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Jan-22-99 18:14
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805 15th Street, NW
Suite 500
The Elizabeth Glaser
Washington, DC 20005
Phone: 202/371-0099
Pediatric AIDS
Fax: 202/371-2044
Foundation
Fax
Linda Marson
To: NOA Meyer
From:
Fax:
Date: 1/22
Phone:
Pages:
Re:
CC:
Urgent
For Review
Please Comment
Please Reply
Please Recycle
Comments:
People Masacine
stry.
10 0 pases
attached
Thanks
Jan-22-89 18:14
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IN THE ABSENCE
OF ANGELS
In an exclusive book excerpt, a Hollywood mother
movingly describes her family's battle with AIDS
By Elizabeth Glaser and Laura Palmer
A decade ago, before the nation awakened to
When I arrived at Cedars-Sinai Medical
the daily nightmare that is AIDS, Elizabeth
Center, my husband, Paul, rushed over,
Glaser was infected with the virus through a
and I could see the fear in his face. I was six
tainted blood transfusion. She did not know
months pregnant and had started bleed-
that she had passed the virus on to her TWO
ing. My baby wasn't due for 11 more
children until her daughter, Ariel, developed
weeks.
the disease at age 4. For more than three
1 was diagnosed as having placenta pre-
years, Elizabeth, 43, and her husband, direc-
via, which meant the placenta was growing
tor Paul Michael Glaser, 47, the former star of
across my cervix. All we could do was pray
the TV series Starsky and Hutch, kept their
that I would stop bleeding, because my
painful ordeal private.
child was probably too small 10 live out-
Then in 1989, just after the first anniversary
side my body. I lay there, day after day,
of Ariel's death, the Glasers went public with
with Paul by my side, waiting.
their story upon learning that a tabloid was
On the sixth day, I was sent home and
about to expose their tragedy in an unautho-
told to stay in bed for the rest of my preg-
rized feature. Since then, Elizabeth and writer
nancy. I was so afraid that I did less than
Laura Palmer have collaborated on In the Ab-
whatever the doctor said I could. Each day
sence of Angels, an inspiring account of the
was a victory, the next, a challenge.
Glaser family's struggles and triumphs, which
Finally, on Aug. 4, 1981, Ariel Glaser
will be published by G.P. Putnam's Sons in
was delivered by cesarean section. She was
February. "After we found out that my family
three and a half weeks early and weighed
was HIV-positive,' says Elizabeth, "it was clear
five pounds, two ounces, but I didn't care.
that I would have to grow as a person more
When I looked into her eyes for the first
than I had ever imagined in order to find a way
time, I was amazed that this miracle was
to cope. I wanted to let America see how painful
mine. Our fears were gone.
it is to be a family battling AIDS and how hard
I was trying to tell the doctors how glad I
it is 10 deal with the isolation and discrimina-
was that it was over, when I heard the an-
lion that comes through ignorance." "
esthesiologist saying that something was
The book is more than an anguished ac-
wrong. 1 couldn't breathe. I hemorrhaged.
count of a mother's loss; it is a testament to
I was gasping for air. My doctor pushed on
one woman's brave refusal to surrender. "If
my stomach and I could feel the warm
reading my story can help open hearts to peo-
blood gushing out. I was too horrified to
ple who are battling this disease,' says Eliza-
even scream. What was happening to me?
beth, "then maybe other families will have an
The transfusions began. I watched the
easier time." Here is a selection from In the
dark red blood drip out of the squat plastic
Absence of Angels.
bag, flow through an IV tube and into a
vein in my arm. I was transfused with seven
May 1981
pints. After the doctors packed me with
cotton I finally stopped bleeding.
There were no words, no sounds, every-
It wasn't until I saw my baby daughter
thing was obliterated by a single focus, gel-
again that the weariness and terror began
ting to the hospital. It was as though I were
to drift away, to be replaced with an in-
motionless and the scenery was being
stinctive love. She was beautiful, and we
pulled past me.
had both survived. It was over. I finally fell
FROM THE BOOK IN THE ABSENCE OF ANGELS BY ELIZABETH GLASER AND LAURA PALMER. © 1991 BY ELIZA-
DETH GLASER. TO BE PUBLISHED BY G.P. PUTNAM'S 60N9. A DIVISION OF THE PUTNAM BERKLEY GROUP INC.
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Bizabeth's hus-
The Glasers in
band, Paul Michael
1986, the year they
Glaser (right),
were diagnosed. "I
played Starsky; Da-
never imagined,"
vid Soul was Hutch
says Elizabeth, "that
in ABC's cop series
this is what my life
from 1975 to 1979.
would be about."
asleep, thinking about the wonderful life
the three of us had to look forward to.
Three wecks later I saw an article about
a new virus called AIDS. I called my obste-
trician immediately. "I just read an article
in the paper about AIDS, a virus that
may be transmitted by blood transfusions.
I just got seven pints!"
"Oh, Elizabeth," he said, "you've been
through a difficult ordeal, but it's behind
you. Relax and enjoy your baby. Your
nightmare is over. AIDS isn't ever going to
have anything to do with you."
June 1975
I had pork chops, not passion, on my mind
when I met Paul 15 years ago. I was com-
ing home from a session with my therapist
and determined to defrost two chops and
have supper by myself.
1 had, in fact, just spent 50 minutes ex-
plaining why I didn't need a man. Then,
while waiting for the light to change at the
intersection of Santa Monica and Beverly
Boulevards, I looked at the car next to me.
"Oh, my God, that is the cutest guy I have
ever seen,"I thought. I smiled. He smiled.
The light changed.
I turned right. He turned right. I glanced
into the rearview mirror and he signaled
me over with his arm. I was anxious and jit-
tery as I pulled over. He stepped out of his
car and walked toward me. I rolled down
my window and hc said, "Okay, let me see
your driver's license." I looked at him and
laughed. Hc was droll and disarming.
3
"What are you doing for dinner?" he
Elizabeth, who
asked. Thinking of therapy, I told him I
gave birth to Ari
(right) at 33, grew
was going home and making pork chops.
up in Hewlett Har-
"Wouldn't you rather go out for Chinese
bor, N.Y., and
food?" "Yes," I said without missing a
earned a master's
beat, One therapy session thrown out the
degree in early
window.
childhood educa-
We went to Al Fong's in Beverly Hills. It
tion at Boston Uni-
was dark and the food was dreadful. Mid-
versity. After o two-
way through the moo shu pork I asked
year marriage to a
Paul what he did. He said, "I'm an actor."
former classmate,
I was so disappointed. I had lived in Los
she moved to LA,
where she was
Angeles long enough to know that being
teaching when she
an actor meant absolutely nothing.
met Paul.
"Are you working?" I asked politely. "Ac-
tually, I am. I'm in a show that's just been
picked up by a network. It'll be on ABC in
the fall.' "What's it called?" "Starsky and
Hutch. It's a cop show about two detec-
tives. I play Starsky."
starting a family of my own. But Paul's
hospitalized for more tests. The doctors
I knew that night that even though he
childhood had been more complicated,
said they had no idea what was wrong with
was an actor, this was the man for me. I
and marriage and family were scary to
Ariel, but for the next three days they
was 27 and in love. When I looked at Paul I
him. Paul and I talked it through, and he fi-
watched her as if she might die. Once
saw happily-ever-after. In September 1
nally agreed that we'd get married when we
again I saw her life as precarious. I could
moved into the one-room bungalow in the
were ready to have children.
feel all my dreams and plans start to crum-
Hollywood Hills he shared with a dog
Three months after our wedding in Au-
ble. My many fears began to return. With-
named Max.
gust 1980, I was pregnant. All the good-
out even knowing what was wrong, I was
Paul didn't even have a television. We
ness in the world seemed to be ours. In
fighting for Ari's life all over again.
watched the debut of Starsky and Hutch
nine months I would have what I had al-
By the time we left Florida in November
with David Soul, the actor who played
ways wanted most, a child of my own with
Ariel was stronger, but not well. Doctors
Hutch, at the home of David's agent. Ev-
a man that I loved.
there said that she suffered from a blood
eryone, including the stars, felt the show
When Ari was about a year and a half
disorder that usually leads to kidney fail-
would be cancelled in eight weeks. By
old, we began looking for a larger house.
ure. There was more color in her face and
Thanksgiving, it was the hottest show on
Paul and I wanted more children, and I
lips, but she still had bouts of diarrhea and
TV, and Paul and David were as famous as
was trying to get pregnant again. From the
would wake up in pain. Over the next few
rock stars.
moment I walked into the sprawling Medi-
months we were doing test after test, trying
Paul and 1 were both stunned by his in-
terranean house in Santa Monica, 1 knew
to diagnose the underlying cause of Ari's
stant celebrity status. For years, he had
this was the home for my family. Our chil-
illness. Paul and I had told Ari there was
worked steadily, doing everything from
dren would grow up and go to college, and
something funny with her blood and that
Shakespeare to soaps. Starsky was not how
then Glaser children would come home
was the reason she was so frequently tired.
he imagined becoming famous. There was
with Glaser grandchildren.
We told her that the doctors were going to
a lot of adjusting to do. The simple joy of
Everything seemed IO be going well. I
find a way to make her better.
taking a walk on the beach in our jeans and
had gotten pregnant and had miscarried,
As time went by and things still didn't
sweatshirts came to a halt. Until you went
but was pregnant once more. And on
improve, Ariel was tested for all sorts of
out in public with Paul, you had no sense
Oct. 25, 1984, I delivered a beautiful son
unusual diseases including lupus and leu-
of how overwhelming, demanding, and ri-
we named Jake.
kemia. There was also talk of doing a liver
diculous being a celebrity was.
and kidney biopsy, but that was post-
During the years that Starsky was on the
In the spring of 1985 Paul was offered the
poned. When each test came back nega-
air, we never got involved in the social side
job of directing his first feature film, Band
tive, 1 felt we had won another diagnostic
of Hollywood. We saved our money,
of the Hand. The film was being shot in Mi-
round. But Ari's doctor, Richard Fine,
knowing that actors usually have lean
ami, so we packed up the family and rented
wasn't as cheerful. Hc knew what we
times, and wanted to be prepared for that.
a house on the beach for the three-month
didn't-that Ari's diarrhea and low helper
The price I paid for Paul's celebrity was in-
shoot.
T-cells count [an important part of the im-
visibility. Hollywood people would nod
From Miami I look the children to visit
munc system that fights infection) were
and smile when I would say 1 was a teacher
my parents, who were living in Puerto
symptoms of AIDS.
or, later, an exhibits director at the Chil-
Rico. Wc had just returned from that crip
I don't think 1 was any more anxious
dren's Museum. I had to find ways to ac-
when Ari, who was then 4, started to have
about an AIDS test than I was about any-
cept that; one solution was to make a life
stomach aches and cramps. She was in a
thing else. Just as her doctors had ruled
of my own that was independent and
great deal of pain. We consulted a pediatri-
out lupus and leukemia, they'd rule out
strong.
cian who said that she had probably picked
AIDS. We took her in to be tested.
I definitely knew I wanted to be married
up a bug in Puerto Rico. When Ari didn't
When the phone rang the next day, Paul
and have children. I had had a wonderful
get better, I went to another doctor who
answered it and after he hung up he said,
childhood and was looking forward to
suggested a stomach specialist. He had Ari
"They've got to run it again. It's shown
4
Jan-22-99 18:17
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without telling my friends. They had been
following An's illness since Miami, and
their support and concern had been cru-
cially important. Paul and I decided we
had two choices. We could tell some
friends or we could pick up, sell our house
and begin our life all over again someplace
else. The life we had known was over. I
had to stay strong so I could save my chil-
dren. Our first steps were perhaps the
hardest.
Paul and I decided to confide in only a
handful of friends. I told my women
friends in person, one by one, and made
each of them promise not to tell anyone
except their husbands. For some, whose
children were playmates of Ari and Jake,
finding out that we had AIDS was like
finding out that for years their children
had been in imminent danger. Most of our
friends wanted to stand beside us, but they
also wanted assurances that there was no
risk to their children. In May of 1986, an-
swers were in short supply and there were
Paul and Ari took
no guarantees.
At first, no one would allow their chil-
frequent outings to
dren to come and play at our house. Some
gether and often
spent quiet mo-
friends refused to let my kids come to their
ments painting and
homes at all. Some said their children
reading of home.
could continue to play with mine, but only
at the park. Some dropped out of our lives.
Reagan administration. But in those early
The day after I told my yoga teacher
years of the epidemic, that leadership was
about our diagnosis she called IO tell me
absent. AIDS may one day cost me my
that she never wanted to see me again. We
life, but community reaction right away
asked a therapist to see if a child psychia-
cost me the right to live the rest of my life
trist would work with Ari when and if we
the way I choose. That was my first fight.
felt it was appropriate. I was later told that
It was a time that would almost be un-
psychiatrists would not sec my child, be-
imaginable if we hadn't lived it. It is what all
cause they were afraid if word leaked they
families bauling AIDS had to face then.
would lose too many other patients.
You are told that you and your children
one about our diagnosis because the expe-
People were responding so fearfully
may die. You are told that there are no an-
riences of other families with AIDS had
that I started to feel dangerous myself.
swers now. And then as you are struggling
not been positive. "The world is not ready
The doctors said there was no reason for
not to completely fall apart, you realize that
for your family," was how he put it.
fear, but that meant nothing because our
very few people are going to reach out to
Nevertheless, he said we needed to ei-
ncighbors and our friends were not doc-
help or comfort you. We felt so alone. We
ther tell her nursery school or take her out
tors. Every time I went into the supermar-
wished for an angel who would help us get
of it. The Centers for Disease Control
ket, I envisioned everyone slowly and si-
through it all. But at that time it seemed we
guidelines, at that time, said that a child
lently moving away as if they had just seen
had no angels watching over us.
with AIDS should not be in nursery school
a rattlesnake. It would bc nine months be-
without first getting permission from the
fore the Surgeon General would appear
July 1986
school. It was surreal. Along with this hid-
on television to say flat out that you can't
eous medical diagnosis came instructions
gel AIDS from saliva or kissing. And with
One of the telephone calls I dreaded most
on how we needed to handle the rest of the
that information, our lives slowly regained
was to Crossroads Elementary School,
world.
some normalcy.
where Ari had becn accepted. Both Paul
Dr. Stiehm told me that I could test pos-
When we told people, we forced them to
and I desperately wanted her to start kin-
itive and carry the AIDS virus without be-
enlist in a conspiracy of silence. The quali-
dergarten that fall. It was one of the few di-
ing symptomatic or showing any signs of
ty of our lives now hinged on the ability of
rect links WC had to the future, and it
the disease. In other words, there was a big
our friends to keep quiet. Were word 10 get
meant so much to Ari. Paul Cummins, the
difference berween being HIV-positive
out, we knew we would be treated like
school's headmaster, had no idea why I'd
and having full-blown AIDS. Although
plague victims for no reason. All of us
walked into his office. He seemed both
Jake had tested positive, his other tests
were very afraid and confuscd.
confident and relaxed. I took a deep breath
were all normal.
What could have stopped the fear and
before I began.
I told Dr. Stichm that I could not live
hysteria was strong leadership from the
"We were planning on having our
Jan-22-99 18:18
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make
longe
angr
ing U
of a I
came
was
could
It
1
the t
J
tors,
è
to fo
there
frien
Paul
eryo
pass
lean
pois
wan
B
am
ther
ing
sick
thin
I'm
I
I sa
live
exc
my
col
ryf
]
tha
The family spent
the following year, after the Crossroads board
that never seemed to happen. I wished An
happy summer
abl
had agreed 10 admit children with AIDS.
would be invited to someone's house for a
holidays in Maine.
SOI
Ir was there Ari's
Says Elizabech: "It was another hard lesson in
sleepover. I wished one of Jake's friends
you
health seriously be
how little could be taken for granted."
would invite him for a play datc. It would
no
gan to fail in 1987.
be lovely if Paul and I were invited to a din-
ch
While 1 was fighting my battles, Paul was
ner party.
daughter, Ariel, start kindergarten here in
coming to grips with his own private
At that point in our lives, coping with
Pa
September," 1 said. "But I just found out
war-a battlefield on which he might lose
lear was far worse than coping with AIDS.
the
that she, my son and I are all infected with
all those he loved. It was a difficult strug-
The fear of rejection or exposure was with
we
the AIDS virus." I started to cry. I was sure
gle for him then and it still is now. He
us at all times. Most people have night-
M
he would send me away and tell me to find
worked as much as he could, as that gave
mares when they sleep, but when you are a
in
another school. Paul Cummins walked
him the strength to keep going. Sometimes
family facing AIDS, the nightmare begins
M
over and put his arms around me. "You
it is hard for me to believe that my life is
fresh each day. Sleep is the only time when
an
are part of our family," he said. "We want
real, but trying to imagine being Paul is
I feel just like everyone else. Often I wake
te)
you here." He held me as I cried. I left his
even more difficult.
up in the morning having forgotten for an
WI
office feeling both relief and joy. As long
Ariel was doing well. Each morning I
instant about AIDS, but that lasts for only
sh
as 1 could see that not every door was go-
would sit with her and pick out the hair
a blink of an eye.
m
ing to be closed to us, 1 could hope.
ribbons she would want to wear. We
In the fall of 1986, the doctors still had
pa
would stand in front of the bathroom mir-
no answers. Naively, I thought we were
be
Ari had spent just one week all Crossmads
ror and I would brush her hair 100 times to
ahead of the game. Since none of us was
W.
when Cummins met with the Glasers to ex-
make it shine. As her hair glistened, silent
sick or deteriorating, I felt that maybe if we
A
plain that the school's board was about to
tears would fill my eyes and my heart
could just stay strong, doctors would find
lo
draft an AIDS policy. He was concerned that
would break, knowing that I might lose
a cure. Ari was alrcady five years old, while
Ari's presence in the school might jeopardize
her. It became impossible for me to ever
most children with AIDS died by the time
its passage. So Ari was uprooled and trans-
feel really happy without feeling achingly
they were two.
ferred 10 a nearby public school that already
sad.
I felt I had every right to be angry. But
th
had an AIDS policy. where she remained until
That autumn, I kept wishing for things
what good was it going to do? Would it
ti
Jan-22-99 18:19
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longer? I couldn't stop myself from being
"What do you mean! Il ready IUI
angry, but I could keep that anger from be-
me!" Although I hadn't needed to start
ing trapped inside my body. I would think
taking it yet, I knew it was available.
of a room with two doors. If the anger
"AZT hasn't been approved for pediat-
came in one door, I tried to be sure there
ric use. It's just not ready."
was always another door so the anger
"We've got to find a way to get it and
could get out.
use it."
I had to learn to forgive. 1 had to forgive
"Elizabeth," he said, "we don't even
the blood donor. I had to forgive the doc-
know the dose to give her. We can't just ex-
tors, the hospitals, the schools, and I had
periment. It could kill her."
to forgive fate. I had to forgive God, if
"When will it be ready?"
there is one, and I had to forgive my
"In the fall."
friends, who had to forgive me. Right away
I took a deep breath and prayed that WC
Paul saw that we would have to forgive CV-
could hold on until then.
eryone, that we would have to let the anger
By the time we got home, Ari was thin-
pass right through us. He helped me to
ner and weaker, but Dr. Stiehm felt she
learn this. It was bitterly hard. Anger is a
would still be able to start school. She had
poison that will seep into your system and
her heart set on beginning first grade. It
want to stay.
didn't work. Although Ariel looked beauti-
But J still get angry. Sometimes when I
ful with her shiny hair and luminous blue
cyes, she frequently had outbursts of
Avid skiers, the
am alone in my car I scream, "If you are
Glasers vacationed
there, God, I hate you! I hate you for mak-
ghastly pain. She was a valiant fighter but
en famille in Park
ing this my life. I hate you for letting Ari get
was only able to finish two weeks of first
City, Utah, shortly
sick. And I hate you because I don't really
grade.
after Jake's birth
think you are there." My throat hurts when
As the pain increased, Ari and 1 became
in 1984.
I'm done, but I usually feel calmer.
more and more like one person. In her
I would feel a painful jealousy whenever
worst moments, my eyes would stan 10 fill
Some nights I would just lie there and
I saw people who seemed to have normal
with tears and I would say, "Oh, Ari, I
think how trapped Paul must feel. How
lives and healthy children. I would feel an
wish I could take all your pain into my
hard it was to live with us and how impos-
excruciating envy toward strangers and
body. I wish 1 could make it all go away."
sible it would be to leave. If he walked
my friends who could have what I never
She would look right into my eyes and very
away, everyone would think he was such a
could. And then I would feel very, very sor-
slowly answer, "But you can't, Mom." We
"bad" guy. But I knew he must have want-
ry for myself.
both knew it was true.
ed to run away at times. Part of me would
I learned to let go of all of these emotions
We would cherish the good moments
have wanted that. But he never said it, we
that depleted me. I am never going to be
more than ever. Paul would take Ari to the
never shared what we were thinking. It was
able to have what other people have. At
end of the block to feed the pigeons, and at
too scary. On a good night we would fall
some point you begin to accept that this is
night he would lie beside her in bed and
asleep in each other's arms.
your life. I've learned that you often have
make up wonderful fanciful stories.
Ari was getting weaker and weaker. We
no say in what happens to you, but you can
In the fall parents started getting curi-
had been waiting for AZT all that year and
choose how you bear the consequences.
ous about Ari's long absence from school.
each month it wasn't ready. Paul and 1 were
Rumors were raging and several parents
silently praying that something would
Paul had finished directing Running Man in
asked the school's director if Ariel Glaser
change the course of our lives, working
the spring (of 1987], and we had decided
had AIDS. Each time we found out that
hard to keep optimistic.
we would make our annual summer trip to
someone was asking, our anxiety soared.
Maine. We were swimming, boating, hik-
Paul and I still felt the risks of going public
Shortly before Thanksgiving 1987. Ari was
ing or picking wild blueberries on Pleasant
clearly overshadowed any gains. As awful
hospitalized with acute pancreatitis. She was
Mountain. At night we would make a fire
as it had been for us to shoulder the mas-
released after four weeks but had to continue
and toast marshmallows. Simple and in-
sive weight of the secret for the previous
being fed through an elaborate intravenous
tense delight. But Ari started to seem
year and a half, we dreaded even more the
system. which Paul and Elizabeth mastered so
weak, and I sensed for the first time that
risk that our children might experience any
that they could cure for their daughter at
she was beginning to fail. Her appetite di-
of the hysterical fear that still surrounded
home. Ari began taking AZT orally right be-
minished and she complained of stomach
AIDS in many parts of the country.
fore Christmas, but the drug had no positive
pain. In past summers she had always
Paul and I had stopped going out, ex-
effect.
been eager to go in the canoe and bc by the
cept with the few who were pledged to se-
water, but now that eagerness was gone.
crecy. Our friends worked as hard to pro-
Through January of 1988 Алі became
As a mother, I knew instinctively that I was
lect our privacy as we did. At night,
more confined. By February she stopped
losing her.
Paul and I would climb into bed exhausted
walking completely. We didn't know why.
I called Dick Stiehm in Los Angeles.
by the strain of just being us. If we talked
The doctors had по answers. 1 carried her
"We'vc got to get AZT now," I said.
about our fears, we felt overwhelmed. If
everywhere. She was unable to speak, but
"She's starting to fail." In 1987, AZT was
we talked about our hopes, it fell like pie-
we both remembered the words that had
the only treatment that seemed to be effec-
in-the-sky dreaming. So usually, we didn't
already been said. We would still go for
tive against AIDS.
talk at all.
long walks. 1 would put her in the stroller,
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COVER
from the hospital, Elizabeth discussed her in-
Dr. Stiehm had already tried to get AZT in that
tentions with Paul.
form for several of his patients but had failed
because it was still only available for trial test-
cushioning her with pillows and wrapping
Paul was silent for a long time and then
ing. Elizabeth returned home and refused to
a blanket over her legs. Despite the pain
with great gentleness he said, "I'll support
give up until she was able 10 obtain the intrave-
and the weariness that she always felt, she
you in whatever you have to do." I gave my
nous drug for her daughter in May 1988.
never failed to respond to the beauty
husband a big hug and felt a smile spread-
around her.
ing across my face. I knew this was the
I sat in my den, relieved that we had suc-
In March 1988, nearly two years after
moment when I was taking that hard first
ceeded in getting the drug and furious at
our initial diagnosis, the guillotine fell. Ar-
step. I didn't know it at the time, but it was
the inhumanity of a system that cared
iel got pneumonia and we were back at
the step that has kept me in motion ever
more about rules than lives. Did I love my
UCLA again. We learned that her brain
since.
child any more than the mother in Harlem,
had severely acrophied. The doctors said it
As a member of a family struggling with
Miami or Newark loved her child? Abso-
was irreversible. It was one of the central
AIDS, I learned that few wanted to help
lutely not. Did Ari deserve a chance any
nervous system complications of AIDS
enough to change a system that had be-
more than their children? No. Every child
that is quite common in children, though
come strangled by red tape. The ones who
with AIDS deserves a chance. And what
not in adults.
tried were often ignored because AIDS
about the children who had no one to
After four days, Dick Stiehm solemnly
was something many refused to deal with.
speak for them?
Then, three weeks to the day after we
started intravenous AZT, 1 walked into Ar-
iel's room in the morning and she looked
up and said, "Good morning, Mom. I love
you." I could hardly believe it. Ari was
back! The sky had opened up. I had to find
Paul. Maybe miracles did happen. Maybe
one was going to happen in our house.
Ari continued to improve over the next
six weeks. The intravenous AZT was un-
winding her cocoon of paralysis, and her
6-year-old self was still underneath. The
whole world had started spinning again.
Last fall, Helen
Ал, on a Mar-
Hayes honored
tha's Vineyard
Elizabeth and gave
beach, in 1987.
her a donation on
By then, she had
behalf of a Manhat-
started napping
tan hospital,
every day.
sat us down and told us that Ari had prob-
Someone had to care enough to bc willing
In March we were told to prepare for a fu-
toi
ably 48 hours to live. She was breathing
to shake things up, but I didn't know who
neral. By May we had a shot at second
weakly. but what none of us knew then was
it would be. I realized my country was fail-
grade. If Ari could make it, we were all go-
gel
that she hadn't given up.
ing me. The compassion as well as the
ing to make it.
qu
It was not until the doctors told us that
moral and ethical foundations of our soci-
wa
there was absolutely no hope that I con-
ety werc being tested, and from my point
In June, friends arranged a meeting between
ate
fronted the possibility of Ari's death for
of view, America had let me down.
Elizabeth and the Reaguns at the White
wa
the first time. I sat with a friend and fit one
House, where she appealed to the President to
the
cigarette after another. I was shaking and
Determined to educate herself about AIDS as
lead the nation on this urgent issue. Although
to
not yet able to talk. "No one cares if WC all
a national issue, Elizabeth met with physi-
the Reagans welcomed her warmly, their pri-
die from AIDS," I said. "Something is
cians, politicians and friends to plan an as-
vate concern had no positive impact on public
UI
very wrong. I have to get to the President."
sault on policymakers in Washington, D.C.
policy. The more Elizabeth learned about the
CO
It was in that moment of honest desper-
Her first goal was to explain that AIDS affects
government's indifference 10 the issue of
tal
ation that I realized I could no longer sit
children differently than adults and then 10
children with AIDS, the more determined she
ha
quietly in Santa Monica. A mother's job is
persuade legislators to make federal funds
became to form a private foundation 10 raise
pe
to save her child; it's a basic animal in-
available, specifically for pediatric AIDS re-
funds for pediatric AIDS research.
ot
stinct. But I was failing. I had to do more.
search. During her visit 10 the capital six weeks
vi
later, Elizabeth also met Dr. Phil Pizzo, chief
July 1988
in
Propelled by anger and frustration, Elizabeth
of pediatrics at the National Cancer Institute
W:
considered ways to take a more active role in
in Bethesda, Md., who had launched the
It was one of those beautiful Los Angeles
ne
AIDS issues without compromising her fam-
first federal study of AIDS in children. When
days when the sun, air, sky and sea all seem
ily's privacy. Ariel survived the pneumonia,
he learned that Ari had been taking AZT oral-
perfect. I asked Ari if she would like to go
th
yet her health seemed ever more fragile. The
ty with no favorable results, he recommend-
down to the Santa Monica pier, which has
U
day the Glasers brought their daughter home
ed that she take the drug intravenously.
rides and an amusement arcade with cot-
Wi
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ton candy and stuffed animals for prizes.
An had regressed greatly. In a few weeks,
daughter had died. Ariel Glaser had been
Ari and I went on the Ferris wheel to-
we had slid back down the mountain we
on the earth for seven years and eight
gether, around and around, waving wildly,
had climbed since June. Her care was in-
days.
queens of the sky and sea. For a moment, I
tricate and complex, but all I wanted was
was experiencing the thrilling unadulter-
to take her home.
That Sunday, the Glasers held a memorial
ated joy of just being a mom. Maybe there
Three weeks later, on Friday, Aug. 12th,
service for Ariel at home, and on Tuesday,
was some part of Ariel that knew this was
1988, we were packing up her things. Ari
Aug. 16, their daughter was buried next to
the last day that she was really going to get
was lying in her bed and I said to her, "We
Paul's father at a cemelery in Boston.
to be a little girl.
have to sce if you can sit in your stroller,
Two weeks later Ari was readmitted to
honey." And Ari said, "No, Mom, I'm go-
We have left Ari's room just as it was when
UCLA hospital. Her white blood cell
ing to walk home." She couldn't move her
she was alive. Paul and I decided we
count had fallen too low, and we had to
legs. I looked at her and said, "Give me a
couldn't imagine changing it. We each find
take her off the intravenous AZT. She was
break." Ari said simply, "No, Mom, I'm
our way into her room at different times
having fevers that we couldn't break. But I
going to walk home." "All right, Ari," I
and in different ways to tell her we love her.
persistently believed that this was just an-
said. "Go for it."
Her door is always open. It's not maudlin;
other crisis that we would somehow sur-
Paul and I continued getting her things
it's just life. Ari's room remains though Ari
vive. I have never been ablc to accept end-
together. It was not until the last 10 min-
is gone and her spirit fills our hearts.
ings that I don't like. I fight to make life the
utes of her life that I knew she was dying.
way I want it to be, and because of that I
And then very quickly she was gone. She
As In the Absence of Angels continues, it
never believed that Ari was going to die.
was never supposed to die, It was too
chronicles Elizabeth's evolution from a des-
We had Ari's seventh birthday party in
short a time to have had her. Paul wept
perate mother, crying out for action, to an im-
the hospital, and Dick Stiehm gave her a
and I cried, "Noooo!" It was a "no" that
passioned advocate, in charge of her life and
UCLA T-shirt and told her it was what she
wanted to turn back time. It was a "no" to
determined to help others. For a look at Eliza-
would wear on the day she went home. But
a world that had failed me. Our beautiful
beth today, please turn the page.
Photographs from the collection of Elizabeth Closer
http://www.pedaids.org/facts.html
Pediatric HIV/AIDS Fact Sheet
Children
In the U.S
It is estimated that the number of children infected with HIV in the U.S. is 15,000 through
1994-1995. Note: 31 states require reporting of HIV infection. Two of those states, Connecticut
and Texas, have confidential reporting only for children less than 13 years of age and Oregon
requires reporting only for children less than 6 years of age.
AIDS is the seventh leading cause of death for children 1-4 years of age in the U.S.
Between 15% to 30% of infants born to untreated HIV-infected women become infected with the
virus. Studies show that treatment can help reduce the rate of HIV transmission from an infected
woman to her baby to less than 8%.
Of the 12 drugs currently approved for the treatment of HIV/AIDS, only seven are approved for
pediatric use: AZT (retrovir), ddl, d4T, 3TC (epivir), Norvir (ritonavir), Viracept (nelfinavir) and
Sustiva (efavirenz). No protease inhibitor is approved for infants under the age of two.
Today, nearly 100% of new HIV infections in children result from an HIV-infected pregnant
woman passing the virus to her baby either before or during birth.
Approximately 30,000 American children have already lost their parents to AIDS.
Worldwide
UNAIDS estimates that 1,600 children under the age of 15 are infected with HIV each day
worldwide
1,200 children die of AIDS each day worldwide.
By the year 2020, there will be over 40 million orphans under the age of 15 in the 23 countries
most affected by HIV. Most of these children will have lost both parents to AIDS.
Nearly 600,000 children were infected with HIV in 1997, mostly through their mothers before or
during birth or through breastfeeding.
Altogether, 2.7 million children have died of AIDS since the beginning of the epidemic. Another
million were estimated to be living with HIV disease at the end of 1997, half of them infected last
year alone.
Adolescents
In the U.S
25% of new HIV infections in America occur in people under twenty years of age. This represents
two new adolescent HIV infections every hour.
Every year, 3 million American teenagers acquire a sexually transmitted disease, leaving them
more susceptible to HIV infection.
Worldwide
Worldwide, more than half of all new НИѴ infections acquired after infancy occur among young
people 10-24 years of age.
Of the 30 million persons living with HIV worldwide, at least a third are young people 10-24
years of age.
Every day, 7,000 young people 10-24 years of age worldwide acquire the virus. This translates
into five young people every minute or 2.6 million infections each year.
1 of 4
1/25/99 1:32 PM
http://www.pedaids.org/facts.html
Women of Child-bearing Age
In the U.S
AIDS is now ranked as the leading cause of death among African-American women ages 25-44.
AIDS is now ranked as the third leading cause of death among all American women ages 25-44.
From 1985 to 1996, the proportion of U.S. AIDS cases in women reported each year increased
from 7 percent to 20 percent.
Worldwide
Approximately 42% of the 21.8 million adults living with HIV/AIDS worldwide are women.
Nine out of ten HIV-positive women in developing countries have no idea they are infected.
In the U.S. fewer than 5% of children born to HIV-positive women in 1997 were infected with the
virus. In developing countries, the average was between 25% and 35%. There are two major
reasons for the difference- breastfeeding practices and access to drugs for reducing
mother-to-child transmission.
Data from the Centers for Disease Control and Prevention, UNAIDS and the World Health
Organization.
For specific citation information, please contact Chris at 310-314-1459 or e-mail
[email protected]
Updated 7/15/98
Back to Home Page
National Organizations (revised 4/8/98)
For statistics regarding HIV/AIDS:
Centers for Disease Control & Prevention (CDC) 301-436-8500
For general information about HIV/AIDS, AIDS related resources & services, prevention materials,
referrals & publications, funding information and clinical trials call:
CDC National AIDS Clearinghouse 800-458-5231
For general questions about HIV and for educational materials:
CDC National AIDS Hotline 800-342-AIDS
For general questions about HIV (in Spanish or Asian languages):
Bilingual AIDS Hotline 800-367-2437
For questions or information on international programs:
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THE ELIZABETH GLASER SCIENTISTS AWARDS
>
> 1999 HONOREES - PROFILES AND INTERVIEWS
>
>
>
>
ROBERT DOMS, M.D., Ph. D.
University of Pennsylvania
Associate Professor, Pathology and Laboratory Medicine
>
Area of Investigation: Study the role of chemokine receptors in HIV
infection.
>
Background: In 1996, Dr. Doms led one of five groups that independently
>identified the chemokine receptor CCR5 as playing a critical role in the
>entry of the most common types of HIV into cells. Working with colleagues
>in Belgium, he subsequently found a polymorphism in the CCR5 gene that
>renders approximately one percent of Caucasians CCR5 negative - explaining
>why some people remain HIV-negative despite repeated exposure to the
>virus. The Elizabeth Glaser Scientist Award will help Dr. Doms continue
>his studies on HIV pathogensis in the pediatric population.
>
QUESTIONS AND ANSWERS
>
1. How would you explain the significance of your work to a layperson?
My team and I are focused on chemokine receptors - specialized proteins that function at
the surface of cells and allow molecules to trigger internal cell processes without actually
entering the cell - as tools to understand how the virus works and come up with new
therapeutic strategies. If we can stop the virus from getting into the cells,
obviously, we can stop the infection -- that is the point of vaccines.
V
For HIV to get into a cell it has to do a couple of things, starting with latching on to the
outside of the cell by binding to the CD4 molecule which is found on the surface of cells
found in the immune system. It then has to get inside the cell through a process called
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membrane fusion. It had been known for some time that CD4 by itself was enough for
the virus to latch on to the cell, but was not enough for it to get inside the cell - the virus
needed something else to get into cells, and this 'something else' eluded discovery for
over a dccade. However, in 1996, a molecule or co-receptor called CXCR4 was
discovered. In conjunction with CD4, CXCR4 that allows the virus to get into the cell to
start an infection. Interestingly, it was also discovered that CXCR4 worked for some
types of HIV but not others. Specifically, it was clear that CXCR4 didn't work for M-
tropic viruses, the most common kinds of viruses that infect children and adults.
Therefore, it was important
to find the co-receptor that worked for M-tropic viruses because then we can understand
how these viruscs get into cells and we could find new ways to block it.
>
In 1996, we found that the CCR5 molecule that holds the key for entry of these M-tropic
viruses into cells. Then, continuing our work with Marc Parmentier and his colleagues in
Belgium, we discovered that one- percent of Caucasians naturally lack CCR5 because of
a naturally occurring mutation in the gene. Those individuals who lack CCR5 are highly
resistant to HIV infection but are otherwise normal. The goal was then to come up with
some kind of strategy to stop the virus from using CCR5 -- to develop an anti-viral drug.
>
2. How will your research under the Foundation grant be implemented in the
pediatric HIV/AIDS population?
We now know that viruses throughout the world use CCR5.
That suggests a commonality that allows them to recognize the CCR5 molecule. Just this
past summer it was discovered that gp120, the protein that coats the outside of HIV, has a
very highly conserved region that interacts with CCR5.
We have discovered a way to trick the virus to expose this conserved region and hope to
accomplish one of two things: make antibodies to this region and to then come up with
new vaccines that target this region. Sccondly, we want to expose the region and come
up with drugs that will bind to this area and prevent HIV from using the CCR5 receptor.
Another component of our work will attempt to explain some of the differences in
clinical symptoms in people with HIV on the basis of the kinds of co-receptors used by
the viruses. Wc have been able to make antibodies 10 many of these receptors and we
want to find out where these receptors are expressed in both children and adults. This
will give us a clue as to which types of cells might potentially be infectable by different
types of viruses. It may also help us explain some differences between pediatric and
adult AIDS.
>
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3. What does funding from a Foundation such as ours mean to your creativity as a
scientist?
Historically, the system for getting grants almost forces people to be scientifically safe
because they are worried that if they propose something too unique, too risky, they
simply won't get funded. Funding from a private Foundation enables you to take more
risky and creative approaches to new and interesting avenues of research. When you get
funding from the Pediatric AIDS Foundation, it is a very substantive grant that allows
you to move your research into new and challenging directions.
4. What does it mean to be an Elizabeth Glaser Scientist?
I remember hearing Elizabeth Glaser speak in 1992 at the Convention. It is quite an
honor to receive an award named after her. When you ask yourself what you can do as a
person to make a difference you look to her example as really showing the way. She
demonstrated how one individual can make a positive difference.
5. We have come SO far in the past decade, what does the next decade of
>progress on pediatric HIV/AIDS research look like?
We are making progress and things are much more promising than they have been. There
are some effective drug therapies helping a lot of people -- but people can develop
resistance and the drugs are just too expensive. In Uganda, there are about a million
HIV-positive individuals, but only very few can afford the triple-drug cocktail. We
clearly need new therapeutic strategies.
>
Through basic research we are beginning to unravel this very complicated virus. I think
we will develop new drugs to target the virus or the chemokine receptors. Obviously,
what we really need is a vaccine, but that is going to be a slow and complex process
because this virus changes its spots so readily. I think in the next decade there will be
more progress in developing drugs to help knock this virus down, but we have to keep
working on new ways to come up with a vaccine. New approaches, such as the conserved
region approach, are exactly the kind of new investigative angles we need on the vaccine
front.
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THE ELIZABETH GLASER SCIENTISTS AWARDS
» 1999 HONOREES - PROFILES AND INTERVIEWS
»
» Philip Goulder, M.D., Ph.D.
» Instructor in Medicine
» Massachusetts General Hospital, Boston
»
» Area of Investigation: HIV-infected children progress to disease more
>>rapidly than adults. One possible explanation is that the immune response
>>to HIV is defective in children. This study aims to investigate the cells
>>normally responsible for eliminating virus infections known as Cytotoxic
"killer" T-lymphocytes.
» Background: Dr. Goulder began his investigative career at Oxford where
>>he developed a number of techniques to examine immune function in HIV-1
>>infected children, which is his main area of focus. His experience as
>>a pediatrician and the novel technologies he has developed place him in
>>a unique position to define the role of immune responses in children
>>infected with the virus and will impact our understanding of HIV
>>pathogenesis and the prospects for immunotherapy.
»
>>
» QUESTIONS AND ANSWERS
»
>> 1. How would you explain the significance of your work to a layperson?
Our ultimate goal is to develop a vaccine designed especially for children. We
know that HIV-infected children progress to disease more quickly than adults. We also
believe that the cells normally responsible for eliminating virus infections, known as
Cytotoxic "killer" T-lymphocytes (CTL) play a central role in controlling HIV in
adult infection. One possible explanation for the rapid progression
generally seen in HIV-infected children is that their "killer" T-cell
response is defective in some way. Recent advances in the technology
available have allowed us the opportunity for the first time to make a
detailed study of the "killer" T cell response in children. The long-term
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goal is to identify components of the immune response that are important in protecting
against HIV disease, and which may ultimately be important to vaccine design.
»
2. How will your research under the Foundation grant be implemented in
>>the pediatric HIV/AIDS population?
>>
We are already studying HIV-infected children here in North America, and we
will continue with these studies. However, the global epidemic is
concentrated elsewhere, and much of our research effort will focus on
HIV-infected mothers and children in South Africa. Over one-third of the
Zulu mothers in Durban, South Africa, where our collaborations are
centered, are HIV-infected. One other important reason for directing our
research effort towards this region is that the commonest strain of HIV
worldwide ('clade C') is infecting this South African population, and this
is likely to be relevant for vaccine design.
>>
3. What does funding from a Foundation such as ours mean to your
>>creativity as a scientist?
Five years of funding provides the stability and support for ambitious and important
projects to be planned and carried out. For a pediatrician who research focuses on
pediatric HIV the PAF has international recognition and the close association with it
can only be helpful in developing collaborations and setting up studies
with people whose priorities and goals overlap with those of the PAF.
»
4. What does it mean to be an Elizabeth Glaser Scientist?
It is a great honor to be bracketed with the other EG Scientists, who are clearly
highly creative and talented individuals. The Pediatric AIDS Foundation
deservedly has a reputation for practicing scientific research the way it
should be done - that is, in truly collaborative way, so that rapid
progress may to be made towards eliminating HIV. I believe that this
"team" approach is the right approach and I am very excited to be joining a team whose
priorities and research interests overlap so much with my own.
»
5. This year marks the Foundation's 10th Anniversary. We have come so
>>far in the past decade, what might the next decade of progress on
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>>pediatric HIV/AIDS research look like?
I would hope the next decade will put us squarely on the path toward developing a
vaccine for HIV - for children as well as adults. Ultimately, a vaccine is our only real
hope
for impacting this disease. While implementation of a successful vaccine
is years away, if we wait to develop HIV vaccines for children until after
they are proven effective for adults, we will lose millions of children
to this pandemic.
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THE ELIZABETH GLASER SCIENTISTS AWARDS
1999 HONOREES - PROFILES AND INTERVIEWS
PAUL JOHNSON, M.D.
HARVARD MEDICAL SCHOOL
Associate Professor of Medicine,
Chairman of the Immunology Division,
Partners AIDS Research Center
Harvard Medical School.
Area of Investigation: CD4+ T helper Cell Function in Macaques
to combat SIV infection in Pediatric patients.
CD4+T lymphocytes play a central role in the war between the AIDS virus
and the body's immune system.
Background: Dr. Johnson has focused on analysis of HIV-specific cytotoxic
T lymphocytes (CTL), research that has established him as a leading
investigator in the field of cellular immunology. Since being appointed as
Chairman of the Division of Immunology in 1994, Dr. Johnson has led a
successful research program focused on immunology related to AIDS
pathogenesis and vaccine development. More recent research has analyzed T
cell turnover in SIV infection and the development of gene therapy for
AIDS.
QUESTIONS AND ANSWERS
1. How would you explain the significance of your work to a layperson?
I am trying to better understand the role that CD4+T cells play in
helping children to fight off HIV infection. CD4 cells are the major cells
responsible both for fighting off infection and also the main target that
HIV infects and destroys. By studying monkeys infected with a closely
related
AIDS virus, I hope to understand both how quickly CD4+ T-cells are killed and
regenerated and also understand how they recognize the AIDS virus. This information
should help us could restore those critical immune responses via either treatment with
anti-retroviral therapy, immunization or a combination of the two.
2. How will your research under the Foundation grant be implemented in
the pediatric HIV/AIDS population?
The hope is that our research with Macaques could help us to design an approach to help
boost the immune response against HIV in HIV-infected children. If this is successful, it
would help us design techniques for therapeutic immunization - - meaning
that it might allow their immune system TO better contain the virus
Johnson
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replication, either as a supplement to antiviral therapy or if the
antiviral therapy fails for some reason, allow them to better contain
viral replication without drugs.
3. What does funding from a Foundation such as ours mean to your
creativity as a scientist?
What's really unique about the Foundation is the group of scientists that are affiliated
with it? The chance to interact with the outstanding group of Glaser scientists is an
exceptional opportunity. The ability to contrast results and share ideas at the conferences
that the Foundation sponsors is very exciting, because that degree of focus and level of
interaction is quite unique.
4. What does it mean to be an Elizabeth Glaser Scientist?
It's a tremendous honor and responsibility. I've heard so much about Elizabeth
over the years and besides the scientific opportunity, it is simply a
personal honor for me.
5. This year marks the Foundation's 10th Anniversary. We have come so
far in the past decade, what might the next decade of progress on
pediatric HIV/AIDS research look like?
I would hope the research over the next decade would help us to better understand how
we can rebuild the immune system of people infected with the AIDS virus. We have now
a number of scientific tools at our disposal and the challenge will be to see how we use
those tools to rebuild the immune system to lead to prolonged gains in the health of HIV-
infected kids.
Johnson zot 2
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THE ELIZABETH GLASER SCIENTISTS AWARDS
1999 HONOREES - PROFILES AND INTERVIEWS
JULIE OVERBAUGH, Ph. D.
Full Member, Fred Hutchinson Cancer Research Center
Seattle
Area of Investigation: Leading an effort to study how HIV virus is transmitted through
breast feeding by using a collection of samples from a recently completed clinical trial of
breast feeding transmission of HIV in Kenya. Since 1992, Dr. Overbaugh has been a
member of the Nairobi HIV/STD Research Project, an international collaborative group
based at the University of Nairobi.
Background: In the past decade, strategies to limit HIV transmission to newborns have
been implemented in developed countries as a result of research showing the
effectiveness of treatment around the time of delivery. Moreover, in developed countries,
women infected with HIV are counseled not to breast feed, which further reduces the
infant's exposure to HIV. However, in resource-poor settings, many continue not to have
access to adequate health care, including new drugs that can prevent their babies from
acquiring HIV. In these situations, breast feeding is also more common. Dr. Overbaugh
is pursuing studies that are designed to help devise ways to further reduce HIV
transmission to infants, including during breast feeding.
QUESTIONS AND ANSWERS
1. How would you explain the significance of your work to a layperson?
I am part of a large, collaborative research team that is conducting a clinical trial that is
designed to determine how and when breast feeding transmission occurs. The
Foundation project will build on the information we are learning from this trial try and
understand what features about the mothers' viruses makc it more likely to be transmitted
to her infant. For example, how does the genetic makcup of the virus influence
transmission and is there a common genetic signature to viruses that infect infants? We
are also interested in determining whether the amount of virus that mother has, including
virus in breast milk, increases the chances of her infant being infected? AIDS researchers
have already shown how to decrease transmission to newborns with a short course of
AZT around the time of delivery. Now, we are trying to understand how to develop other
ways to reduce HIV transmission to children in situations where access to expensive
treatments are impractical.
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2. How will your research under the Foundation grant be implemented in the
pediatric HIV/AIDS population?
One overall goal of studying breast milk transmission of HIV is to provide information to
women so that they can make more informed choices about breast feeding. From the viral
studies we hope to undertake over the next five years, we hope to understand a lot more
about viruses in breast milk SO that we can begin to think about therapies more designed
to target those viruses. Up to this point, there has been a heavy focus on HIV in the
woman's blood. Much of transmission to the infant is actually going on during delivery,
while they are in the birth canal. Or, in developing countries, a lot of infection is
occurring through breast fecding when they are exposed to the virus in breast milk. We
want to now start looking at those secretions and understand what is going on so that
people can think more about intervention to target those viruses, instead of just blood
viruses.
3. What does funding from a Foundation such as ours mean to your creativity as a
scientist?
A lot of what I see from the Glaser Foundation is not just individual creativity but a lot
of encouragement to interact and be creative as a group.
3. What does it mean to be an Elizabeth Glaser Scientist?
For those of us in the AIDS community, Elizabeth Glaser is one of the heroes who proves
that one individual, if they work hard and have a lot of personal strength, they can make
good things happen out of something that is inherently bad. I personally feel very proud
to have funding from a group that bears her name.
4. This year marks the Foundation's 10th Anniversary. We have come so far in the
past decade, what might the next decade of progress on pediatric HIV/AIDS
research look like?
I think there is a big mental shift that needs to take place (and hopefully will occur in the
next decade) -- and that is what to do in developing countries where the therapies used to
block HIV vertical transmission aren't really available? 1 think the next decade of AIDS
research might be trying to come up with therapeutic approaches that are affordable and
applicable in developing countries. That will be both a big political and scientific hurdle.
That is really going to be the focus in terms of a lot of rethinking on how to deal with the
problem of vertical transmission. The progress we have made in reducing vertical
transmission in some settings has given may AIDS researchers renewed enthusiasm, and
we need to continue to design better and better therapies for people who have access to
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high quality health care. At the same time, the success in blocking HIV vertical
transmission should serve as a source of encouragement to try to understand how the
therapies we now have work and then figure out less costly approaches to accomplish the
same aim, We have to remember that most HIV transmission is occurring in developing
countries, and in it is this setting that we face our major challenge for halting the
worldwide devastation of HIV.
24
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ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION
805 15th Street NW, Suite 500, Washington, DC 20005
Tel: 202-371-0099 Fax: 202-371-2044
FAX TRANSMISSION SHEET
TO:
Marsha Berry, Press Office
Julie Mason, Press Office
Noa Meyer, Speechwriting Office
Patty Solis, Scheduling Office
FROM:
Linda Marson, Communications Director
PHONE: 202-371-0099 (work) 301-983-8274 (home) and
FAX: 202-371-2044
DATE:
January 22, 1999
RE:
ELIZABETH GLASER SCIENTIST AWARDS -
PRESENTED BY FIRST LADY HILLARY RODHAM CLINTON
AT THE NATIONAL PRESS CLUB, JANUARY 28, 1999
Number of pages (including this page):
Hello and thank you to all of you. We are really excited about having the First Lady
present the Foundation's Scientist Awards.
ATTACHMENTS: O
THIS TWO PAGE COVER SHEET
LOGISTIC MEMO - Labeled A through G
BACKGROUND MATERIALS - labeled 1-24
I am sending you all the same background information. Do you need proposed talking
points? ? Please note that this year commemorates the Foundation's 10th Anniversary and
also the attached release on the recently announced FDA regulations involving drugs for
children. Paul Glaser will note the Administration's efforts in his introductory remarks
for Mrs. Clinton.
Please let me know each of your necds beyond the attached material and we will
accommodate you every step of the way!
(page one of two, cover memo)
cover memo lof2
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Attached is an updated agenda/logistical memo that reflects confirmation of the First
Lady's arrival time at the National Press Club. This is a PROPOSED agenda and
timeline, please let me know your questions, concerns, changes.
I tried to provide as much detail as possible in this memo, particularly the logistics of her
actually presenting the four awards to the scientists. Please advise us on what you need
from us to accommodate security clearance re: staff, guests and media.
I've attached our DRAFT MEDIA ADVISORY and DRAFT PRESS RELEASE. We
would love a quote from the First Lady, if possible
THANK YOU!
(Page two of two, cover memo)
Cover memo 2 of 2
#
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ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION
Co-tounders
Classin Glaser 1947 1994
January 22, 1999 - UPDATED MEMO
Susan DeLaurentiz
Same Leegen
Board of Directors
To:
Marsha Berry, Julie Mason,
CHAIRFERSON
l'out Closer
Noa Meyer, Patti Solis
Peter Benzion
Bon Barkett
Office of First Lady
Marking Canter
Phitap inco M.I)
Hillary Rodham Clinton
Susin Zangen
Lloyd Zeiderman
Chief Executive Officer
From:
Linda Marson,
have Care
Executive Director
Communications Director
Janis Sprie
Executive Advisory Board
CONTACT: 202-371-0099 (work) and
HONDRARY O-CHAIR
301-983-8274 (home)
President and Mrs. Ronald Rengan
Mrs William E. Brock
FAX: 202-371-2044
Allred A. Checota
Kathryn D Checchi
King Datentas
Michael D. Eigher
RE:
FIRST LADY
Smake Bold
Senator Powa Howkits
HILLARY RODHAM CLINTON'S
Ellon John
Michael S Ovit?
PRESENTATION
Grewn Spirlberg
Jonathan M Tuch
OF THE ELIZABETH GLASER
Alexander Vregland
Mrs Per Wilson
SCIENTIST AWARDS ON
Bobbi Zitkin
Health Advisory Board
JANUARY 28, 1999
CHAIRPERSON
Catherine Willers MD.
screensing
AIDS Coundanon
Thank you!
Mary G Boland, RN. MS
Children's Heapital of
Yvenne J. Bryson, M.D.
UST Selend of
Below is a proposed rundown for the event. Please tell us what
Mark Feinberg, M.D.. I'll D.
Francy Cleaner for AIDE Research
you need regarding background, talking points, security needs,
Michael S Cottieu MD
Maintaint C. Heligarly. M.D
etc. We will accommodate you as requested.
Colorable University, licricm
David L) HJ. M.D.
Added AIDS Received Conner
Anna Rate Kaufran, M ΓA. M.A
I have also attached a draft media advisory and a draft press
Chancel As Therapore
Daniel V. Lenders, M.D
release. We will get you background information on all the
Mager WASHING inspital
Joseph M. McCune. M.D. Ph.D
participants at the award ceremony, including a description of
Grede 1,100
James Oleske, MD., M PH.
the scientists work in layperson's terms, which will be helpful
No. School
Catherine S. Peckharn, MD
since Mrs. Clinton will be presenting them with their award
Increase at Chard Health, Landen
Philip A. Pizzo, M.D
and describing, in layperson terms, their work.
Horoard Medical Heaptel
Paolo Ross. M.D
University of Rente and Institute
Arge Revinstein, M.D.
The audience for this event will include approximately 75
Attain Instinct 11. Called of Medicale
Gwendolyn B Scott. M.D
University n/ Minmi School of
members of the scientific community, as well as staff and friends
Γ. Richard Suchm, MD.
1001 ^ School of Medicare
of the Foundation. In addition, the media is being invited to attend
Lan Wiener, Ph D., " C.S.W.
2950 31st Street, Suite. 125. Sunra Manica, Colifornia 90405 Tel (310) 314-1459 Fax (310) 314-1-169 www.pedAIDS.org
Nauager institute of Health
805 15th Street NW, Suite 500. Washington. DC 20005 Tel: (202) 371-0099 Fax: (202) 371-2044
Jan-22-99 17:58
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the awards presentation. There will be no Q&A while the First
Lady is in attendance. We plan to have an informal Q&A session
with the press, our Foundation members and our scientists,
following her departure.
Here is a proposed rundown for the event:
EVENT: The Elizabeth Glaser Pediatric AIDS Foundation's
Scientist Awards ceremony will take place at the National
Press Club, 14th and F Streets, NW, 13th floor, Holeman
Lounge, on Thursday, January 28, 1999.
GREETING: It is our understanding, per Patti Solis, that
Mrs. Clinton will arrive at the Press Club at 9:50 a.m. She will
be greeted (please advise us on where you wish this to take
place?) by Foundation Chairman of the Board, Paul Glaser,
Foundation CEO, Kate Carr, and Foundation Co-Chair Susie
Zeegen.
PHOTOS: We have a "holding room" adjacent to the Holeman
Lounge, where the award ceremony is taking place, available
for the purposes of photos with our the three Foundation
members listed above, as well as the four scientists (and, if
possible, their spouses?). Please advise us on what you need for
security purposes.
PROPOSED TIMELINE:
9:50 a.m.
Mrs. Clinton arrives at the
National Press Club,
14th and F Streets, NW.
Greeted by Foundation
contacts, Paul Glaser, Kate
Carr and Susie Zeegen.
Location: ?
B
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9:53 a.m.
Photo session (White House
photographer and a
Foundation photographer)
with Paul Glaser, Kate
Carr, Susie Zeegen, Janis
Spire, Executive Director of
the Pediatric AID
Foundation and the four
awardees/scientists: Dr.
Doms, Dr. Goulder, Dr.
Johnson, Dr. Overbaugh
and their spouses?
Location: "holding room"
adjacent to Holeman
Lounge.
*Please note that a few
board members may also
request photos, if that is
possible?
9:59 a.m.
Enter Holeman Lounge.
Mrs. Clinton can enter
through the adjacent
"holding room" and
proceed directly to a seat
next to the podium. She can
remain seated until
formally introduced for
remarks and the award
presentation.
Jan-22-89 17:59
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10:00 -10:02 a.m.
Begin Award Ceremony -
Opening remarks and
welcome by Kate Carr,
Chief Executive Officer,
Elizabeth Glaser Pediatric
AIDS Foundation.
Introduces Susie Zeegen.
10:02-10:04
Remarks by Susie Zeegen,
Co-Founder, Elizabeth
Glaser Pediatric AIDS
Foundation. Introduces
Mary Fisher.
10:04-10:08
Remarks by Mary Fisher,
Founder of
Family AIDS Network.
Introduces Paul Glaser.
10:08-10:13
Remarks by
Paul Glaser, Chairman of
the Board, Elizabeth
Glaser Pediatric AIDS
Foundation
10:13-10:14
PAUL GLASER
INTRODUCES THE
FIRST LADY
10:14 - 10:24
FIRST LADY delivers her
remarks from the podium.
We will provide
suggested talking points:
-
Her history with the
Foundation
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-
the work of the
Foundation,need to
promote innovative,
collaborative research,
impact of Foundation's
research on Pediatric
HIV/AIDS and the
meaning of the award
10:24 - 10:35
ASKS THE AWARDEES
TO JOIN HER AT THE
PODIUM, two on each side
of her.
Mrs. Clinton continues her
remarks - introducing each
of the scientists in turn,
providing a
- layperson description of
the four who are being
honored. She gives each
of them their award in
turn. (the awards
themselves will be on a
small table, adjacent to
the podium). All 4
scientists remain
standing until she has
concluded.
AWARDEES:
Robert Doms, M.D., Ph.
D., University of
Pennsylvania
O
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Philip J.R. Goulder,
M.R.C.P., D. Phil.,
Massachusetts General
Hospital
Paul Johnson, M.D.
Harvard Medical
School
Julie Overbaugh, M.D.,
Fred Hutchinson Cancer
Center
10:35
Mrs. Clinton Concludes the
awards presentation. Paul
Glaser joins her at the
podium.
10:35
Paul Glaser thanks Mrs.
Clinton, who departs
through the adjacent
holding room.
10:40
Mrs. Clinton departs Press
Club
10:36 a.m.
Paul Glaser introduces
Paula Apsell, Executive
Producer, NOVA, who
Introduces clip from PBS
Special "Surviving AIDS,"
featuring Foundation
Scientist
Catherine Luzuriaga
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10:38-10:40
Paula Apsell introduces
NOVA clip
10:40-10:46
NOVA Clip airs
10:46
Paul Glaser or Susie
Zeegen conclude the
Speakers program.
10:46-10:55
Susie Zeegen and Paul
Glaser conduct Q&A
With the media
Note: Also seated but not speaking will be Janis Spire, Executive
Director of the EG Pediatric AIDS Foundation and Catherine
Wilfert, Scientific Director, EG Pediatric AIDS Foundation.
5
#
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For Immediate Release
Contact: Kelli O'Reilly
November 27, 1998
(310) 314-1459
FDA REGULATIONS ON DRUGS FOR CHILDREN ANNOUNCED
ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION: "THIS MEANS
THAT, FINALLY, CHILDREN CAN SHARE IN RESEARCH PROGRESS"
(WASHINGTON, D.C.) - The Federal Food and Drug Administration (FDA) today
released final regulations outlining its authority to require pharmaceutical manufacturers
to study their products for safety and effectiveness for use by children.
The Elizabeth Glaser Pediatric AIDS Foundation, which has relentlessly pressed the FDA
for such regulations, expressed its great pleasure at the release of the final regulations.
"Simply put, these regulations mean that -- finally -- children can share in the research
progress against disease," said Paul Glascr, Chairman of the Board of the Foundation and
the father of an HIV-infected child.
"Most of the time, children have been an afterthought in pharmaceutical research," said
Susan DeLaurentis, a co-founder of the Foundation. ""Drug companies have failed to
study drugs for safety in children for decades, largely because children are a very small
market that doesn't make a big profit. My friend and fellow co-founder, Elizabeth
Glaser, was shocked to find that the drugs that were available to treat her for AIDS were
not available for her young daughter as well. The current drug company practice is that
drugs are not studied for children unless there is a special reason to do so. These
regulations will change that practice so that drugs for kids will be studied unless there is a
reason not to do so. These regulations will make the future better for children with HIV
]
and for all sick children.
The Foundation is grateful to President Clinton, First Lady Hillary Rodham Clinton and
Vice President Gore for their help in making these regulations a reality," added Susan
DeLaurentis.
"Separate pediatric studies are needed," said Catherine Wilfert, Medical Director of the
Foundation. "Children are not simply little adults. Children - especially young
children-metabolize drugs differently and have different reactions to drugs than
grownups do. The failure of drug companies to do these studies means that parents and
FDA release lof 2
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pediatricians have to choose between ignoring a drug that is effective in adults or
exposing a child to a drug of unknown safety. They shouldn't have to make that choice."
The mission of the Elizabeth Glaser Pediatric AIDS Foundation is to identify, fund and
conduct critical pediatric AIDS research that will lead to the prevention and treatment of
HIV infection in infants and children. This commitment to stimulating collaborative and
focused research is unique in the scientific community. #
FDA release 20f2
13
Noa A. Meyer
10/26/98 12:00:01
o
PM
Record Type:
Record
To:
Laura E. Schiller/WHO/EOP, Christine N. Macy/WHO/EOP
CC:
Subject: Gay and Lesbian Accomplishments
There are two documents since Robin is still in the process of merging them. The second one is
difficult to open, so I cut it and and it is the attached text. Therefore, no need to open Todd
Sommer's doc.
THE CLINTON ADMINISTRATION
A RECORD OF FIGHTING THE AIDS EPIDEMIC
Our common goal must ultimately be a cure, a cure for all those who are living with HIV, and
a vaccine to protect all the rest of us from the virus. A cure and a vaccine: that must be our
first and top priority. - President Clinton, December 6, 1995
It has been more than 15 years since the epidemic of HIV/AIDS struck our nation. In that
time, more than 640,000 Americans have been diagnosed with AIDS and more than 385,000
men, women, and children have died of AIDS. President Clinton has worked hard to
reinvigorate the response to HIV and AIDS, providing new national leadership, substantially
greater resources, and a closer working relationship with affected communities. Funding for
AIDS research has increased by over 65%, and funding for HIV prevention has increased
32%. Funding for the Ryan White CARE Act has increased by over 280%. The Food and
Drug Administration has accelerated its drug approval process to record times, taken steps to
increase access by women to clinical trials, and issued a new rule requiring better data
collection on children. The President has preserved the Medicaid program, providing care to
50 percent of people with AIDS, including 92 percent of children with AIDS.
The Centers for Disease Control estimate that as many as 900,000 Americans may currently be
living with HIV or AIDS, and 40,000 to 60,000 Americans are being infected with HIV every
year. Women, communities of color, and adolescents are experiencing particularly high rates
of infection, with over half of new infections occurring in those under 25 years of age. That is
why President Clinton will continue to work to ensure that our nation responds aggressively
and compassionately to the challenges created by HIV and AIDS. This fight will not be over
until we have a cure and a vaccine to protect all Americans from this deadly epidemic.
PROVIDING NATIONAL LEADERSHIP
Creating the White House Office of National AIDS Policy. Acting as representative to the
President, this office brings greater visibility and direction to the war on AIDS by coordinating
and focusing federal AIDS policy and initiatives.
Appointing a National Advisory Council. The President created the Presidential Advisory
Council on HIV/AIDS to provide him and his Administration with expert outside advice and
clear recommendations on how the federal government should respond to the AIDS epidemic.
Developing a National Strategy. President Clinton convened the first White House Conference
on HIV and AIDS as well as the first White House Native American AIDS Policy meeting to
encourage multi-level cooperation and a continued dialogue between the various communities
fighting this epidemic.
Fighting Discrimination. President Clinton supported the Kennedy-Kassebaum Health
Insurance and Portability Act, which bans insurance discrimination against people with
pre-existing conditions including HIV/AIDS. He led the fight to repeal the discriminatory
?Doman Amendment,? which would have discharged all HIV+ military personnel; and
continues to enforce the Americans with Disabilities Act, which prohibits discrimination
against people living with HIV/AIDS. Additionally, the Administration has resolved nearly
800 cases alleging employment discrimination, obtaining monetary benefits of over $6.1
million.
Pushing for an AIDS Vaccine. On May 18, 1997, the President challenged the nation to
develop an AIDS vaccine within the next ten years. He has supported that goal by dedicating
an AIDS vaccine research center at the National Institutes of Health and encouraging domestic
and international collaboration among governments, medical communities and service
organizations.
INVESTING IN RESEARCH
Supporting the National Institutes of Health. The Administration has increased NIH AIDS
research funds by 67% in five years. In 1993, President Clinton signed the NIH revitalization
Act creating a permanent Office of AIDS Research at NIH and investing it with new authority
to plan and carry out the AIDS research agenda. He appointed Nobel Prize winner Dr. Harold
Varmus to head NIH and world-renowned immunologist Dr. Neil Nathanson to head OAR.
Accelerating AIDS Drug Approval Process. Since 1993, the Food and Drug Administration
has approved 9 new AIDS drugs, 20 new drugs for AIDS-related conditions, and three new
diagnostic tests. Included in the approvals are drugs known as protease inhibitors, which in
combination with previous drugs have shown tremendous promise in the treatment of HIV
progression.
Reducing Perinatal Transmission of HIV. The President is working aggressively with states to
eliminate perinatal transmission of HIV. As a result of Public Health Service guidelines
recommending the use of AZT by HIV+ pregnant women, the number of infants with
perinatally acquired HIV dropped 43 percent between 1992 and 1996.
Developing the Forum for Collaborative HIV Research. This new public-private group is
designed to catalyze collaborations among government researchers, pharmaceutical companies,
third-party payers, and the community to capitalize on recent scientific advances and learn how
to optimally use available treatment regimens.
INVESTING IN CARE
Supporting the Ryan White CARE Act. President Clinton in five years has nearly tripled
funding for the Ryan White CARE Act, the largest distributor of funds for medical and
support services to people living with HIV and AIDS. In 1996, Ryan White funds were first
earmarked for the AIDS Drug Assistance Program (ADAP) to help States assist those without
insurance to obtain much needed prescription drugs; since then, ADAP funds have increased
by over 780%.
Providing Housing and Mental Health Assistance. Since coming to office, President Clinton
has more than doubled funds for the Department of Housing and Urban Development's
Housing Opportunities for People With AIDS (HOPWA) program. He also awarded the first
federal grants though the Substance Abuse and Mental Health Administration to develop
comprehensive mental health services for persons living with HIV/AIDS as well as their
families and partners.
Protecting Medicaid and Social Security coverage. The President fought to preserve Medicaid
coverage for people living with AIDS. Nearly 50% of people with AIDS and 92% of children
with AIDS rely on Medicaid for health coverage. He also revised eligibility rules for Social
Security Disability Insurance to increase the number of HIV + persons who qualify for
benefits.
INVESTING IN PREVENTION
Supporting the Centers for Disease Control. The Administration has increased funds for HIV
prevention at the CDC by 32% in five years. Under the leadership of the Clinton
Administration, the CDC reorganized its AIDS prevention efforts to foster greater overall
coordination and enhance efforts to reduce sexually transmitted diseases and tuberculosis. The
President appointed Dr. Jeff Koplan to head the CDC and Dr. Helene Gayle to head the
CDC?s Center for HIV, STD & TB Prevention. In addition, President Clinton appointed
former CDC Director Dr. David Satcher as the nation's Surgeon General.
Reaching Out to Local Communities. President Clinton launched a nationwide HIV
prevention community planning process to give local communities more authority over the
shape and direction of AIDS prevention efforts. He also launched the Prevention Marketing
Initiative, focusing on the risk to young adults with frank public service announcements
recommending both sexual abstinence and the consistent use of latex condoms.
Keeping Water Clean. The President issued combined CDC and Environmental Protection
Agency guidelines recommending steps to purify drinking water in vulnerable populations
against Cryptosporidium, which can be fatal to those with compromised immune systems.
Increasing Access to HIV Prevention Services for Youth. In a directive issued on World
AIDS Day 1997, President Clinton instructed each Federal agency to identify all programs
under its control that offer opportunities to youth for preventing HIV infection and develop
within 180 days a plan through which those programs can increase preventative education as
well as support services for those already infected.
Forwarded by Noa A. Meyer/WHO/EOP on 10/26/98 12:00 PM
0
Robin J. Bachman
10/26/98 11:35:20
AM
Record Type:
Record
To:
Noa A. Meyer/WHO/EOP
CC:
Brenda B. Costello/WHO/EOP
Subject: Accomplishments
gay98.dft
Forwarded by Robin J. Bachman/WHO/EOP on 10/26/98 11:33 AM
Todd A. Summers
10/23/98 01:23:29 PM
Record Type:
Record
To:
Robin J. Bachman/WHO/EOP, Richard Socarides/WHO/EOP
cc:
Subject: Accomplishments
Here's the updated HIV/AIDS accomplishments - I checked the civil rights cases with Paul Richard -
I'll forward his email - Liz Savage from Justice said they've done very few new ones (5?).
I'll be available through signal - on my way to NYC.
I think the final should be vetted through OMB - Richard Turman before it goes out!!! I also think
we should add something on the CBC initiative, which is not yet crystallized but which we're
announcing on Wednesday.
Todd
ACMP1098.d
gay98.dft
Page 1
The Clinton-Gore Administration
A Record of Progress for Gay and Lesbian Americans
"[W]e have to make sure that for every single person in our country, all
Americans means all Americans." -- President Clinton, November 8, 1997
"It is time for all Americans to recognize that the issues that face gays and
lesbians in this country are not narrow, special interests, they are matters of
basic human and civil rights"
--Vice President AI Gore,
September 15, 1997
Fighting Discrimination and Hate
Fighting Anti-Gay and Lesbian Hate Crimes. Last year, the President announced his
sponsorship of the Hate Crimes Prevention Act during the historic White House
Conference on Hate Crimes. This crucial legislation would strengthen and expand
the ability of the Justice Department to prosecute hate crimes by removing
needless jurisdictional requirements for existing crimes and by giving Federal
prosecutors the power to prosecute hate crimes committed because of the victim's
sexual orientation, gender or disability.
The President and Vice President continue to push Congress to pass this important
legislation and to speak out against hate. As the Vice President said on September
19, 1998: "If we allow even a small number of Americans to harbor and act upon
malice and intolerance, we all feel the bitter sting of injustice. Let us send a clear
message to those would commit crimes of hate: it is wrong, it is illegal, and we will
punish you with the full force of our laws Crimes of hate against all people --
including gays and lesbians --should carry a punishment that is swift and severe. "
In addition to advocating the adoption of the current legislation, as part of the 1994
Crime Act, President Clinton signed the Hate Crimes Sentencing Enhancement Act,
providing for longer sentences where the offense is determined to be a hate crime.
Ending Discrimination Against Gays and Lesbians in the Federal Civilian Workforce.
President Clinton issued an Executive Order prohibiting discrimination based on
sexual orientation in the Federal civilian workforce. This makes the Federal
Government the largest employer in the world (1.8 million civilian employees) with
a non-discrimination policy covering sexual orientation. And the President, working
with a coalition in the House of Representatives, successfully defeated an attempt
to overturn this policy. The President also issued an Executive Order mandating
gay98.dft
Page 2
that security clearances no longer be denied based on sexual orientation.
Fighting Discrimination in All Workplaces. President Clinton and Vice President
Gore endorsed and are fighting for passage of the Employment Non-Discrimination
Act, a bill outlawing discrimination in hiring, firing and promotions based on sexual
orientation, making them the first U.S. President and Vice President ever to back
civil rights legislation for gays and lesbians. The legislation would ban discrimination
based on sexual orientation in the workplace, extending basic employment
discrimination protections to gay and lesbian Americans.
Standing Up for Basic Fairness. President Clinton blocked Republican efforts to
pass legislation prohibiting unmarried couples from jointly adopting children in the
District of Columbia and legislation which would have denied federal housing
money to localities with domestic partnership laws.
Fighting Discrimination Against People With AIDS. President Clinton directed the
Justice Department and the Equal Employment Opportunity Commission to
vigorously prosecute those who discriminate against people with AIDS, leading to
actions against health care providers and facilities that violate the Americans with
Disabilities Act.
Opposed Anti-Gay Ballot Initiatives. President Clinton strongly opposed anti-gay
ballot initiatives in Colorado and Oregon. His two nominees to the Supreme Court
voted to overturn Colorado's Amendment 2, declaring such initiatives
unconstitutional violations of the Equal Protection clause of the Constitution.
Fighting Discrimination Against People with AIDS in the Military. President Clinton
successfully fought for the repeal of the Dornan amendment, which would have
required the expulsion of all HIV-positive military service members regardless of
their ability to do their jobs. Prior to its repeal, President Clinton took the highly
unusual step of unilaterally declaring the law unconstitutional and he instructed the
Department of Justice not to defend it in court, becoming the first president since
Franklin Roosevelt to take such action.
Helping Those Fleeing Persecution Because of Their Sexual Orientation. President
Clinton's Administration is the first ever to grant asylum for gays and lesbians
facing persecution in other countries. He sent gay human rights activist Keith
Boykin to Zimbabwe as part of an official United States delegation and he
investigated human rights abuses of gays and lesbians there.
Banning Insurance Discrimination. President Clinton fought for and signed the
Kennedy-Kassebaum Health Insurance Portability and Accountability Act, which
bans insurance discrimination against people with pre-existing medical conditions
including HIV/AIDS. In addition, President Clinton issued a directive that ensures
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that all providers of Federal health insurance abide by non-discrimination rules
including sexual orientation.
Fighting Harassment of Students Based on Sexual Orientation. President Clinton's
Department of Education has issued landmark guidance that explains federal
standards against sexual harassment and that prohibits sexual harassment of all
students regardless of their sexual orientation.
Welcoming the Contributions to Service of All Americans
President Clinton has Appointed the Most Inclusive Administration in History.
President Clinton is the first President to appoint an openly gay or lesbian person to
an Administration post. The President has appointed more than 150 openly gay
and lesbian appointees, including:
Virginia Apuzzo, Assistant to the President for Management and
Administration, the highest ranking openly gay or lesbian person ever to
serve in the Federal Government and the first openly gay or lesbian Assistant
to the President;
Director of the U.S. Patent and Trademark Office Bruce Lehman, the first
openly gay man to be confirmed by the U.S. Senate;
Fred Hochberg, Deputy Administrator of the Small Business Administration,
the first openly gay person to be appointed Deputy in a U.S. cabinet-level
agency:
Assistant Secretary of Housing and Urban Development Roberta Achtenberg,
who served in this position from 1993 to 1995;
Gail Shibley to serve as the Director of External Communications for the
Federal Highway Administration;
The President has also nominated, and continues to fight for, James Hormel
to be U.S. Ambassador to Luxembourg -- if confirmed he would be the
first-ever openly gay United States ambassador.
Reaching Out to All Communities. This Administration is committed to a policy of
inclusion. President Clinton named the first Presidential Liaison to the gay and
lesbian community, Marsha Scott. Later, he named the first openly gay senior
policy adviser on civil rights issues, Richard Socarides. He become the first sitting
president to speak before a gay and lesbian organization on November 8, 1997,
when he deliver the keynote address to the Human Rights Campaign National
Dinner. In September 1997, the Vice President addressed a reception of the
National Gay and Lesbian Task Force, the first Vice President to speak at a gay
rights event. In 1998, the Vice President has spoken before the Human Rights
Campaign in Washington, D.C. and the Empire State Pride Agenda in New York
City. Both the President and the Vice President regularly meet with gay and lesbian
leaders.
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"I think if we really could create a society where there is opportunity for all and
responsibility from all and we believed in a community of all Americans, we could
truly meet every problem we have and seize every opportunity we have.' " --
President Clinton, November 8, 1997
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