Pasadena, May 1997, the 3rd National Conference on Women and HIV.
The four-day conference drew more than 2,000 scientists, infected
women and health policy experts. I was among the 500
HIV infected women to attend the conference. I'm a
member of the Women Alive Editorial team. I was looking
for some useful information that I could share with my
friends and write about in our newsletter. I had a lot
of expectations and hope. And yes, I was very excited to
I went to hear a lot of different speakers but
I have to tell you guys that I was so lost! I mean, I
didn't understand most of what the researchers were
saying, (not much was in laymen's terms).
But, I understood that in the first 6 months of last year more women died of AIDS than the year before. I understood that the pills they give me have only been tested in men's bodies and that we need more of us to participate in clinical trials. Most of the trials are not about us, they are about men & others won't let us in, and still others make it impossible for us to participate.
I understood that the researchers all have the same
answer for everything we say, which is: "I hear your
pain." My friend, Sharon, stood up at one session to ask
a question, and the lady at the podium just talked over
her and kept saying that we have to work together. But,
my friend just wanted to know that when they say
"individuals" in their presentations, are they talking
about men, or about women?
See, because my friend is
taking a lot of pills and she is having a hard time. She
just wanted to know if other women were also having a
hard time. Because it seems like the scientists don't
really know how to treat this disease in women. And when
the lady at the mike kept saying: "You have to cooperate
with us." Sharon, said: "I am cooperating. Look, here I
am, a woman with AIDS. Put me in a trial. Give me some
medicine that I can take." Yeah, I understood all that.
I understood that if they tried harder, they could get
more women to be in their studies.
We held meetings in
the PWA lounge and came up with demands and a plan of
action. Infected women from all over the country and
some from Africa were there. A diverse group of women
from all different walks of life. We figured if the
people who are supposed to be researching us and taking
care of us didn't want to listen to us, then maybe the
media would listen. And they did.
around the conference with our signs and then we marched
right into that press room and took over the
microphones. More than 150 HIV-infected activists
interrupted a news conference to demand a national plan
to address the unique problems of women, including
African-Americans, Asian-Americans, Native Americans,
Caucasians, and Latinas. "What is the government doing
for me? Where is the plan and the funding to save our
lives?" This was the main question we wanted the
The women also brought to the forefront the
sorry state of women's access to cutting edge
treatments. It's easier to get AZT to prevent
transmission to babies than to get HIV care and
treatments for ourselves. Woman after woman spoke to the
cameras. We had a lot to say.
Dr. Alexandra Levine, leader of USC's research team and director of
the university's Norris Cancer Center was there at the
press conference. She was quoted as saying: "...AIDS
deaths among women with HIV in America are up 3% while
down 15% among men." (According to figures at the
federal Centers for Disease Control in Atlanta). "Women
represent about 18% of the epidemic in the US and
comprise only 12% of study participants in clinical
trials. We must change the course of HIV/AIDS research,
treatment and prevention efforts so that women's issues
receive equal attention."
That's why we marched! We're
mad that we don't receive equal attention. We're mad
that we have to demand it, and we're mad that more of
our infected sisters are going to die! We took our
signs and marched through the exhibition hall where all
the pharmaceutical companies were and even more women
joined in the march.
We marched because, so what if they
do come up with a cure? Who's "the cure" for? How do
we know if it will work for women? We will just have to
start all over again. Only because we forgot the other
20% of the AIDS cases!
We know the medicine is working
for the guys, (and we know it's not working for all of
them and we are sorry for that). But it's working for
most because the death rate decreased for men.
Michelle Lopez, fierce HIV positive lesbian AIDS
activist, from Brooklyn said: "We are all very happy
for our gay brothers. We are happy that they are not
dying as fast as they used to and that they have access
to treatment and care. We are truly happy that the new
medications are working for them. But, we are pissed as
hell that we, the women, are worse off, that our rates
are up from last year and we're dying faster."
I say, we need researchers to study us. We need access to
treatments, care, and clinical trials. And here's
something else I don't understand: How can you
researchers tell us what we need when you do all your
studies on men? How do you think we feel when you
(researchers, and you policy makers) want us to try
something that has only been tested on men? What is
going on in the world that has both men and women who
are infected and all you want to test are men?
It's just like my AIDS activist friend, Maxine Wolfe
said: "...the researchers say there are too few women to
be included in AIDS clinical research. Some research,
such as dosing studies have very few participants. These
studies are done with as few as 5 or 10 people. Women
are almost totally absent from these studies, which
assess how drugs are absorbed and cleared by the body
which influences toxicity, dosing, safety and
Helloooo? Researchers!! Did you ever
think that just maybe our bodies, the bodies of women,
just might absorb and metabolize drugs differently than
Once again who is "the damn cure" for?
Most of the time we can't even get the drugs that are
out there. They don't even let us enroll in the
clinical trials until the drugs are already approved!
And if they came up with a cure tomorrow, even if we
could get it, it might not even work for us!
Like Mary Lucey said: "If you were the richest woman in the
world, and had access to the best health care plan, and
David Ho was your doctor, you still wouldn't know how
the AIDS drugs work in your body."
Do research to save women's lives! That is our message and that is why
we spoke out during the sessions and at the press
We need to keep marching until we get
medications to save our lives! And until there really is
a cure and it damn sure is for us and for all people
with this damn virus. We have to be more demanding. We
must take action.
It's like what Marlene Diaz
said: "Write a damn letter!" ... to your congress
person. National policy really does affect our survival.
It determines whether or not we have access to the AIDS
medications that prolong life. It determines whether or
not women are included in AIDS research, and that can
determine whether we live or whether we die faster.
Marlene was one of the chairpersons for this conference.
Along with Congresswoman Maxine Waters and newly
appointed White House Director of AIDS Policy, Sandy
Therman, Marlene was an opening keynote speaker. As an
AIDS activist from New York and an infected woman, she
"Early on in the AIDS epidemic, the gay community
(both men and women) started a movement to inform and
educate each other and the public. They mobilized and
became a very strong and effective political voice.
Women MUST DO THE SAME. Some of those people now have
the power and the ability to directly affect policy. We
can and must do the same."
Michelle: "It seems to me that infected women are the best advocates, and the best source of information for researchers and policy makers when it comes to a national policy on AIDS that truly
involves women. We understand what we need, what's working and what isn't. Policy makers should listen to us and allocate money to find answers to the questions that we ask.
Remember that big meeting in Washington DC
in December of 1995? That day there were lots of women
telling the president and telling Donna Shalala and
telling Patsy Fleming that women have to be included in
any and all research and protocols on AIDS. And
president Clinton said he wanted scientists to find a
vaccine and find a cure, and he said that he HEARD our
issues about lack of access to treatment, lack of access
to care and lack of access to clinical research. But
what did they wind up doing for women? Nothing. They
wound up caring only about our babies and not about us."
Hellooo? Is anybody out there? This is Justina again:
There wouldn't be any babies if it weren't for us. Do
you think that just maybe, you could do research to save
Fight For Your Life
This is where the national policy and us women protesting, organizing, and marching comes in. We went to the White House and talked to those people. As always they said they would do things to help us and they didn't! If we want to change national policy, if we want equal access to treatments, if we want to be included in AIDS research and if we really want to fight for our lives then we have to take a more proactive, militant approach.
And all the women out there dealing with this disease; doesn't it make you mad that the rate of AIDS deaths in women increased over
Editors Note: The latest figures continue to
show a big gap in survival rates between men and women
with AIDS. The recent statistics for the entire year of
1996 bring good news and bad news. Survival rates
increased for men by 22% and increased for women by only
7% indicating a 15% difference in probability of
And doesn't it make you mad that one of the
reasons for this is because they don't study how the
medications work in women? Like Dr. Levine said:
"Leaders across all disciplines related to HIV/AIDS can
work together to redouble our efforts to close the major
gaps in HIV/AIDS research, treatment, prevention, and
policy as they directly affect women."
I know we have to do our part too. And I can tell you that it
is not easy. These clinical trials are not even designed
with us in mind. It takes a dedicated effort to
participate in them, if you can get in. I say to my
sisters; check it out. Ask your doctor if there are any
studies going on in your area. Read about clinical
trials. Try to find one that you think might help you
live longer. Talk to the guys about it. Talk to each
other about it. Call the Women Alive hot line
(1.800.554.4873). Talk to a treatment advocate. Read the
consent form real close. If you don't understand it call
us or call your local AIDS organization and ask someone
to explain it to you before you join. And if you want to
get in and they won't let you, go to wherever they are
and you march, and we'll march with you!
And hey, you researchers and you policy makers; you could make it a
lot easier for us. Our lives are complicated and we need
you to try a lot harder to accommodate us. We are
willing to work together but, why don't you doctors,
researchers and policy makers; why don't you march with
us? Why don't you help us to put pressure on the FDA,
Donna, and the NIH? After all, we are the ones who are
sick. And you are the ones who are supposed to be
helping us. We will not stop marching and we will ACT UP
until we get access to HIV treatments, and AIDS
research. Until There's A Cure For All of Us!