Interview, Kristine Gebbie, Outgoing Policy Coordinator

[On July 19 AIDS TREATMENT NEWS interviewed National AIDS
Policy Coordinator Kristine M. Gebbie, who announced her
resignation on July 8, effective August 2. See also our
commentary and call for action, below; it was written before
we conducted this interview.]

ATN: How can our readers participate in the ongoing efforts
to improve the national response to the epidemic?

Gebbie: It is very important for anyone struggling with this
disease, either living with the virus and struggling for
their own health, or a family member, or a caregiver, to
appreciate that the first thing is to care for yourself, you
can't let concern about broader issues detract too much from
the appropriate time spent on your own self worth -- such as
exercise, or rest, or doctors' appointments.

But what is going on at the state level and the national
level has a huge impact, and I appreciate the energy that so
many people have put into following the process by which we
move this epidemic. Stay tuned in to the process, but through
more than one source; this is a complex issue, any one source
is looking at it through a specific lens, so it is useful to
read more than one newsletter, or join more than one
organization, so you get a couple of different views.

And stay in touch with those organizations, whether through
writing letters to the editors of their newsletters, or
writing letters to their board of directors. Often a handful
of people get to the meetings and are the ones who speak.
There are many other people who are interested but whose word
does not get heard; corresponding with your organizations is
a way to be heard even if you cannot get to meetings. That's
particularly true for national groups, based somewhere like
Washington D.C., supposedly representing the whole country;
they need to hear from individuals living with or worrying
about this disease, out around the country, on a regular
basis.

Last year, as I traveled around the country, many people said
they hoped I was not just listening to people in D.C., who
may not speak for them. I tried to listen to groups from all
over, and present some of that balanced concern in what I did
on my job.

The organizations often suggest that we write to our members
of Congress, and we dutifully sit down and write, and that's
very good, because we are keeping our representatives
informed; I would not want to detract from that. But we also
need to write back to the organization, telling them I did
write to Congress on this issue, but here's another issue
that I'm concerned about, or, here's a different viewpoint.

ATN: How can we improve the Federal response that obviously
needs much improvement, when the turf is already spoken for?
NIH has its way of doing things, CDC has its way, FDA has its
way, etc.

Gebbie: They're all being pulled into new ways, and we have
to be persistent in that process. I worked previously with
Admiral Jim Watkins, who worked on AIDS and then was
secretary of energy. He talked as an admiral about how long
it takes to turn a battleship around; you don't do it on a
dime. You have to look a long way ahead when you're going to
want to turn it. We're trying to turn around a whole Federal
bureaucracy, and it just won't happen on a dime. I couldn't
make it happen, and I doubt my successor will make it happen
instantly; but we've planted the seeds for that.

The Drug Development Task Force, for example, which just had
its second two-day meeting this week, has outlined a number
of things that are underway or need to get started. We need
to be persistent in supporting them in making those changes.

There's a thorough review of prevention and planning across
the HHS (U.S. Department of Health and Human Services) on how
to support prevention activities better, in conjunction with
the community planning for prevention. We've got to follow
that process as they go through that change.

For your readers, the place to start [for prevention work] is
with their state AIDS prevention planning process. Every
state has had to name a committee to do prevention planning
for that state. San Francisco, Los Angeles, and the other
high-epidemic cities also have local planning committees.
People need to tune into this process, ask to be on the
mailing list of the state planning committee, and be
critical; if they think it's not working well, let the CDC
know, so that they can work on it.

Another area that will benefit if more of your readers become
active is around Ryan White. There's an active coalition
working across all four titles of that program to work
towards reauthorization. Becoming interested in any of the
groups lobbying on Ryan White would be very helpful.

Supporting the changes across the Federal government means
backing the groups that are asking hard questions that are
also working on them. For example, through AIDS Action
Council and the AIDS Housing Coalition we now have some
meetings started with Secretary of Housing and Urban
Development Henry Cisneros. It's going to take a while for
that to sink down through HUD, but we're starting at the top,
where we should start, and are going to push that. So your
readers who are particularly interested in housing should be
in touch with the AIDS Housing Coalition. [To reach the AIDS
Housing Coalition, call Tim Palmer at 617/432-0885, or
MaryAlice Mowry at 608/238-6276.]

ATN: How should the AIDS coordinator's job be defined?

Gebbie: It almost doesn't matter how it is defined, as long
as it is defined. I walked into a very undefined job; and by
pushing my elbows out and poking around, and giving it a try,
we found out where the confusion is and where some of the
conflicting expectations are. So for the next person, be
clear.

For example, many in the advocacy community really expected
this job to do a lot more advocacy in Congress than what I
ended up doing. If that's an expectation, and if the
president agrees with that expectation, then write it down.
If the president disagrees with that expectation, then be
clear about that, so that the advocacy community isn't
saying, "Why aren't you doing it?" It's that kind of
clarification that's needed.

Other staff officers at the White House also need to know
what that expectation is and be prepared to collaborate.
That's one of the areas I have talked with Leon Panetta
about, as he is moving into his new responsibilities of Chief
of Staff. He has an opportunity to redefine some of those
things and move it along, and I'm hopeful that he will be an
active partner with my successor in making it work.

ATN: What do you see as the role of a national plan?

Gebbie: I felt when I arrived here that it was more important
to start doing things than to sit down and write for a long
time. So I operated off of some of the documents that already
existed. But many people do need to be able to look somewhere
and say, that's what we agreed on, what we're trying to do,
let's get on with it. My concern is that we don't spend so
much time making it fancy, that it dies under the weight of
its own process.

My first try (at drafting a national plan) didn't work well,
got a lot of criticism; but from that we've learned what some
of the soft spots and potentially good approaches are, and
I'm leaving a lot of notes for my successor on how to move
that along more quickly.

ATN: From 2500 miles away from Washington, one thing I see is
that the AIDS community has not operated as a mass movement,
has not been able to get thousands of letters and phone calls
to Congress on AIDS issues, while our opponents have. That
may be why Clinton was politically unable to provide the
support that your office should have had. How do you see
this?

Gebbie: The question of the president's support for my office
is tied up with expectations, and all the things that demand
a president's time, which are hard for some of us to
understand when we have just one issue to worry about. But I
do agree that the lack of cohesion in the HIV community, and
the sometimes lack of coordination on urgent issues, means
that a very organized conservative group can almost always
get more letters in more quickly than we collectively can.
That does have an influence on Congress. I've spent a lot of
time answering letters from some very organized folks upset
about things I've said, or things that have gone out in the
community, and it's very clear that those who do not want to
talk about HIV infection, and those that do not want to talk
about sexuality in an open way, are prepared to launch
instant campaigns at the drop of the hat, and to coordinate
with each other across the country very effectively. That
does not seem to happen as much from those who support an
active approach to this epidemic.

ATN: Anything you would like to add?

Gebbie: One of the impressive parts of this epidemic has been
the number of newsletters and publications such as AIDS
TREATMENT NEWS which have tried to get information out to
people; that's been a positive force. We do need to learn to
check our sources, and make sure that what is disseminated is
well documented, so that we add positively to our cumulative
knowledge, rather than sending people chasing off after will-
o'-the-wisps. That's one of my reasons for the point about
trying to subscribe to more than one source, so that you can
do your own cross-checking a bit.