[Senate Hearing 106-846]
[From the U.S. Government Publishing Office]
S. Hrg. 106-846
ACQUIRED IMMUNE DEFICIENCY SYNDROME PREVENTION
=======================================================================
HEARING
before a
SUBCOMMITTEE OF THE
COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE
ONE HUNDRED SIXTH CONGRESS
SECOND SESSION
__________
SPECIAL HEARING
__________
Printed for the use of the Committee on Appropriations
Available via the World Wide Web: http://www.access.gpo.gov/congress/
senate
__________
U.S. GOVERNMENT PRINTING OFFICE
63-939 WASHINGTON : 2001
_______________________________________________________________________
For sale by the U.S. Government Printing Office
Superintendent of Documents, Congressional Sales Office, Washington, DC
20402
COMMITTEE ON APPROPRIATIONS
TED STEVENS, Alaska, Chairman
THAD COCHRAN, Mississippi ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri PATRICK J. LEAHY, Vermont
SLADE GORTON, Washington FRANK R. LAUTENBERG, New Jersey
MITCH McCONNELL, Kentucky TOM HARKIN, Iowa
CONRAD BURNS, Montana BARBARA A. MIKULSKI, Maryland
RICHARD C. SHELBY, Alabama HARRY REID, Nevada
JUDD GREGG, New Hampshire HERB KOHL, Wisconsin
ROBERT F. BENNETT, Utah PATTY MURRAY, Washington
BEN NIGHTHORSE CAMPBELL, Colorado BYRON L. DORGAN, North Dakota
LARRY CRAIG, Idaho DIANNE FEINSTEIN, California
KAY BAILEY HUTCHISON, Texas RICHARD J. DURBIN, Illinois
JON KYL, Arizona
Steven J. Cortese, Staff Director
Lisa Sutherland, Deputy Staff Director
James H. English, Minority Staff Director
------
Subcommittee on Departments of Labor, Health and Human Services, and
Education, and Related Agencies
ARLEN SPECTER, Pennsylvania, Chairman
THAD COCHRAN, Mississippi TOM HARKIN, Iowa
SLADE GORTON, Washington ERNEST F. HOLLINGS, South Carolina
JUDD GREGG, New Hampshire DANIEL K. INOUYE, Hawaii
LARRY CRAIG, Idaho HARRY REID, Nevada
KAY BAILEY HUTCHISON, Texas HERB KOHL, Wisconsin
TED STEVENS, Alaska PATTY MURRAY, Washington
JON KYL, Arizona DIANNE FEINSTEIN, California
ROBERT C. BYRD, West Virginia
(Ex officio)
Professional Staff
Bettilou Taylor
Mary Dietrich
Jim Sourwine
Ellen Murray (Minority)
Administrative Support
Kevin Johnson
Carole Geagley (Minority)
C O N T E N T S
----------
Page
Opening Statement of Senator Arlen Specter....................... 1
Opening Statement of Senator Barbara Boxer....................... 2
Statement of Hon. Nancy Pelosi................................... 6
Statement of Hon. Carole Migden, California State Assembly....... 8
Prepared statement........................................... 10
Statement of Dr. Helene Gayle, M.D., M.P.H. Director, National
Center for HIV, STD, and TB Prevention, Centers for Disease
Control and Prevention, Department of Health and Human Services 12
Statement of Dorothy Mann, Chair, Government Affairs Committee,
AIDS Alliance for Children, Youth, and Families................ 22
Prepared statement........................................... 24
Statement of Thomas J. Coates, Ph.D., director, Center for AIDS
Prevention, AIDS Research Institute, University of California,
San Francisco, CA.............................................. 26
Letter to President Clinton.................................. 27
Statement of Doretha Flournoy, executive director, AIDS Project
of the East Bay................................................ 32
Prepared statement........................................... 35
Statement of Lonnie Payne, president, Board of Directors, San
Francisco AIDS Foundation...................................... 35
Prepared statement........................................... 37
Discovering Global Success: Future Directions for HIV Prevention
in the Developing World........................................ 47
ACQUIRED IMMUNE DEFICIENCY SYNDROME PREVENTION
----------
MONDAY, FEBRUARY 14, 2000
U.S. Senate,
Subcommittee on Labor, Health and Human
Services, and Education, and Related Agencies,
Committee on Appropriations,
San Francisco, CA.
The subcommittee met at 12 noon, in the Hiram Johnson State
Office Building Auditorium, 455 Golden Gate Avenue, San
Francisco, CA, Hon. Arlen Specter (chairman) presiding.
Present: Senator Specter.
Also present: Senator Boxer and Representative Pelosi.
OPENING STATEMENT OF SENATOR ARLEN SPECTER
Senator Specter. Good afternoon, ladies and gentlemen, and
welcome to the hearing of the Appropriations Subcommittee on
Labor, Health, Human Services and Education.
Last July, the subcommittee convened a hearing here, and I
had occasion to be in the vicinity on other activities and
thought it would be useful to have a hearing on AIDS
prevention. And I am delighted to be joined by two of my
colleagues from Washington. From the Senate, Senator Boxer, and
from the House of Representatives, Congresswoman Nancy Pelosi.
And the subject that we are taking up today is one of great
national importance and special importance in this area. We are
beginning to focus now on the funding for fiscal year 2001, and
this hearing will provide some insights as to what we ought to
be doing in that respect.
Senator Harkin was here for our July hearing and wanted to
be here today in his capacity as ranking Democrat, but could
not be here. But Senator Harkin and I, with co-sponsors, filed
a resolution last week to increase the National Institutes of
Health funding to $2.7 billion.
In the course of the past 3 years that funding has been
increased by more than $5 billion, over $900 million 3 years
ago, $2 billion 2 years ago, $2.3 billion last year. And it is
my view that the NIH is the Crown Jewel of the Federal
Government. It may, in fact, be the only jewel of the Federal
Government.
And there have been enormous results. And there are quite a
number of battles to fight along that line, one I might mention
very briefly. What where we are looking for national support is
on the battle to take away the restriction limiting NIH from
funding research on embryos.
NIH, according to a legal opinion, can research on stem
cells once removed from embryos but not from embryos. And that
is going to be a big issue coming up, where not giving you any
of the history, Senator Lott has promised to put that on as a
freestanding bill.
I am pleased to note from our subcommittee there were very
substantial increases in a lot of the critical funding areas.
NIH on AIDS went from under $1.8 billion to over $2 billion.
CDC/HIV AIDS prevention went from $657 million to $730
million. ACDP went from $461 million to $528 million. Ryan
White funding went from a little over $1.4 billion to almost
$1.6 billion.
And we are going to try to maintain these funding levels in
the future with proportionate increases, as we have in the
past. And, candidly, that is a tough battle for a lot of reason
which I will not belabor here this afternoon.
We have a very distinguished array of witnesses.
It is hard to make a selection of who will go next, but I
guess Senate protocol----
Senator Boxer. Yes.
Senator Specter [continuing]. Turns to you, Senator Boxer.
OPENING STATEMENT OF SENATOR BARBARA BOXER
Senator Boxer. Well, thank you very much. And I don't think
that Congresswoman Pelosi and I mind who goes first, because we
are a team.
I just want to say to you, Senator Specter, it is very
important that you continue this incredibly focused effort on
this disease. We are so pleased you are back here again.
And Congresswoman Pelosi, my friend, she is really the
leader in the House on this and, in many ways, a national
leader in getting more AIDS funding.
So it is an honor to be here with you.
My schedule is such that I have about an hour. So I am
going to be brief in my opening statement.
I will make some brief points and go quickly through them.
First of all, the last time you were here, I want to thank
you for that because you had Congressman Ron Dellums, if you
remember, come speak to us. And he pointed out the AIDS in
Africa issue like no one else had done before. And as a result
of his amazing leadership, Congressman Barbara Lee wrote a
bill, sort of a Marshall Plan, against AIDS in Africa. And I
picked up on her effort in the Senate and have introduced a
bill through my----
Mr. Petrelis. I am a person with AIDS. My name is Michael
Petrelis. And I am here to talk about the money----
Senator Specter. No, that's all right. Now wait----
Mr. Petrelis [continuing]. That is sent here where we
cannot buy----
Senator Specter. Wait a minute, officer. Officer, leave him
alone.
Mr. Petrelis. Stop sending money without accountability. As
a person with AIDS I am really angry.
There was no announcement about this meeting here in San
Francisco.
You honorable people have come here. You do not have people
with AIDS who are unconnected to the money you are sending
here. Now we have had major problems in San Francisco where we
cannot follow the money, where we cannot have access to
services. This is in despite of the fact that for HIV
Prevention Services in San Francisco we get $8 million, $8
million. You can't find a condom in the gay bars. When are you
going to listen to us? We have high salaries at the AIDS
industry. And people here in San Francisco are going without
having subsidies. I would like some answers, please.
Senator Specter. Thank you, thank you very much. We are
going to proceed as our hearing. And we'd be glad to postpone--
--
Mr. Petrelis. AIDS is decreasing in San Francisco and
nationwide. Why do you keep promoting terror? Why do you keep
funding AIDS terror when the statistics are down. AIDS is
disappearing. People are not taking the deadly drugs and they
are living longer.
Why don't you tell the truth about needs, Nancy Pelosi,
Arlen Specter, Senator Boxer? AIDS is over.
Ms. Pelosi. Thank you very much for your contribution.
Senator Boxer. Thank you very much.
Senator Specter. OK. Thank you very much.
Mr. Petrelis. I want to say there needs to be a place at
the table for those of us who do not take the treatment that
are healthy and living long, healthy and vitalized, being
ignored by these panel leaders, because we are not for funding.
Senator Specter. Officer. Officer, don't--leave him be.
Leave him be.
Mr. Petrelis. We are not for funding. I have had AIDS for 5
years. My hair is not falling out. I refused all medical
treatments. And I refuse to believe that. I am a very strong
person. It's the percentage of the indigent people around here
who judge cold facts with the same precision that people with
AIDS are dying today.
And what we ask for you, respectfully, is to reevaluate
this drug into body, this hype early, because what you are
doing is giving healthy people 50 pills a day. And it will kill
them.
And what we need from you, please, is a place at the table
for those of us that are unconnected that defy the norm here in
the city that thrive with this disease. We deserve a place in
your office just as much as those who are paid for by the
pharmaceutical companies. And we need your help.
Senator Specter. We would be willing to hear from you. We
would like to proceed in an orderly way.
Mr. Petrelis. When is public comment for people with AIDS
unconnected to the AIDS industry?
Ms. Pelosi. Michael, the Senator was very courteous in
hearing you out. Thank you for your contribution to it.
Senator Specter. We would be----
Mr. Petrelis. I am hearing two different things from you.
Senator Specter. Well, I am presiding at this hearing. And
it is my----
Mr. Petrelis. You looked terrible on ``20/20'', by the way.
You looked terrible on ``20/20''.
Ms. Pelosi. Michael. Michael----
Mr. Petrelis. We want that ability, Nancy, with every
breath we have, because the wind is blowing, Nancy. The wind is
blowing.
Ms. Pelosi. The Senator has been very gracious to hear you
out. Thank you for your contribution.
Mr. Petrelis. After 2 years demanding accountability, yes,
you are finally hearing us. You can point your finger, Nancy.
Ms. Pelosi. Michael, thank you.
Mr. Petrelis. AIDS has the ability and----
Ms. Pelosi. Your contribution is over.
Mr. Petrelis [continuing]. Here it is, staying. And I would
like to know why the HPPC did not make the announcement--UCSF.
It's all AIDS industry, pharmaceutical industry subsides. And
people are dying without--it needs to stop.
Senator Specter. We have heard you.
Mr. Petrelis. We need your help.
Senator Specter. Now would you mind--now would you mind----
Voice. Why didn't you invite the public to this?
Senator Specter [continuing]. Sitting down----
Voice. Why didn't you invite the public?
Senator Specter. The public has been invited.
Mr. Petrelis. No, there was no----
Voice. [continuing]. This place is empty, there is no
public, Senator Specter. Why are you holding these in secret?
Why are you holding these hearings in secret?
Senator Specter. If you gentlemen will sit down, we will be
glad to hear from you when we complete----
Voice. AIDS is a scam.
Senator Specter. I am aware of that. Would you please take
a seat in the audience?
Mr. Petrelis. Will you promise to help us?
Senator Specter. And when we have heard the listed
witnesses we will be glad to hear from you, but we don't have
to.
Will you please----
Voice. Why did you fail to make the announcement about this
meeting?
Senator Specter. If you do not sit down, you are going to
be evicted right now.
Mr. Petrelis [continuing]. Like people with AIDS, in San
Francisco, who can't get a housing subsidy.
Senator Specter. All right, officer, escort them out.
Mr. Petrelis. And we are very angry with this industry.
Nancy Pelosi continues to subsidize her friends while people
who are HIV-positive have no services.
Voice. You can point your finger.
Mr. Petrelis. Stop it, because you are endangering the
safety of the public.
Voice. As a Jewish woman, you know that from the government
can make lists of anybody. You should be ashamed of yourself.
Senator Specter. Officer, escort----
Voice. And you have done nothing----
Senator Specter. Officer, escort them out.
Voice [continuing]. But allowed the greedy to get greedier.
The complacency is with the greedy----
Senator Specter. Escort them out, officers.
Voice. Are you aware that the executive director gets
$180,000 a year. Do know how many people with AIDS you can feed
with $180,000 a year?
Senator Specter. Officer, escort them out.
Voice. We are not saying people are sick, but we are saying
we need your help. And we just don't need you to spend money on
the pharmaceutical companies. We don't need to subsidize the
pharmaceutical companies. It is more of the treatment. We need
housing, we need food, we need job training. We don't need more
treatment. We need your help.
People with AIDS like me without the treatment are living
long healthy lives. Don't ignore us. Stop fighting the AIDS
spirit. The CDC is wrong. AIDS is not contagious. This epidemic
is waning and it is because people are not taking poisoned AIDS
drugs----
Senator Specter. We will now continue with Senator Boxer's
opening statement.
Senator Boxer. As I was saying,----
Voice. This isn't over. Let's talk about what AIDS is, OK?
Senator Specter. Will you escort the lady out, please?
Voice. This is not a simple contagious disease. It's a
group of illnesses. None of them are caused by a virus. OK?
Let's talk about that.
Senator Specter. Officer, escort her out.
Voice. You can throw us out of here, and you can have your
little secret meetings, OK? But we've got your number. And the
numbers are going down, and this is----
Senator Specter. Senator Boxer.
Senator Boxer. Mr. Chairman, I am pleased you are back. The
last time you were here Ron Dellums was eloquent on the global
nature of this disease. And as a result we have two strong
bills pending in the Congress that would deal with it.
I am proud to say that Gordon Smith is my co-author, and it
is called, ``Global AIDS Funding,'' and I am looking forward to
working with you on that.
As we have heard, this continues to be a very rough issue
here in this area and all throughout the State. And we know we
have to do more. What I am going to do, because we have wasted
time in my opinion, because I think the opinions that were
expressed could well have been expressed in a very simple
straightforward way.
There is an opinion out there which needs to be heard and
obviously has been heard by those physicians who care very
deeply about this and political leaders who do, as well. We are
doing our best with what science is telling us, and we will
continue to follow science. This isn't about politics, or who
shouts the loudest. It is about saving lives.
The fact that you are here, Mr. Chairman, means a great
deal to Congressman Pelosi and myself. Again I will put all of
the statements----
Voice. Cut the cards right, Barbara.
Senator Boxer [continuing]. I will put all these----
Voice. All she's----
Senator Specter. Will you please escort that man out,
please?
Voice [continuing]. You will be killing blacks and junkies
and blacks and Latinos in this country----
Senator Boxer [continuing]. In the record. And I will
continue to do the best that I can to work with you, Mr.
Chairman.
Thank you.
Senator Specter. Officer, escort him out.
Voice. You got bought-off groups like the HPPC and the DPH
AIDS Foundation behind you, and we are sick of it. And it is
not about science; it is about flocking, it is about greed--it
is not over. The truth is coming out HIV is not called AIDS----
Senator Specter. Officer, escort him out.
Voice [continuing]. The word is out and you can try the
hype as long as you want. Sip your water, Barbara. Look pretty,
Nancy. Smile, Arlen. But the truth is out. The AIDS fight is
over. We want services, not salaries----
Senator Boxer. I am done.
Senator Specter. Congresswoman Pelosi.
STATEMENT OF HON. NANCY PELOSI
Ms. Pelosi. Thank you very much, Senator Specter. And thank
you for coming to San Francisco again to talk about AIDS
prevention which is very important.
We are about to hear from a very distinguished experienced
panel about the impact of AIDS in our community. The fact is,
is that the success that we have experienced here has been
because we have listened to people. Our success is based on a
community-based solution. It's about people coming together and
forming a community-based solution which has served as a model
to the rest of the country. That's why it is ironic that these
people are saying they aren't listened to. Everyone is listened
to in San Francisco.
So thank you for your courtesy, but as you know advocates
by their nature are relentless, persistent and dissatisfied. We
want to hear from our witnesses who were invited. We are glad
you are here. We want to extend courtesy to you of the
information we have to provide.
I just want to make a couple of points because I think it
is important for you to know. In our eligible metropolitan area
the AIDS epidemic has taken a tremendous toll. We have the
highest rate of total AIDS cases per 100,000 residents. There
are an estimated 20,000 people living with HIV infection in our
eligible metropolitan area, 15,240 of whom live here in San
Francisco. Over 8,200 San Franciscans are living with AIDS, an
increase of 50 percent since 1991. And over 50 percent of
people living with HIV are diagnosed with AIDS, a much higher
proportion of EMA's.
The Health Department's AIDS Office reports that the
demographics of the epidemic are changing here. Recent AIDS
cases are more frequently people of color, 38 percent versus 25
percent cumulative. Women, 8 percent compared to 4 percent.
Injection drug users and also drug users who are also men who
have sex with men. A disproportionate number are African
Americans. African Americans comprise 11 percent of San
Francisco's population, yet make up 20 percent of our AIDS
cases diagnosed since 1998. And during this same period a
proportion of cumulative cases among whites decreased from 75
to 62. That is where the decrease is. But the increase is in
the African American community.
I have many more statistics that paint a very sad picture
of the awful bite we take of this wormy apple called AIDS. And
I'll submit them into the record in the interest of time.
I do want to thank you, Senator Specter, not only for
having this hearing, but for your leadership on this issue, for
helping us in very significant ways to increase the funding in
all three areas: prevention, care, and research.
Frankly, you have made an enormous difference. And I know
one of the reasons is because of Dorothy Mann, who testified
here today, and her advocacy and education program in
Pennsylvania. But for that reason I want to, on behalf of my
constituents, thank you for what you had done and for coming
back here for this hearing on prevention, prevention,
prevention. Because whatever the debate is about how AIDS is
spread or what the appropriate treatment is, one thing we all
agree on is prevention is the order of the day. So we don't
have to have people suffering from this.
Thank you very much, Senator.
Senator Specter. Thank you very much, Congresswoman Pelosi.
For the record, just a comment or two.
I am not unused to having outbursts at hearings. And my
preference has always been to give a fair amount of latitude to
see if we couldn't proceed without a photograph of a uniformed
officer escorting a protester out. When necessary, it has to be
done. But regrettably that captures the notice of the day with
an inevitable picture with an officer in uniform and a
protester being escorted out, not giving the affirmative
impression of a serious congressional panel trying to do
something about a very, very serious problem.
But today's demonstration was carefully orchestrated
seriatim. So we took the action necessary. I have made it a
point in the past, when demonstrators are present, to prolong
the hearings from time to time. That will not be now necessary.
I think they have said what they came to say. Suffice to say
just that.
We are awaiting the arrival of Dr. Helene Gayle, M.D., and
in the----
Dr. Gayle. I am over here.
Senator Specter. Well, in the melee, Dr. Gayle, we did not
note your arrival.
Dr. Gayle. They did.
Senator Specter. You were not, however, mistaken for one of
the protesters.
Now, Dr. Helene Gayle is the director----
Ms. Pelosi. Mr. Chairman, before you introduce Dr. Gayle
and Assemblywoman Carole Migden, if I just may seek recognition
again, because in cutting my remarks short I did not
acknowledge the work of Senator Boxer.
From the first day she went to Congress, elected in 1982,
she brought this message there with her about AIDS. Her entire
congressional career has been spent working and demonstrating
great leadership on this issue.
Senator Boxer. Thank you, Nancy.
Ms. Pelosi. And she has been there for the history of the
AIDS epidemic so she knows of what she speaks in this regard.
And also I want to acknowledge the leadership of our mayor,
Willie Brown, who would be here except that he is not in town,
but the good offices of Bill Barnes from his office was
instrumental in making this hearing possible. But kudos to our
mayor for his leadership, to our other Senator, Senator
Feinstein, who was Mayor through the early part of the epidemic
and is a great leader in Congress on this issue.
But Barbara is a special case because she's been there from
day one in Congress fighting on this issue.
Thank you, Senator.
Senator Specter. Thank you, Congresswoman Pelosi.
STATEMENT OF HON. CAROLE MIGDEN, CALIFORNIA STATE
ASSEMBLY
Senator Specter. We are going to adjust the schedule just a
little bit and we are going to call on Panel One, both Dr.
Gayle and Assemblywoman Migden. If you take your seats we are
going to hear from you first.
Assemblywoman Migden, I have just been informed that you
have commitments, and we are just a little tardy. So we will
proceed.
Assemblywoman Carole Migden represents the 13th District in
the California State Assembly, first woman and first freshman
legislator to share the California State Committee on
Appropriations. She began her career in the State Legislature
as an advocate for AIDS treatment and prevention. And prior to
her election to the State Assembly in March 1996 she served 5
years as a member of the San Francisco Board of Supervisors.
Welcome, Ms. Migden, and we look forward to your testimony.
Ms. Migden. Thank you very much, Senator. And welcome to
San Francisco. I know we woke you up this morning.
Senator Specter. If you have seen our practice, the green
light is to signify 5 minutes, which is the practice of the
committee. The yellow comes on at one, and the red is stop.
Ms. Migden. OK. We will move forward; I thank you. And I
thank you for coming to our city and your interests and
attentiveness to HIV concerns has been something the people of
California and San Francisco have been very grateful for. I
know you been here before, and we appreciate that.
I am also particularly honored to be joined by Senator
Boxer, who has been an advocate and then a vigilant about HIV
issues when she was a Congresswoman and has taken that
leadership to the U.S. Senate.
Representative Pelosi has been part of the HIV fight for
many years ever since she took office in 1988. And the city and
California has been well-served by these distinguished
representatives. And we are honored to be here before you.
As Chair of the Assembly Committee on Appropriations, Mr.
Chairman, I realize the difficulty you face in trying to make
the kinds of tough decisions that are being held in balance
here. Your task in determining how to distribute precious few
dollars to many critical and deserving efforts is, indeed,
daunting. I appreciate the challenge of all the public health
requests that come before you, but I am here today to request
that HIV prevention programs be given the utmost consideration.
Last year in California, Governor Gray Davis evidenced the
commitment of California to HIV funding by appropriating nearly
$30 million in State General Fund moneys augmenting last year's
allocation by some $10 million.
We are very appreciative that the President has included an
additional $50 million for national prevention efforts in this
year's Federal budget.
But we are here to say that even though we commend it and
we are very appreciative, we need more and more and more to
cover the full cost of curbing this disease.
I am here on behalf of the city and county and San
Francisco, the people of California to ask that in addition to
that $330 million that is earmarked for State and Federal
programs I think we need at least $100 million to fortify the
prevention efforts nationally. These are the funds that will be
used by local and State health departments to start up and
effectuate and modernize HIV programs.
This year we want to move towards not just HIV prevention
but HIV surveillance programs. We simply have to do more to
educate the new populations at risk as the prevalence in
location of the disease spreads and changes over the years. As
you have heard, of course, there are new population at risk. We
are very alarmed by the number of young people that are sero
converting. We are alarmed that increasingly women are
contracting AIDS.
Whereas, we had safe sex messages that worked for young
people, the prevalent population afflicted in our State
continues to be gay and bisexual men. And we are concerned
because young men aren't getting the message, and that hasn't
changed. What's been pointed out is increasingly people of
color at target.
Mr. Chairman, that means we have to figure out new ways to
deliver a message that is effective, that people understand,
that safe sex is an imperative and not only occasionally. We
have in many ways hit some cultural limitations as we began a
program of prevention of the years ago that needs to be
modernized and updated. And that is what we seek these
additional funds for.
California is, I think, the most spectacular and diverse
State in this Nation. We just hit 34 million people. If we can
create and expand upon the model and the know-how and the
commitment of San Francisco to replicate nationally I think
we'll go very far in curbing this nationwide.
I also want to mention that then Senator Feinstein was the
mayor of this city and began that 5-year evaluation program.
And really San Francisco has always been on the forefront in
determining how to develop really safe sex messages that are
effective.
You know, Mr. Chairman, we can figure out how to sell
Campbell's soup by advertising. We get manipulated in wonderful
ways by advertisements in the media, we buy products, we buy
cars. We just wonder if we can apply that same kind of
expertise to letting people know the gravest risks at hand.
Lastly, there are costs to California that are unique. We
have the largest population of undocumented immigrants. There
are 160,000 people in prison in California. Of those 14 percent
are illegal immigrants. Not even calculated into these figures
are the costs that California bears by serving in the full
range of undocumented people, but most additionally many of
these folks in jails have HIV, have hepatitis, have other
diseases. And those are also what are seen as indirect but
become direct costs to California as well because we are
responsible for population that perhaps we need Federal
assistance to really treat well.
I know that Governor Wilson was always talking about this.
Governor Davis has continued. And this is important to bear
note. So we hope that you will be especially generous and
responsive to San Francisco.
And as I see my third light, I know that means something.
But to also understand that the money is well used because
we have been serious, we have been on the forefront. It was
since 1981, and I remember those days. And I was a former
county supervisor. I am now a State legislator. All of us here
around this dias began at the beginning. And now we know we
have gotten the messages to some. New people are at risk. Let's
modernized and update. And let's also track where we think
those next infections will be, how to concentrate on them----
Senator Specter. Ms. Migden, would you sum up, please?
PREPARED STATEMENT
Ms. Migden. I sum up right now, to say, once again, there
are nearly 900,000 people in America with HIV. We project that
number might stay steady and increase. But Mr. Chair, it will
be different people afflicted in the new century. And that is
why I think it is important to have these hearings and your
understanding of a need for a new approach.
I thank you very much, sir.
Senator Specter. Thank you.
[The statement follows:]
PREPARED STATEMENT OF CAROLE MIDGEN
Good afternoon, Chairman Specter and distinguished members of the
Committee. My name is Carole Migden and I represent San Francisco in
the California State Assembly, where I chair the Committee on
Appropriations. It is an honor to appear before you today as we
Californians call upon the federal government for help in our struggle
against the HIV epidemic.
Mr. Chairman, I am pleased to appear before you today, as your
interest and attentiveness to the problems of HIV infections have been
tremendously helpful.
And also I am particularly honored to be joined by our
distinguished and stellar United State Senators Dianne Feinstein and
Barbara Boxer, both of whom were early and effective advocates in our
struggle to curb this disease.
Senator Harkin I welcome you to our fine city, your contributions
to progressive policies in America are legendary and I am sincerely
thankful for your concerns on this pressing health issue.
Rep. Pelosi, I am very glad that you have joined these proceedings
today. Your vigilance and leadership on HIV issues has been remarkable
in your years of public service.
As the chair of the Assembly Appropriations Committee and as a
Member of the Budget Conference Committee, Mr. Chairman and members I
realize the difficulty you face in making the kinds of tough decisions
before today. Your task in determining how to distribute few and
precious dollars that are needed for so many critical and well
deserving efforts, is indeed daunting. I appreciate the challenge of
endeavoring to address a myriad of public health concerns with limited
resources, but I am here today to request that funding for HIV
prevention programs be given the utmost consideration.
Last year, California and Governor Gray Davis evidenced our
commitment to fighting the HIV/AIDS epidemic by appropriating nearly
$30 million in State General Fund revenues for prevention and
education. This allocation represents nearly a $10 million dollar
increase from the previous fiscal year.
President Bill Clinton too has displayed an unwavering dedication
to combating the epidemic and recently announced a landmark initiative
to invest an additional $50 million in national prevention efforts.
This greatest single year increase for HIV prevention programs will
educate hundreds of thousands of individuals who are at great risk of
infection.
Yet while these initiatives must be commended and are well
appreciated, unfortuately the federal budget falls short of addressing
the full cost of funding required to stop the spread of the disease.
Mr. Chairman and members, I am here today on behalf of the City and
County of San Francisco and the people of California to request that
you augment the $330 million dollars already earmarked for state and
local programs by an additional one hundred million dollars to fortify
AIDS prevention efforts nationally. These additional funds are
necessary so that state and local health departments can start up and
effectuate modernized HIV prevention programs. Let me again state our
sincere appreciation for the commitment to fighting AIDS reflected in
the federal budget, however in fiscal year 2000-2001 an even greater
commitment is necessary to fully fund HIV prevention and HIV
surveillance programs. We simply have to do more now to educate new
populations at risk as the prevalence and location of this disease
shifts throughout the nation.
We have gone a long way over the last decades in educating some
segments of society about AIDS, but recently we have come to understand
that new and differing populations of people are becoming high-risk for
HIV infection.
San Francisco is a shining example of what can be accomplished by a
local community. The collaboration of medical researchers, state and
municipal officials, community organizations and people living with HIV
has yielded one of the nation's most comprehensive, state of the art,
HIV prevention programs. By virtue of former Mayor Dianne Feinstein's
complete understanding of and quick response to the exploding epidemic
which was ravaging our city, San Francisco became the first city in the
nation to develop a five-year evaluation strategy for HIV prevention, a
model of care that the Center for Disease Control still mandates for
local and state compliance with federal funding guidelines.
Mr. Chairman and members I cannot overemphasize the tremendous
leadership provided at that time by former-Mayor Dianne Feinstein,
later joined by Congresswoman Barbara Boxer and Representative Pelosi
in their understanding the seriousness of the disease and urgent need
for action.
In spite of this unparalleled dedication and know-how, San
Francisco and the rest of the nation must increase, renew and refine
its HIV prevention efforts with a new and evolving understanding of the
different populations and people who will be at risk of infection in
the future. The challenges that we face as a nation in our struggle
against this epidemic are, have always been, and will continue to be
heartbreaking and all consuming.
Mr. Chairman and members, it is an absolute imperative that we
educate Americans about the importance of learning their HIV status.
There are close to 900,000 people in the United States today living
with HIV. Although it sounds hard to believe, nearly a third of these
people have no idea that they are HIV positive. Mr. Chairman and
members we must do all that we can to educate the public and
aggressively encourage all people at risk to go out and get tested.
Here in California, last year our legislature enacted a measure
that provides voluntary HIV tests to every pregnant woman in the state.
This measure complements our evolving and ever-changing HIV outreach
programs today.
Mr. Chairman Specter as you know, the pattern of HIV infection
varies from state to state. More and more women, IV-drug users, racial
minorities and young people are getting infected today. The federal
government must recognize the unique needs of each state in the union,
and respond appropriately on a state-by-state basis. Funds must be
earmarked for state and local public health agencies to expand
community planning, neighborhood outreach, public education using media
and town hall meetings if necessary to alert the public of their
vulnerability and to stop the spread of the disease.
In light of recent trends of HIV infection, it is clear that our
greatest challenge lies in educating young people. American teenagers
are becoming sexually active earlier in life, and most are not using
condoms. According to the Office of National AIDS Policy two young
people become HIV infected each hour. People under twenty-five years of
age account for half of the tens-of-thousands of new infections which
occur in America each year.
Mr. Chairman and members, the current state of affairs is
absolutely unacceptable. This young and high-risk generation of
Americans threatens to accelerate the epidemic just as we were
beginning to make progress in our efforts to beat back the disease. New
medicines are helping HIV positive people live longer, but in time
we've noticed, after years of ingesting highly toxic medications,
complications can arise.
We need to adequately fund peer education, group counseling, and
other educational efforts targeted at young people. We must reexamine
the way we market our prevention efforts, and formulate a message that
is appealing and convincing to young people. As the disease changes and
progresses we must update and tailor our prevention message for new
populations at risk; having safe sex must be seen as a moral
imperative.
Mr. Chairman and members in addition to our efforts to connect with
high-risk populations, we must at the same time fully commit to funding
HIV surveillance programs. The most important thing we can do to stop
the spread of the disease is to couple HIV prevention with HIV
surveillance.
The California Legislature last year developed an HIV surveillance
system to track the rate of incidence of infection and to project and
pinpoint the spread of HIV in the future. We designed a surveillance
system to identify the location and concentration of new HIV cases and
to identify populations likely to be vulnerable in the future. Although
Governor Gray Davis expressed support for the policy and goals of the
legislation, the bill was vetoed due to lack of funding from the CDC.
Mr. Chairman and committee members, the Center for Disease Control
is the preeminent funding source for AIDS and HIV surveillance programs
throughout the nation. The CDC has instructed all states in the union
to create HIV reporting systems in order to gather updated data
regarding the spread of AIDS nationwide. It is imperative that the CDC
assist California and all states in their efforts to comply with this
important directive.
As I previously mentioned, the State of California increased its
funding for HIV prevention programs by nearly $10 million last year.
These resources will bolster the CDC's commitment to our prevention
programs and aid localities in responding to new HIV infections. New
funds are being used primarily to expand programs, which again are
targeted toward gays, bisexuals, people of color, high-risk youth and
women.
Moreover California has made a significant investment of $1.4
million to monitor and evaluate all currently operating HIV
surveillance programs. The funding of program evaluation is critical to
ensure that scarce resources are used well and effectively.
Furthermore, critical analysis of the efficacy of California's
prevention programs will guide the state in making enlightened policy
decisions in the future. I am hopeful that the CDC will recognize
California's premier role and trailblazing nature by funding these
qualitative evaluations of our HIV surveillance and prevention efforts.
Not included in your materials but worth mentioning, is the cost
that California incurs each day by serving a large population of
undocumented immigrants. For instance there are 160,000 inmates housed
in California correctional institutions today. Of those 13.5 percent
are illegal immigrants, many of whom suffer from HIV, hepatitis and
other acute illnesses.
For many years California has been forced to shoulder these costs
alone. Our former Governor Pete Wilson fought long and hard for federal
assistance, and Governor Gray Davis is persisting today in urging the
Federal government to cover the cost of undocumented immigrants. I
bring this up today to draw attention to the great diversity and
financial burden California bears in our quest to stop the spread of
AIDS.
Mr. Chairman and committee members, in closing, I would like thank
you for your compassion and attentiveness to this very grave public
health concern. I thank you for using the power of your office to
influence and effect our treatment of HIV/AIDS. The people of San
Francisco and California have great confidence in your commitment to do
all that you can to fight this disease, and we appreciate your
willingness to consider our requests for assistance. We know that we
can count on you for continued leadership and guidance in the struggle
to end this deadly disease. Thank you very much.
STATEMENT OF DR. HELENE GAYLE, M.D., M.P.H. DIRECTOR,
NATIONAL CENTER FOR HIV, STD, AND TB
PREVENTION, CENTERS FOR DISEASE CONTROL AND
PREVENTION, DEPARTMENT OF HEALTH AND HUMAN
SERVICES
Senator Specter. Before going to the first round of
questioning, as a matter of timing for the hearing, I want to
turn now to Dr. Helene Gayle.
I hope you can stay, Ms. Migden, for the round of
questioning.
Ms. Migden. Yes, sir.
Senator Specter. Director of the National Center for HIV
Sexually-Transmitted Disease and TB Prevention at the Centers
for Disease Control and Prevention, Dr. Gayle also serves as
AIDS Coordinator and Chief of the HIV-AIDS Division for the
U.S. Agency for International Development. She received her
medical degree from the University of Pennsylvania.
Thank you for joining us, Dr. Gayle. And we look forward to
your testimony.
Dr. Gayle. Thank you. I am proud to have been a resident of
your State for a few years. I am not currently still the
Director of Programs at USAID. That was a previous life. I can
only do one job at a time.
It is a real pleasure for me to be here with you. And
because my time brief I will not go into as much as I would
like to in terms of how appreciative I am to you for your
leadership and for being here for this hearing, and for the two
of your colleagues, Congresswoman Pelosi and Senator Boxer, who
are here with you. I can't say enough about the leadership that
both of them have shown in this epidemic and how proud they
make me to be a woman.
Let me to start by saying that I think this is an important
hearing at a very important time when the issue of investment
in prevention is perhaps more important than ever. The AIDS
epidemic has changed considerably since it first began in 1981,
and many of the data are well-known. We will provide you with
kind of an overview of current data.
But we know that the declines in AIDS deaths have been
impressive, 62 percent from 1996 to 1998. And the decline in
AIDS cases, 29 percent from 1996 to 1998, have also been
encouraging. And a lot of this reflects the investment that we
have made in research into new therapies and in care and
treatment. And so it is encouraging that the new highly-active
anti-retro viral therapies have really made a big difference in
the lives of people with HIV.
We feel the bottom line is that same sort of investment
made in prevention would also yield similar results. We have
made a lot of change in new infections. We went from 150,000
new infections in the mid-to late 1980s to approximately 40,000
new infections today. However, that 40,000 new infections is
the same number that we have had for several years now.
And we also know that, while the number of new infections
has changed, the demographics in the populations affected have
diversified and have changed. We know that, for instance, 50
percent of new HIV infections are occurring among people under
25 years of age. Thirty percent of new infections are now
occurring among women; 64 percent of those women are African
American. Fifty-four percent of new infections are occurring
among African Americans and 19 percent among Hispanics. And we
published most recently in our MMWR publication that African
American and Latino men now represent the majority of AIDS
cases among men who have sex with men. So clearly this epidemic
is diversifying and the populations are changing.
Our early prevention work targeted the communities most
affected. And at the time the populations were primarily gay
men and injecting-drug users. And we also do a lot to make sure
that the general population understood about a very new disease
that was threatening our society.
As the epidemic has diversified, our efforts have also
expanded to include broader audiences, particularly communities
of color, gay men of color, people living with HIV, youth,
women including pregnant women, people with sexually-
transmitted diseases in communities with high prevalence of
sexually-transmitted diseases, incarcerated populations as
previously mentioned, et cetera.
We know the success of the highly active anti-retro viral
therapy is encouraging, but the availability of these new more
effective treatments is also leading people to believe that HIV
prevention is no longer important. We have a lot of data that
show that people are, in fact, engaging in risk behaviors that
at one point had become less prevalent.
I won't go into all of the data. They are there in the
statement. But, for instance, in a study that was done in San
Francisco looking at a time period of 1994 to 1997 increases in
anal sex went from 57 percent to 61 percent. Men reporting
multiple sexual partners and unprotected anal intercourse
increased from 24 percent to 33 percent. And the largest
increase in that activity was, in fact, in young men less than
25 years of age. And that was also followed with an increase
rectal syphilis.
A study from King County Health Department among men who
have sex with men also showed a rapid expansion of syphilis in
men who have sex with men from a rate of zero per 100,000 to a
rate of 200 cases per 100,000 projected in 1999.
Another study that we did most recently showed that in
people at high risk for HIV 31 percent were less concerned
about becoming infected with HIV because of the new treatments.
And 17 percent said they were less safe about sex or drug use
because of new HIV infections.
I won't go on in great detail because I see the red light
is on. But I just would say our efforts are continuing to
diversify. We are continuing to work with new partners. We
understand that our efforts have to work with a broad range a
cross-section of society.
We continue to have our community planning process which
involves the community in decisionmaking and targeting
resources as our main centerpiece for the funds that go through
local and State health departments.
However, we have continued to expand and work with
community-based organizations, nongovernmental organizations,
faith-based organizations, correctional facilities and a
variety of other civic and business organizations.
Clearly the good thing about prevention is that we know now
more than ever what works, and we will give you a compendium
that we have released on programs that work and that we know
make a difference. The flipside of that is that we don't feel
we are doing enough to make sure that the programs that work
get to the populations that need them the most.
We feel a lot of this has to do with a variety of things
that keep us as a Nation from moving forward ahead in
prevention as we should, things like a lack of resources, AIDS
stigma, policies that limit some of the proven public health
interventions, lack of female-controlled options and, perhaps
most troubling, the complacency that we are seeing, not only at
an individual level, but also had a societal level. I think we
have got to work on all those things at the same time that we
make sure that we have adequate resources to do the job of
really investing in prevention for this nation.
Thank you.
Senator Specter. Thank you very much, Dr. Gayle. Your full
statement will be made a part of the record, as will Ms.
Migden's.
Let me begin with you, Dr. Gayle, on a study which you
refer to in your written testimony published in the
Philadelphia Inquirer, 2 weeks ago today, on a CDC study of
some 1976 people where the results were curious that, ``With
the new medications people have become less concerned about
contracting HIV with the statistics showing 31 percent were
less concerned about becoming infected and 17 percent were less
careful.''
How do we combat that? We certainly do not want to retreat
on our efforts to find a drug therapy to combat HIV. So what's
your recommendation from CDC, which offered a study?
Dr. Gayle. Yes. I think what that study says to us is that
we have to make sure that we have a balanced approach to this.
I think people in our society in general want to find quick
easy fixes to health problems. Anytime you are talking about a
health problem that requires sustained behavior change that is
not a quick, easy fix.
I think when the new therapies were first announced, there
were media stories all over that said, ``End of the epidemic.''
And I think people really did start to think that we had found
a cure and that HIV was no longer a serious disease.
I think we should be very, very happy that these new
therapies have made HIV a much more controllable disease than
it was, that it has improved quality of people's lives. But it
is still is a very serious disease. It is still life-
threatening. It is still costly. The regiments are very
expensive and complex. And they don't equate with people no
longer being infectious, or they don't equate with HIV no
longer being a serious disease.
So I think we have to give people the balanced message
that, yes, it is good that we have these better, improved
therapies; yes, they have made a difference in people's lives
and that should be an encouragement. But we also have to make
sure that we have in place services to sustain safe behavior
and understand that that is not a one-shot deal, that that is a
long-term effort.
We see that in young gay men for instance. We know that San
Francisco is a good example where gay men had changed their
behaviors. But that was one generation of gay men. We can't
assume that you do prevention once and that it's over.
Senator Specter. Let me move on to Ms. Migden and come back
to you for another question.
Dr. Gayle. Yes.
Senator Specter. We have a limited amount of time with a 5-
minute allocation.
You have been on the scene for long while, Ms. Migden, and
I would be interested to know if you think there has been any
discernible improvement in the San Francisco community as we
have very substantially increased the funding in so many
directions?
Ms. Migden. Yes, we have because the number of cases
projected for next year for HIV conversion, I think, is under
500. And if that is correct for Mr. Barnes, and whereas that
still sounds like a striking number, and it is, as I said when
the disease originally emerged here it was only from gay and
bisexual male behavior. Over the years we realize IV drug
addicts were also at risk and women and racial minorities that
have added to it. So we have been somewhat successful with an
older generation of the first folks afflicted in getting that
message across.
I'll tell you what's alarming to me, sir. I think it is
important for the government step in. I was concerned when the
Ryan White Foundation closed and other charities closed, so we
have had difficulty keeping the momentum of interest and the
public and the volunteers involved.
I want to just capitalize on something Dr. Gayle said,
which are of the 900----
Senator Specter. Could you be brief? I want to come back to
Dr. Gayle for one more question.
Ms. Migden. One minute.
Of the 900,000 people that are afflicted with AIDS, you
know, there's a third or more people that don't even know they
have it. So there's a problem with prevention with those that
have it that aren't even aware. Let alone, let us direct
efforts to those most likely to be at risk.
Senator Specter. OK, before my red light goes on.
We have quite a number of programs. And the thought occurs
to me is whether we are making it a proper allocation on
prevention, versus research, versus pharmaceuticals. And you
have quite a number of different agencies at work directing
their own specific attention. And perhaps it is a congressional
function. Perhaps it is this subcommittee's start to make an
allocation.
What is your judgment as to whether there is an appropriate
balance in prevention, versus research, versus pharmaceutical
application, et cetera?
Dr. Gayle. Yes. I think to make a difference in all the
arenas that we need to make a difference in there needs to be a
comprehensive approach. And I think that means that there needs
to be as close as possible equal investment in prevention as
there is in the other areas. We have not had an equal
investment in prevention.
I think it is telling that if you look at the Federal
budgets over the years, and if you trace increase in Federal
budgets by agencies that work on HIV, and you look at declines
in deaths, and declines in AIDS cases, and declines in new
infections. New infections have plateaued at the same time that
the prevention budget has essentially plateaued and stayed
stable as opposed to budgets that relate to research and
treatment, which have grown exponentially. And those are where
we have had the greatest impact on deaths and new AIDS cases.
So I think while we can't say it is necessarily cause and
effect, I think there's clearly a relationship between the
investment that you make and the impact that you have on
different segments of this epidemic or different components of
this epidemic. I think if we want to make an impact on
prevention we need to invest in equal, or close to equal, in
prevention.
Senator Specter. Thank you, Dr. Gayle.
Senator Boxer.
Senator Boxer. Thank you very much to both our panelists.
And I am very proud of the work you do.
And, Carole, for us to have you in such a high position in
the State Assembly, we are just very fortunate.
And, Senator Specter, this is a person who is like you in
terms of seeing a problem and solving it or trying to solve it.
And I am glad that you two got a chance to meet.
I wanted to just point out, given the facts that have laid
out in terms of the number of cases and the changing face of
AIDS, that anyone who goes around saying, ``There's no more
AIDS,'' is doing a tremendous disservice to us. And I don't
know if anybody in the audience who wants to yell at me, but
bottom line is, you know, it is a little intimidating to have
that kind of screaming focused on you. Nancy is much more used
to it. But it is just counterproductive, plain and simple.
And when you talk about people saying, ``maybe the epidemic
is over,'' it sure doesn't help to have a whole group of
people, who I believe are quite well-intentioned, telling
people that, in fact, you know, there is no more AIDS.
So we have to say, if nothing else comes out of this
particular hearing, we believe that the face of AIDS is
changing and we can't take our eyes off the face of it, and we
can't take our eyes off the problem.
I have quick questions in my time.
Dr. Gayle, I have also been interested in the issue of the
transference of the disease from mother to child in utero. And
I worked with the Elizabeth Glaser, Pediatric AIDS Foundation.
And we have had a breakthrough with a new drug called
Navaripine, which costs $4 to administer this drug as opposed
to $80 to administer AZT. I am very excited about it because I
feel, if we look at Africa, for example, where this is an
enormous problem, but even right here in our country, we could
begin to go into areas where there's not a lot of money and we
can make difference.
What is your sense? Do you feel as optimistic as I do about
this drug? My understanding is it has been proven effective in
about half the cases, so we are stopping half the transmission;
is that about right?
Dr. Gayle. Yes. We are very optimistic about our efforts in
eliminating pediatric HIV infection in general. We feel that it
should soon no longer be a public health problem in this
country. We have the means to make it a very, very rare
occurrence in this country.
And I think with a combination of what people already use,
the AZT protocol and perhaps some of the newer therapies like
Navaripine. I think we are too soon yet. We only had a couple
of studies of Navaripine. I think it is important to make sure
that there are no long-term consequences in some of the other
things.
But we do know that, while we have had a tremendous decline
in the number of new pediatric AIDS cases, 75 percent decline
over the last few years, tremendous because of the AZT given to
pregnant women, the women who are remaining who are likely to
transmit HIV to their children are women who come late in
prenatal care so that they aren't able to take advantage of the
typical AZT course which starts earlier on in pregnancy. So
what we are doing is actually looking at women who present to
delivery rooms without knowledge of their status the ability to
actually get their HIV status then and then give them something
like either AZT or Navaripine at that point in time. So we are
really looking at how can you tailor these therapies currently
to the women at greatest risk, those who don't have good access
to prenatal care.
Senator Boxer. Well, thank you, Dr. Gayle. I am----
Dr. Gayle. And clearly for Africa and developing countries
we are looking at that issue where that is even more of an
issue.
Senator Boxer. Yes. I mean, it just seems to me this is an
area of progress, we should all be happy that we have this
breakthrough.
Dr. Gayle. Exactly.
Senator Boxer. Let me ask you, Assemblywoman Migden, in the
remainder of my time, a quick question.
I know that you have legislation which would establish a
unique identifier system for California. Could you explain to
us the problem we have with reporting and how your bill would
help and how I can help you with that?
Ms. Migden. Thank you very much, Senator Boxer.
The CDC, of course, has instructed all States to develop a
surveillance plan either by using names or unique identifier
codes. We worked very hard to craft legislation last year that
made it to the Governor's desk. He supports the policy of a
unique identifier code. This is controversial. The State of
Maryland uses a unique identifier. That is, identifying
patients by numbers as opposed to by names.
This, of course, is terribly important because we don't
want to dampen the willingness of people at risk to come get
tested as this would affect gay discrimination. We felt that
that would hinder our efforts to get a collection. This has
nothing to do with notifying partners. All those systems are
well in place.
The Governor asked us to work this year on the budget to
identify $2 million which he hopes will be forthcoming from CDC
for purposes of instituting a unique identifier system and have
our HIV surveillance program in place.
I also just wanted, a little point, that we had a piece of
legislation last year that passed that gave HIV tests
voluntarily to pregnant women. I know you had a concern, and
that is something that California stepped forward with at
first.
Senator Boxer. Good. Thank you.
Senator Specter. Thank you, Senator Boxer.
Congresswoman Pelosi.
Ms. Pelosi. Thank you very much, Senator Specter.
What a wonderful start of our official formal part of this
program. Because how well we are served in our community by
having Assemblywoman, Chairwoman Migden as Chair of the
Appropriations Committee in her first term. That's pretty
remarkable. That is impressive. And she knows this issue
chapter and verse sadly and the issue is well-served by her
leadership there.
And Dr. Gayle, it is a family affair for her in terms of
international leadership. She and her brother Jacob have played
in all of this and in prevention, of course, at CDC. Dr. Gayle,
we all are greatly in your debt.
I just want to ask a couple really quick questions. But
following upon something you asked, Senator Specter, about how
are things in San Francisco. We have been a model for
responding to this epidemic. So many people who are diagnosed
elsewhere come here. Therefore, they are not in the formula for
the money that we get for the Federal Government.
I just wanted to point that out to you because when people
are talking about formulas and holding us harmless, and the
rest, you have to recognize that we are carrying, we are doing
a lot of heavy lifting for other parts of the country where
again, people are diagnosed, but they come here. So this is a
very controversial issue even in our own State. And I wanted to
point it out to you.
In terms of people not using behavioral patterns that would
be in furtherance of their good health, we found that people
who have a low level of HIV infection will not develop AIDS.
And this again contributes a little bit to the recklessness of
people then going on and being engaged in unsafe sex. And then
also we find that young HIV-positive people are more than twice
as likely as adults to continue engaging in risky behaviors. So
the need for prevention is very, very great.
The scientists among us had a conference, a retro virus
conference, here a week or so ago. And what they found was that
oral sex may be riskier than thought. And the study reported 8
percent of the 102 cases surveyed of HIV infection among gay
and bisexual men is likely due to receptive oral sex without a
condom. We must provide funding to help people understand this
concept in the research.
I bring that up because I want to put it on the table for
our two witnesses. This prevention has to be very, very frank.
Dr. Gayle. Yes.
Ms. Pelosi. I mean, we can't mince our words on this. The
same retro virus conference findings demonstrate a resurgence
among unsafe sex, among gay men. They are exhausted about
worrying about this for years. And so the need for more money
for prevention, I am glad the administration finally put more
money in, because they always left it up to Congress to do
that. But I still don't think there's enough in the budget.
But separate from the money is the frankness, the candid,
specific to an area. What works here may not work in Iowa, or
Newark, but nonetheless we have to save lives.
So I would invite our two witnesses to say how receptive
you think the State of California would be, or federally, to
the frankness of the message that we must put forth if, for
example, we are talking about oral sex and how much more at
risk people are who engage in that without a condom?
Ms. Migden. I think we Californians, and as you see, are
pretty forthright--we started off with accepting those
messages. You know, Congresswoman Pelosi, something you know
because we really started to mark the epidemic here in the Bay
Area, what we found sadly, Senator Specter, is that some young
gay people felt they got more support in society when they were
zero positive than when they were just identified as gay people
or individuals discriminated by society. So in a very odd away
there was some counter-current forces working that perhaps made
one feel that they are part of a charity, you see, and didn't
encourage enough safe sex.
The thing with safe sex, as Congresswoman Pelosi knows, we
are saying every single time has to be a certain way. So I
think we have to continue to be frank and forthright. I also
think we have to modernize our messages because, you know,
what's called the Gen Y generation now looks at things a little
differently than several sets of generations did years ago. I
think there are people and young people that call for candor
and straightforwardness, and I believe we support that.
The HIV surveillance part I think that is important is to
know your status kind of campaign and that we begin to address
and make sure that everybody gets tested. And the money we are
seeking here is to keep it on a grassroots level. Come in, get
tested and know where you are.
There were jobs discriminations' protections passed last
year by Governor Davis that says can no longer be fired from a
job because you are a gay man or a lesbian. That will help
maybe even in encouraging to come forward and get tested.
But sadly I just want to make the point that, you know, in
societal moves the discrimination certain groups face, and this
isn't exclusive for lesbians and gay men, it affects minority
groups and others, people who feel outside of the process or
went down through the process, sometimes feel more buoyed, and
more welcome, and more mainstreamed, when they're sick they get
sympathy, and when they are healthy they are outlaws or
outsiders.
Dr. Gayle. Yes. Just briefly, since the red light is on. I
think it is important, the point about the ability to do what
we know can make a difference is a high priority for us. I
think while the resources aren't always an issue the ability to
put in place sound science-based prevention programs is
critical. I think that there are oftentimes policy impediments
to doing that.
For instance, we know from all the evidence and from all
the studies that talking the children about sex doesn't
encourage sexual activity. It, in fact, does the opposite. It
encourages young people to have responsible sexual activity and
often to delay sexual activity.
However, there are many people who would suggest that
talking to young people about sex is not a good thing, and that
it actually encourages sexual activity.
So there are examples like that. And I could go on and on
about examples where we know what the science tells us about
what can make a difference in preventing the spread of HIV
where, because of policy challenges, if you will, we are not
able to totally implement that. So I think it is an important
issue. We need to be able to speak openly and honestly about
this disease, how it is transmitted, who it affects. And unless
we can do that, I think we will not be as successful in
preventing the further spread.
Ms. Pelosi. Thank you, Dr. Gayle.
I thought you were going to mention needle exchange there
for a minute, because we know the science is there for
prevention there, as well.
Dr. Gayle. I'll let you mention that.
Ms. Pelosi. And one of the reasons why we have almost zero
transmission from a mother to child is the success of our
needle change program here.
The red light is on. Thank you, Mr. Chairman.
Senator Specter. Thank you very much, Congresswoman Pelosi.
And thank you, Assemblywoman Migden and Dr. Gayle.
When where you at Penn, Dr. Gayle?
Dr. Gayle. I am sorry?
Senator Specter. When were you at the University of
Pennsylvania?
Dr. Gayle. I finished in 1981.
Senator Specter. 1981?
Dr. Gayle. Yes.
Ms. Pelosi. When did you finish, Senator?
Senator Specter. I haven't finished.
Dr. Gayle. Thank you very much, sir.
Senator Specter. Representative Migden, before you leave,
one final question as you depart. I am very much impressed that
you are the chairperson at 3\1/2\ years into your term. And I
am interested in your reaction--although you may have a bias--
not that that would be unusual for any of us--on term limits.
One of the lead stories in the New York Times this morning is
what's happening in term limits throughout the country with
some focus on Ohio.
And I just wondered if you would mind commenting for the
record what you think about it, aside from your rapid rise? I
would like to tell Strom what you think when I get back to
Washington.
Ms. Migden. You tell the great Senator that he's safe. I
oppose them, sir. And without question it gave me a wonderful
opportunity. And I think that is true of many of the newcomers.
What I fear and what I am seeing, sir, in the State House
is there's just a loss of expertise and too much concentration
on campaigning. I run a 2-year term and a maximum of 6 years of
service allowed. So I don't think we develop the expertise and
wealth of knowledge that is necessary to really serve people
well from a macro, long-term perspective.
In California now we are trying to repair our schools. They
have been in disrepair for 20 years. Different sets of us will
struggle. But I fear that long-term really courageous solutions
will be put off because there's really very little incentive to
kind of be bold, step out, do something controversial and also
have the time you need for follow-through.
I am realizing that it takes a good set of years to get
legislation forward. Last year, some that I really cared about,
which took 3 years. And I think that unfortunately it is going
to detract from the caliber of representation.
If one is a young person and wants to come forward to take
a job, a 6-year job, then one is unemployed, I think the best
and brightest might find other careers for a long-term
security.
However, having said that, it is exciting to serve with new
faces and personalities and people and having the
enfranchisement and excitement of the great diversity of
California. But I don't think it is good policy for the people
of California.
Senator Specter. Thank you very much, Madame Chairperson.
Ms. Migden. Thank you very much, sir.
Senator Specter. That's quite a statement coming from the
chairman.
Ms. Migden. Thank you very much.
Senator Specter. Thank you.
Thank you for coming, Barbara.
STATEMENT OF DOROTHY MANN, CHAIR, GOVERNMENT AFFAIRS
COMMITTEE, AIDS ALLIANCE FOR CHILDREN,
YOUTH, AND FAMILIES
Senator Specter. We now turn to our lead witness Ms.
Dorothy Mann, Board Member of the AIDS Alliance for Children
and the Executive Director of the Family Planning Council in
Philadelphia. In her capacity as Executive Director she
oversees programs to prevent teen pregnancy, HIV infection and
other sexually-transmitted diseases; past President of the
National Family Planning and Reproductive Health Association
and serves on the Allen Marker Institute, Board of Directors.
She holds degrees from Bennington College in Vermont and
Columbia University and is a long-standing personal friend of
mine.
Dorothy, we thank you especially for coming. And in light
of the fact that your mother just passed away, we know it is a
sacrifice.
Ms. Mann. Thanks.
Senator Specter. And we thank you for being here and look
forward to your testimony.
Ms. Mann. Thank you, Senator, only for this issue and for
you.
As the executive director of the Family Planning Council my
program serves over 107,000 of Senator Specter's constituents
in Philadelphia. And in addition to our Family Planning
Program, as he mentioned, we get with funding from CDC and
HRSA, the Family Planning Council provides a range of
community-based HIV and STD prevention screening and treatment
programs.
I am also chair of the Government Affairs Group of the AIDS
Alliance for Children, Youth and the Families. And I am also on
CDC's HIV/STD Prevention Advisory Committee.
I have personally known, Senator, about your real concern
for AIDS since 1987 when I joined you and Eartha Isaacs for a
visit to the AIDS program for children at Saint Christopher's
Hospital. Following that visit you became the leading advocate
in Congress for what is now known as title IV of the Ryan White
CARE Act. Today title IV supports comprehensive HIV care
projects for children, youth and families across the nation,
including a program in Philadelphia that is based in my
organization. You have also supported the entire portfolio of
Federal AIDS prevention, care and research programs, and made
increases in those programs possible.
And I would also like to acknowledge Congresswoman Pelosi,
who has been a tireless crusader on behalf of people at risk
for and living with HIV.
We are gathered here because our Nation has become
complacent about the AIDS epidemic. As a direct result of the
Federal investment in AIDS research and care programs, many
people with HIV are healthier and living longer. Some of those
babies, Senator, that you visited at Saint Christopher's
hospital back in 1987 are teenagers now. In fact, that program
now serves 25 teenagers who were born with this virus.
The news about the success of new treatments has led many
people, including those from high-risk groups, to become less
concerned about becoming infected and are more likely to engage
in risky behaviors. This is a complicated problem with no easy
solutions.
Four points:
(1) Prevention to efforts must significantly increase their
focus on HIV-positive people.
HIV is spread from an infected person to uninfected person.
But we have focused our efforts almost exclusively on
uninfected people and have largely ignored those who are
already infected.
I am a member of the Community Planning Group in
Philadelphia. In 1999 our prevention plan, which was submitted
to CDC, in that plan out of every $100 that is spent on HIV
prevention only $2.84 is directly used and designated towards
HIV-positive people.
Let me be clear. I am not advocating laws or policies that
criminalize or stigmatize HIV-positive people or their
behavior. I am talking about interventions that help HIV-
positive people reduce their risk behaviors and protect their
partners from infection.
CDC must have additional resources to address the specific
prevention needs of HIV-positive people. CDC is currently
funding five demonstration projects, including one in San
Francisco, that focus on HIV-positive people. And I would
encourage you to consider devoting an additional $10 million
through the community planning process for this very important
initiative.
In addition HRSA should encourage Ryan White CARE Act-
funded programs to bring prevention into the care setting.
Among the titles of the CARE Act, Title IV has had the most
emphasis on integrating HIV care and prevention.
In our program in Philadelphia reproductive health
specialists seek every HIV-positive woman to provide
contraceptives, screening and treatment for STDs and counseling
regarding HIV and STD prevention. This kind of integrated
approach should be replicated throughout the CARE Act.
(2) HIV prevention must be integrated with STD family
planning and other related programs.
We have to coordinate these programs. We have to integrate
these programs and get over the funding barriers. And we have
such a demonstration project in Philadelphia because there was
report language in the fiscal year 1999 appropriations bill
that allocated $1 million to demonstration projects to
integrate HIV, STD and family planning services. And we do this
in cooperation with our sister council in Pittsburgh.
(3) HIV prevention programs and policies have to be
evidence-based.
We talked earlier about the enormous reduction, 80-percent
reduction in perinatal transmission of HIV. That's because we
had science, we implemented it, and it works. Last year in
Philadelphia, Senator, there were four infants born who were
HIV-positive out of the almost 10,000 births in our city.
(4) I'll mention needle exchange. Science-based policy
needle exchange is not back. It is exactly the opposite. Here
we have politics getting in the way of science. It's
unacceptable. And we have to finally invest our Federal
resources wisely. As a member of the HIV/STD Advisory
Committee, I can assure you that any additional funds given to
CDC for prevention will be spent wisely.
Frankly, if we were in a war, if we were in a real war
against HIV, 40,000 casualties a year would not be acceptable
if we were in a real war. So that leads me to the conclusion
that this isn't a real war against AIDS. We have got to do
more. We have got to do it smarter. And there are all kinds of
people like me across the country willing to help you.
Thanks.
Senator Specter. Thank you very much, Dorothy, for that
very provocative and important testimony.
[The statement follows:]
PREPARED STATEMENT OF DOROTHY MANN
Chairman Specter and members of the subcommittee, good afternoon.
My name is Dorothy Mann, and I am Executive Director of the Family
Planning Council serving over 107,000 of Senator Specter's constituents
in Philadelphia and the four surrounding counties. In addition to our
Title X funded family planning services, with funding from CDC, HRSA,
and other public and private sources, the Family Planning Council
provides a range of community-based HIV and STD prevention, screening
and treatment services.
I am also Chair of the Government Affairs Committee of AIDS
Alliance for Children, Youth & Families, formerly known as AIDS Policy
Center. AIDS Alliance is a national organization that addresses the
needs of children, youth and families who are living with, affected by,
or at risk for HIV and AIDS. It is also my honor to belong to the HIV
Community Planning Group in Philadelphia and the CDC's HIV/STD
Prevention Advisory Committee.
Senator Specter, I would like to begin by thanking you for your
extraordinary and ongoing commitment to AIDS. Through your leadership,
you have demonstrated that the HIV/AIDS epidemic rises above politics.
It's a crisis that we all face, and we all must be part of the
solution.
I have personally known about your real concern for AIDS since
1987, when I joined you and Eartha Isaacs for a visit to the AIDS
program for children at Saint Christopher's Hospital in Philadelphia.
Following that visit, you became the leading advocate in Congress for
what is now known as Title IV of the Ryan White CARE Act. Today, Title
IV supports comprehensive HIV care projects for children, youth and
families across the nation, including a program in Philadelphia that is
based at my organization. You have also supported the entire portfolio
of federal AIDS prevention, care and research programs, and made
funding increases for these programs possible.
I would also like to recognize and thank the other national leaders
in the fight against AIDS who are here today, including Senator Boxer.
Last, but certainly not least, I would like to acknowledge
Congresswoman Nancy Pelosi, who has been a tireless crusader on behalf
people at risk for and living with HIV/AIDS.
I always welcome an opportunity to travel to San Francisco. But
today is not a happy occasion. We are gathered here because our nation
is becoming complacent about the AIDS epidemic.
As a direct result of the federal investment in AIDS research and
care programs, many people with HIV are healthier and living longer.
Believe it or not, some of those babies you visited at Saint
Christopher's back in 1987 are teenagers now. In fact, that same
program now serves 25 teenagers who were born with the virus. If it
were not for the powerful new treatments for HIV disease, many of these
extraordinary young people would not be alive today.
Unfortunately, news about the success of the new treatments has led
many people, including those from high-risk groups, to become less
concerned about becoming infected with HIV and more likely to engage in
risky behaviors. This trend threatens to reverse much of the progress
that we have made in fighting the epidemic.
Can we turn back this rising tide of new infections? I believe the
answer to this question is yes. But it will require bolder leadership,
increased funding, and smarter allocation of our resources.
This is a complicated problem with no easy solutions. In the few
minutes I have, I would like to focus on four specific points:
(1) The prevention effort must significantly increase its focus on
HIV-positive people.--It goes without saying that HIV is spread from an
infected person to an uninfected person. But we have focused HIV
prevention efforts almost exclusively on uninfected people, and we have
largely ignored those who are already infected.
As I have mentioned, I am a member of the HIV prevention planning
group in Philadelphia. In the 1999 prevention plan that we developed
and CDC approved, HIV-positive individuals are not designated as a
priority population. In fact, out of every $100 that is spent on HIV
prevention in Philadelphia, only $2.84 is directed specifically towards
HIV-positive people.
Ignoring the prevention needs of HIV-positive individuals has led
to serious consequences. There is mounting evidence that as people with
HIV are living longer and more active lives, they are more likely to
engage in unprotected sex. I understand that the San Francisco
Department of Public Health recently determined that, in this city, you
are most likely to have gonorrhea if you are an HIV-positive man who
has sex with men, if you are on combination therapy for HIV, and if you
have a high CD4 count. If these HIV-positive men are getting gonorrhea,
that means they are having unprotected sex that can also result in HIV
transmission.
Let me be clear: I am not advocating laws or policies that
criminalize or stigmatize HIV positive people or their behavior. I am
talking about interventions that help HIV-positive people reduce their
risk behaviors and protect their partners from infection.
What can be done about this problem? We must work to break down the
walls between HIV prevention and care programs. Federal agencies,
including HRSA, CDC, and SAMHSA must work collaboratively to reduce
these barriers.
CDC must have additional resources to address the specific
prevention needs of HIV-positive people. CDC is currently funding five
demonstration projects, including one here in San Francisco, to focus
on prevention with HIV-positive people. This is an important step in
the right direction. I would encourage you to consider devoting an
additional $10 million through the community planning process to expand
the scope of the current sites and add six additional sites. I would
love for Philadelphia to be able to compete for some of this funding. I
would also encourage CDC to identify best practices in prevention for
HIV-positive people and work with community planning groups to
implement these programs.
In addition, HRSA should encourage Ryan White CARE Act-funded
programs to bring prevention interventions into the care setting. Among
the titles of the CARE Act, Title IV has had the most emphasis on
integrating HIV care and prevention. At my Title IV project in
Philadelphia, for example, reproductive health specialists see every
HIV-positive woman in care to provide contraceptives, screening and
treatment for STDs and counseling regarding HIV and STD prevention.
This kind of integrated approach should be replicated throughout the
CARE Act programs.
Finally, I must emphasize the importance of efforts to increase the
number of HIV-positive people who know their HIV status. It is
estimated that between one-third and one-half of HIV-positive people do
not know that they are infected. We need to expand access to and
participation in testing so that these individuals can be linked to
comprehensive care that includes HIV prevention.
(2) HIV prevention must be integrated with STD, family planning and
other related programs.--Just as we must eliminate the artificial
barriers between HIV prevention and care, we must also take down the
barriers between HIV prevention, STD prevention, and family planning
programs. HIV, STDs, and unintended pregnancy are all inter-related,
and affect many of the same populations.
We must begin to coordinate campaigns to prevent HIV, STDs, and
unintended pregnancy so that we are sending consistent messages about
sexual health. We must also move toward a more integrated, consumer-
oriented model of services. A teenage girl who walks into a family
planning program should be offered HIV and STD counseling and testing,
and linkage to treatment if needed. Similarly, if she seeks treatment
for chlamydia at an STD clinic, she should receive family planning
services and HIV counseling and testing.
Because of report language in the fiscal year 1999 HIV
appropriation, there are new efforts underway to make this type of
service integration a reality. CDC has allocated $1 million to
demonstration projects to integrate HIV, STD, and family planning
services and messages. The Family Planning Council in Philadelphia in
cooperation with the family planning program in Pittsburgh, is one of
these demonstration project sites. I urge the subcommittee to allocate
at least $2 million in additional resources to CDC for the purpose of
expanding this important initiative.
(3) HIV prevention programs and policies must be evidence-based.--
In 1994, when research showed that treatment with AZT could help reduce
the rate of mother-to-infant HIV transmission, the public health system
mobilized quickly to implement these findings in the field. As a
result, the number of babies born with HIV has declined by about 80
percent over the past eight years. Out of the approximately 10,000
babies born in Philadelphia last year, only four were HIV-infected.
But our success in implementing research findings on perinatal
transmission has been the exception to the rule. Clinical and
behavioral HIV prevention research has yielded many important findings
about what does and does not work, but this knowledge has not always
made it to the front lines of the epidemic. Additional resources should
be given to CDC, HRSA and other agencies to significantly increase the
investment in training and support to programs and communities to
facilitate technology transfer from research to practice.
Scientific evidence should also be the basis for HIV prevention
policies. Unfortunately, that has not always been the case. Politics
has stood in the way of implementing HIV prevention strategies that
have been scientifically proven to work. For example, research has
shown that needle exchange programs reduce HIV infections and do not
increase drug use. Yet there are federal restrictions on funding for
these lifesaving programs. If we are to wage an all-out war against
HIV, we cannot allow politics to take precedence over science.
(4) Federal resources must be allocated wisely.--Reinvigorating our
nation's HIV prevention efforts will require a larger federal
investment in prevention. With the exception of some special funding
from the Congressional Black Caucus initiative, federal HIV prevention
programs have essentially been flat-funded for years now. To his
credit, the President has requested a $40 million increase in fiscal
year 2001 to expand local HIV prevention efforts, including
interventions targeted toward people of color, and to expand the ``Know
Your Status'' campaign. This request is an important start, but it is
not enough. I urge the subcommittee to exceed this requested amount. I
would recommend that a significant portion of this additional increase
be devoted to the three areas I have discussed: expanding interventions
for HIV-positive populations; establishing additional demonstration
projects to promote integration of HIV, STD, and reproductive health
services, and enhancing training which is designed to bridge HIV
prevention research and practice.
We must also invest more in programs such as substance abuse
prevention and treatment, family planning, and STD prevention. An
increase for these programs can contribute to our overall ability to
reduce HIV infections. Science has already shown that STD prevention
can make a major contribution to the decreasing the spread of HIV.
We are all aware that there have been fiscal management and
accountability problems at CDC. But I would urge you not to withhold
increases for HIV prevention because of these concerns. This year, the
CDC HIV/STD prevention advisory committee, of which I am a member,
convened a working group to conduct an internal review of the budget
and priorities of the Center on HIV, STD and TB Prevention. Under the
leadership of Dr. Gayle, with input from the Advisory Committee, this
process will continue to assure that the Center is allocating its
resources wisely and effectively. I am very confident that any new
resources appropriated by the Congress for HIV prevention will be well
spent.
Let me leave you with a final thought. Reversing the nation's
growing complacency about AIDS is a daunting task. But we must do
more--much more--than simply prevent an escalation in the HIV infection
rate of 40,000 new cases each year. Forty thousand infections, over 100
per day, is intolerable. Do we really have a war on AIDS in this
country? If we had 40,000 American casualties in a war, would we find
that acceptable? I hardly think so. The time has come for us to muster
the energy, resources and courage to truly end the spread of this
terrible epidemic. Thank you for your time. I will be happy to answer
any questions that you may have.
STATEMENT OF THOMAS J. COATES, Ph.D., DIRECTOR, CENTER
FOR AIDS PREVENTION, AIDS RESEARCH
INSTITUTE, UNIVERSITY OF CALIFORNIA, SAN
FRANCISCO, CA
Senator Specter. We now turn to Dr. Thomas Coates,
Professor of Medicine, Epidemiology and Bio Statistics at the
University of California here in San Francisco. He also serves
as Director and Principal Investigator of the Center for AIDS
Prevention Studies and Director of the AIDS Institute at the
University. He was among the first behavioral scientists to
conduct research on HIV prevention. B.A. from San Luis Rey
College, California. Master's Degree from San Jose and a Ph.D.
from Stanford.
Thank you for joining us, Dr. Coates. And we look forward
to your testimony.
Dr. Coates. Thank you, Senator and Congresswoman Pelosi.
I would like to start with an apology. Although we in San
Francisco do disagree vehemently with each other it is never
acceptable to cast aspersions on anyone, however vehemently we
disagree with them. You do not deserve what was said to you,
and I apologize for that. You have been champions in this
epidemic, and we thank you.
I also want to thank you especially for what you done at
NIH. The AIDS story is a real success story. And it is because
of the investment in HIV. We have identified the virus. We have
taken the virus apart. We are understanding how it works, and
we have made great progress.
As Congresswoman Pelosi mentioned we did host the Retro
Virology Conference here. It's the most esteemed scientific
conference devoted to HIV and AIDS in the world. And there was
a lot of good news coming out of that conference, but there
were two pieces of grim news. And the first piece of grim news
is that progress toward a vaccine is very, very, very slow. And
the reason is not hard to understand.
Every successful vaccine that modern medicine has made has
been for a disease for which we have natural immunity. With HIV
we need to learn how to invent immunity. We don't know yet how
to do that. But once we learn how to do that it will have
implications, not only for HIV, but for a lot of other viruses
and a lot of other bacteria for which we don't have natural
immunity. So the investment is worthwhile, but it may be one,
two, maybe three generations before we really get a vaccine. So
that means prevention is here and we're also in the long haul.
On November 30, 1999 I sent a letter to President Clinton.
And with your permission I'd like to have it entered as part of
the record.
Senator Specter. Without objection it will be entered.
[The information follows:]
Letter to President Clinton
University of California San Francisco,
San Francisco, CA, November 30, 1999.
Hon. William J. Clinton,
President of the United States,
Washington, DC.
Dear Mr. President: I am writing to present for your consideration
a 10-point plan that, if enacted, would cut new HIV infections in the
US by half. Enacting this bold but realistic plan to save lives could
be the defining legacy of your leadership on HIV and AIDS.
The Center for AIDS Prevention Studies (CAPS) at the University of
California, San Francisco (UCSF), which I direct, is the largest
research project in the world dedicated to the scientific understanding
of HIV prevention. Just as our investments in biomedical research have
yielded important new AIDS therapies, so too has our work in prevention
science-largely supported by the National Institutes of Health (NIH)
and the Centers for Disease Control and Prevention (CDC)--yielded
evidence-based prevention programs known to be effective in limiting
HIV transmission. In short, we now have a broad array of scientifically
validated, evidence-based prevention tools that--if implemented--can
stop new infections.
This nation is at a critical juncture in its response to AIDS.
Although new treatments have allowed more people to live longer with
HIV and AIDS, those advances may be cause for concern as well as hope.
Improved survival has led to a growing and deadly complacency toward
the disease, as well as to more individuals capable of transmitting the
disease living active lives. With the rate of new infections actually
increasing within many communities, the time to employ our knowledge
and prevent new infections is now.
1. TAKE LEADERSHIP
Your administration knows how to take leadership on key issues.
Apply the same zeal to HIV prevention as you have to increasing the
numbers of police officers on the streets and teachers in the
classrooms. Expect results from your health leaders. Talk to the
nation. Push for funding and sound laws. Fight intolerance and
stigmatization. Take charge of a newly invigorated national campaign to
stop AIDS.
2. ESTABLISH NATIONAL GOALS
Articulating bold national goals serves to raise expectations and
mobilize efforts. Strong goals can serve as compass points for our
national efforts and help direct policy changes that need to be made.
Tell the nation that your Administration is committed to cutting the
infection rate in half in three years, to increasing the access to
treatment for those living with HIV and AIDS, and to helping those who
are already infected but don't know it, to get tested. Reducing new
infections by half is entirely possible, but will not be easy. Your
Administration needs to provide strategic direction, ensure national
coordination, and demand results.
3. DEVELOP A RESULTS-ORIENTED ADMINISTRATION-WIDE STRATEGIC PLAN FOR
PREVENTION
Your Administration lacks a coherent strategic plan on AIDS
prevention. Funding decisions are often made agency-by-agency-and
sometimes division by division-rather than in a more effective and
coordinated manner. An Administration-wide strategic plan is necessary
to guide the prevention process, establish measurable outcomes, insure
coordination, and enhance accountability. This Plan must carry with it
a mandate for implementation from you, as well as an annual review
process to determine the extent to which the plan had been carried out.
Such coordination should include the linkage of all HHS agencies
(especially CDC, SAMSA, and HRSA) as well as others in the Departments
of Justice, Housing and Urban Development, and Education.
Establish an HIV prevention bypass budget. Under your leadership,
the Office of AIDS Research (OAR) at the National Institutes of Health
has provided a model for developing budget priorities for HIV/AIDS
research. This model involves the development of a budget that
implements a multi-year strategic plan and bypasses normal agency and
departmental reviews. Such a process helps integrate the prevention
campaign throughout the public health system and encourages the
promotion of a budget that reflects true need.
Your public health leaders must make AIDS prevention a primary
focus. It is absolutely essential that the Secretary of HHS and the
Director of the CDC develop the leadership necessary to forge a
visible, visionary HIV/AIDS prevention policy that is politically
viable and grounded in sound evidence-based programs and policies.
Strategic planning and implementation at the CDC, which must be the
lead federal agency in this effort, need substantial improvement. HIV
prevention resources are fragmented, are used disproportionately for
CDC infrastructure, and are not mobilized to address the changing needs
of a dynamic epidemic. CDC must be supported to lead this effort, and
it must also be held accountable for its success.
4. ESTABLISH NATIONAL STANDARDS OF PREVENTIVE SERVICES
An essential step in our efforts to utilize the new treatments has
been the establishment of ``standards of care,'' HIV treatment
standards that should be followed to insure the best medical result.
We must treat prevention with the same seriousness. HIV prevention
is a scientific effort; years of research and investment by the NIH and
CDC in the area of prevention science have resulted in an array of
effective prevention interventions. The evidence is in. What is needed
now is a national effort, perhaps led by the Surgeon General, to define
``prevention standards of care'' that clearly establish the minimum
standards of prevention services that each at-risk person should
receive. In turn, that will help guide our public health system to do
all that it can to implement those standards and thereby prevent new
HIV infections.
5. COORDINATE MULTI-TIERED NATIONAL EFFORTS
You, as our nation's leader, must bring in and challenge the
private sector to be a more active partner in our AIDS prevention
efforts. You must also fight with us to free our prevention efforts
from the stultifying influence of politics on public health, especially
with regard to restrictions on advertisements in the media. National
media campaigns on issues such as ``Talk to your children,'' ``Know
your status,'' ``Stop the Hate, Stop the Fear,'' and ``Prevention
works'' could go a long way toward advancing the cause of HIV
prevention. Providing a Presidential-level forum for business leaders,
public health officials, and community and scientific leaders would
change the discourse around prevention and provide support for an
effort based on sound public health science and not on politics.
6. INSURE THAT RESEARCH IS USEFUL TO PLANNERS AND PROVIDERS
Close coordination on prevention research between the NIH, the CDC,
HRSA, and SAMHSA will help translate research into practice. Working
together, these agencies can identify gaps in our prevention knowledge,
design and implement research programs to fill those gaps, and
disseminate the research results in a useful format to those doing
prevention. We do not have the luxury of time or resources to be doing
research that is strictly academic. Our efforts must focus on answering
the critical questions of serving those in need with effective
prevention services.
Establish centers of excellence. Mechanisms are needed to link
prevention scientists to community planners. We suggest designating
current prevention research centers like those in Connecticut, New
York, Wisconsin, and California as HIV Prevention Centers of
Excellence. With increased support, these Centers could reach out to
community planning groups, health departments, and community
organizations and help them craft evidence-based prevention campaigns.
In addition, funding to academic and community organizations should be
used to enhance two-way transfer of skills and knowledge as well as
community collaborative research by mandating partnerships between
academicians and practitioners.
Share knowledge of proven prevention methods. Our substantial
investments in prevention science research are of little value if they
are not shared with those that are doing prevention work. Too often,
recipients of federal prevention support are not provided with this
critical information, nor are they required to focus their efforts on
proven interventions. CDC and other agencies must make more vigorous
efforts to insure that evidence-based approaches to HIV prevention are
identified, publicized, and disseminated to health departments and
community based organizations in an accessible format.
Increase the impact of minority researchers. There are too few
prevention scientists from those communities of color most impacted by
this epidemic. More aggressive efforts are needed to recruit and
sustain minority researchers. In addition, that research which is being
provided by African-American, Hispanic, Native-American and Asian-
American investigators must be made available to their respective
communities in a more timely way.
Adapt evidence-based research programs to local community needs.
Research is needed on improving our ability to rapidly adapt prevention
science findings in different populations or in different communities--
no single approach works everywhere, so local epidemics need locally
specific prevention solutions. Evaluations are needed to monitor the
effectiveness and cost-effectiveness of various interventions and to
improve technology transfer so that effective interventions can be
implemented.
7. REDESIGN SURVEILLANCE SYSTEMS TO SERVE LOCAL COMMUNITY EFFORTS
To date, the bulk of our AIDS surveillance efforts have focused on
case-based reporting. There has been considerable discussion of late on
the need to expand our HIV surveillance efforts since AIDS-related data
provide only a partial picture of this nation's epidemic.
Unfortunately, the debate has focused on whether named reporting or
unique-identifier reporting systems will be utilized. In fact, neither
mechanism for HIV case reporting can provide the information needed for
effective HIV prevention planning at the local or national levels.
Instead, we must build surveillance systems that use research
sampling techniques to better estimate HIV incidence, as well as the
expansion of population-based sentinel surveys, the expansion of
behavioral surveillance, and the improvement of the monitoring of drug
resistant strains of HIV. New technologies offer significant promise in
our ability to increase voluntary HIV counseling and testing and our
understanding of the timing of the actual infection. The systems in
place must reflect such capabilities and be focused on providing
community HIV prevention planning groups with accurate and timely
epidemiological data.
8. EMPOWER COMMUNITIES TO IMPLEMENT EVIDENCE-BASED PREVENTION
Increase local funding. Communities across this nation have been
unable to do the planning and service provision needed because they
lack adequate funding. Just as in the areas of education and law
enforcement, to ramp up our AIDS prevention efforts we must increase
our investments. We must expand priority interventions targeting groups
at increased risk, respond quickly to emerging risk groups, increase
our prevention services for persons already living with HIV, and
support safe behaviors through prevention case management.
Evidence-based community planning should be used to distribute new
funds. As with so many issues, effective local planning is at the core
of an effective prevention campaign. The AIDS epidemic in the US is
actually a collection of smaller local epidemics, each of which has
unique characteristics. Prevention funding, including new funds to
respond to the needs of communities of color, must be coordinated
through these local planning and coordinating mechanisms so that
comprehensive, evidence-based programs can be designed, implemented,
and evaluated.
Our current system of funding AIDS prevention must be implemented
through a coordinated partnership of affected persons, community
leaders, and local and state health officials. This is the worthy goal
of community planning, but it will not be realized without support and
leadership.
9. BUILD LONG-TERM COMMUNITY CAPACITY FOR PREVENTION
Community capacity is essential for implementing this plan at the
local level. Unfortunately, many of the communities hardest hit by this
epidemic lack the infrastructure necessary for a sustained response.
While several initiatives are underway to build the local capacity
needed--including the Congressional Black Caucus minority AIDS
initiative you announced in October of 1998--more needs to be done. Our
technical assistance efforts must move from distant providers to long-
term, sustained mentorships by those who know how to build local
agencies. In addition, help is needed in building bridges between these
community organizations and prevention researchers to improve the
connection between our prevention interventions and research projects.
10. REQUEST MORE PREVENTION FUNDING
While the need for sustained HIV prevention efforts has been
growing, the Federal AIDS prevention budget has remained essentially
flat for several years. The best strategic plan in the world will do
little good if there are not the resources in place to implement it. We
must use the current community AIDS prevention planning process to
articulate unmet need so that we have a better understanding of the
level of resources we must seek. Here are some visions of how
additional resources could address some of the previous nine points,
and would accelerate our goal of a 50 percent reduction in new HIV
infections:
--The community planning process has been useful both in prioritizing
interventions and also in identifying unmet needs in
communities. A systematic effort should be made to collect
information about what works, what does not work, and what more
is needed from community planning groups. A special fund could
be established to prioritize these needs and provide additional
funding as needed to fund unmet needs.
--HIV counseling and testing has been proven effective, especially in
reducing risky behavior among HIV infected individuals and
transmission within serodiscordant couples. Enhancements could
include implementing new testing strategies such as rapid
testing and oral testing, improving referral and linkage to
care, expanding outreach and use of mobile units, and increased
emphasis on identifying acute and primary HIV infections.
Passive, clinic-based counseling and testing is not nearly as
effective as active outreach to those most likely to be
infected.
--Researchers have documented the relationship between bacterial STDs
and heightened transmissibility of HIV. However, the historic
split between HIV and STD prevention (and a conflict in basic
philosophies--HIV strongly behavior change and STD steadfastly
traditional biomedical) serves only to allow for undue risk
levels in communities. Integrating these distinct, yet inter-
related, prevention programs is worth the effort it takes: the
links between HIV and STDs should be beneficial to their
eradication, not increased transmission.
--Drug treatment on demand has been proven effective in reducing the
transmission of HIV and other blood-pathogens. Providing drug
treatment on demand in every locale would go a long way to
reducing the burden of drug abuse and the spread of HIV.
--Campaigns are needed to reinforce current prevention messages and
to promote condom use, to increase awareness of the importance
of knowing one's HIV status, to encourage parents to talk to
their children about sexual safety, and to reduce stigma and
discrimination against people with HIV.
--Creative initiatives need to be undertaken to link prevention and
care, as every new HIV infection can only result from unsafe
encounters between infected and uninfected individuals. Making
prevention the standard of care in clinical practice, providing
funds for demonstration programs, and providing reimbursement
for prevention visits could encourage HIV prevention in the
context of clinical care.
--Clearly the need to address the risk reduction activities of people
living with HIV is a national mandate and helping develop more
innovative prevention intervention models for this group is
essential.
--Funds are needed to expand efforts through national and regional
minority organizations, to expand capacity building in
communities, to conduct specialized needs assessments, and to
expand technical assistance in transfer of prevention science.
This goal is best accomplished through coordination with
evidence-based approaches.
Mr. President, it is one thing to live through an epidemic as
devastating as HIV and quite another to write its history. Will future
generations looking back on this epidemic chronicle our achievements or
criticize our failures? Undoubtedly, there will be some of both. The US
and other industrialized countries have made HIV a top scientific
priority. The U.S. budget research budget for HIV/AIDS will climb to
over $2 billion in this fiscal year. The activities of the world's
scientists have led the way to better diagnostics, therapeutics, and
prevention strategies.
Your Administration can be proud of its record on HIV/AIDS care and
research. Your leadership has sustained the successes of the Ryan White
CARE Act, the research program at the NIH, and the global efforts of
USAID. Work with us to add HIV prevention to that list. A strategic,
sustained prevention effort can not only severely curtail the epidemic
in this country, but may also serve as the proving ground for
prevention efforts world-wide. Indeed, prevention may be the developing
world's only hope. Help us prove that prevention works here and now.
Sincerely,
Thomas J. Coates, Ph.D.,
Professor of Medicine and Epidemiology, Director,
UCSF AIDS Research Institute and Center for AIDS Prevention
Studies.
Dr. Coates. It recommends a 10-point plan for reducing the
number of infections in the United States from 40,000 a year to
20,000 a year. And I won't go through all of the 10 points
because I don't have time. But we do recommend developing a
results-oriented administration-wide strategic plan for
prevention. We do ask for coordinated multi-tier efforts. We do
ask that research be useful to planners and providers.
Another part of the success story of the NIH, the research
success story, is in HIV prevention. We have invested some
$200, $250, $300 million a year in prevention. We have proven
effective techniques.
And we want you to push the NIH and the CDC further to
bring research together with community planners and service
providers in new and novel ways by establishing centers of
excellence, by sharing knowledge of proven prevention methods
and by increasing the impact of minority investigators.
We also request more prevention funding, our last point,
and talk about a number of areas in which increased investment
would be worthwhile. I won't go through those in detail but
they are in the record. And there are plenty of places for
investment.
Dorothy Mann mentioned HIV-infected people and that there's
only one way that infection can spread, from the infected to
the uninfected. We do need services for HIV-infected people.
But we also need leadership from Congress to make it safe for
HIV-infected people to identify who they are and not to
criminalize the exposure of someone else to this disease. That
will only drive people underground. It's very easy to get
stigmatizing and moralizing and judgmental about the ways in
which people might expose other people to HIV. But believe me
it happens for a variety of reasons. And I say this as a person
living with HIV myself and someone benefiting from this
science. My life is long and of good quality because of the
medications I am taking. But the HIV-positive community needs
to be challenged to take responsibility. But we also need to
make it safe for people to do that.
The last point I would like to make has to do with the
global issue. And I know that this is not necessarily the
purview of your Committee, but I do want to make the point.
Across the e-mail this week came this thing that said
``Health warning.'' Think about one passenger jet--and we had
the Alaska jet crash--crashing every hour of every day, all
year long, killing everyone onboard. Well, that is how many
people died of AIDS in Africa in 1999. One jet, every hour of
every day.
Now we get sort of numbed by these numbers. We have gotten
kind of used to these numbers. OK, HIV is there; it is in
subSaharan Africa, and it is getting worse. And it almost
becomes staggering, and we don't know what to do about it.
Well, the truth is that the reason that HIV is spreading so
rapidly is not because of lack of know-how. We know how to stop
the spread of HIV. The science from the NIH has given us plenty
evidence-based prevention strategies.
The problem is resources. Senator Boxer's bill, Ms. Lee's
bill is a start. But if we were willing to invest $2.5 billion
a year in the developing world--and right now the investment,
the U.S. investment, is $145 million. That's all we send
overseas. If we were willing to increase that to $2.5 billion,
we could decrease the number of new infections in the
developing world by half.
When the future writes about this era of the epidemic they
will commend us for many things. They will commend us for the
contribution we have made to science, enormous, unprecedented
in the world. They will say that we did a great job of taking
care of people with HIV. But they will really take us to task
for our failure to cut the number of infections in half in the
United States and to really invest heavily in the developing
world because this carnage doesn't need to happen.
Thank you.
Senator Specter. Thank you very much, Dr. Coates. We are
going to come back to that issue and some of the others in the
question-and-answer period.
STATEMENT OF DORETHA FLOURNOY, EXECUTIVE DIRECTOR, AIDS
PROJECT OF THE EAST BAY
Senator Specter. We now turn to Ms. Doretha Flournoy,
Executive Director for the AIDS Project for the East Bay,
Oakland; Board of Directors of the National Minority AIDS
Council and Co-chair of the African American State of Emergency
Task Force. She also Co-chairs the Bay Area Black AIDS
Collaboration. She holds an ABD in Clinical Psychology from
Penn State, M.S. in Clinical Psychology from San Francisco
State University and a B.A. in Psychology and Public Health
from the University of California Riverside.
Thank you for joining us, Ms. Flournoy. We give you the
floor.
Ms. Flournoy. Thank you. I must say that I am very honored
to be here. This is the first opportunity that I have had to
speak in this type of forum and to be in the presence of such,
what I call, large people, people who have a great deal of
influence over what happens both nationally but also in the
individual lives of the people that I serve.
And I must also sort of admit that being here is sort of an
intimidating process, you know, watching the professionals talk
about what they know to be true about AIDS and people who have
done research and know the ins and outs of treatment issues for
people living with HIV. And even with all that I have done I
sit here somewhat in awe, you know, intimidated by the process,
and the people, and the systems that are created to meet the
needs of the very people that I serve.
And I only imagine what it is like for the young man
sitting on the corner who doesn't have a job, and didn't finish
school, and doesn't know that he can go to his health provider
and get the services that he needs, or the young mom who is
overwhelmed with, you know, three or four kids, where the kids
are in, you know, dangerous settings at school. And she's
living in a drug-infested community and when she goes to the
hospital doesn't feel as if her doctor is hearing her, and that
the medical providers there don't have time for her. I can only
imagine what they must feel in trying to access this kind of a
system to get their needs met, to get their voices heard.
And so as I was sitting in the audience I just kind of
thought about it. And I said, ``Wow, who speaks for them at
this table? You know, where is their voice?'' And so, you know,
whereas I have had a great deal of experiences I am going to
make that effort to do that for them. And I must say, too, that
I have considered it a privilege to serve as the executive
director for AIDS Project of the East Bay.
But I didn't start there. You know, I was thinking this
morning about where I started in the process of helping people
make changes in their lives. And I remember sitting in the park
in Watts watching the drug dealers and people addicted to drugs
and watching, you know, issues of domestic violence kind of
splashing through the community. And also, you know, watching
in my own family, you know, people dealing with poverty issues
and struggling through school. And, you know, folks have died,
you know, just without AIDS, without dealing with AIDS at all.
And I made a commitment then, you know, at the age of 11,
12 that I would engage the process, that I would do what it
took to help people make individual change. And as I have gone
through school, and as I have had experiences working as a
clinician in the Watts Health Foundation, in community mental
health settings, and doing outreach in Marin City, and the
like, under other circumstances beyond AIDS I realize how
difficult it was to help people make individual change.
We keep talking about systematic changes here. We talk
about funding streams. But really to get a person to make an
individual change in their behavior is a daunting thing. These
folks are overwhelmed with issues, the issues that I have just
raised, you know, substance abuse issues, domestic violence,
feeling alienated from systems that are supposed to help them,
not having access and opportunities that could change their
life circumstances and walking away from a table without hope,
without hope for their lives, without hope for their future,
without hope for their children, and just surviving from day-
to-day.
And here we come, here comes AIDS. Now one more thing to
put on the plate of these people who are already overwhelmed,
already suffering, already going through. And we want them to
change the very behaviors that give their life meaning in the
moment. And that is a difficult task. It's a difficult task. I
think that from a prevention perspective that--and we provide
prevention to over 20,000 people annually.
But when we have to sit down with an individual and start
talking about the specific changes that they need to make in
their lives these other factors weigh heavily in that process.
It weighs heavily in their ability to consistently maintain the
use of a condom. It weighs heavily in their ability to talk to
their partner who may have the very resources that they need to
survive about their own risk and their ability to protect
themselves. All of those things impact our clients, and we have
to work on those things.
We have used the strategies that have come from San
Francisco as best as we can. The population I serve is over 76
percent African Americans. And yet in Alameda County we still
have the highest rate. African Americans still bear the burden
of the disease.
So for us change goes beyond just a scientific knowledge of
what it takes to prevent AIDS. We are talking about social
changes. We are talking about economic changes. We are talking
about empowering people to change their own outcomes and then
to feel good about their lives enough to protect themselves.
I have actually had people say to me, ``Why should I get
tested? What is it going to change in my life? And if I die
early it might be a good thing.''
So, again, I thank you for allowing me to sit at this
table. But just know that what we do is difficult. And as a
provider, as a grassroots on-the-ground provider, that the
support that we get from you all is critical. Whenever you
change modes, we change. We have to change strategies, we have
to change staff, we have change.
PREPARED STATEMENT
So if we had a consistent commitment to this fight that
goes beyond just the scientific knowledge, that goes into the
lives of people that are being impacted, that will create the
greatest amount of change.
Thank you.
Senator Specter. Thank you very much, Ms. Flournoy. That
was very eloquent. We'll come back to some of those issues when
we have the question and answer.
[The statement follows:]
PREPARED STATEMENT OF DORETHA WILLIAMS-FLOURNOY
AIDS Project East Bay (APEB), located in the heart of Oakland,
California, is the largest AIDS-related agency in the East Bay region,
and the only organization in that region devoted exclusively to
providing services and prevention programs that target HIV and AIDS.
APEB provides services to approximately 1,000 clients who have HIV/
AIDS, and its prevention messages reach approximately 20,000 persons
annually, persons who are at risk of becoming infected with HIV or with
transmitting the virus. Among the services APEB provides are
psychosocial case management, housing case management and direct
housing assistance, entitlements and public benefits advocacy, peer
advocacy, treatment advocacy, and the provision of direct emergency
services. Of APEB clients, 85 percent are people of color. Seventy-five
percent are African American. One-half are heterosexual. Over half are
active or recovering substance users. Over one-third are homeless or
marginally housed, and 30 percent are women.
APEB operates extensive prevention programs that target African
American men who have sex with men (MSM's), transgendered persons, gay-
identified youth, and non-gay-identified youth. The prevention programs
reach over 20,000 persons in many areas, but particularly in the East
Bay. Alameda County, located in the East Bay, and the nation as a
whole, have experienced HIV/AIDS moving aggressively into communities
of color. Nationally, African Americans are about 13 percent of the
population, but comprise over 40 percent of all new AIDS cases. When
all communities of color are considered, persons of color account for
nearly, and perhaps more than, the majority of all new AIDS cases.
Recent data from 1998 indicates that among men who have sex with men,
people of color have surpassed non-whites to become the majority of all
newly infected persons. In all measures of health outcomes, people of
color underperform compared to whites. People of color get tested for
HIV later in the progression of their disease than whites, are more
likely therefore to progress to an AIDS diagnosis, and progress to an
AIDS diagnosis more rapidly than do whites, and are more likely to die
earlier than whites, and are less likely to reap the benefits of new
drug therapies. In 1998, APEB and other Alameda County community
leaders, with the help of Congresswoman Barbara Lee, advocated for the
declaration by the Alameda County Board of Supervisors of a state of
emergency in the county's African American population due to the
disparate and alarming impact of HIV and AIDS in the region.
APEB, during the course of providing extensive prevention and
outreach to over 20,000 high-risk individuals has learned a great deal
about the barriers to effective prevention services. The circumstances
in which individuals live their lives will impact their behaviors, and
thereby their chances of becoming infected with HIV, or of infecting
others with HIV. The social ills that the at-risk community suffers
from influence their behavior. The high-risk community APEB reaches
with its prevention programs suffer from poverty, low self-esteem,
guilt over the way they live their lives, or the way society views
their lives, fear, fear of authorities, including the medical
establishment, fear of the stigmas attached to one's HIV status, or
their sexual orientation; and a profound lack of access to mainstream
opportunities, such as education, jobs, health care. People feel
marginalized. All these variables impact one's behavior. If a
transgendered persons, for instance, cannot find work based on his or
her lack of experience, education, or because of societal fear or
discrimination, that person is more likely to need to work in the sex
industry, thus exposing himself or herself to a greater risk of
infection. If individuals are unable to make life changes, behavioral
changes will not be consistent.
We need to maintain and expand our country's commitment to
prevention. The hurdles are severe but through persistence over a
sustained period we can make an impact in changing individual's
behavior and in changing the circumstances of their lives that
influence their behavior. In this way, supportive social services are
in fact an integral and necessary component of an effective prevention
strategy. Finally, even if we make inroads in reducing new HIV cases,
there will be many survivors with HIV capable of transmitting the
virus. Therefore, we cannot afford to reduce our prevention efforts no
matter what successes we may have on other fronts.
STATEMENT OF LONNIE PAYNE, PRESIDENT, BOARD OF
DIRECTORS, SAN FRANCISCO AIDS FOUNDATION
Senator Specter. Our final witness of this panel is Mr.
Lonnie Payne, elected as Chair of the Board of Directors of the
San Francisco AIDS Foundation just last month, a member of the
Foundation's Board of Directors for the past 5 years. Like his
fellow board members he has been personally affected by the
AIDS epidemic, living with HIV for more than 14 years.
He earned his Bachelor's Degree in Voice Performance at the
University of South Carolina and a Master's Degree in Music
with emphasis on opera from Northwestern University.
Mr. Payne is a repeat witness. He was here last July.
Mr. Payne. That's right.
Senator Specter. Thank you for joining us, Mr. Payne. And
we look forward to your testimony again.
Mr. Payne. Thank you.
Good afternoon, Chairman Specter. It's good to see you
again, and Congresswoman Pelosi.
My name is Lonnie Payne, and I am Board Chair for the San
Francisco AIDS Foundation. I am also a person living with HIV.
Contrary to something we heard earlier today my life has been
elongated because of the treatments. If it were not for some of
the treatments I would not be alive today. So it is important
that we understand people truly are living longer because of
the roads we are making with the new treatments and the
medications.
I really want to thank you for holding this field hearing
today.
Two years ago a poster began appearing around San Francisco
that stopped many people in their tracks. Accompanying a
drawing of a young black man were the words ``Racism,
homophobia, which do you prefer?'' The message was simple,
direct, and powerful.
As an African American gay man living with HIV, I believe
the poster spoke with startling precision to the reality that
many gay and bisexual men of color encounter every day of our
lives.
This was initiated by the San Francisco AIDS Foundation's
Black Brothers' Esteem Program. The racism and homophobia
campaign was based on research that was conducted by the
Foundation and also UCSF's Center for AIDS Prevention. It
indicated that racism and homophobia gay and bisexual African
American men experience is a significant factor in HIV
infection.
Facing hostility and rejection within the black community
as well as in society as a whole many of the African American
men who participated in the research study reflected lives
deeply steeped in feelings of isolation and lack of self-worth.
Those feelings, in turn, led to feelings to self-destructive
behavior patterns, including behavior that increased the risk
of HIV infection.
Given this background it was not surprising that the
National Centers for Disease Control and Prevention recently
announced that in 1998 the number of AIDS cases among gay and
bisexual African American and Latino men had, for the first
time, exceeded that among gay and bisexual white men.
It was also not surprising that the CDC specifically cited
homophobia as a significant factor in the risk for HIV
infection among men of color.
As a whole, black gay men have been invisible in the
American society. We have been scorned within the black
community, which often denies our existence as gay men or views
us with open hostility. In the general society, as well as in
the wider gay community where racism is as prevalent as it is
in society as a whole, we often encounter rejection and
marginalization due to the color of our skin.
The effects have been devastating, contributing to rates of
HIV infection among men of color that far exceed those among
other groups.
Some may believe that self-esteem and identity are merely
tangential factors that play only a minor role in the spread of
HIV. This view, however, is difficult to sustain in the face of
mounting data about what affects individual sexual
decisionmaking.
It is now absurd to ignore that feelings of self-loathing,
isolation and worthlessness are core factors in HIV infection.
If we as a society want to have an impact on the number of new
HIV infections, we cannot afford to ignore the core issues.
There is a deadly synergy of homophobia, AIDS phobia and
racism at work, and it is devastating the black community. Some
believe the stigma attached to homosexuality is greater within
the African American community than it is among whites. Others
say the stigma itself is not greater, but rather that black men
must rely more on their community as a source of sanctuary, and
so rejection by the community has a greater and more
destructive impact.
In either case, the result is the same: a powerful fear
that leads men to feel isolated and to remain hidden,
presenting a major impediment to HIV education and outreach
efforts.
PREPARED STATEMENT
In too many instances the African American community has
responded with silence and denial to this plague that is
ravaging its own. The evidence is now clear. No one can claim
ignorance. Prominent public figures, from spiritual leaders to
sports figures, performing artists and politicians must speak
out. The media must do its part to raise awareness. And private
and government agencies must not shirk their responsibilities.
If we are to have the accelerated targeted and comprehensive
response that is crucially needed, all these groups must play
their part. Let us hope that these new grim CDC statistics are
a catalyst for the urgent action that is so desperately needed.
Thank you.
Senator Specter. Well, thank you very much again, Mr.
Payne.
[The statement follows:]
PREPARED STATEMENT OF LONNIE PAYNE
RACISM. HOMOPHOBIA. WHICH DO YOU PREFER?
Two years ago, a poster began appearing around San Francisco that
stopped many people in their tracks. Accompanying a drawing of a young
black man were the words ``Racism. Homophobia. Which do you prefer?''
The message was simple, direct and powerful. As an African American gay
man living with HIV, I believe the poster spoke with startling
precision to the reality that many gay and bisexual men of color
encounter every day of their lives.
Initiated by the San Francisco AIDS Foundation's Black Brothers
Esteem Program, the Racism/Homophobia campaign was based on research
conducted by the Foundation and UCSF's Center for AIDS Prevention,
which indicated that the racism and homophobia gay and bisexual African
American men experience is a significant factor in HIV infection.
Facing hostility and rejection within the black community, as well as
in society as a whole, many of the African American men who
participated in the research study reflected lives deeply steeped in
feelings of isolation and lack of self-worth. Those feelings in turn
led to self-destructive behavior patterns, including behavior that
increased the risk for HIV infection.
Given this background, it was not surprising that the National
Centers for Disease Control and Prevention recently announced that in
1998 the number of AIDS cases among gay and bisexual African American
and Latino men had for the first time exceeded that among gay and
bisexual white men. It was also not surprising that the CDC
specifically cited homophobia as a significant factor in the risk for
HIV infection among men of color.
As a whole, black gay men have been invisible in American society.
We have been scorned within the black community, which often denies our
existence as gay men or views us with open hostility. In the general
society as well as in the wider gay community, where racism is as
prevalent as it is in society as a whole, we often encounter rejection
and marginalization due to the color of our skin. The effects have been
devastating, contributing to rates of HIV infection among men of color
that far exceed those among other groups.
Some may believe that self-esteem and identity are merely
tangential factors that play only a minor role in the spread of HIV.
This view, however, is difficult to sustain in the face of mounting
data about what affects individuals' sexual decision making. It is now
absurd to ignore that feelings of self-loathing, isolation and
worthlessness are core factors in HIV infection. If we as a society
want to have an impact on the number of new HIV infections, we cannot
afford to ignore these core issues.
There is a deadly synergy of homophobia, AIDSphobia and racism at
work and it is devastating the black community. Some believe the stigma
attached to homosexuality is greater within the African American
community than it is among whites. Others say the stigma itself is not
greater, but rather that black men must rely more on their community as
a source of sanctuary, and so rejection by the community has a greater
and more destructive impact. In either case, the result is the same--a
powerful fear that leads men to feel isolated and to remain hidden,
presenting a major impediment to HIV education and outreach efforts.
In too many instances the African American community has responded
with silence and denial to this plague that is ravaging its own. The
evidence is now clear and unequivocal. No one can claim ignorance. The
African American community must end its denial and inaction. Prominent
public figures, from spiritual leaders to sports figures, performing
artists and politicians must speak out. The media must do its part to
raise awareness. And private and government agencies must not shirk
their responsibilities. If we are to have the accelerated, targeted and
comprehensive response that is crucially needed, all these groups must
play their part. Let us hope these new grim CDC statistics are a
catalyst for the urgent action that is so desperately needed.
Senator Specter. Ms. Mann, let me begin with you on a 5-
minute round, and ask you a question in two parts for one
response.
Ms. Mann. I'll try.
Senator Specter. You make a comment that only four babies
born in Philadelphia, out of 10,000, are HIV-positive.
And I'd be interested to know if you think our hospital
visit some 12, 13 years ago had anything to do with that?
I'll ask you the second question after you answer that.
Ms. Mann. Yes.
Senator Specter. Is that the correct statistic, 4 out of
10,000?
Ms. Mann. Yes, I think it is. I mean, I didn't check with
the Health Department on the exact number of births.
Senator Specter. That's a remarkable statistic.
Ms. Mann. I do know that the number four is totally
accurate. That I did get from the Health Department. And in my
head it's 10,000 births. It's approximately. If it's off it's
off by--we had 9,000 births and not 10,000. But it's in the
magnitude, yes. And I think it's direct relationship.
There are two reasons why we have gained such enormous
success in this area. One is very simple. It's the investment
in research. The reduction in perinatal transmission is the
most success we have had in prevention, in my judgment. And we
don't talk about it very much. And we don't crow about it
enough. The fact is the investment in research and NIH started
this process. The results indicated that if you took and
administered medication to a pregnant woman, and during labor
and delivery, and to the infant, that you could use this
spread.
Then what happened, the rest of the Federal Government,
actually some of those jewels, in addition to NIH, responded
appropriately, HRSA and CDC. CDC by issuing guidelines, HRSA by
implementing this at the program level. And, in fact, we have
had an enormous success. And it's sort of the model that needs
to be used in so many ways, of taking the results of research
and transferring it to CARE and to communities and to action.
That technology transfer from what can work is really just not
done well enough. So I think this is an enormous success.
Yes, I think you're introduction to this--and I also have
to say one thing, just as a personal thing I have say, because
everybody should know this--that when there was an opportunity
for you to receive some press attention for that visit you
actually said, ``No,'' that that's not why you were there, that
you were just there doing your job. It was an extraordinary
thing for you to have done. And I know you saw those children
and you spoke to those families. And the programs that we now
have in the Nation are a direct result of that, but not if you
hadn't been there.
Senator Specter. Well, that's sufficient attention today,
Dorothy. Thank you.
Ms. Mann. But it's true.
Senator Specter. Let me pick up on something you said and
integrate it into a question to Dr. Coates because of the
limitation of time.
You are correct when you articulate the proposition that if
we had a war with 40,000 deaths it would be insufficient. And
Dr. Coates talks about $2.5 billion for Africa. And that raises
the lot of collateral issues which we don't have time to go
into. But we have a lot of criticism of our subcommittee on the
allocation of NIH to AIDS, HIV, because of the number of people
afflicted. And as our subcommittee stays clear of making the
allocations strictly so that we don't politicize such a very
important program.
One of our prominent members of the Appropriations
Committee wanted to put $150 million into prostate cancer and
got turned down. And it's been in the public domain as the
chairman of the committee, chairman of the full committee.
So, Dr. Coates, arm me with the best argument can, because
I'll hear it again very soon about why HIV is so much more
proportionately than Parkinson's or Alzheimer's or even breast
cancer?
Dr. Coates. Every disease is a serious disease to the
individual who's afflicted by it and to that person's family. I
think we never get very far when we start pitting one disease
against another and saying, ``My disease is worse than your
disease,'' and ``This disease should get more than that
disease.''
I think what we need to do, particularly in case of the
NIH, is think about the potential of scientific opportunity.
HIV came along at a time when the retro virus had been
discovered. And because of the increased investments we were
very quickly, by 1985, able to have an antibody test against
it, very quickly to develop medications against the reverse
transcriptase enzyme, very quickly to develop drugs against the
protease enzyme and now against the fusion enzyme, and the
integrase enzyme. So we are very quickly moving because of the
scientific investment. So it really is on the basis of
scientific opportunity.
And if we crack the vaccine puzzle, and we will for HIV, we
will learn a lot for a lot of diseases because we will learn
how to make immunity for the first time for a disease against
which we don't have natural immunity. The scientific
opportunity is so great. And I think that's the basis upon
which investments need to be made.
Senator Specter. Thank you, Dr. Coates.
I'm going to yield with the red light on to Congresswoman
Pelosi with the additional comment that we justify in part the
allocations which NIH has made because we have added so much
money to everything else, to Parkinson's, breast cancer,
prostate cancer and Alzheimer's. You talk about the metaphor of
the rising tide and the boats. Well, they're over the bathtub,
really, at this point, from what funding we have added.
Congresswoman Pelosi.
Ms. Pelosi. Thank you, Mr. Chairman, very much.
I was so impressed by the presentations made here. And you
and I have both sat through many AIDS hearings.
But, Ms. Mann, thank you very much for your very valuable
contribution. And Dr. Coates, always. Ms. Flournoy, how
remarkable you are. And Lonnie, of course, he's a tremendous
resource to us, Lonnie Payne. But very important testimony.
I want to just rat-a-tat-tat a few things. First of all, in
terms of the global issue of AIDS, we have been talking about
this for 10 years, at least, about the global aspects of it.
I'm the ranking Democrat on the Foreign Operations Subcommittee
which gives that meager $147 million. And we have to work very
hard to get it.
In fact, I have to say to my chairman, year in and year
out, ``If I don't get that money, I don't vote for the bill.''
Sometimes I don't vote for it anyway. But unless I get the
money, I won't even consider it. And that's a pittance. And we
have been saying all these years, ``Put this on the agenda of
the G7. If you're talking about the economies of developing
countries that you can't talk about them unless you talk about
AIDS.''
So years later, so many people lost to us, now all of a
sudden it's been discovered by the United Nations. What have
they been doing all these years? All the a sudden it's on the
agenda, and everybody is celebrating. I said, well, welcome to
the world of the alive. This is no secret. It's been no secret.
So I think that we have been as a country and as a society
enormously delinquent not only at home but on the international
AIDS issue which has been so obvious.
And in our community the mobilization against AIDS, which
has been mobilizing on the AIDS issue domestically for years,
years ago changed their mobilization to international AIDS
issues.
So this is a tragedy and it is a missed opportunity of
lives lost and the ability to hold this thing in check a long
time ago. OK, so we have that.
Now we have--and you talked about $2.5 billion and our
measly $147--now they're asking us to do $1.5, $1.6 billion for
Colombia to fight to win the war on drugs. And we know what the
relationship to intravenous drug use to the new demographics of
AIDS is. And, again, it's my committee, I'm going to Colombia
this weekend to see what this is about.
And I'm saying, ``If this is about the war on drugs we want
$1.5 million for treatment on demand for prevention and, in our
country, if we are going to stop this drug epidemic, which is
directly related to what we are talking about here because the
new face of AIDS, of course not that new, but is getting worse
among people of color and IV drug users.''
That's why I was very annoyed. We are used to people
disrupting our meeting. It's a matter of course here. But for
five white people to come in here and say, ``The AIDS epidemic
is over,'' I'm sorry. I'm sorry. That is completely--you know,
I lose patience with that.
So I'm glad that you enlarged the issue, Ms. Flournoy, and
all of you about the context with what it just is. When we talk
globally we are not only talking geographically globally, but
globally in terms of this issue in the context in which it
takes place.
And I was pleased that--Senator Specter and I were the only
two--well, I was pleased that we were the only two--but I was
pleased that we were there when the President rolled out the
minority AIDS initiative last year. Everyone there was from the
Congressional Black Caucus. But we were recognized for our work
in helping to fund that. It's not enough money but it will
hopefully make a difference. And that's why I, when I went to
Congress, this is the Subcommittee that I had to be on because
of our community.
Any of you can comment on that. But, Dr. Coates, I wanted
to ask you specifically, how much money to you think is needed
reduce the number of new infections from 40,000 to 20,000?
Dr. Coates. Well, I'd be happy to follow with a more
detailed accounting. But we think an additional $380 million a
year in the HIV prevention account could do the job, going for
things such as treatment on demand, Federal funding of needle
exchanges, greater condom availability, buying air time to
advertise condoms and such, linking investigators, preventive
research centers such as our own with local communities. About
$380 million a year.
Ms. Pelosi. Would save 20,000?
Dr. Coates. Would save 20,000 lives.
Ms. Pelosi. When you say, ``treatment on demand,'' are you
talking about for IV drug use?
Dr. Coates. IV, drug treatment on demand, because every
day----
Ms. Pelosi. So you're establishing that relationship for
us?
Dr. Coates. Exactly. Because every day a drug user is in
treatment is one less day that that person is infecting someone
else, if that person is infecting, or getting expose.
Ms. Pelosi. I appreciate that, thank you.
Dr. Coates. But we'll send more detail.
Ms. Pelosi. And any other documentation that you would have
would be good.
I invite our witnesses to make any comments--oh, I guess my
time is up.
Senator Specter. Yours is, but theirs isn't.
Ms. Pelosi. No more questions from me, but, please.
Ms. Mann. I would like to make one comment. I've been in
these vineyards of at least preventing unintended pregnancy for
forever, it seems. And one of the things I remember several
years ago was in the beginning of this notion about preventing
teen pregnancy, that somehow if I had in my program any hope of
preventing teen pregnancy I had to solve every societal problem
you could name.
Well, guess what, we are really succeeding in reducing teen
pregnancy because we know what works. We know what to do. We
haven't solved society's problems. It worries me sometimes when
we think we can't get anywhere unless we do everything and fix
everything. That's not the way these things work. We do know a
lot about what to do. And we can do better, and we are doing
better.
So I really just want to put the notion that 40,000 people
are newly infected every year in this country--I was, in my cab
ride very late yesterday, or early this morning, from the
airport to here, the cab driver asked me what I was doing here.
And I told him.
And I said, ``One of the things that the real problem is
that we get 40,000 new infections a year.''
He said, ``We do?''
That the general public in this country has no idea what we
are, in fact, accepting among our people. They have no idea. I
can't figure out why we are not telling them. And he was
astounded that that would be the case.
And I really think that we have gotten complacent about
this disease in a lot of ways. And I really hope that not only
through much greater financial investment in prevention but
also somehow a greater public awareness of the numbers of
people that keep getting this disease will raise the public's
consciousness as well as--obviously, you already are there. We
have a lot more people to educate.
Senator Specter. I was not serious when I said that
Congresswoman Pelosi's time was up. She can have as much time
as she wants.
We are going to take a few minutes more, if we may, for
another round because we haven't heard from two of our
witnesses.
I was interested in what Congresswoman Pelosi had to say
about voting for the bill because, as she said, she wouldn't
have voted for the bill anyway.
Ms. Pelosi. No, I might not have.
Senator Specter. And we agree on many, many things but we
have a minor disagreement on whom we wish to control the House
of Representatives next year.
But in the event----
Ms. Pelosi. It's not minor, Senator.
Senator Specter. In the event that Congresswoman Pelosi's
dream comes true I, for one, will be very interested to see how
far her Chairmanship, Chairwomanship, Chairpersonship of the
Foreign Operations Subcommittee will move from $145 million to
$2.5 billion.
Dr. Coates, and your constituent, and somebody may be her
as well as Arlen Specter, so we will see.
Ms. Pelosi. With all the other money added in, we are up to
$190--now. So we only have to multiply it by 1,200 percent.
Senator Specter. One more comment about just a touch of
partisanship. That's a fascinating letter you sent to the
President, Dr. Coates, your 10-point program. It was the only
thing that he left out of the State of the Union speech.
Dr. Coates. I know. I was listening.
Ms. Pelosi. Actually it was in, and then it was out. In the
written initial comments there was domestic AIDS and
international AIDS. And then the surviving product, if I may.
Senator Specter. Congresswoman Pelosi knows a great deal
more about the exogenesis of the State of the Union speech than
I do.
Ms. Pelosi. Well, we phrased what was in there in our
statement written in advance of hearing the speech. And then it
was in there.
Senator Specter. I was one of the few Members who stayed
for the entire speech.
Ms. Mann. And stood up occasionally.
Senator Specter. Ms. Flournoy, let me come back to you for
a question.
You really struck a chord when you talked about victims and
needs--America's voice is heard. And you so accurately talked
about the social economic changes that have to be brought to
bear.
I was a city official for many years, and I remember 1967
when a book was written, Cities in a Race with Time. And the
thrust of the book was that the cities were out of time. And
like Congresswoman Pelosi I've still got some time left and
still watching the cities, still watching Philadelphia and San
Francisco. We are not too far behind San Francisco on the HIV
problem. New York's first, L.A.'s second, you're third and we
are not too far behind in Philadelphia.
But on the issue, the broader issue, of trying to solve
these problems on socioeconomic changes, you're a little
younger. But do you see any improvement? Have we progressed
any? You can't go back to 1967. But do you see improvement up
to now and do you see any realistic hope for improvement,
regardless of who controls the U.S. House of Representatives?
Ms. Flournoy. I think that generally there are populations
of people who have had more access. I personally am a product
of affirmative action and have benefited a great deal from that
experience and have been exposed to life circumstances that I
would have never had. And when I look at my family, in
particular, you know, they have not had that experience even as
a result of, you know, just being in relation to me.
So there are pockets of people who have had a great deal of
success. But I think that you also have a great deal of people
who still feel alienated from the process. I think if you
listen to rap music, that's an indicator right there of how
alienated our youth feel, how out of the mainstream they feel,
how ineffective they feel and the types of strategies that they
are willing to engage in order to make change in their own
lives, or to effect change in the lives of others and to get
the attention of, you know, gatekeepers.
And so I believe that there have been successes. I believe
that the fact that an agency like AIDS Project does exist at
all, you know, is a good thing. You know, there are some
communities that don't even have that type of resource
available to them. But yet still it goes back to the
individual. If the individual is not experiencing the change,
if the individual doesn't feel as if they can control their own
outcomes, then that individual is not likely to engage
consistently in behavior change.
And the sad part about the AIDS epidemic is that even
though we--and I guess you've heard earlier from reports, from
Helene Gayle and others, that we are likely to see this disease
resurge if we don't do something to deal with the psychosocial
issues that are addressing an individual's willingness or
ability to engage in the behavior change. So educating them
about HIV is important. And we have done that in our community.
We are talking to people. When we talk to people. We walk up to
people on the street, ``What do you do to protect yourself from
HIV?''
``I can use a condom.''
``Do you use a condom consistently?''
``Well, no.''
``Are you willing to, you know, say no to the boyfriend
that you have over there who's pressuring you to have sex
without a condom?''
``Well, I don't know about that.''
You know, there's some ambivalence around there. I think
that there's some social issues that need to be addressed in
this disease and especially because it's moving into people of
color communities that have other issues on the table that are
competing with AIDS.
As an organization the CDC initiative was very helpful for
us, extremely helpful for us. I mean, it allowed us to now sit
back and stop operating from a crisis perspective and start
planning for services. And that's actually where these comments
are coming from, because I can see on the horizon the
limitation in what we are able to do if we maintain the kinds
of services and programs that we have now.
We need to link with social organizations, mental health
services, substance abuse treatment facilities, educational
facilities, job training facilities and create an environment
where people who are infected with HIV will feel capable of
managing their lives, now that they are going to live. That's
an issue for us. And I think it will impact our ability to keep
the progression to--decrease the progression of this disease in
people of color communities.
Senator Specter. A final question, even though my red light
is on, Mr. Payne. I'm delighted that you're here again. I'm
delighted to hear that you're doing well. You look good.
Mr. Payne. Thank you.
Senator Specter. With the medicines that you have
available, the pharmaceutical advances.
On this CDC study, which I commented on earlier, where the
availability of the pharmaceutical assistance has led so many
HIV people to be less concerned, less careful, I'd be
interested in your views as to how we cope with that problem?
Mr. Payne. Well, I think it goes back to this breaking the
silence. I think we have to take a personal responsibility to
be able to talk about our HIV status, in some cases, or our
sexual practices. When we talk about the stigma in the African
American community--I'm sure the stigma of homosexuality also
exists in other communities--but it seems to be stronger in the
African American community.
And so if someone is fearful of telling about their sexual
preference, then they are fearful to talk about the practices
that they do. So they are fearful to talk about, ``I might have
put myself in a situation where I might have been with someone
who was infected with HIV.''
So the silence is always there. Now we have to get better.
We have to take a more personal ownership in trying to break
that silence.
One of the things that the San Francisco AIDS Foundation is
doing, we have a campaign that's called, ``The Assumptions
Campaign.'' And everyone knows all of the ins and outs about
safe sex, about how to use condoms, and the like. But our
studies and our program is telling us that people are still
making some wrong assumptions.
They are assuming either someone is not positive or someone
who is negative without having a dialogue. And I think that
particular piece transcends not only the gay community but it
transcends all communities, I think. We have to be able to talk
about what we are doing sexually to stop the spread of HIV.
Senator Specter. Congresswoman Pelosi, another round.
Ms. Pelosi. Well, Mr. Chairman, of course you'll have the
last word. So I'll be brief now because we have to go to San
Francisco General Hospital shortly.
But having this wealth of talent here I would say that it
reminds me how blessed we have been in this tragic epidemic, of
how blessed we have been with the champions, the people who
have taken this issue so seriously, who have dedicated their
careers, if they are scientists, and doctors, and people in the
community at the grassroots level have really risen to the sad
occasion of bringing us community-based solutions and being
very generous in terms of speaking out personally about what it
means to them. It's not only in the African American community
but also in our Asian American and Hispanics or Latino
community in our city.
It has some of the stigma in some of the denial that Mr.
Payne described earlier in the African American community. But
we have been very blessed in our community and very generous, I
think, to the rest of the country.
Many times my colleagues will say to me, ``Why you always
talking about AIDS?''
And I said, ``But what would you do if 15,000 people in
your district died of something? Would you not be in a rage
about this? You wouldn't do anything else but to make sure that
it stops in your own area, but that other people would not have
to suffer through this.
So in terms of the $2.5 billion that Dr. Coates was talking
about, all the money that we spend on AIDS, which I believe is
well spent, is an investment not only in terms of helping to
prevent people from getting AIDS or improving the quality of
their lives with the new therapies. And again Steve Warren, I
know we'll remember the evening that we are fighting for that
$100 million and Senator Specter came through for the ADAP
funding, again not only supplying more money but raising the
base level of the Ryan White and the CARE money.
Senator Specter. At 2 a.m. one day.
Ms. Pelosi. It was something we could not take no for an
answer on it as you know. But, anyway,----
Senator Specter. Who gets the last word?
Ms. Pelosi. In any event the $2.5 billion, as much money as
that sounds and, yes, you can call me on it when the Democrats
are in power. Hopefully, we will have a Democratic President,
as well.
It may sound like a lot of money, but it's a small amount
to pay for the lives that it will save. And we have to, as Ms.
Mann said, educate the public as to why this investment is
important and why, even if you're just doing it from standpoint
of budget, even if you're not even thinking in humanitarian
terms, that it is a good investment and it will save money in
the end.
So although the President didn't have all in the State of
the Union that we thought he might, on the first glimpse that
we saw of it, he did have it in his budget and that's where it
really counts. And I'm so glad for the first time at least
there's a reasonable increase for prevention. I'm totally
dissatisfied, mind you. I mean, it's certainly not enough. But
at least the recognition that we had to go in a different
direction.
So while we do what we have to do at the public policy
level, you would all know that all of that is for naught the
excellent solutions and answers that come from the community,
whether it's dealing as you do, Ms. Flournoy, with people every
day in the way that you do so excellently or in the scientific
community, all of it here has been on the basis of
collaboration, of sharing information, of community-based
solutions, whether it's prevention, care or treatment.
And in the little time that I have left I'd like to yield
to Mr. Payne and Ms. Flournoy again for any insights they might
add to how they think we could be more receptive to what you're
talking about at the community level.
Mr. Payne. Well, mine is brief. I think the key is that we
just need to be sure that the funding there for the prevention
programs that are being developed to be target specific. I
mean, you have to look at the different communities that are
being impacted and gear your prevention programs thinking about
the needs of the people you are dealing with.
And my concern or my fear is that, as we look at the
funding, that we don't take money away from efforts that are
prevention, because we also need the medical attention and the
scientific attention. And this is layperson's viewpoint now. I
mean they are people around the table who I have a lot of
respect for, and I know they know a much more eloquent way of
saying this.
But for me it's very important that every piece of that
puzzle you talked about, whether it's prevention or whether
it's a care, or whether it's the new treatments, has adequate
funding.
Ms. Flournoy. And I think that providing the technical
assistance that agencies need to do the work in an intensive
kind of way. Rather than just applying basic research
strategies and expecting those strategies to solidify
themselves into change in the community, I believe that we need
the technical assistance from those researchers who have
developed these strategies and their way of interpreting or
reinterpreting their findings into a community that lacks
resources, into a community that has not responded to research
practices in the past.
I think this a unique issue in our community and outcome
measures, outcome evaluations will not effectively show what is
happening in the community. And so linking agencies to research
I think is a really important thing. I know that that has
happened with the CAPS, and we are very pleased with that kind
of work.
But I think that when you're trying to translate research
into practice in our communities that those other variables are
going to influence the outcomes. And we are being challenged to
produce outcome data or evaluation data which talks about our
effectiveness of being able to attack this disease. And so I
think that that's going to be the challenge for us.
And again if you continue to support that, if you continue
to support the intensive relationship, the intensive work
between agencies and researchers, I think that that will help
to empower us as agencies to do the work.
Ms. Pelosi. Thank you very much.
Senator Specter. Oh, fine.
Dr. Coates. Senator Specter, may I just make one brief
final statement?
Senator Specter. Go ahead, Dr. Coates.
Dr. Coates. And I would ask that another document be
entered into the record. This is a document called
``Discovering Global Success.'' We invited 400 delegates from
around the world to derive a basic evidence-based prevention
package, so that Chairwoman Pelosi attempts to raise that
battleship, here is the blueprint, and it will be in the
record.
Ms. Pelosi. Thank you.
Senator Specter. It will be part of the record, as will all
of your statements.
Discovering Global Success: Future Directions for HIV Prevention in the
Developing World
[By Stephen F. Morin, Ph.D., Margaret A. Chesney, Ph.D., and Thomas J.
Coates, Ph.D.]
In collaboration with the Participants in The Fogarty Workshop on
International HIV/AIDS Prevention Research Opportunities--AIDS Policy
Research Center & Center for AIDS Prevention Studies.
THE BASIC PREVENTION PACKAGE
The model-country planning process resulted in what constitutes a
basic HIV prevention package. Various elements of the package are given
higher priority depending on the specific characteristics of each
country. These components are not presented in order of priority; the
inclusion of any element and its relevant priority would be established
through a country-level planning process. The basic HIV prevention
package includes the following:
--HIV counseling & testing
--STD Treatment and counseling
--Screening the blood supply
--Basic information & education campaigns
--Youth & school-based education
--Condom availability & social marketing
--Sentinel surveillance
--Targeting those at increased risk
--Clean needle availability
--Treatment to prevent vertical transmission
--Positive policy environments
HIV counseling & testing
Knowledge regarding HIV status is an important component of
preventing further transmission. The availability and promotion of HIV
counseling and testing is an important component of international HIV
prevention activities. Such counseling should be as ``risk free'' as
possible and can be targeted to individuals or to couples or offered in
the context of whatever health care infrastructure exists in a given
country.
STD Treatment and counseling
Because sexually transmitted diseases (STDs) increase the
biological vulnerability to infection with HIV and the potential to
transmit to others, the availability of programs to diagnose and treat
such diseases is an important component of international HIV prevention
programs. Counseling in the context of STD treatment should focus on
methods of HIV risk reduction and may be linked to programs for condom
availability and instruction in proper condom usage.
Screening the blood supply
While the screening of a country blood supply for HIV may be taken
for granted in industrialized countries, funds for such blood safety
efforts frequently run out during parts of the year in many of the
least developed countries. Therefore, adequate funding and planning for
the necessary kits to screen the blood supply should be part of action
plans for counties where the governments can not assure the ongoing
screening to protect the available blood supply. Comprehensive blood
donor and blood component screening should also screen for other
possible bloodborne pathogens. Policies should promote voluntary blood
donation, self-deferral for individuals who perceive themselves to be
at risk, avoidance of indiscriminate blood transfusion, and encourage
auto-transfusion whenever possible.
Basic information & education campaigns
Awareness of HIV and possible modes of transmission are necessary
components of HIV prevention. Particularly with nascent epidemic
patterns, public awareness of the potential threat of HIV as well as
public information on how to avoid infection should be a component of a
comprehensive HIV prevention plan. Education programs and specific
communication plans need to reflect the best strategies for reaching
the general public as well as individuals and groups that may be at
increased risk.
Youth & school-based education
School-based HIV education focusing on life skills and modes of
preventing HIV infection can be an important part of a comprehensive
country-level HIV prevention plan. Because HIV infections are occurring
at very early ages in many developing countries, these school-based and
youth outreach programs need to begin before young people are likely to
be placed at risk of sexual transmission. Education level is often a
predictor of risk for HIV infection in developing countries,
particularly among girls and young women. Policies that promote
education for girls and young women may themselves be a part of a
comprehensive country-level HIV prevention plan.
Condom availability & social marketing
Condom availability is an essential part of preventing sexual
transmission of HIV. Social marketing techniques can both increase the
sale of condoms and promote the understanding of the need to use
condoms properly. Free condom distribution may be a priority in many
countries, particularly coupled with peer education targeted to
commercial sex workers and other groups at increased risk. Careful
efforts may be needed to work through religious group resistance to
condom promotion and distribution.
Sentinel surveillance
Knowing about the prevalence and incidence of HIV infection can be
of assistance in monitoring the epidemic and planning an adequate
response. Surveys of the prevalence of infection in groups that are
believed to engage in high-risk behavior--commercial sex workers,
injection drug users, men who have sex with men, STD patients, and men
in the military--can help identify the pattern of the epidemic. These
studies are generally unlinked to a name or other identifying
information. Such studies among groups thought to be at generally low
risk, e.g. pregnant women at antenatal clinics, can help determine the
extent to which the epidemic has moved to the general population.
Because of limited resources, sampling techniques for surveys at
sentinel sites would generally be the most practical approach in
developing countries.
Targeting those at increased risk
In the case of a concentrated epidemic pattern, it is important to
target limited resources to interventions aimed at those individuals
and groups at greatest risk for acquiring HIV or transmitting HIV to
others. In some developing countries this may involve efforts to work
with commercial sex workers and their clients to promote condom
availability and proper use. Similarly the target group may be members
of the military, truckers or others with increased numbers of sexual
partners. In other countries the epidemic may require working with
injection drug users and their sexual partners to promote the
availability of clean injection equipment and condom use with sexual
partners. Men who have sex with men may also be a group at particular
risk in some countries, in which case those countries must find ways to
target interventions to reduce sexual risk taking. Condom availability
and promotion of proper condom use as well as other techniques to
promote safer sexual practices are essential interventions.
Clean needle availability
Injection drug use and the reuse of needles in medical settings can
be primary vectors of HIV transmission in certain parts of the world
and are becoming problems in more countries each year. The availability
and promotion of the use of sterile injection equipment is an important
intervention to prevent such transmission. An early and aggressive
response to HIV transmission through injection drug use is essential to
prevent extensive further HIV transmission to sexual partners. Clean
needle availability, e.g. needle exchange programs, are best when
operated in the context of a comprehensive plan for preventing the
sexual transmission of HIV and also when referral to drug treatment is
provided.
Treatment to prevent vertical transmission
HIV transmission from infected mothers to their newborn babies is
of particular concern in developing countries. Such transmission may
occur before, during or after birth through breast-feeding. Medical
treatments to prevent the transmission from mother to child are
available in most industrialized countries, but even shorter courses of
treatment may not be affordable in some of the least developed
countries. The availability of voluntary counseling and testing for
pregnant women is a first step along with education on HIV prevention
in family planning clinics. In some cases, alternatives to breast-
feeding may be practical, in other situations such alternatives may not
be available.
Positive policy environments
Different public policies within countries may either inhibit or
promote HIV prevention interventions. The status of women and human
rights protections for people infected with HIV are important to the
policy environment within developing countries. So are policy decisions
about the allocation of resources to address the epidemic. Other more
specific policies, e.g. tariffs on condoms, criminalization of sterile
needle possession, restrictions on content of school-based education on
sexuality, etc., may also inhibit HIV prevention. Country-level HIV
prevention plans may include recommendations to foster a more positive
policy environment.
PRIORITIES FOR INTERNATIONAL HIV PREVENTION RESEARCH
Each of the model-country planning groups developed recommendations
for priority HIV prevention research. The recommendations followed from
identification of areas of research that were lacking as they attempted
to set priorities for HIV prevention interventions in the context of
the model-country. When taken together, these recommendation provide a
description of needs clustered into five general categories:
Global Priorities
A set of urgent prevention research needs with global implications
emerged repeatedly. These are major issues that go beyond our current
research activities.
--How can we accelerate policy changes that promote prevention?
--How can young women in high incidence areas be protected from
sexually transmitted HIV?
--What can be done to respond to gender inequity and lack of
educational opportunities for women?
--How can youth be better protected from HIV infection?
--How can short course anti-retroviral therapy to prevent perinatal
transmission be adapted to meet the realities of developing
countries?
--How can the use of alcohol as a risk factor be incorporated into
HIV prevention planning?
--How do we better understand and remove stigma and find solutions to
HIV-related discrimination?
Effectiveness Research
The effectiveness of prevention interventions needs to be assessed
in terms of specific outcomes in developing countries. These studies
would focus on the behavioral or health outcomes of HIV prevention
interventions. Effectiveness can be assessed by such outcomes as
increased knowledge, changed attitudes or social norms, decreased risk-
taking behavior, and incidence of STDs or HIV-infection. The goal of
these studies is to develop empirical data based on scientifically
controlled studies to inform judgements about effectiveness.
--Does a specific STD treatment program reduce the risk of HIV
infection in a given area of the country?
--Does any given public information campaign change the level of HIV
knowledge in the general population?
--Does a specific condom availability and condom social marketing
campaign reduce the incidence of STDs and HIV?
Cost-Effectiveness Research
Because developing countries have major limitations with resources,
cost-effectiveness data are seen as essential to improved decision-
making. Such research allows planners to assess the relative advantages
of one intervention over another in the context of limited resources.
The goal of cost-effectiveness studies is to determine the cost of each
infection averted as the result of specific interventions. If data are
gathered using standard measures, then comparisons can be made to help
inform priority setting for interventions.
Operations Research
The basic prevention package of interventions sets out a number of
options for specific interventions that could be adapted to situations
in any given developing country. However, what is often needed is
research on ways in which any intervention can be adjusted to the
specifics of a given country. This concern addresses the important
considerations of culture and attempts to build on what has previously
worked in any given country. The specific goals of these research
projects would be to take the conceptual framework of the interventions
in the basic prevention package and test how these may be implemented
in specific countries.
--Should STD treatment be made available in alternative health
settings?
--Should counseling and testing be offered to couples as well as
individuals?
--Should education and risk reduction communications come from
government or non-governmental sources?
--Should youth education be school-based or community based?
Sentinel Surveillance
The task of planning to implement specific HIV prevention
interventions targeting specific groups or regions at increased risk is
often difficult because of the lack of adequate surveillance data.
Developing countries could benefit greatly from simplified basic
technology for gathering sentinel surveillance data and making
projections about both prevalence and incidence of HIV infection within
geographic regions of the country.
HIV PREVENTION PLANNING PROCESS
International participants in the workshop were clear that HIV
prevention planning needed to be country-driven rather than donor
driven. This requires valuing local expertise when designing
interventions and setting priorities. Participatory planning requires a
range of perspectives, helps develop consensus and leads to resource
mobilization. Because certain functions like screening the blood supply
are generally government functions, representation from the government
is important. However, non-governmental organizations are central to
the success of HIV prevention in most countries and such representation
is essential. In addition, the success of planning efforts requires
that all affected communities within any country be represented in a
meaningful way. Ideally, the planning process would involve
representation of all the major stakeholders in the country.
The model-country planning process illustrated the extent to which
priorities would be quite different depending on the stage of the
epidemic--nascent, concentrated or generalized--and the extent to which
the availability of resources shapes decision-making. Conducting a
needs assessment begins with a review of what is known about the
epidemiology of the epidemic and results in a series of questions that
need further clarification. Once some consensus is reached about the
problem, the planning involves setting priorities for meeting the
identified needs. Groups essentially choose from the basic prevention
package the interventions that in their view are most likely to
accomplish their goals. Ultimately, decision making is both data-based
and value-based. The more investment in a quality planning process the
more likely the success of the country-level HIV prevention program.
Country Level Planning Process
Ensuring non-governmental participation
Ensuring governmental representation
Valuing the planning process
Country-Level Planning Tasks
Developing an epidemiological profile
Assessing and setting priorities for targeting groups, if indicated
Selecting among a basic package of HIV prevention interventions
Evaluating programs
Additional Resources
Constructing a budget within existing resources
Mobilizing resources to respond to unmet needs
MOBILIZING RESOURCES
Responding to the challenges of the HIV epidemic in the developing
world will clearly require mobilizing more adequate resources.
UNAIDS figures establish the need for action--over 30 million
adults and children living with HIV by the end of 1997. Another 12
million people have already died of AIDS around the world. And, 89
percent of these cases are in the developing world, which has only 10
percent of the world resources. In addition, the situation appears to
be getting worse--not better--with an estimated 5.8 million new
infections during 1997. This obviously requires a coordinated global
response.
Based on earlier cost estimates developed by the Global AIDS
Program at the World Health Organization, we estimate that implementing
this basic prevention package would cost approximately $2.6 billion.
This funding would need to come from within countries and from an
increased effort on the part of donor nations.
The U.S. investment in international prevention efforts through the
U.S. Agency for International Development (USAID) was $121 million in
1998. These funds are largely used for bilateral programs in Africa,
Asia and Latin America. About 14 percent of the funds are used for
multilateral programs through UNAIDS; the remainder are used to support
core functions, including operations research on how to improve the
effectiveness of the prevention efforts.
The National Institutes of Health (NIH) classified $58 million of
its AIDS spending in 1998 as international research, and this is
expected to grow in future years. The NIH has established HIVNET, the
HIV Prevention Trials Network, to rapidly test both behavioral and
biomedical approaches to HIV prevention. Sites are located throughout
the United States and in 8 developing countries. NIH is also actively
involved in training international AIDS researchers through the
leadership of the Fogarty International Center. Through 1998, over
1,300 researchers from over 90 countries have received training in the
United States.
Greater leadership is needed from both the United Nations and the
G-8, the group of eight major industrialized countries--the United
States, the UK, France, Japan, Germany, Canada, Italy, and Russia.
Together these countries control over half of the International
Monetary Fund (IMF) and the World Bank. When united, the G-8 can exert
considerable influence.
The success of any effort to raise the necessary funds to support
the implementation of this basic HIV prevention package will depend on
international mobilization. A first step is to raise the visibility of
the international AIDS issue. Then, organizing at the grass-roots level
is very important. Leaders within countries and leaders of donor
nations need to hear from concerned individuals and from the scientific
community about the importance of immediate and sustained action.
Senator Specter. And we----
Ms. Pelosi. I'm not finished. Will the gentleman yield?
Will the chairman yield?
Senator Specter. Well, I was about to call on you as soon
as I thanked people. But I will----
Ms. Pelosi. You can have the last word.
Senator Specter. I doubt it.
Ms. Pelosi. I want to thank Lonnie Payne and Doretha
Flournoy for their excellent presentations.
Dr. Coates, as you know, it's really one of the champions,
the hero, for so many years sustaining the effort, and for
sharing your own personal experience with us and giving us the
blueprint for how we can go forward.
Doretha, if anybody needed to know anything about your
commitment, which I think they do not, and your dedication on
this issue that you would be with us on this day is a real
tribute to you as a person and your concern for people. So we
are forever grateful. No words are adequate to thank you
enough.
Senator Specter, thank you. We have many resources in this
room on this issue, who have worked on this issue for a long
time, and many in our community.
On behalf of Mayor Brown, in addition to my own gratitude
on behalf of my constituents, I want to thank you for having
this hearing in San Francisco. Thank you for your leadership on
this issue. Again thanks for the $100 million. It was a good
start.
And thanks also for your work on the minority AIDS issue,
and being there for us all the time, because in doing so the
Senator is usually alone in his party on this. And you don't
have to comment on that, Senator.
But in any case, thank you for your leadership and for your
attention to our concerns here. Welcome to San Francisco.
Senator Specter. Aside from the comments about me, I had
intended to say just that. So we will give to Congresswoman
Pelosi the last word.
CONCLUSION OF HEARING
Thank you all very much for being here, that concludes our
hearing. The subcommittee will stand in recess subject to the
call of the Chair.
[Whereupon, at 2:01 p.m., Monday, February 14, the hearing
was concluded, and the subcommittee was recessed, to reconvene
subject to the call of the Chair.]