public meetings law. First, there’s the tension between confidentiality and public service.  A certain number of HIV-positive people are required  to serve on this HIV advisory council, and many of them do not want their HIV status known to the people of Michigan. For this reason, council members do not want their names revealed to the public – despite the fact that in this capacity they are acting as public servants with significant responsibilities and duties that directly impact Michigan’s broader HIV community.

Additionally, it appears that the state health department has failed to train the citizens serving on this body regarding their roles and obligations as public servants.

Earlier this month, I attended a public meeting held by the Michigan HIV/AIDS Council in Lansing, in order to hear the council’s discussion on a study released in February in the journal Social Problems. The study, by Ph.D. candidate Trevor Hoppe, outlined ways  local health departments were using  a part of the public health code to control the behavior of people living with HIV. After identifying myself as a reporter, I was immediately asked to sign a confidentiality agreement. By signing that document, I would have agreed not to report on the identities of any of the officers at the meeting.

So I declined, after pointing out that this request violated state law.

The HIV/AIDS Council’s interim chair, LaRonda Chastang, who also works for the state health department as the interim director of prevention services, told me the confidentiality agreement was required by the group’s bylaws. She said that everyone who attended had to sign the agreement in order to attend the meeting.

After contacting the state health department, I was eventually allowed into the meeting without signing the confidentiality agreement, about an hour-and-a-half after the meeting began.

The discussion on the Hoppe study never happened. The council had voted to go into closed session to discuss the study, something prohibited under the Open Meetings Act. I pointed this out to the council, so the members voted to table the issue until they received legal advice on this action.

Michigan’s advisory HIV/AIDS council serves a critical role in HIV care and prevention in the state. This body is responsible for approving state plans to address HIV and AIDS, including which demographics prevention efforts should target. Without the council’s approval, the Centers for Disease Control and Prevention can withhold all federal dollars.

The council is made up of staff from local public health departments, members of AIDS service organizations, community members, and persons living with HIV. These bylaws require the council have minimum numbers of people from various constituency groups serving on the council, including at least four who must be living with HIV and have no affiliations.

The bylaws of the group provides members confidentiality. This confidentiality provision appears to be based on a reading of Michigan’s HIV confidentiality law. However, the law relates to, “all reports, records, and datarelated to HIV testing and care – not verbal, public disclosures. The law carries a misdemeanor criminal penalty and a $5,000 fine if it is violated. Records from the Michigan State Police indicate there has never been a prosecution under this provision since it went into effect in 1989.

As part of the state’s investigation, health department spokeswoman Angela Minicuci said the department is reviewing if Michigan’s Open Meetings Act  is in conflict with federal rules on the implementation of the federal Ryan White CARE Act funding, which requires bodies like the HIV/AIDS council to be sensitive to confidentially of participants, with particular emphasis toward those living with the virus.

Elizabeth Senerchia, a spokeswoman for the federal Health Resources and Services Administration, which establishes rules related to health-care issues, said there is no requirement under federal law to ensure confidentiality. But Senerchia declined to comment on the Michigan health department’s situation. In an email, she said organizations such as the Michigan AIDS/HIV Council are encouraged to “consider the confidentiality concerns of People Living with HIV (PLWH) as a way to ensure the broadest participation possible.”

Herrmann Luce said the situation in Michigan points to a larger issue with transparency laws.

“People generally don’t understand what their obligations are under FOIA [Freedom of Information Act] and/or OMA [Open Meetings Act],” she said.

Minicuci said Chastang has had no training on the Open Meetings Act.

Mark Peterson, who used to work for Michigan’s health department and previously served on the HIV/AIDs Council, said says questions about the Open Meetings Act have been raised in the past. Peterson was dismissed from the department in January. He was given no reason for his dismissal, which is legal in Michigan, an “at-will” employment state.

“In my years with MHAC, both as a member and a staff person, I don't remember a single training specifically on the Open Meetings Act or confidentiality issues,” Peterson said in an email. “As a staff person, I often brought the language from the OMA to meetings in case it was ever needed as a meeting resource. It was never called on for use. During my last 6 months as a consultant, I did have discussions with HAPIS [HIV/AIDS Prevention and Intervention Section of MDCH] management regarding the OMA, however it seemed that my suggestions about how it governed the actions of this group were taken as a challenge.”

Peterson said he thinks the confidentiality provisions included in the group’s bylaws violate the Open Meetings Act.

But beyond the law is a more pressing question – the impact of stigma against those living with HIV, he said.

“We have difficulty around disclosure because we are still drenched in stigma,” Peterson said. “How can HIV positive people fairly disclose their status in an attempt to combat stigma? How can HIV positive people and others assure the community about the importance of getting tested for HIV, and if positive entering into care services as soon as possible – when we are still treated like vectors of disease by many in public health and by our state laws?”

Many people on the council expressed fear that their HIV status would be disclosed publicly when I attend their meeting.

And when Minicuci sent me the roster of voting members and advisors on the council, she said members were wary about having their names released to the media.

“Several have expressed concerns about having their personal information used without their consent,” Minicuci said in an email.

The American Independent chooses not to publish this list in order to prevent the identification of people who may be living with HIV in Michigan.

Overcoming this fear, Peterson said, requires a renewed partnership between those living with HIV and health officials.

“It only takes integrity and transparency on the part of the state health department to act in a leadership role and bring HIV positive people and those who work with us, to a place where they are the supported agents of real change,” he said. “I think the answer lies in creating a state HIV program that acts in concert and partnership with local public health, community based organizations and PLWH/A [People Living with HIV/AIDS].”

He added: “I think if the relationship between these stakeholders and the state health department is viewed as adversarial or that funded agencies and PLWH/A are beholden to the state health department, then innovation around HIV prevention, care and stigma reduction is just not going to happen any time soon.“

HIV ribbon