Here in the United States,
women comprise about 27% of HIV infections, up from about 8% in 1984. In many countries around the world, women already represent over 50%
of HIV infections. Rates of sexually transmitted infections among
youth and teenage pregnancy have risen over the last several years –
both indicators that we may soon see a corresponding rise in HIV infections
among both young women and men. And, although generally considered
a chronic manageable condition in the U.S., HIV continues to be the
leading cause of death among African American women aged 25 to 34 years
Yet most of the general public
in the U.S. think of HIV as a men’s disease and some members of the
HIV advocacy/policy community have gone so far as to say "HIV/AIDS
in this country is a men’s disease."
The U.S. Positive Women’s
Network believes we urgently need a comprehensive, outcomes-oriented
National AIDS Strategy that addresses homophobia, HIV stigma, and gender
and racial disparities in access to awareness, prevention, testing,
treatment and care.
This Women & Girls HIV/AIDS
Awareness Day, I spoke to several HIV-positive women leaders around
the U.S. to hear their perspectives on why HIV matters, in their own
words. Each of the women interviewed are also mothers and founding
members of the U.S. Positive Women’s Network (PWN), a national membership
body of women, including transgender women, living with HIV.
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Interviews were conducted with:
Demetra Tennison, Peer Advocacy
Coordinator at Women Rising Project in Austin, TX.
Loren Jones, Bay Area Positive
Women’s Network Organizer, Oakland, CA.
Vanessa Johnson, Executive
Vice President, National Association of People with AIDS, Washington
DC metro area.
Cinnamen Kubricky, Peer Advocate
at Christie’s Place and Co-chair of Planning Council, San Diego, CA.
NK: Why does Women
and Girls HIV/AIDS Awareness Day matter?
Demetra Tennison: Early
in the epidemic, women weren’t seen as people at risk. Yet
women and babies were dying. And today we need to bring awareness
so women don’t see this as a disease to feel isolated about or oppressed.
It concerns me that women are still dying from this disease – due
to being diagnosed late, showing up in the Emergency Room with a CD4
count under 200, and refusing to take medication because of stigma.
Cinnamen Kubricky: We
need to educate women and girls that this disease is 100% preventable.
Knowledge is power, ladies! With education we can save the next
Loren Jones: There is
a rise in HIV/AIDS in women across the board of all ages, races, ethnicities.
Numbers should be going down but are going up — because women don’t
perceive themselves as being at risk for HIV.
Vanessa Johnson: It’s
the one time of year we see a particular focus on women as a whole group
– cutting across race, age, socio-economic status. March 10th
is the day all about ALL WOMEN. But March is also Women’s History
month and we need to understand women’s health and HIV in the context
of women’s history. We need women’s organizations that have not
traditionally focused on HIV/AIDS to issue statements to their constituencies
that this day matters, and HIV/AIDS matters and is a real issue for
women, because it is cutting short our productivity and our lives and
that’s less of a contribution we can make to our community.
NK: What do you want
people to know this Women and Girls HIV/AIDS Awareness Day?
DT: As a woman living
with HIV, diagnosed late in my own illness, I want people to know this
can happen to anybody. I’m a mother, a sister, aunt, and niece.
HIV does not discriminate. No person is exempt from contracting
HIV. We have this Awareness Day because we still need it!
CK: If you get tested
early on this disease can be manageable – it is not a death sentence.
And even if you’re HIV positive, you can do great things. All
women’s overall health is important – HIV is just one facet of who we
VJ: I want them to know
we have to stop judging people. Our judgments about HIV/AIDS are
really judgments of what we think about various types of people in this
country, rather than just recognizing everyone as human beings.
Also, while there are a significant number of people today living with
this disease, there are also a lot of women and men who died because
our government didn’t act quickly enough. Our government’s shortsightedness
and homophobia has cost the loss of many lives. The U.S. government
basically signed a death warrant for thousands of people. We failed
to protect mothers, wives, sisters, the folks who take care of our families
and communities. And when you don’t take care of the caretaker
you are doomed.
NK: In your geographic region,
what are general attitudes about HIV?
DT: In Austin, TX, people
are aware HIV exists but really don’t know exactly how it’s transmitted.
People especially don’t believe a partner they’ve been with for a
long time can infect them.
CK: San Diego is very
conservative. People don’t talk about HIV. The general
thinking out here is that only gay men and drug addicts are at risk.
Stereotypes could cost Southern Californians their lives.
LJ: I live in Berkeley,
CA near a college and I see a lot of risk behavior. Berkeley is
a party town, and make no mistake – alcohol is still the #1 party drug
leading to sexual activity. I don’t see enough attention or conversation
about sexual risk.
VJ: My son says people
are aware but they’re not afraid. I have to respectfully disagree
with my son. Older people are afraid. Younger people are
in denial. There is a level of silence and secrecy that keeps
NK: How have you seen attitudes
change towards women with HIV over the course of your diagnosis?
CK: The biggest changes
have been in HIV service delivery. In 1993 they didn’t have gynecological
services for women with HIV or doctors specifically serving women.
There was also very little help for children – either HIV infected or
affected (family members of those living with HIV)
VJ: Yes. Now there
is more of an acceptance that the issue of women needs attention – and
that it’s not at the expense of anyone else! In the Black community
with the National Gay Black Men’s Advocacy Coalition and the National
Black Women’s HIV/AIDS Network we’ve started to have discussions about
what we can do to advocate for each other. But I don’t see that
level of conversation yet in the community at large, and that’s the
only way we will actually all get our needs met.
NK: What role do you think
HIV-positive women can play on Women and Girls HIV/AIDS Awareness Day?
DT: I would say
it’s our job to educate others. If you are taking care of yourself
and know what it’s like to get a diagnosis, go educate other women.
We have to be our sister’s keeper – help each other out. Show
other women that HIV doesn’t have a look anymore so you can’t tell if
someone is infected, and that if a woman is positive, she can live with
this disease. It doesn’t have to control her life.
CK: We need to speak out and
stand proud. Support the next woman who doesn’t know her status
to get tested – and make sure she knows that if she tests positive she
can live with this. We are survivors and can accomplish great things
– from graduating college to raising a family.
LJ: I think we need to show
our variety – that there are woman of all ages, histories, lifestyles,
who have been living with HIV for varying numbers of years. People
need to be really clear that you cannot tell by looking at somebody
who has HIV. If you actually took pictures of women with HIV in
the U.S. you’ll see relatively healthy looking American women who sit
next to you on the bus every day.
VJ: Our goal as the Positive
Women’s Network is to support those women willing to speak out and show
the totality of a woman’s life. If she is HIV positive she still
goes to school, she’s still a mom, she still leads a normal life and
has a lot of other concerns. Sometimes there will be negative
consequences to speaking out and we have to support women through that
as well. But until we normalize HIV nothing is going to change.
Support means supporting the whole person’s life. HIV is one issue-
but we are still raising a family, going to school, running an organization.
It adds a lot of value to disclose your status and if you want to live
long with this disease you have to tell someone. But also we have
to provide people with real choices about disclosure and support those
who make a conscious decision not to disclose – not because they’re
afraid. On Women & Girls HIV/AIDS Awareness Day, HIV positive women
should partner with folks in the community – service providers or places
where conversations about HIV are NOT being had. HIV positive
women are dealing with many other things – diabetes, hypertension –
and by finding new places to speak up they can free other women to talk
about what’s going on with them.
NK: As a positive mom or
grandmother, what are your hopes for the next generation(s)?
DT: That this won’t be
a taboo subject – it will be something they can openly talk about.
Also that youth can be accurately educated and know what they need to
know to practice safe sex. It’s one thing to say "don’t have
sex". You have to think about reality. Teenagers are
having sex and I want them to be on top of their game and know their
options. I do prevention work and education in schools and many
teenagers don’t know their options because schools are just teaching
abstinence without giving youth the information they need to make decisions.
CK: As a positive mom,
my hopes for my children are that they will be more accepting, educated,
and that they won’t be ashamed or hide if they know someone who has
HIV. They need to be educated about STDs, HIV and sexuality in
general. Also that my daughter does not become another statistic
– she had all her tests last week and is negative and feels good about
it. My daughter is determined to become a researcher and find
the cure for AIDS.
LJ: I want to see the
epidemic end. Not just lessen. Not just data being collected
more accurately. I want to see a vaccine, a cure, whatever it
takes for this to end completely. One thing this country proves over
and over is that we can do anything we have the will to do — so we
need to exert our will to put a stop to this epidemic.
VJ: That on some level
they are paying attention. That we as adults will do what we need
to do to save our young people. That we can say, "I don’t
exactly know what your life is about but I was young once too and I
understand what you’re going through." When I was diagnosed
I was told I’d only live seven years, but now I’m going on 20+, and
I’m only here because I listened to others.
NK: What would you say to
President Obama about the kind of policy change you think is needed
this Women & Girls HIV/AIDS Awareness Day?
DT: Abstinence has been
pushed in our schools and it’s not working. We need comprehensive,
age-appropriate sexuality education, such as the REAL Act. We
also need to break down the stigma about people with HIV.
CK: Women and girls with
HIV need support services along with medical care. Without support,
we won’t be able to stay in care.
LJ: We want everyone
educated about the disease in a way that is not judgmental or accusatory
of any lifestyle over another. We want the information clearly
stated, factual, and scientific so we can end this epidemic and so we
don’t continue to lose women in the most productive years of their lives.
HIV/AIDS is the number one killer of African American women ages 25
to 34 and that should be unacceptable. I don’t think we are too
delicate as a country to talk about it — we talk about anything else.
VJ: The U.S. government
must embrace prevention both for people living with HIV and for those
who are vulnerable to contracting HIV. There’s not enough money
to treat this disease away. It is very expensive to make us all
undetectable. We have to prevent HIV in the first place.
NK: Anything else you’d
like to share?
DT: Knowledge is power.
If you have not been tested, take a test. If you have not talked
to your kids about sex, talk to them honestly. Education starts
CK: Women and girls have
a powerful voice and with it we can make change.
LJ: Women should not
be afraid to find out what their HIV status is. There are a lot
of long term survivors, healthy, happy strong women who happen to have
HIV or AIDS. It’s not a death sentence. There’s a lot of
hope out there. We need to be able to move on and lead normal lives.
VJ: I would like to see every
major national organization on women issue a statement to their constituency
for Women & Girls HIV/AIDS Awareness Day in 2010.