The Minnesota HIV Services Planning Council

The Minnesota HIV Services Planning Council is an appointed body that allocates all of the funding for Part A Ryan White Services and recommends funding for Part B Ryan White Services in Minnesota.  In less jargony terms, they decide which services are most important for people living with HIV in Minnesota, and then fund those services using federal dollars.  The Council is made up of around 30 people, including those living with HIV/AIDS (“consumers”) and those who provide services to people living with HIV/AIDS (“providers”).  As an epidemiologist, I was appointed as a provider to their Needs Assessment and Evaluation committee.

So, it came time to do our needs assessment, prioritization, and allocation processes.  This is the primary function of the Planning Council; we had spent over a year doing research and studies, preparing summaries, and sitting in long committee meetings. In this process, the Part A Grantee provides their recommendation, and the Council discusses, amends, and ultimately approves a proposal. This cycle, the Council approved the recommendation with little discussion, no amendments, and more than 2 hours left in the scheduled meeting. Members were excited to leave and get back to work/home/whatever, and patted themselves on the back for a job well done.

Then, there was a survey of Council Members about how they thought the process went.  More than half disapproved.  The Council staff members were quick to dismiss the results because “three of the responses came from the same IP address,” suggesting that foul play had negatively skewed the results.  In reality, there are three Council Members (including myself) who work for the same hospital, and probably took the surveys from within the same network.  When I asked what the IP address was, I was told it was not appropriate to ask that, and they would not be released out of concern for members’ privacy.

In response, I made a Minnesota Government Data Practices Act (MGDPA) request to the Hennepin County Attorney’s Office.  The head of the Ryan White Program for Hennepin County called my supervisor to complain that I was consuming resources in filing my request, and suggested that I be disciplined [note: this is illegal].  The County Administrator called me to personally apologize.  Months later, the data I requested was released, and I was proven to be right:  the three surveys were all legitimate and, in fact, the majority of Council Members did not approve of how they allocated funds for HIV services.

As a result of my MGDPA request and data practices concerns, a County Attorney came to a subsequent Council meeting to discuss MGDPA and Open Meeting Laws.  I followed up via email with the attorney, specifically outlining my concerns regarding the Council.  He sent a follow-up memo.  This was discussed at a Planning Council meeting (emphasis added):

Memo from County Attorney’s Office – Tim distributed a document from Dan Rogan titled HIV Planning Council.  This document provides written answers to questions asked when Dan attended a Council meeting to talk about Open Meeting Laws.  Questions/Comments:

• Antonio Mo. asked about #4.  Tim said we have always treated Council information privately.  Because of the law we are required to provide the home address of Council members if requested.  Current staff have never received this kind of request.  The question was brought up around the Council roster which includes addresses, email addresses, and phone numbers.
• Keith asked that Council member information being shared with other members be discussed with new applicants.  Tim said this is discussed during the interview and in the application.
• Loyal said a Google search of his name will bring him up on the Council website.  He is disheartened that his affiliation with the Council is so public. 
• Mike B. asked that this document be posted somewhere so it can be referenced.
• Adam asked if this can be addressed at Operations.  Tim said yes.

Loyal is a good guy: very thoughtful, well-spoken, and respectable.  He is not the only one on the Council with this concern (although, he may have been the only one with the guts to express it).  It certainly is valid.

However, this concern epitomizes my issue and belief.  Every time I vote on a matter, regardless of how seemingly insignificant, I want to be absolutely sure that I have a reason behind my decision.  If what I say and do is publicly available, then I should assume that at some point somebody may ask why I said or did something.  I’ve failed if my response is simply, “I voted for it because everyone else did.”  In the same vein, my name and contact information being publicly available provides a means for this to occur — if nobody knows who I am or how to reach me, then they have little recourse in expressing their disagreement.  So, for me, MGDPA and Open Meeting Laws provide an impetus to ask questions and, when appropriate, dissent in public meetings.

The Public Health Advisory Committee (PHAC)

The Public Health Advisory Committee for the City of Minneapolis hears concerns from citizens about public health issues, advises the Minneapolis Department of Health and Family Support (MDHFS), and distributes (with City Council approval) $400k in Public Service Community Development Block Grant (CDBG) funds.  I serve as a Co-Chair of this Committee.

When it came time to distribute the CDBG dollars, we established a process, funding principles, and priority areas (PDF).  We had a large community review process, and long discussions about the various needs of the community and what services would meet those needs.  Ultimately, we came up with a proposal that the Committee (and City Council) felt satisfied with.

Of course, it’s never that simple.  There were funding cuts, and our $400k dropped to $140k.  The decision was thrown back to the Committee to decide how to absorb this cut.  We returned to our principles, ranking, and discussions.  Being reminded of what we originally thought was important, and remembering the desire to address socioeconomic determinants of health and health disparities, we (relatively easily) came to a conclusion as a committee about where to put our remaining dollars.  It sucks that we didn’t have enough money to go around, but it feels good that we debated and considered almost every possible solution and ended up making a decision that seems fair and socially just given our constraints.  I feel confident defending the decision to fund those specific organizations, and believe they will be able to make the most impact on the health of Minneapolis residents.

Open Government = Public Health

Most public health organizations strive to address socioeconomic determinants of health, eliminate health disparities, and (in general) help people be healthier.  The Planning Council and PHAC both, to their own extent and in their own way, do that.  However, in their last funding cycles, PHAC had a much more significant discussion regarding the needs of the community.  The Planning Council essentially rubber-stamped a flat-funding proposal with barely any discussion.

The only way public health is going to identify and address the needs of a community are by talking to members of that community.  That’s exactly why the Planning Council and PHAC exist.  However, the Planning Council, in their creation of a privacy-centric public body, has created an atmosphere where few community members are willing and able to start or engage in meaningful dialogue.  The result is a process that few are happy with, and a product that could only be improved.  Neither of these results creates an environment where innovative policy solutions to health disparities and improvements to socioeconomic determinants of health can be created.

When a positive attitude towards open government and transparency is adopted, members let go of their personal privacy.  If there is no personal privacy, then concern shifts from protecting information (e.g., “I don’t want anyone to find anything about me online”) to protecting reputation (e.g., “I want to make sure my statements and votes are accurate and consistent with my ideology”).  If concern is primarily regarding reputation, then members feel compelled to seek out information and knowledge to make informed decisions about presented topics (i.e., an informed decision will, hopefully, prevent public criticism).

In order for public health to be successful, we need our elected and appointed leaders to engage in meaningful discussions about problems in our communities.  For that to occur, we need a constituency informed and ready to hold public officials accountable.  Information only comes when the public has access to data, and that can only occur when the government is compelled (willfully or legally) to provide it.

That is, public health can only succeed within an open and transparent government.

The editorial (intentionally) does not spell out any details about what kinds of programs should be done. That’s simply too much detail to fit into the space allotted. Since it couldn’t be done there, I’d like to share a few ideas and examples of ways to truly utilize social media and the internet:

• Advertise online. That seems stupid and simple, but when was the last time you saw a HIV prevention message online? Red door has done this… but I haven’t heard of or seen any other Minnesotan organization doing HIV prevention through online advertising.
• Video contest. The Ryan White program unsuccessfully tried this. One of their major failures was that they viewed the intervention as the end product and not the process. By having a video contest that’s graded by peers, the peers are also receiving the prevention messages. That’s the social aspect of social media :p
• Midwest Teen Sex Show. It’s not a naughty website. It is, however, an example of a way to step away from the overly-sterile messages that sometimes come out of health organizations.
• DC FUK!T. This is a dirty website. But that’s also what makes it so great. It’s essentially a sex ed video you can jack off to. And, there’s some evidence to suggest this kind of approach is effective in certain populations.

Ultimately, my issue is that it doesn’t feel like prevention is evolving to keep up with the epidemic. Prevention workers are already over worked, and there isn’t new money coming in. The internet is still relatively new, and many people that have been working in HIV prevention don’t comfortable on facebook, twitter, youtube, etc. So, in some ways it makes sense that new programs are slow to emerge.

However, we won’t know what works until we try. There’s a group of young people interested in stopping this recent epidemic that has started to meet. The idea is that among this group, we have the skills and resources to develop and execute pilot projects. And, hopefully, we can do things that will raise awareness about this problem. So, if you’re under 30 and interested in finding out more, send me a message.

I continue to hear rumors that newly diagnosed cases of HIV among young men are not abating in 2010, and I continue to not see much of a response from the government regarding this increase. I don’t think anyone has answers about how to solve this problem, and that’s ok. It’s the lack of effort to try to find solutions that really bothers me. Anyway, here’s what ran in the strib:

As Pride weekend arrives once again, we remember the shocking news that came out of last year: The Hennepin County Public Health Clinic identified six new HIV-positive people, five of whom were under 30. This was a number that hadn’t been seen in years.

A few months later, the Minnesota Department of Health (MDH) issued a startling letter to service providers identifying a large increase in newly diagnosed HIV cases, with a bulk of them in the metro area. MDH then released preliminary 2009 data to much media fanfare.

HIV in men under 25 increased 83 percent in the last year and 300 percent since 2001, to a level not seen since 1986.

The story came and went.

Locally, Hennepin County’s Ryan White Program answered this startling news by organizing just a few sparsely attended youth events.

Its use of this dated and financially wasteful tactic was against the strong and early advice from those of us who work within these affected communities. MDH points to the Internet as a cause of the increase in HIV, yet none of this funding was spent online.

Now we’re back to the same HIV-prevention activities from the past decade; politically safe and of apparent decreasing effectiveness. Yet, with few exceptions, HIV-prevention activities have yet to truly utilize the Internet.

So what’s the impact? In the last five years, 222 young men have been infected with HIV in Minnesota. This is 132 young men beyond our endemic 2001 levels. It translates to $137 million dollars in lifetime medical costs, much of which will be paid for by state and federal programs.

For every $1 spent on HIV prevention, $7 are saved in future medical costs. It is imperative from both a fiscal and humanitarian standpoint that we take immediate action.

Increased funding alone is not going to solve this problem. Rather, we need to support new and innovative ideas, critically reevaluate our current prevention activities, support culturally competent partner services staff and meet youths where they are. That’s something that the governmental leadership in the HIV community has refused to do.

It’s time to talk prevention in the 21st century. It’s time to stop playing politics on the backs of our youth. And it’s time for new leadership.

CURT PRINS AND JOHN SCHROM

Prins is executive director of District 202, a Minneapolis-based organization for gay, lesbian, bisexual and transgender youths. Schrom is a member of the Minnesota HIV Services Planning Council.

In response to this spike in incidence, the Department of Health, Department of Human Services (Ryan White Part B Grantee), and Hennepin County (Ryan White Part A Grantee) brought together a group to start raising awareness around this issue and start thinking about new solutions. This group, which I am a part of, has been meeting since November in preparation for a series of events happening at the end of February (not coincidentally the end of Part A’s fiscal year). This includes YMSM focus groups, a provider summit (open to all youth workers), and a youth PSA contest.

Obviously, this increase has been all over the blogs and newspapers in the past weeks. The response from many providers has been: youth like risky behavior, the interwebs gives you AIDS, and USE CONDOMS DAMMIT. Maybe I’m being a little overdramatic.

My point is that I don’t think this is a productive conversation. Adolescents are risky, but not necessarily intentionally so. I doubt any 17 year old is thinking, “if I have sex tonight, I might get HIV … that’s so risky.” No, they’re thinking, “Gee golly, that’s a really hot person that I’d like to touch inappropriately.” The internet doesn’t promote unsafe sex, it provides a medium for people to pursue something they’re pursuing anyway. This goes both ways — there are dating-oriented websites that connect people who may not have otherwise met.

And then there’s condoms. Yes, they’re effective, but they’re only effective if they’re being consistently used. The problem is that it’s really hard to tell a teenager that they need to use condoms for the rest of their life. We can put millions of dollars into education and advertising, but it doesn’t make it any easier to carry out.

I don’t have the solution, but I know we have a problem. We can’t blame the internet for this increase, we can’t blame the youth, and we can’t expect condoms to continue to be the solution. We, as a society, need to figure out a reasonable, life-long prevention plan for not just gay/bi men, but for everyone. I really wish I had a magical answer for this one…