Community Engagement on HIV Policy: Are Town Halls Meaningful Enough?


This article is part of a
special series this week focusing on HIV and AIDS in the United States.  RH Reality Check is partnering with CHAMP, the AIDS Foundation of Chicago, the HIV Prevention Justice Alliance, and organizations such as the Center for HIV Law and Policy to highlight issues on domestic HIV and AIDS policy while several thousand people attend the National HIV Prevention Conference in Atlanta, Georgia. 

One of the highlighted events during the national AIDS prevention
conference in Atlanta this week is the town hall meeting scheduled for this
evening, Tuesday, from 6:30 to 8:00 p.m. Jeff Crowley, Director of the White
House Office of National AIDS Policy (ONAP), will hear from conference
attendees and others on their views of the development of the National HIV/AIDS
Strategy (NHAS).  This and a dozen
other town hall meetings scheduled all across the country have been planned to
“engage the public in meaningful ways,” as the White House website puts it, in the
development of a long-overdue national strategy to address the U.S. domestic HIV
epidemic.  ONAP also plans to get
input from a soon-to-be-reconstituted President’s Advisory Council on HIV/AIDS
(PACHA), and from input posted on a new page for that purpose appearing on www.whitehouse.gov. 

Efforts are underway to help people make their comments at these town
hall meetings as useful as possible. 
Starting with the Atlanta town hall, advocates in 13 different locations
will have about 90 minutes (assuming things start and end on time, and minus
introductions and wrap-up) to tell Crowley their views.  This is a start towards making a
reality out of manifestos such as the Denver Principles, which call for
inclusion of people with HIV in every level of decision-making in the policies
and organizations affecting their lives. 
But is this step enough?  Is
this opportunity for input sufficiently meaningful?

There is a fundamental difference between real participation in the
process of creating a National HIV/AIDS Strategy, and offering input through
forums where community stakeholders lack access to actual drafts of a plan or are
limited to reacting to a strategy crafted without their direct
involvement.  Those who’ve worked
on legislation or tried to provide input on pending regulations know that it is
far more difficult to have any influence from outside the process than it is
when you are inside.  Comments
submitted on draft regulations, for example, rarely will secure significant
changes once the administering agency has committed itself to a version of
those regulations, particularly if that agency has a policy agenda at odds with
community preferences.  In
contrast, a call for inclusion of community representatives in the recent CDC
consultation to develop new guidelines for HIV testing in non-clinical settings
resulted in sufficient inclusion to produce subcommittee recommendations reflecting
an understanding by community reps’ on-the-ground of the policies needed to
address the populations they serve. It is far more difficult to ignore or
marginalize the views of stakeholders when they are at the table and part of
the plan development from the start.

In response to demands for something more than town halls, a website,
and PACHA as a way to weigh in on a national AIDS strategy, ONAP offered some
reasons why more direct involvement in the task force Crowley will chair
couldn’t include consumers.  One
was that inclusion of consumers in meetings with government task force members
would dilute the latters’ investment in the strategy itself, and inhibit free
discussion.  Another was that
federal law – the Federal Advisory Committee Act (FACA), to be specific –
restricts community participation.

As for fears of an inhibited and divested interagency task force, members
of that task force need to understand from the get-go that community involvement
and investment in the plan and its implementation is at least as vital. People
with HIV and their advocates are and should be treated as a powerful, valuable
resource in this process.  If a
government agency representative is inclined to think that agencies know best
and that the views of people with HIV are not relevant to a plan to prevent its
further transmission, I think it’s in our job to make sure that person does
feel inhibited.

As for the FACA, that dog just won’t hunt.  FACA was created to ensure transparency of the many existing
advisory committees, councils, boards and similar groups that advise member of
the executive branch, not to prohibit them.  FACA requires that membership on advisory committees be
balanced, and has certain procedural requirements for the creation and conduct
of these committees, but none of these requirements are particularly burdensome
(PACHA is an example of such an advisory committee).  But FACA doesn’t even apply to consumer subcommittees that don’t
report directly to the President or government officials but instead develop
info, statistics, reports and even recommendations for government task forces
or advisory committees.  

A NHAS process that involves a task force made up of multiple agencies
needs the participation of people with HIV and their advocates who are familiar
with the work of each of these agencies and who can be prepared to hold them
accountable in their contributions and commitments to a national plan.  A more democratic process, with sufficient
community representatives to address needs that relate to each participating
agency’s mandate, will produce not only a substantively better strategy, but
one far more likely to secure wide community understanding and support. 

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  • carlos-cordero

    great idea to include the voices of users in this debate. problem is getting it to effect changes in policy. if we start from a premise that access to health care is a human right, then instead of discussing whether we should, we will be discussing how to.
    as far as a national plan on hiv aids, in my opinion it is national because it includes nationals, but when you look at the people dealing with hiv infection it is a fraction of the population and then it falls squarely on mainly two sets of risk groups.

    i like phill wilson’s one million campaign. testing is the key out of sero-ignorance, exclusion and delusion over hiv. if testing is addressed at a national level where people must opt out rather than opt in for testing, we will make headways into keeping a check on hiv and treat it accordingly.

    testing in 1989 was frought with uncertainty on the results, confidentiality and prognosis.
    testing in 2009 is all abput living with the virus, not infecting others and leading as normal life as possible. i would increase phill’s number from 1 million to 300 million and test all, find out how big the problem is, who has it and treat it accordingly. and then we can move to the next issue.

  • crowepps

    In response to demands for something more than town halls, a website, and PACHA as a way to weigh in on a national AIDS strategy, ONAP offered some reasons why more direct involvement in the task force Crowley will chair couldn’t include consumers. One was that inclusion of consumers in meetings with government task force members would dilute the latters’ investment in the strategy itself, and inhibit free discussion. Another was that federal law – the Federal Advisory Committee Act (FACA), to be specific – restricts community participation.

    I don’t see much use in a townhall if the meme is that the bureaucrats need to be free to set up something that meets the needs of the AGENCIES instead of the people who actually have HIV/AIDS and government task force members aren’t going to speak frankly or ‘invest’ in the strategy if confronted by actual facts on the ground as presented by the people their decisions are going to affecting.

  • hivinsf

    "testing is the key out of sero-ignorance, exclusion and delusion over hiv. if testing is addressed at a national level where people must opt out rather than opt in for testing, we will make headways into keeping a check on hiv and treat it accordingly."

     

    These forums are simply to provide political cover for the CDC’s agenda of conducting mass testing without an explicit consent or any meaningful follow-up for patients testing positive. Patients will be told in busy emergency rooms that they have HIV and left to understand for themselves how to get follow-up, tell others, or to avoid having their health insurer or employer find out. Nor will they likely understand that many states will now criminalize their sex life.

     

    Testing positive for HIV can and does leave people unemployed and unemployable. When I was diagnosed with HIV (and later AIDS) while attending college in 1993, I lost my job, was barred from the three classes I needed to finish my biochemistry degree, and lost my graduate fellowship. In the interest of "protecting others," they then notified and offered free testing to my classmates, co-workers, and parents, with whom I had not spoken since they threw me out as a teenager for being gay. I wound up on SSI, awarded by workers who double gloved before handling my paperwork.

     

    People should be given a meaningful choice of whether to be tested for HIV. (Consent obtained by placing an opt-out notice in paragraph 27(a)(2) of a hospital’s standard consent for treatment is not meaningful.) It is, after all, the person being tested who will be stuck dealing with the aftermath.

  • waheedah-shabazz

    First, I want to thank the ONAP for their efforts in trying to develop a process that allows the inclusion of community opinion and input. However, I feel the attempt by ONAP to include communities into the crafting of a NAS and HRC be non- productive, frugal and parsimonious, at best.The reason I feel this way is b/c the time restraints for the over all Town Meetings do not allow the opportunity for everyone who came out to be heard…….to , actually have a chance to speak.Everyone who came to participate must be provided with time to be heard.Don’t get me wrong. I do agree that persons should limit their comments to a couple of minutes. However, if a Public hearing were to be held , that would serve as a mechanism by which the meeting could CONTINUE….until everyone who came out to be heard was, in fact heard. Even if it takes ALL NIGHT!!In order to receive input from communities, the organizers of the town meeting or public hearing should ensure the event has been set up with the maximum time to hear from the public….which they claim is the goal of the gathering.