This article is part of a
special series this week focusing on HIV and AIDS in the United States. Rewire 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.
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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
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.