30 Years of HIV Prevention: A Historic CDC Perspective

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>> Okay. We are complete. And we're going to get started now.
So good afternoon again everyone. I'm Kevin Fenton, the current
director -- I need to say that in the presence of this very august
group of panelists, the current director for the HIV STD and TB
prevention it's my great pleasure to welcome you here this
afternoon to reflect on 30 years of CDC leadership on HIV AIDS.
You know one of the core themes of this conference this year is
not only reflecting on the national HIV/AIDS strategy but as I
said in my opening talk yesterday to really think about this
conference as a pivotal time to think about where we've come from
over the past 30 years and where we're going, where we're heading,
certainly for the next 30 years with the response to HIV both here
in the United States and globally.
As you heard from many of our speakers yesterday, CDC has really
been at the forefront of both the identification and the
classification and the response to the prevention response to
HIV/AIDS here in the United States and clearly we have as an
organization contributed to the global response to HIV/AIDS as
well. But part of this has been because of you. Your leadership
in the community, your leadership as advocates, your leadership as
prevention partners, which have been a very consistent part of the
journey that we have had to travel at CDC as well.
So many of the accomplishments that we've been discussing over the
past two days reflect the joint partnership between ourselves as
an agency and leaders within this agency and you as a community of
people interested in, affected by or living with HIV/AIDS.
So the purpose of today's panel is to take a step back, to begin
to think about who are some of the key leaders who have been some
of the key leaders over this 30-year period in the fight against
HIV/AIDS in the United States.
To introduce these leaders at a time when we are reflecting on the
past 30 years, to hear from them firsthand about some of their own
experiences regarding leadership on HIV/AIDS, to unpack what
lessons can be learned from the first 30 years from a leadership
perspective that can help us to enhance, strengthen or deepen our
prevention response as we move forward.
The leaders that we have gathered here today bring a diversity of
perspectives, at diverse periods over the 30 years in the response
And I can't think of any better group of leaders to really help us
to reflect on key lessons but also key opportunities moving
forward. So the structure of the time that we have together will
be as follows: I'm not going to do any formal reading of
biographies or introducing colleagues. They'll be introducing themselves.
We will begin by asking each panel member to both introduce
themselves, provide a brief summary of their key leadership role
at CDC, in the past or present, what they're actually doing now,
and to ask them to reflect on one momentous occasion looking back
on their tenureship at CDC, what are the key momentous occasions
for them that they would like to begin their discussions on this afternoon.
When we've heard from all the panel members and you've heard the
diversity of both experiences as well as the key memories for the
30 years, I have a list of prepared questions. But I know that
this group is very, very vocal, and I know that you'll also have
your questions as well. I'll be inviting questions from the
audience to be posed to the panel. We'll share the questions both
from the audience and from myself in a very interactive fashion.
Without any further ado, I'll ask our panelists to introduce
themselves. I'll start with the person closest to the podium.
We'll start with Dr. Harold Jaffee.
>> Thank you. I started working on AIDS in 1981 with Jim Curran.
If any of you were at the last session on The Band Played On, you
know what we did for the first couple of years and then continued
on in a number of roles in the program which expanded very
considerably in a relatively short period of time. I left CDC in
2004 having been the Director of National Center for HIV STD and
TB Prevention and spent six years at the University of Oxford and
came back about a year ago to be Associate Director for Science at CDC.
So I don't have a direct role in AIDS right now, but obviously try
to follow it and stay involved as much as I can.
We can talk about anything we want?
>> Anything you want.
>> Well, I won't talk about anything from the first two years,
because that was the subject of the last hour and a half. I think
the most sort of difficult, interesting thing that I was ever
involved in was the Florida dental investigation. I did a
sabbatical in a laboratory in London from 1989 to 1990, and I came
back July 1st, 1990, and on my desk was a draft MMWR that
described a young woman in Florida who had developed AIDS and her
only known risk factor was having received care from a dentist who
had subsequently died.
And Jim Curran was going on vacation, but there was a note on it
that said: What do you think about this? And I am unable to
repeat what I said, because it would be bleeped. But I thought,
oh, no, this is terrible.
The first challenge that we faced was: Should we say something
about it? Or do we need to do more investigating? And we went
sort of back and forth, and finally decided, well, we need to do
both. We need to be investigating, but we can't just sit on it.
We put out the first report and immediately got criticized for
jumping the gun. I don't know if that's Jim's memory of it or
not. This is premature; how do you know you're right; you're
suggesting a new transmission route from healthcare worker to
patient. And tremendous denial.
Carol Ciesielski my colleague and several other people from CDC,
including a contingent from our laboratory, continued on with this
work with a lot of help from the Florida State Health Department.
We ultimately identified a total of six patients who we believed
had been infected by this dentist. A lot of the evidence was from
the laboratory; that is, they had a strain of the virus that was
virtually identical to the dentist's virus and different from a
number of other people living in the same community that we
considered control patients.
So we thought: We don't know how it happened, but it did happen.
And what are we going to do about it. I think very naively I
thought, well, I'm a doctor and these people are professionals,
they're dentists and doctors and surgeons and OB/GYNs, and they'll
understand that the primary issue here is protecting patients.
And I was wrong, because the primary issue for them became:
You're saying to us we can't practice if we're infected, that
means we don't have a livelihood, or you're telling us: I trained
to be a surgeon, now you better be a radiologist or a pathologist.
So instead of getting cooperation from the medical establishment,
,we got a huge amount of flack. And it was extremely contentious
up until the very end.
I think a lot of it was based on because we never figured out how
it happened, that it couldn't have happened. And our view was we
couldn't figure out how it happened, but it did happen, which I
still believe.
Ultimately, we were able to develop a set of guidelines which I'm
not sure satisfied anybody, but basically said that it was the
professional responsibility for surgeons and dentists to know if
they were HIV infected. If they were, and they performed a
certain subset of procedures, ones that would be the most likely
to expose a patient to their blood, then they should not be doing
those procedures unless they've been approved by essentially a
group of peers operating at the level of their hospital or their
health department.
Many people were unhappy with that. They felt that it was a
compromise that didn't suit their needs. But it's still the
recommendation. It actually hasn't changed since 1995 or so when
we issued it.
So, again, it was fascinating in a certain way, and it
demonstrated the power of our laboratory to be able to link
together infections in a way that we could never do before. But
it was a very sort of sobering and disturbing example of how
people's self-interest sometimes becomes their main interest.
>> Thank you. And just to -- so the audience is aware about
where you were in the organization. You were my immediate
predecessor as Director of the National Center, but you held other
leadership roles as well.
>> Right. This is when I was the -- I guess I was director of
the AIDS Division then.
>> Great. Jim.
>> I worked with, as you saw in the last session, I worked with
Harold for the first 15 years until 1995. And I guess when I left
CDC, I was Associate Director of CDC for HIV before they had a
reorganization. And I think I followed Gary Noble in that job, maybe.
And then since then I've been the Dean of Ronald School of Public
Health at Emory and Director of Emory Center for AIDS Research. I
remain engaged in AIDS. And I've been thinking that Harold and I
were involved in a lot of issues. And a lot of times the issues
don't seem quite as intense or passionate in retrospect. Maybe
even to us. But, I mean, the amount of anger in orthopedic
surgeons and dentists and a lot of people about this case was
incredible. And Congress -- Tom Coburn cut his teeth on this.
And he got interested in this in Congress and showed that he could
be Tom Coburn. Hi Tom.
So I guess what I think of, though, is there are a lot of things
that people may criticize us for, and you may hear about, you may
do that when you get to the Q&A, but I think the biggest things
that I'm concerned about from a CDC point of view that maybe we
could have had more impact on, one was early in the epidemic and
one was mid-range, I think, which continues. The early one was we
didn't take enough ownership and deal with the epidemic and
injecting drug users.
I think the federal government is a territorial place, and that
was SAMHSA's job and NIDA's job, and even though we communicated
with them that was their job. And injecting drug use was at the
very roots of the heterosexual and black and Puerto Rican epidemic
in the United States.
And I think somehow think that CDC somehow could have been more
influential. Now, this was the Reagan administration. There were
a lot of other stuff going on. But the drug abuse epidemic was
horribly neglected and mishandled for the first 15 years in the
United States.
And I just somehow think that if we could have done a better job
with that, we could have been more effective in the heterosexual
epidemic and in the epidemic in women and children, and that we
should have been screaming from the rooftops and ignoring our
jurisdictional barriers.
The other thing that I neglect, and I continue to neglect on
behalf of John Owen, Kevin, today, is just as I was leaving -- and
all of the time we were doing testing -- we've always known that
people with HIV infection are uninsured. And they've been
uninsured from day one. And treatment is very expensive and
needed. And the Ryan White Care Act in 1990, I guess,
acknowledged that. But I wish that when I was at CDC I would have
taken more of the bull by the horns, particularly when Clinton was
president and everybody was rich and they were talking about
healthcare reform, to really link testing and prevention and care
more closely together.
I mean, it remains a horrible sin that someone can't be tested for
HIV, particularly if they're at risk and can't be guaranteed
access to life-saving care which we've kind of always known had a
very big prevention benefit. Back from the Florence AIDS
Conference when the partners and people with AZT had less likely
transmission AIDS than the people who weren't on AZT. My regret
is we didn't deal with CMS and HRSA much more directly and arrange
for uniform Medicaid waivers in every state in the Union and
didn't take much more of a link between prevention and care at a
time when the country had some money.
>> All right. Thank you, Jim.
Kevin. Dr. Kevin De Cock.
>> Thank you, Kevin. Do stop me if I do go on for too long.
When that MMWR in 1981 came out, I was working in Africa. And
most of my involvement at CDC has been international.
And I remember pretty much where I was sitting in the Library of
the University of Nairobi in late '81, early '82, when I read an
article in the Lancit about what was subsequently called AIDS.
I first came to work in this country in 1983, in Los Angeles, to
actually work in liver disease and with a special interest in
viral hepatitis. But by then I was already more interested in
AIDS. And, of course, the patient population, hepatitis patients
in LA had a strong overlap with HIV.
And in fact there was an epidemic going on in LA that we were
heavily involved with of hepatitis delta virus, HDV superimposed
itself on hepatitis B. And we had a huge serum bank and were able
to do a number of seroepidemiologic studies which were extremely
illuminating once the HIV test became available. I didn't really
know what CDC was in those days. Well, I did -- and I never
thought I'd go there until I met Jim Maynard, who was the head of
the hepatitis branch. And I remember him meeting, meeting with
him in '83, late '83, and talking about AIDS and asking what he
thought it was and he said he thought it was a disease from
Africa. And that stuck in my mind, because somebody wrote a paper
on that which made that argument; it wasn't completely right, but
it was partially right.
When I came to CDC in '86, I started working -- I thought I was
coming to do hepatitis work but they didn't have a job for me.
Ended up working in hemorrhagic fevers, the group that did a lot
of work in Africa and also the group under Jim's collaboration and
leadership had sort of made the forays into AIDS in Africa.
Jim and John McCormick, my supervisor, had arranged for the
setting up of a very successful research site in Kinshasa in the
Democratic Republic of Congo headed by the late Jonathan Mann.
And I was just fascinated by all of that.
And as an EIS officer worked on HIV in Africa and also in West
Africa and persuaded Jim to support the establishment of a second
research site to look at the second HIV virus, HIV 2, which we
really didn't know much about, which we didn't test for, which
theoretically could have been a public health problem for this
country, including for the blood supply.
So Jim and Harold really were my mentors at that time, and it's
just been an extraordinary privilege to work over time with them.
I always remember, our research site in Abidjan. The work went
well. I was succeeded by Allen Greenberg, another well-known
epidemiologist from CDC. But I always remember the first site
visit we ever had, when we had a delegation from CDC that was
bigger than the number of people working in our project. And
Harold, I remember Harold sitting there in his characteristic way
sort of shaking his head saying: If we can't diagnose and
distinguish HIV 1 from HIV 2, which was a real laboratory
challenge at that time, we might as well all go home. It was a
great encouragement.
And Jim, at that site visit, sort of sternly saying when are you
going to start your first cohort story. I remember that very well.
Anyway, just to fast forward, I actually started doing some
domestic work from '97 to end of '99 with David on my right. When
I was the Director of the Division of HIV/AIDS Prevention,
Surveillance and Epidemiology.
And I guess there's five things that stick in my mind, big issues
we could come back to. The very difficult discussions about HIV
surveillance and going from AIDS case reporting to named HIV
reporting. I mean, a wonderful experience and great community
dialogue, but difficult politically as well.
The contention around the research trials and the placebo
controlled trials on mother/child transmission prevention that
were going on in Africa and Asia. The death of Jonathan Mann in a
plane crash in 1988. The whole debate about HIV testing,
particularly in clinical settings, which is an issue I've been
quite involved with over the years.
And then the whole issue of viral load testing, which was being
much more used now, and the effect of ART on that and the
discussions which actually we had a decade ago about the use of
therapy as a potential prevention modality.
And then after that I went back to international work, and I'll
stop there.
>> Great. Thank you, Kevin. Dr. David Holtgrave.
>> Thank you very much, Dr. Fenton. This reminds me being on
this panel of the Saturday Night Live skit of Wayne's World, you
see Wayne and Garth say: I'm not worthy, I'm not worthy. That's
exactly how I feel. But, nevertheless, a great honor to be on
this panel.
And just in terms of working at CDC, I started in 1991 where it
was a great privilege to be hired by Dr. Ron Valdiserri, who is
here, to work on program evaluation and cost-effectiveness issues
for the national program on HIV.
And after a couple of years in Ron's office and getting a chance
to work with Ron and Gary West and others, got to go over to Jim
Curran's office. And one of the first things we did was there
weren't any review papers or systematic reviews at that point.
And what do we know about prevention intervention, what do we know
about the evidence. So that was one of the things we tried to
pull together for the first time.
And then from '95 to '97 -- I should say, too, at that time,
working in Jim's office, this was the time when HIV prevention
community planning started in the U.S.
And I remember the meeting actually in Jim's office where that
gave rise to the start of community planning. And that was a
major point for us. And earlier Jim mentioned at the previous
session about the role of behavioral science.
And I actually think that the role of behavioral science and
community planning was really an important time as well, too.
And then from '95 to '97 I went to Jim Kelly's center in the
medical college of Wisconsin and came back pretty quickly in '97
when Helene Gale asked me to direct the other half of the division
of HIV/AIDS Prevention Intervention Research and Support.
So it was great to work closely with Kevin over those years. And
I was there until 2001, and then went to work at Emory with Jim in
the Center for AIDS Research at the Public Health School, and then
in 2005 went to Johns Hopkins to chair a new department called
Health Behavior in Society.
The part I wanted to go back and highlight was during the time
of '97 to 2001, it was when the Minority AIDS Initiative first
started. I want to call it out because I think it's a important
example of how different partners play different roles in the
epidemic. In March of 1998, we knew what some -- at that point it
was more AIDS case information, but what the health disparities
looked like in terms of race ethnicity, especially with regard to
African-American and Latino communities.
But the African-American disparity was just incredible. So we
asked 33 leaders from African-American communities and faith
communities to come to Atlanta and hear the presentation that we
had to offer.
And we knew what we could do, which was to provide technical
information, and talk about the programs that we were offering,
but we were also not allowed to go directly to Congress. And it
was an example of what I call the dance of people inside of
government and outside of government sort of working closely
together working hand in hand. And Dr. Benny Primm was one of the
33 people who were there.
Immediately went the next morning, actually, to see Representative
Stokes and the Appropriations Committee was meeting, and that
began the discussions around the beginning of the Minority AIDS Initiative.
And a lot of partners were involved. There was the Congressional
Black Caucus, the staff members from Congressional Black Caucus,
it was a time during President Clinton's Administration. And
Sandy Thurman is here, head of President Clinton's Office of
National AIDS Policy, ONAP, was heavily involved. And also the
Department of Health and Human Services and a wide variety of
partners, including the 33 people who came at that March meeting,
there was a group called the Palm Sunday Group. Some of you may
remember the Palm Sunday Group, also known as the insurgents, was
the label they used as well.
And were making sure that we talked constantly, we talked almost
weekly about what progress we were making and whether any money
could become available. And first there was a call to make this a
public health emergency, and it turned out that everybody used
public health emergency except officially in the federal
government a public health emergency meant like an Ebola outbreak
or something like that. So we couldn't use that term. The term
that was used was a severe and persistent crisis of ongoing public
health attention. Which, of course, if you look it up in the
dictionary it means public health emergency, of course.
But that was the term that had to officially be used. And that
next fiscal year, about $166 million was made available. And
there was about 50 million that was in the Secretary's emergency
fund. And I wanted to mention the Secretary's emergency fund,
because we could see at that point the beginning of a tremendous
epidemic among black gay men in the U.S. And so we were allowed
to write proposals for money out of that emergency fund. So we
asked and I think got about nine or $10 million for the first
dedicated CBO program for black gay men in the U.S., which I
thought was incredibly important. Also the state health
departments played an important role. One of the things we
focused on at that time and health department representatives or
[inaudible] will remember our discussions about the budget tables.
How was money spent by race, ethnicity and risk. And within two
fiscal years you could actually see a lot of money move to really
very much mirror the epidemic burden in the U.S. and actually
could see some progress being made. Of course, never enough
progress, but you could see definitely a movement. And I think
that was through the health department's hard work of trying to
see that that money was moved.
And then also at that time we tried to make sure that the directly
funded CBO program was moved around so it much more reflected the
disparities that we were seeing as well.
And I think that the only other recollection I want to make from
that time, and Sandy will remember this, in her office, Office of
National AIDS Policy, there were panels from the Memorial Quilt.
And one of the panels, which I never forget, had someone's ashes
in it. And what was written stitched there was: Leave me here
until there's a cure. And often I think about that panel in
knowing that there's someone in limbo, someone there whose ashes
are still in the quilt, whether that's now in the warehouse
somewhere in Atlanta, and not until there's a cure can we release
the ashes from that person who is in the quilt in your office.
I'll end there.
>> Jonathan.
>> Not only am I the most recent person in this position, but I
think I've also been in the shortest period of time, so I'll be
proportionately brief. The first is a question of kind of looking
back at what have you done that you think might have been a moment
worth discussing. I think it's impossible to know that at the
time, because there's almost weekly events of conflict and
opportunity when you're in this position.
But I think one of the major efforts that probably we'll learn
soon whether it's a good or bad effort is the integration of
prevention and care.
The whole idea of seeing them as mutually supportive. And that
has been a major issue for the division while I've been there and
we'll see in the next few years whether that's been productive.
But I did want to ask you -- a lot of the leaders here at the
table have raised the question of looking back, what are the
things you might have done differently.
And I think that honest reflection is a wonderful thing to do, and
I try to do it as frequently as possible to both chastise myself
and learn from the experience. But sometimes our passion in the
past has overcome careful thought. And sometimes political
perspectives have overcome best judgment. And that's actually
been problematic, that unwillingness to listen and work together I
think has sometimes really harmed people with HIV and even our
efforts. And I looked back, it must have been the early -- late
1990s, I remember reading in the New England Journal of Medicine
an article written by the then Director of the Division of
HIV/AIDS Prevention, he was a staff member at that time. But he's
no longer in the division. But he had written this argument
saying that people -- that hospitals that have inpatients with
1 percent or more diagnosis of AIDS should all have routine HIV
testing. I remember writing a pretty scathing letter saying this
isn't accurate, it's not going to work, and deeply concerned about
the human rights of people with HIV. And then I found myself five
years later moving for a ten-year stint in Uganda and Kenya
running CDC programs on HIV where I was spending a lot of my time
working with local government and hospitals implementing routine
HIV testing and I can actually count, literally, the tens of
thousands of people who are alive because that was happening.
I've looked back, and with discomfort in my kind of knee-jerk
reaction, my sense that I was unwilling to really look at how
things were changing and also understand that I came from a good
place. I really did. But I do think that I was wrong.
>> Dr. Noble. Dr. Gary Noble.
>> I started at CDC as an EIS officer in '65 and did a study
among Eskimo children out on the Western Tundra of Alaska. I was
given an opportunity to spend a year at Oxford University in '80,
'81, and I remember where I was sitting when I read the first MMWR
reports. And met Walt Duddle, one of the great leaders of CDC, at
the International Congress of Biology in Brussels in September,
and he said I think this is going to be a big problem.
And that turned out to be a prophetic understatement. Returning
to the CDC that fall, I encountered the amazing team that Jim and
Harold led, working almost nonstop around the clock. I was put in
charge of the biology laboratory and flew off to New York and San
Francisco with my laboratory colleagues to collect blood samples
in an attempt to identify an infectious agent.
Obviously NIH and Pasteur Institute beat us to that, but that's
not important. Walt decided in the fall, late '83, that there
should be an International Conference on AIDS and asked if I would
chair it. I said no. The next morning I called him back and
said, yes, I would. But Bob [Inaudible] and I can share the
challenges of chairing the program committee for a major
international conference. It was a far cry from today's AIDS
conferences but it set in motion those international AIDS conferences.
Secretary Heckler was one of the opening speakers, and at the
press conference, after her speech, she was asked when there would
be a vaccine and with Bob Gallo standing at her side she said: In
two years. We do hope that holy grail soon appears.
I was then asked to serve in Washington under the Assistant
Secretary for Health Office since he was a cardiologist and wasn't
terribly up on infectious diseases. That was an interesting year.
It was the Reagan Administration, and Gary Bauer, whose name was
mentioned in the prior conference session, was the AIDS spokesman.
Sharing a platform with Gary Bauer was not a comfortable experience.
Being on Larry King Live with a young gay activist was also a
little uncomfortable, although I totally sympathize with his
views, but representing the Reagan Administration, I didn't
necessarily voice all my views immediately.
In terms of regrets, I suppose that might be one, could have been
a little bit more outspoken.
And at a meeting of the White House Domestic Policy Council
chaired by Mr. Reagan, Secretary Otis Bowen asked me to attend
since on the agenda were going to be two items of discussion, knew
would be of interest. One was should people with HIV be allowed
to enter U.S. to enter conferences, et cetera. There wasn't a
discussion. The Chief of Staff dismissed it simply saying that,
of course, that won't be allowed. The next question was: Should
there be a report to the nation?
I knew of Mr. Reagan's admiration for Margaret Thatcher. And I
just obtained a copy of the report that Mrs. Thatcher sent out to
the British population. When Mr. Reagan asked if there were any
questions, I raised my question and pushed across the table that report.
And, of course, as you know -- I'm not suggesting that this
stimulated this -- because I think Reagan had already asked
Dr. Coop to write a report. Dr. Coop, bless his heart, was a good
friend, three doors down the hall, and he wrote that report with
interviews of nearly 30 different groups representing a wide
spectrum of views.
He wrote it himself largely standing at his desk at home with one
NIH staff person. When he had it printed, he took it to the White
House Domestic Policy Council cabinet meeting, handed out numbered
copies, and said I want it back at the end of the meeting and I
want to know your thoughts. And they all approved it. He called
a press conference to release it, went off to Russia with
Weingarten, the head of NIH. Came back to find out that the press
conference was cancelled, walked down into Secretary Bowen's
office and rescheduled it. It was a very interesting tell it like
it is, frank report and Dr. Coop has always earned my respect for that.
I think that I will not add any more. Time is pressing on. But I
think CDC has had a major leadership role in the nation and the
world to be proud of and putting good science with dedication,
compassion is important, and I'm sure that will continue. There
are lots of opportunities for continuing challenges. One I think
is going to be continuing challenges treatment as prevention, and
you heard Paul Kiwata yesterday talking about the ethical issues
that arise from prevention as a tool to prevent transmission and
those tools are becoming readily more available, but who is going
to make sure that they're used and that they're paid for.
So I retired from CDC in '94 and went on to Johnson and Johnson to
help launch an anonymous confidential supported service with
counseling that was approved by FDA but was taken off the market
because it didn't make enough money.
>> Thank you, Gary. So we've heard brief reflections from each
of our panelists, and I'd like to invite those of you who would
like to ask questions directly to the panel to please make your
way to the front of the mic. I'm going to kickstart with a
question which is about the role of advocacy. And I think
activism in the HIV response. And many of us who were not here in
those few years of the HIV/AIDS epidemic perhaps will never
understand the depth of passion, the depth of anger, the sort of
animosity between the community and government or what we
sometimes read about, hear about, see in films on the early AIDS response.
Could you share with me and the colleagues here how this activism
and advocacy has changed your practice as a public health leader
or practitioner?
>> I think it was great. And is great. And it's somewhat
missing now from AIDS. I think one of the things that
characterized AIDS compared to many other public health problems
was the strength and power of advocacy, particularly among people
who themselves were HIV infected and dying.
And I think they brought an enormous amount of power to a movement
that could have gone the other way.
I mean, I wondered in the early '80s whether the AIDS epidemic
would drive gay men back into the closet. And I think instead you
saw thousands and thousands of people marching and acting up.
Now, sometimes the weapons were fired rather broadly and there
wasn't sufficient target practice ahead of time. That's
particularly true when people like me were the target. But I
think none of us at CDC were ever personally harmed physically and
I never really took it personally. I always thought that this was
advocacy that called for stopping the band from playing on.
And that it was very important and it was one of the reasons that
we in government who were ourselves constrained from necessarily
doing what we wanted to do. I mean, let's face it. You can't
always tell the whole truth. If you're in government, you
represent the administration. And Kevin and John all work for
President Obama directly, indirectly or something.
And so they can't say certain things. Like one example is that
most of us couldn't really tell everybody what we really thought
about needle and syringe exchange. So it takes people in the
community to make a difference. And I think that AIDS activists
did that, and I think we've seen almost relatively little activism
in the last 15 years which has kind of died with the press
attention and mortality rates, and that's one of the reasons
there's less attention to AIDS.
>> I think it's worth making a comment on the international
aspects of it. Because I think internationally advocacy increased
as well in places where it really had never existed before,
particularly Sub-Saharan Africa. And the advocacy around the 2000
International AIDS Conference held in Durbin in South Africa was
immensely influential, and I think directly contributed to the
massive increase in funding for international HIV programs
including through PEPFAR and I think it's immensely important.
I think there's some advocates who quite remarkably have become
very deep experts, I can think of several experts who have become
medical experts in their own subjects, treatment, tuberculosis and so on.
And, finally, there is something strange about AIDS. I mean, we
understand why it's garnered this movement of advocacy and outrage
and bizarre, unusual coalitions that never existed. And we
understand some of it. And yet there's an element that almost
ununderstandable and almost mystical, if you will, because there's
plenty of diseases that are terrible and injustice and so on but
yet none of them have managed to build a coalition to the degree
that HIV/AIDS has, and it merits reflection.
>> I think a couple of things: One is when I was at CDC, there
was this sort of instruction list of what you should do if there
was a protest on site. And one of the things that sticks in my
memory was that we were instructed that we should -- this is in
the days of handset telephones, we were told to take the cord out
and handset with us for fear that there would be unauthorized long
distance telephone calls made during a protest. But thank
goodness we never had to employ that strategy at any point that I
knew of. But I think if there's one thing that I miss right now,
it's the level of activism and level of advocacy and the level of
advocacy that we had heard before, certainly it's alive and well.
But I think the level of passion does make a difference. And as I
said before, kind of knowing where the dance works, I think many
people who work in AIDS, whether it's health departments,
academia, CBOs, whatever, share a mission that looks an awful like
that vision statement in the national AIDS strategy but it's sort
of knowing what are the pluses and minuses of each off our jobs
and how can we meld those together in some way to make a big
difference. And the last thing I would say is that I think that
activism, for me one personal thing I took away, was learning more
about active listening. And an important form of activism was
from the Native American communities that we interacted with who
would come and be very concerned about HIV in Native American
communities, largely concerned about surveillance and measurement
issues, but people would take turns speaking one at a time,
talking about what the epidemic meant in that community and that
form of active listening, I think, was incredibly important and
maybe something we don't do enough of these days.
>> Thanks. We have a couple of questions at the podium. I want
to give time and encourage colleagues to ask questions. So please.
>> Question: Am I taking a few seconds? I've waited 28 years to
ask this question. I'm 28 years old. Any '80s babies in the
room? So I like to say that when you all were fighting AIDS I was
fighting my diaper.
And then eight years later I would come to be diagnosed as a
transfusion-acquired AIDS patient. So I'm very proud to be
standing here today, because I'm currently in month nine of my
time at CDC. So aside from all the AIDS history and things like
that, personally 28 years seems a really long time for me only
because I'm 28. So I was just wondering, CDC person to CDC
people, if you have any words of advice for me as a new person to
public health and both to CDC but really old to AIDS.
>> Wow.
That's a wonderful question. I think one thing to know as an
institution, CDC is an extraordinary place to work, because it has
the resources and kind of the influence of a governmental
institution, but it tries to do its best. It's several hundred
miles from DC and that benefits our ability to kind of think
independently at times.
So I think there's -- there are many people who work at CDC who
really do care about the institution. It's not perfect but it
does pretty well.
And I think the other thing is think whenever you're trying to
make decisions, take the moment to look back and see -- just kind
of do I have the right evidence, enough information, and I'm
making the decision with enough reflection to make the right one.
And I think at CDC that's supported.
So I remember when I was in the wards as a physician as San
Francisco General Hospital, I remember it's frequent that it's
2:00 a.m. in the morning, you have a patient who has a problem and
you call the surgeon to come, this patient really needs to go to
the OR and the surgeon says: No, they don't. I'm really not sure
whether surgery, they go down this long list really what they're
saying is the person has HIV and I don't really think they're
going to make it and I don't want to take the time to do the
And you're saying, well, your view is I really think this person
is. But you end up talking, instead of the subtext, you talk
about explicitly you're talking about does the patient need the
service and is it the best thing for that individual. And almost
always the right decision is made because you have a common place
for discussion. And I think at CDC we have the same thing.
Certainly within HIV we have a common language of doing the best
for the people who are responsible for it and hopefully in the end
you make the right decision.
>> Jim, I think you want to respond. You had a couple of responses.
>> Nina, we've met before. And I know you're well trained as an
alum of the Ronald School of Public Health. Applications are
sitting by the door.
>> If I had to choose about what I would do differently, I do
have one, it's I would have gone to public school. Now that I'm
in loan repayment. It's a good problem to have.
>> Anyway, I guess I'd like to echo what John O said about the
importance of training and data and the two things about working
at CDC that have made it rewarding for a lot of us, I think. One
is, you know the science-based approach and the fact that there is
a bureaucracy that will actually deliver in this community
deliver. So you have to know what you know, what you don't know,
and you have to know the limits of government, the limits of
bureaucracy, but the other thing about CDC that made it may be
most rewarding for me is the passion of the people who work there.
And that's more important than obeying the rules and the
bureaucracy. Some of the best things that have been done at CDC
have been done despite the rules. And the people who are most
effective are not always the smartest or the best trained.
They can quit and get fired. But on the other hand the people
with the passion to get something done and a commitment and
passion to what you do is something you should never lose.
>> Thank you.
>> Next question.
>> Hi, good afternoon. My name is Glen Aiken, apart from my
photographic talents, I'm reaching my fortieth year at public
health service at CDC and HRSA. And I just attended the syringe
exchange presentation. And it brought up a question that's always
been in the back of my mind.
Obviously I lived and worked through it, and I recognize the
politics that Clinton and Shelela had to go through, and I was
wondering if there were some thoughts that you all had in terms of
the impact of not approving syringe exchange back then and where
we would have been or would there have been an impact at all? I
think not -- I think yes, but I'd like to hear what your thoughts are.
>> I'd love to answer this question. I think that -- I really
care a lot about substance abuse and treatment of it and
prevention of it. And I think that the syringe exchange argument
got caught in the midst of the scarcity and our general disdain
for drug users.
I mean, virtually everybody hates heroin addicts and cocaine
addicts. So therefore they're the bottom of the bottom of every
community. They get the lowest priority in the block grant. They
just don't get anywhere. And I think when you start with that
attitude, and then you say, well, let's just do syringe exchange,
you leave yourself vulnerable to the problem. So that the best
example I can give you of this, when Steve Joseph was Health
Commissioner of New York City, there was a widespread methadone
program, somebody mentioned Benny Kramer earlier, lots of people
have been involved. But it was a scarcity program, where there
were a lot more heroin addicts in New York City than methadone
sites. So Steve Joseph wanted to do a syringe exchange program.
In order to get it done he had to take people on a waiting list
for methadone to do syringe exchange. I mean, how stupid can you get?
These are people that want to get off heroin, and you throw them a
needle. I mean, what is the problem? The problem is heroin
addiction and the problem needs to be addressed on the part of
using syringes to get people into treatment, not on to a waiting list.
So the overall problem of injecting drug use and our horrible
mismanagement and disdain for drug users and the lack of any kind
of program that treated it at any level, I think the lack of voice
at CDC when I was there about how important it is, was at the
roots of the epidemic in minority community, in straight minority
communities in the U.S.
And it got caught up on the syringe exchange battleground because
there was such a gap in scarcity for everything else. But
undoubtedly syringe exchange would help, but I mean I would hope
that whoever gives out the syringes would say, brother, you ought
to go into treatment and be able to say I can show you a treatment slot.
>> I think one of the things it shows, two of the things it
shows, one is sort of the inability of political systems sometimes
to think very rationally, and secondly the huge diversity
internationally around this issue and the need in public health
for pragmatism.
The term "harm reduction", which if you use the WHO definition of
that, actually includes six, seven or eight individual
interventions of which needle and syringe exchanges are only one
or two.
That term was politically unusable, which is kind of regrettable.
Because if you think about what internal medicine is, management
of diabetes or coronary artery disease and what you will, most of
that actually is about harm reduction, reducing the progression
and the harm of whatever condition it is, obesity, we wish our
individual patients didn't have. And I mean the whole issue of
harm reduction for injecting drug use I think is very much like
that. In health, in medicine, but in public health as well. We
have to deal with the world that we face rather than the world we
wish we were living in.
But in terms of pragmatism, it's extraordinary how different
countries have different policies or how they apply different
policies. And unpredictably sometimes a country like Switzerland,
which is a fairly conservative society, is extraordinarily
pragmatic in its application of interventions like making needle
and syringes available for drug injectors, but actually doing much
more than that, even having safe injecting drug rooms where people
can inject under supervision. So we know they're not overdosing.
The fact that it's a conservative place like that can do these
innovative these things, it's just not a feature of this
particular country.
>> Thank you for your comments. One milestone that stands out
for me in AIDS history is Ryan White, not being allowed to attend
school. I know for a fact that Coop was more than actively
involved in getting Ryan back involved in the schools. Could you
tell me what CDC's roles and activities were at that time?
>> I don't know the circumstances specifically about Ryan White's
being allowed to go back to school but this was a time when there
was tremendous fear about unknown routes of HIV transmission. It
was a time where people were literally afraid to sit next to
somebody with HIV to be a member of a community with an
HIV-infected person.
And there was a particular focus on fear in schools. I suppose
because parents felt that here's a risk that my child doesn't need
to take. And the argument of, well, gosh not having a seatbelt on
your child going to school is probably putting your child at a lot
more risk than having another child with HIV was irrelevant. It
wasn't part of the discussion.
That was the bad news. The good news was despite all these fears
about transmission through mosquitos and sitting next to people on
the bus and all that, eventually the American public got it. And
I'm sure there's still examples of irrational behavior towards
HIV-infected people. But the great majority of that eventually
went away as people started listening, as their worst fears were
not realized. And it just vanished. I don't know if other people
see it that way, but I do.
>> Gary?
>> Just a comment about the difficulty of putting into practice
what you know intellectually. The year that I was working in
Washington for the Assistant Secretary, our daughter called and
said that her classmate, freshman classmate at Auburn University
had just come and told her that he had an HIV positive test and
could he come home and talk to us, talk to me, since he knew what
I was doing. And, of course, we said yes. So he came and spent
the weekend. And when he left, Peggy and I looked at each other
and said we haven't done anything differently. We aren't treating
the dishes or the linens any different than we have but you did
think about that. And that was '86 or '87. So getting people to
accept -- but I think as Harold said -- in today's world I'm not
aware that there's much of that kind of lingering reservation.
>> As we wait for the next question, one of the hallmarks of the
epidemic in the U.S. today's severe pervasive health inequities
the burden of the disease among the African-American, and some
argued the way it's evolved in the U.S. is consistent with other
patterns of SDIs in the U.S. whether look at syphilis or gonorrhea
how that's evolved. So the question to the panel is given what we
know today about how the epidemic has evolved and the health
inequities we're dealing with now, are there other things we could
have done differently in the earlier years of this epidemic to
circumvent these health inequities or do you think this was an
inevitable path that we would be experiencing? It's a slightly
challenging one there but one I think that a number of colleagues
are grappling with today. What could we have done earlier so that
we don't have, black women in the United States being nine times
more likely diagnosed with HIV than white women.
>> I would turn the question around and ask you a question,
Kevin, which is --
-- I don't know why HIV infection rates are so much higher in
African-American gay men than in white gay men. I still don't
understand it. Listening to people who work on this like Patrick
Sullivan, sexual behavior really isn't different.
So without knowing why it is, what are we going to do about it.
>> Okay.
>> I'll tell you what, I'd love to hear the panel.
Nice try. Nice try. But I'd love to hear the panel on my
question and then I'd be happy to --
>> Well, we appreciate your polite deference you big chicken.
But I've already said one thing, and that is the roots of the
heterosexual epidemic black and Puerto Rican Americans was
injecting drug use. That's different from STDs. The problem with
HIV is once the prevalence gets high, the incidence is going to be
high. And if you infect 200,000 injecting drug users, 95% of whom
are black and Puerto Rican, and they're infected for life, you've
guaranteed that you're going to get -- and they're all
heterosexual for the most part, you're guaranteeing that you're
going to have East Coast epidemic of a sexually transmitted
infection, independent of the behavior of the people, the sexual
behavior of the people.
So I feel quite strongly that the roots of some of the disparities
in heterosexuals are related to injecting drug use and our
society's inability to deal with that. The second part of it is
we need national health insurance really badly. And every time we
want to do something, we run into the same old problem and it's
always been true that people with HIV and AIDS don't have health
insurance. And it's just over and over and over. And you guys
battle that, and you just can't get around it.
You test somebody. Nobody will pay for the damn test. You want
to get them treated. They stand in a waiting line. And those
people happen to be black and Hispanic more often than they're
white. With HIV. And so you know those are two things that are
really hard to get around the corner of.
And a lot of talk doesn't do it.
>> What you're really talking about are the social determinants
of health. And do they apply to HIV but they're applied broadly
to all other kinds of health issues as well.
I think, Jim -- I agree with Jim that the injecting drug use issue
has had a huge impact, as he says, but I don't think it's a
complete explanation by any means.
Once you get -- once an infection is established, of course, then
sexual networks take over. People have sex with people like
themselves it's even more stereotypic than that, they have sex
with people who has sex that resemble their own parents. There's
data that shows that. What we see in the United States with
African-American actually is replicated in other countries with
native populations, in Canada, for example, in Australia, New
Zealand, and in France. But in France, because you're not allowed
because if you're French you are a French citizen and it doesn't
matter -- you're not allowed to ask questions about race
ethnicity. You're French, you're French. Therefore these kinds
of differences are hidden because nobody measures them yet they're
predictably there. So it's actually a much more broad question
than just affecting the United States.
>> I think one of the things we might have tried to do more of
earlier but I still don't know exactly how to do this is in
cases -- the issue is sort of how can the health departments and
CDC have partnerships when the state Legislature or the governor
really is a barrier to programs being implemented well, especially
programs for gay men. And earlier I talked about the budget
tables with health departments, and we looked by race ethnicity,
but also looked at how the money was being spent matched to the
disproportionate burden among gay men, injection drug users and
other populations at risk.
And I think it was sometimes hard to figure out how do you bring
national level pressure to bear when it's a state government
issue. And I think that that's something that needs continued
attention over time. And it's something I wish we could have
figured out earlier.
>> Is there another question at the podium? We'll come back to
Dr. Jaffee's point on black gay men in the U.S.
>> I'm Carol Nester from Nashville. I want to thank everybody
for their past and also current leadership and service. Thank you
very much. And I wanted to along the lines of advocating for
clients to get treatment in an uninterrupted way, ask for the
panel's thoughts and ideas. The large percentage of HIV
population that's going in and out of corrections and recognizing
that we've got different funding streams even for those that we
can get on Ryan White, whether maybe going into jails, or state
and federal prisons, and recognizing the ill effects of rebound
viremia or interruption in care, not only on individual but
population outcomes in terms of transmission and health, and if we
can advocate perhaps, I don't know if the new Affordable Care Act
will follow them into corrections, but what we can do in the
context of very expensive treatment regimens to not just leave
them to the county's jurisdiction and pay the price public health-wise.
>> So thoughts on the correctional system, its impact on the HIV
epidemic and solutions?
>> Well, thank you for your initial comment. And a question I
think is also a comment. This is a major issue. I mean, I think
it reflects some of what has already come up that the system
doesn't cover everybody. And people who are in corrections have
been in corrections are some of the most discriminated against
people in society.
And so -- and it's also very hard with that link when you leave
either jail or prison to find yourself in either the old place, in
a new environment or in a totally new environment where you don't
know really how to link into services.
So we do recognize that as an issue. Certainly in the current
work that we're doing in our division, it does have some of the
issues it raised before of not our jurisdiction, not our area but
yet an area we care about. So we have to do a better job of
leveraging other's kind of resources and people throughout the
nation. Pilot programs that show that it works have already been
conducted. So we know it works. It's just what do we need to do
to actually initiate that policy change that will allow that to
happen in a more comprehensive fashion. So I think we're in full
agreement that this is both an important area and an area we're
not doing enough in.
>> Maybe cost-effective studies. And more expensive regimens and
things like that, those have already done.
>> I'm sorry, cost-effective studies of --
>> I'm thinking cost-effective studies of keeping somebody on
treatment and not changing their regimen, averting new cases and
avoiding more expensive regimens.
>> I think cost-effective arguments there's so many arguments
that this works I think it's just getting it done that's the step.
I don't think there's a convincing process like we might have had
with syringe services everyone I've talked to at the highest level
of government agree this is an area in the national strategy
highlights it. But it's actually getting it done when jails are
funded as you know through the counties and they're having budget
reductions, and most people who go through jails last for hours if
only, in the vast majority, fewer than three days. So if that's
happening, how do you introduce something where you might actually
diagnose someone with HIV and then be responsible for them versus
actually not doing that. It's a very hard change. Although some
jails have done it. Prisons is a different situation, as you know
they're better funded but they still have some of the same issues.
>> Just quickly to add to that as well. And this sort of goes
back to Jim's earlier point about access to care. About 2003 or
so, I was on an OIM panel that looked up public financing of HIV
care in the U.S. And we were supposed to look at expanding
public access to HIV care by looking at block grants, expanding
Ryan White, looking at Medicare and Medicaid. And we did all of
that. We sort of fulfilled our charge. And did like two years
words of cost-effective analysis, trying to look at all these
different strategies. And at the end of the day the only thing
that we could come up with that we thought was a data-driven
recommendation was exactly what Jim said, which was it should be
an entitlement program. And ever living with HIV should have
transportable care across jurisdictions, across venue types,
inside of prison, outside of prison. And when we released that
report, we thought, yes, we knew that was a bold statement and we
knew it was maybe a little bit impractical but still that's where
we thought the data led us and we should say it. At that time HHS
issued a press release when our report came out and it was a one
sentence press release that said the panel has overreached its charge, period.
>> Okay. Next question.
>> I would do a series of case controlled studies of deaths. And
I think the only thing people care about is deaths. I think
nobody cares about prisoners, and not enough people care about
poor people or minorities or HIV, but maybe if we found out that
the deaths that occur in the United States are due to the
inadequacies of our health system we might be able to get
somebody's attention. And I just don't see -- in the absence of
national health insurance, all of this running around trying to
figure out who should pay what and everybody's trying to avoid
paying for it is profoundly depressing. Medicaid doesn't want to
pay for it because they're cutting their budgets, the prisons are
cutting their budgets, Ryan White doesn't have enough money, the
federal government can't do it. The states can't do it. You're
just bouncing around the place when a rational thing what if
somebody had breast cancer or something. Would you be arguing
about whether or not they should have a mastectomy if they went
out of prison. It's stupid. The whole thing is just so stupid.
This is a fatal disease.
>> Hi. I'm Terry Wilder. And actually I don't really have a
question other than I wanted to share something. I was sad that I
missed the last session because I'm a professor at a graduate
school of social work in New York City. And I teach HIV in social
work. And I wanted the panel to know that one of the things
that's really important to me is that the students that I teach
understand the history of HIV. Many of them only kind of
understand from today, the future. I think it's critical to
understand what happened in the early years of the '80s, that it
was not easy and it was a very uncertain time and that the very
first week of class we do watch and The Band Played On and we have
a discussion about it because I think it's critical, if we don't
understand where we came from we don't really understand what
we're doing here. So I'm thrilled that in two weeks I get to tell
them I got to see Dr. Jaffee and Dr. Curran in real life and it
wasn't just those characters in the film. So I just want to say
that. Although, you guys seem to be those characters.
>> I think we have an objection here.
>> Just remember that Jim Curran says that the actor that played
him should have been better looking.
>> Oh, okay. But I do have a question related to in The Band
Played On I'm curious what Don Francis is doing.
>> I think that following retirement from the -- he left Atlanta
about, while the moving was being made and was assigned to the
California Health Department for the last four years of his public
health service career. Then when he retired from the public
health service, he went to work with Baxgen, which was a spin-off
of Genentech, which was developing a vaccine. And he drove the
testing of the vaccine through vaccine trials in Thailand and the
United States. In a very professional trial s that were
conducted. Unfortunately, the vaccine was not effective. But he
did that for a number of years. Baxgen expanded its own scope
beyond HIV and ultimately Don took a subunit, I think spun off
another company, and I believe he retired. I saw him about two
years ago in San Francisco. And he kind of talked about being semi retired.
>> I have two answers, one serious one not. The not serious is
that he's the lead actor in the movie "Contagion". Actually, I
saw a letter from him in I think in the New York Times the other
day, and he's in San Francisco with a group called something
like -- I think he's the president of it -- something like
Solutions Global Solutions for Infectious Diseases, something like
that. He's in San Francisco.
>> Hi there, thank you so much for the perspective. As someone
who hasn't been in the workforce itself very long or in HIV very
long, what's, I think, exciting to me about this time is that the
strategy has given us such a clear vision before becoming a
program manager I worked in public education for three years. And
I think public health, public education, both very broken. But
perhaps at least this issue of HIV/AIDS being united by a clear
distinct vision, and your perspective has seen various
administrations. You've been through, as an institution, liberal
and conservative administrations. And I'm wondering from that
long-standing point of view what you would say to CBOs and to just
citizens, to advocates, to friends, to individual Americans.
There was a question raised yesterday about November 2012 and the
potential implications. And that thought, you've been through
various administrations, you will continue to be there as an
institution, what could we be doing to be strategic regardless of
the administration that's in power?
>> Best answered by some of the noncurrent federal employees on the panel.
>> I'm happy to do that and this will be a very nonfederal
answer. So I think kind of harkening back in some ways to the
plenary session this morning thinking about the goals of the
strategy are so important and so clear. And I think then the
issue in many ways is are we going to have the resources to be
able to do that? And I think that that's something that in
thinking about the dance again inside of government and outside,
it's not something that our federal partners can talk about very
easily. They can educate but can't lobby.
But it's something that people outside of government can do. And
I think one price tag is that probably prevention is about 350,
$400 million a year short in the U.S. And I think we have to
keep pressuring for that. Now, that could be new money. It could
be redirected. It could be private sector.
But we have to keep pushing for that, because I think without
that, it's going to be very, very difficult to meet all of the
goals of the strategy. And I think it's one of the issues where I
find it difficult we even have to have this conversation where now
with the FOA the only way we can find new money, which is needed
in some areas is to take it away from other areas. And I think if
we were in an era where we actually had prevention fully funded
with the other 350, 400 million, we wouldn't be talking about
shutting off the AIDS hot line in Massachusetts for the first time
in a quarter century and ending programs there, we'd be talking
about how to make sure those programs are as accountable and as
efficient as possible and making sure that we're pushing forward
with the new money in way that's really necessary. So there
should be accountability everywhere across the board. But it
troubles me greatly when I think about the national strategy and
how much we're underfunding it. Also as we talk about fiscal
accountability, I truly believe in all our analyses if you want to
make sure you are going to drive up medical care costs for HIV the
best way to do that is underfunding prevention. That's exactly
what we're doing is under funding prevention and we'll pay many
more times for that in medical care or costs down the road.
>> Just a comment on the politics. The President and the
Congress serve in the context of the environment. So you have --
and the AIDS epidemic changes; the economy changes. Sometimes you
have a Republican president, democratic Congress and vice versa.
And the reality of politics depends on a variety of things. And
in general, I think if you're working on AIDS in general, the
democratic president can set a tone which feels better than often
the Republican president has. It doesn't necessarily mean there's
more money. Clearly the big increase in global AIDS money came
under George Bush. I mean, that also got us a lot of abstinence
programs and a lot of other kinds of things that we're politically
familiar. So you have to judge if you're a citizen you have to
judge how do you feel about the leadership. I mean, President
Obama has a big national AIDS strategy but hasn't been able to put
a lot of money into it and hasn't really been able to step back
and say what are we going to do to assure everybody with HIV has
appropriate medical care. Because the priority was national
health, was Obamacare, what the Republicans call Obamacare, the
Affordable Care Act. Now the priority is trying to dig out of the
ditch that we're in in the country and get reelected. And so the
context is really tough for politicians now, and the states are
going broke. So it's a very, very difficult time to act and
expect any kind of real action. But it might not be a bad time to
plan. And to put some real meat behind the strategy and to say
what would it really take to do this strategy. What kind of
health system would we have to have if the Republicans don't
totally emasculate the Obama Affordable Care Act, what would it
take to get this done and how would we have to refine our testing
recommendations in order to make them compatible with the health
financing recommendations that we come up with.
And to come up with some really serious plan so when the economy
gets better and the political forces get better aligned, they can
be implemented. Because I'm fairly pessimistic about anybody
expecting any big increase in much of anything in the next couple of years.
>> So the final question, we're almost to the end of this
session, I'd like to begin by answering Dr. Jaffee's question and
posing yet another one to the panel. Dr. Jaffee asked why are we
seeing these tremendous increases near 50 percent increase in HIV
incidence in black gay men over the period 2006 to 2009.
And how that's been a focus of this conference. And in fact we
held a media briefing on this today. But in short, I think there
are multiple determinants operating at multiple layers. And
there's no one answer. You're correct that black gay men have
lower levels of risk behaviors compared to their white and
Hispanic counterparts. That's in the context of high background
prevalence of HIV. So therefore with any risk behavior whatsoever
the probability of acquisition of HIV is higher. We are also
seeing concomitant increases in syphilis within the same
demographic, which can facilitate HIV acquisition. And as we
discussed this morning, in this morning's discussions black gay
men are the nexus of both race and sexual orientation in the
United States. Dealing with issues related to racism and the
structural and social issues that arise from that but also the
stigma and discrimination related to being black and gay within
communities across the U.S. And in this session this morning we
spoke about many of those social and structural determinants that
Kevin mentioned as well. So the final question then to the panel,
Harold, and thank you for stimulating this discussion, is: Given
what we now know about these multiple determinants affecting the
lives of black gay men in the U.S., are there things from your
retrospective experience that we, John and I, and our current
leaders today in this room should be thinking about doing better
or faster or more thoughtfully in moving forward in responding to this?
>> I would offer probably a politically not very correct
response, which is what we're learning, which is probably what
we've known for a long time, is the best way to prevent HIV
infection is to treat people who are infected. It seems to me
that if we're going to make a real impact on the sub epidemic that
we're talking about, it means that we really have to focus our
testing and treatment efforts on that population. Now, I'm sure
that's easier said than done. But if you want to make an impact,
I think that's the way you do it.
>> I guess I would add, I've always thought what you articulated
more clearly and that is when you have something that's the source
of sigma and discrimination, that's not good. But when you have
two things, that's worse. And so if you have racism and
homophobia, you know, you have homophobia within your race
community as well as without your race community. We had a panel
discussion the other day that John was there and we had really
strong members of the African-American community and strong
members of the gay community really getting on each other a little
bit about who should get more attention. I mean, that's the way I
would look at it. And so there's competition even for the
epidemic response and the money. And I think that what Harold
said is absolutely right. But one thing we have to do is honestly
look at ourselves and say how do you build consensus about doing
something about this within society and the societies that exist,
and pay real attention to discrimination and homophobia both
within and outside the black community. Because I think if you
don't do that, you're neglecting it. I mean, it's simply not
right and can't be tolerated to be the racist or homophobic in the
United States. And it has to be discriminated against at very
high levels and very low levels within communities. Now, that's
sort of theoretical. But I think that there's an awful lot of
sigma and discrimination that's in the middle of this, too.
>> My comments, I think, perhaps touch on some of the other
questions that came up like what would you do as a young
professional today and so on. And I think the first guiding
principle especially for CDC has to be we should be driven by data
and evidence and that has to be the fundamental, the fundamental
of everything we do. But at the same time being right is not
enough. And sometimes we see very senior people who believe that
well I'm right, and of course you are but the world doesn't work
like that. So it's extremely important also to have the necessary
coalitions and political constituencies and that's clearly true in
this particular regard. The problem has to matter to the
community that's affected. And, again, to speak frankly, I don't
think HIV matters enough to the whole African-American community.
And that's something we have to collectively work on. The HIV
clearly mattered to the gay community in the early 1980s. In a
way it doesn't matter anymore and in a way it hasn't to any other
affected community. And there's real power there that we haven't
seen for a while. I think we have to also use as Harold said we
have to use the emerging scientific data. We have to be driven by
science in our interventions and as everybody knows, the
developments in the last 12, 24 months have been really quite
extraordinary. And we've got to use that. We have to use that.
And we have to change our funding decisions from things -- this is
domestic as well as international -- from things that we know
don't really work or we don't have a lot of evidence they work to
things that do work or for where there's evidence. And yet we
also have to use judgment. You can't get away from the need for
judgment. So be careful not to throw out the baby with the bath
water. But two final comments. I mean, the discussions about
healthcare in this country are discouraging. I mean, the United
States seems to be proud of the fact of the elements in this
country, proud of the fact that we don't have treatment and
healthcare available for everybody. And it's an extraordinary I
mean internationally this is viewed as very perplexing. There are
other aspects of society that one could talk about also. But
nonetheless it's an issue. And finally, for this meeting, you
know, 30 years into the epidemic, men who have sex with men,
remain so disproportionately reported it's a global phenomenon.
It took us a long time to figure that out, I don't know why, but
we have to ask ourselves is it really acceptable that going
forward is HIV just going to be an inevitability in the lives of
gay men for the foreseeable future. It's a remarkable, black or
white or of other ethnicity. It's a remarkable question and troubling issue.
>> We'll just continue with closing comments related to this question.
>> Just very quickly. I think we also have to look at what are
the disparities in health service delivery as well, too. And
thinking about Baltimore, it's such a severe epidemic among black
gay men in Baltimore. If you look at lack awareness of sero
positivity, if you're a black gay man living in Baltimore living
with HIV, the chances are about 74 percent that you won't know
that you're living with HIV. It's an incredibly high level of
awareness of sero positivivity, when we look at some of the
determinants of that some studies we've been doing, one big driver
of lack of awareness of sero positivity is no access to healthcare
in the last year. And so I think there's access to HIV treatment
but simply access to the health system overall, too.
>> I would simply echo Kevin's comments that you really have to
set priorities and the incredible challenge is increasing
awareness of the problem but when you deal with the realities that
treatment isn't going to be available, making behavior, trying to
initiate leadership in the black community and in those at the
highest risk in the absence of access to care and treatment is
mind numbing reality. But that's where we are.
>> Any closing comments?
>> Thank you everyone.
>> So this brings us to the end of this session. I want to
acknowledge some leaders that are in the room that weren't on the
podium. We had Dr. Ron Valdiserri who is in the room. I'm not
sure, if Ron, are you still here? And Allen Greenburg is here.
Who also played a key leadership role at CDC, and there are also
other federal leaders such as Dr. [Inaudible] who are current or
pair, my pair, currently in the fight against AIDS today working
at the NIH. I want to thank you all for joining us today. And
Sandy Thurman, Sandy thanks. Another great leader, over the first
30 years of the epidemic, thank you for your leadership. Thank
you all for being here this afternoon. And thank you to our panelists.