Meet 11 Women Leading the U.S. Fight Against HIV in 2019

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Credit: Tim Murphy

On May 6, 2019, in the Harlem neighborhood of New York City, the venerable women's HIV/AIDS services provider Iris House -- named for HIV activist Iris De La Cruz, who died of AIDS in 1991 -- held its 14th annual day-long Women as the Face of AIDS Summit.

Featuring many familiar faces in the world of New York HIV research, health care and services, the day's plenary and breakout sessions tackled such topics as best health care practices for transgender women, the importance of good storytelling to impact public policy, tips for better group facilitation, women and pre-exposure prophylaxis (PrEP), HIV in rural areas (a handful of attendees were from South Carolina), and developing successful peer advocacy programs.

TheBody asked a variety of attendees living with HIV how they were doing, what progress they thought had been made in the HIV field, and what challenges remain when it comes to ending the HIV epidemic, particularly among both cis and trans women of color. We also wanted to know: What's your source of joy?

Credit: Tim Murphy

Gayle Gold, Queens, New York City

Gold was diagnosed with HIV in 1990.

Tim Murphy: What brought you here?

Gayle Gold: I like to learn new things about HIV and health, see old friends and meet new ones.

TM: Nice! What's still really challenging when it comes to preventing and treating HIV?

GG: There's still a lot of stigma for people of color. We also need to get more funds for peer networking and advocates, mentors. People learn better with peers than with doctors and higher-ups. I'm a member of the Iris House community.

TM: Tell us something about Iris House.

GG: I like their nutrition services because it's hard to eat on a fixed income. They have a pantry and gift cards to go shopping for healthy fruits and vegetables.

TM: What has and hasn't changed about living with HIV since 1990?

GG: Medications are better. You take fewer of them now, with less side effects. A lot of my friends are living longer because of eating healthy and exercise. But people are still dying because they still don't know they have to be compliant with their medication. And doing drugs and addiction sometimes overrules adherence.

TM: What would you say to people with HIV using drugs?

GG: One step at a time! It might not be easy, but try to have a good support system. If you're not high you can probably take your meds better. Everyone has an addiction. Mine is food. I have to lower my cholesterol.

Credit: Tim Murphy

Estoria Wright and Shirley Huggins, South Carolina

Wright (on the left in the photo) is a member of Positive Women's Network-USA (PWN-USA); she was diagnosed with HIV in 2014. Shirley Huggins was diagnosed in 1989.

Tim Murphy: You're both wearing "presenter" tags. What did you present on?

Estoria Wright: The importance of support groups. It's good to be around women who know what you're going through. You can talk with them, cry with them, write a journal. It's like family outside your family, because sometimes your family just doesn't understand about living with HIV.

TM: What do you wish people understood?

EW: That it's hard! We have better medicine now and we can be HIV undetectable on meds, but we still have to deal with stigma and HIV criminalization laws.

TM: Shirley, what hasn't changed?

Shirley Huggins: There are still so many ignorant people out there. It took me a long time to get over the stigma myself and talk about [HIV] openly. With support groups, we can show each other that we don't have to hide -- because we're humans, too.

TM: It's important to have joy in our lives amid the struggle. What's your source of joy?

SH: My son. I fought a hard fight for him. I was HIV positive when I had him but he was born negative, thank God.

EW: Living openly with my status, because I wasn't there at the beginning. Waking up every morning being able to eat, because when I was diagnosed I had only six [CD4 cells] with an infection in my throat and I couldn't eat, drink or barely walk.

Credit: Tim Murphy

Connie Dukes, Brooklyn, New York City

Dukes facilitates women's initiatives at GMHC, and is a member of PWN-USA; she was diagnosed with HIV in 1991.

Tim Murphy: What's the most pressing issue right now for women with HIV?

Connie Dukes: Our right to be at the table when it comes to policy. They shouldn't be able to tell us what to do with our bodies. It's my choice, whether I want to have abortion or have surgeries to change my gender.

TM: Do you think more women at risk for HIV should go on PrEP?

CD: Yes. We have to keep doing outreach, going to where the people are: the churches, schools, clubs, beaches.

TM: GMHC's 34th annual AIDS Walk is happening May 19. Will you be participating?

CD: I can't do the walk anymore, so I'll do table work, handing out condoms and encouraging people to get connected to community resources.

TM: What's your source of joy?

CD: Music, reggae, love and revolution!

Credit: Tim Murphy

Patricia Taylor and Cynthia Cocagee, East Orange, New Jersey

Taylor (on the left in the photo) was diagnosed in 2008; Cocagee has been living with HIV since 1980.

Tim Murphy: Cynthia, since 1980? Wow!

Cynthia Cocagee: That's right. Everyone was dying, but I'm still here because I have a purpose. I was lonely until I became an advocate in agencies and got new friends. My purpose is to be a role model and advocate for newly diagnosed people with HIV.

TM: What do newly diagnosed people need to know?

CC: Education is power, so learn how to take care of yourself! Take your medicine and if anything isn't right, go tell the doctor.

Patricia Taylor: Anything! No question or concern is stupid.

TM: How are you coping with HIV in the age of Trump?

CC: Ooh, you just messed up. Time to go! [stands up and leaves]

PT: We know there's a God so we don't even pay [Trump] attention. God is my president.

Credit: Tim Murphy

Monique Mackey, Bronx, New York City

Mackey is a senior community health outreach worker for Amida Care. She acquired HIV from her mother, but wasn't diagnosed until 1992, at the age of 12.

Tim Murphy: What was it like learning at 12 that you had HIV?

Monique Mackey: I didn't know what was going on. Doctors came in covered head to toe and told me they had to do more research but that something very bad was going on in my body and they wanted to help.

TM: What were your teen years like?

MM: Words can't even describe. It was my deepest, darkest secret and only my family knew. Then I became a transgender woman at 15!

TM: What's the hardest thing about being a trans woman with HIV?

MM: The stigma. The stereotype that we're all deviants out prostituting ourselves. We need to get the facts out there in the mainstream. We give it to the service providers, but let's give it to the white folks who sit on Capitol Hill.

TM: What's your job like?

MM: I work with Amida Care's transgender health program helping members get gender-affirming surgeries done. My source of joy is when I can help another young lady or gentleman become their true gender self.

Credit: Tim Murphy

Yolanda Diaz, Bronx, New York City

Diaz is a health educator at Iris House. She was diagnosed with HIV in 1989.

Tim Murphy: What do you educate about?

Yolanda Diaz: I work under the CDC WILLOW program for women with HIV, which is Women Involved in Life Learning from Other Women. I facilitate a four-day intervention about social support, healthy and unhealthy relationships, condom use and learning how to cope with HIV.

TM: What's been the hardest and maybe the best part of 30 years living with HIV?

YD: When I was first diagnosed, I had no information. I was using drugs and kept on doing so for seven years because the people who diagnosed me told me that I was gonna die, to go home and sell my life insurance. Well, lo and behold, 30 years later, I'm living, looking after my grandson and working in the field helping out other women. That's been the best part.

TM: On the policy level, what's the biggest remaining challenge around women and HIV?

YD: We have to continue to advocate for women living with HIV until the day they can come out and advocate for themselves. We need to continue empowering them and helping them build their self-esteem.

TM: Should more women at risk for HIV be on PrEP?

YD: PrEP is good but women should educate themselves about it and talk to their doctor about it. Don't try to buy PrEP on the street!

TM: New York governor Andrew Cuomo has said that the state is on track to end AIDS by 2020. Agree?

YD: No. Maybe by 2030 or 2035. And the most important thing we have to get out there is the fact that undetectable equals untransmittable, U=U.

TM: What's your source of joy?

YD: I'm a dancing queen, baby! Salsa, rock, hip-hop, cha cha cha, the Electric Slide, bachata, merengue. I love Bad Bunny!

Credit: Tim Murphy

Stephanie Vasquez, Bronx, New York City

Vasquez is an administrative and food pantry assistant at Iris House. She was diagnosed with HIV in 2007.

Tim Murphy: What's been the most challenging part of your 12 years living with HIV?

Stephanie Vasquez: Finding stable housing, medical care and financial assistance. Even more than stigma and the emotional side. I don't care what people say about me.

TM: How are you doing with those life needs?

SV: Right now I have stable housing, but due to my having a job, my financials are not stable because they closed out all my benefits and I'm not making ends meet.

TM: What's the single greatest challenge still facing women living with HIV?

SV: The silence, disclosure and stigma. People still think that HIV has "a face," when really anybody can have it.

TM: What about your own coming out process?

SV: I came out on stage at the Apollo in Harlem on World AIDS Day 2015. It was nerve-wracking but I felt I had to do it for myself so I could be open with myself. I was in denial. So that was my first step in becoming better with myself and becoming adherent to my meds and helping others.

TM: What’s your source of joy?

SV: Working for the community and helping individuals who are positive like me achieve viral suppression, housing, and jobs if they're able to work.

Credit: Tim Murphy

Ingrid Floyd

Floyd is the executive director of Iris House, a position she has held since 2006 (though she began working at the organization in 2005 as its deputy director). She is not living with HIV.

Tim Murphy: What's changed the most in your 14 years at Iris House?

Ingrid Floyd: Women today are more open about their status and willing to disclose. A lot of our women are virally suppressed, which is a huge accomplishment. And we have a really good linkage-to-care rate.

TM: I detect a Southern accent.

IF: Yes, I'm from South Carolina. We actually have a group of six women from my hometown of Orangeburg here today. There aren't a lot of services down there.

TM: How would you describe Iris House?

IF: We're a comprehensive support agency for women and men living with HIV in New York and New Jersey. We try to make sure that people who are disenfranchised and underserved are connected to much-needed care.

TM: Tell us a little bit about the founder, Iris De La Cruz?

IF: Iris was one of the first female advocates around HIV in the city at a time when services were mostly focused on gay white men. She saw there was an unmet need for women like herself who were living with HIV, so she started support groups in her home.

TM: What is still the biggest nut to crack when it comes to ending the HIV epidemic among women, especially women of color who are most affected?

IF: It's what we heard today from Dr. Fullilove about the deeper inequities [that drive the epidemic]. How do you address the social determinants of health, housing, access to child care, mental health services, culturally and gender-specific behavioral health services?

TM: Any recent story of hope to share?

IF: We have a client who would never talk to her family about having HIV, but in the past week, she had one of our health educators go home with her to disclose her status to her daughter and son. She was here at the summit today.

TM: That's beautiful. And what's a source of joy to you?

IF: Coming every day to a job where I get to help people. Before, I was in corporate and I would always say, "We're not solving world hunger or peace." But here at Iris House, we're actually solving someone's housing or food issues. The thank you's that we get make all the hours we put in worth it.

Credit: Tim Murphy

Pat Kelly, Orangeburg, South Carolina

Kelly was diagnosed with HIV in 1985.

Tim Murphy: So you started a support group in South Carolina for women living with HIV?

Pat Kelly: Yes, it's called A Family Affair because if I'm a person living with HIV, it affects my whole family.

TM: What are the needs of the family of someone living with HIV?

PK: They need understanding. We help people with HIV educate their family because we don't want them thinking 1985 stuff like you can't touch someone with HIV. Then the family can help the person with HIV stay connected and on their meds.

TM: What's HIV like in South Carolina?

PK: The stigma is so thick you can cut it with a knife. There are still backward ideas, like you can get HIV from touching someone. A friend of ours who was diagnosed in 2017 just died for lack of love and care. Her family was giving her paper plates and plastic silverware. So the mindset of people in the South -- they're slower. There's some progress but it's mostly by people with HIV, when they get a chance to meet someone else who is open with their status.

TM: What has your own 34-year journey with HIV been like?

PK: Once I learned to accept my diagnosis and let go of the stigma, I got free and the journey got easier. Now what people say doesn't bother me. I'm here for a purpose, to help the next sister or brother know that they can live with this. Support groups are the places that help people grow.

TM: What's a source of joy?

PK: Being around my grandkids. And crocheting and making jewelry. A while back I got involved with Common Threads, so we've been doing USCA conferences and sitting there making jewelry, hoping it'll be a blessing to whoever buys it because they're helping us get to a conference or do some educating in our communities.