Mich. health dept. denies media access to training on controversial HIV database* UPDATE
This article has been updated, below the original story, to reflect that The American Independent has been authorized to attend Wednesday’s meeting.
LANSING, Mich. – Dozens of agencies and local health departments will be attending a mandatory meeting Wednesday in Lansing to review grant-fulfillment requirements related to HIV funding, but the media is not invited, or allowed.
At this meeting, the state health department will be training grantees on how they should be using the state’s HIV Event System, through which the state has been secretly collecting personally identifiable information of persons testing for HIV, as The American Independent recently reported.
The state’s responses to questions about this HIV database have diverged from what organizations being told to collect data have told TAI the state is telling them.
But the Michigan Department of Community Health has denied TAI’s request to attend this meeting, which is not covered by the state’s Open Meetings Act. That law only covers government bodies that are decision-making bodies.
“Being that this training is hosted for grantee agencies, and that they have been approved and authorized to have access to the information being shared there, this is not an opportunity where you could attend,” said MDCH spokeswoman Angela Minicuci in an email to The American Independent. “That said, I’m looking into getting the materials that can be shared for public consumption for you and to get more details about the training.”
The meeting is being hosted for 16 agencies in Michigan that shared a pot of nearly $2.5 million in federal HIV-prevention dollars. Grantees include AIDS Partnership Michigan in Detroit, Community AIDS Resources and Education Services in Kalamazoo, and the Michigan AIDS Coalition in Ferndale.
An agenda for the meeting given to TAI by an employee of one of the grantee agencies shows that department officials will review partner services, quality assurance for the HIV Event System, and best practices for HIV programming. According to the agenda, grantees will also have a half-hour to meet with their state-assigned contract monitor.
The meeting is important because state officials will likely discuss the expectations of grant-funded agencies in meeting their goals under their grants. Part of the grant obligations assigned to the agencies is data collection and reporting to the state’s HIV Event System.
Civil libertarians have said the data collection surrounding the HIV Event System raises “serious questions.”
“We think the meeting should be open to public, particularly in light of the need for transparency regarding the data collection,” said Jay Kaplan, staff attorney for the American Civil Liberties Union of Michigan’s LGBT Project.
One Michigan lawmaker is calling on Gov. Rick Snyder to intervene. Snyder has authority over the MDCH operations.
“After reading about some questionable practices regarding confidential information, I am very disappointed that the Michigan Department of Community Health is denying access to the public at a meeting for granted agencies to discuss data that is required for reporting and grant fulfillment,” state Rep. Andy Schor (D-Lansing) told TAI in a Facebook chat. “Governor Snyder has talked about the need for transparency in government, and the MDCH should have nothing to hide about their process for collecting HIV information and what is happening to the people on that list. I hope the Governor will intervene to truly make his administration transparent to the public.”
A spokesperson for Snyder did not respond to a request for comment.
*UPDATE: 4:26 EST: The Michigan Department of Community Health is now allowing The American Independent to attend the HIV-prevention grantee meeting Wednesday. Late Tuesday afternoon, the health department sent TAI a letter, giving authorization. MDCH spokeswoman Angela Minicuci said the reversal was the result of an appeal TAI filed last week challenging the decision to bar the media from the meeting. Minicuci told TAI that the decision of whether or not to grant TAI access to the meeting had been under consideration for about a week and was finally approved this morning.
According to the letter, TAI has been given permission to attend the meeting and to take notes, but not to ask questions or record any part of the meeting:
While we are allowing you to attend the meeting tomorrow, we are not permitting you to bring any recording devices and ask that you observe the presentations and discussions only. This meeting is an orientation session for new grantees to meet with program staff and learn about their responsibilities and requirements as a grantee. By having a member of the media present recording their conversations and asking questions, the tone of the meeting would be changed dramatically. You are more than welcome to take notes, but a recording device is not permitted. Should you have questions that arise throughout the day, please submit them in writing to the Department of Community Health after the event and we will work to address your concerns. If a recording device is used or if questions are asked of the attendees or program staff tomorrow, you will be asked to leave.
Never give your name for an HIV Test! Michigan, this is slimy and serves only to hurt HIV prevention efforts. Your deception is unveiled and you can no longer be trusted. There’s no unringing of the bell and people may die because of it.
Serious questions about an non-names based demographic data collection system? Really? By characterizing it as somehow able to leak patient information, you have just scared thousands of people from testing for HIV! People will get infected and die because of your need for a headline.