This article is part of “AIDS Is 40. But It Really Isn’t,” a series of personal stories, news reports, and interviews that pushes back against commonly held narratives regarding the start of the U.S. HIV/AIDS epidemic.
On June 2, the Today show released a six-minute video news report titled, “40 years since first AIDS cases, men living with HIV share their perspectives.” In it were old news clips from the early years of the epidemic showing imagery of hospitals, clinics, and ill-appearing men in beds. Well-known men with HIV were mentioned, including Rock Hudson, Magic Johnson, and Pedro Zamora. Later in the segment, four men from different generations were interviewed about their lived experience with HIV, the anguish of the early years of the epidemic, scientific advances—including undetectable equals untransmittable (U=U)—and HIV-related stigma.
While the news report was informative, many people (myself included) wondered how the Today show could release an entire report on HIV and not include cisgender and transgender women. Women living with HIV and their allies expressed anger over the lack of representation of cisgender and transgender women in the segment and posted about their feelings on social media. Positive Women’s Network-USA tweeted, “Why didn’t @Todayshow include #women living with #HIV in their coverage of #HIVat40? Cis & trans women would like to know! We are here & available to answer your questions & connect you with amazing women living with HIV who can tell you how they’ve been impacted by the epidemic.”
HIV activist Barb Cardell also tweeted, “Hey @TODAYshow thank you for honoring the anniversary of 40 years of HIV but you need to do better! Women, Transgender & gender diverse folks have been here since the beginning and must be included. #OurHistoryAlso.”
While it appeared that many on social media were in support of the concerns being raised, some justified the focus on men by stating that it was an LGBT Pride episode—somehow missing that lesbian, bisexual, transgender, and queer women with HIV exist and should have been included. Others asked why the community couldn’t just be happy that the Today show had reported about HIV, completely missing the point that cisgender and transgender women are consistently erased from HIV narratives.
The negligence of this piece has serious consequences as there is a very real possibility that thousands of people came away from the program thinking that there were no women with HIV at the start of the epidemic and that women don’t get HIV in 2021. This repeated neglect in narratives is reminiscent of why women with HIV and activist allies were forced to protest the government and yell chants like, “Women don’t get AIDS, they just die from it,” in the early years of the epidemic.
This famous slogan was a rallying cry to raise awareness about the fact that women do in fact get HIV, can progress to AIDS, and too often die without proper diagnosis, treatment, and care. It was also a message of demand to the government to expedite scientific discovery around HIV and women and revise the AIDS diagnostic criteria to include women-specific HIV-related illnesses.
The erasure of women with HIV in historical narratives can be tracked over the past 40 years. It is consistent and systemic. It is a reminder that we live in a patriarchal society that doesn’t value women and demands that we keep pushing for change. There are narratives around HIV that get reinforced through misinformation being repeated over and over to the point that it is accepted as fact—as well as the complete erasure of people, places, and events that aren’t considered important enough to include in historical documentation.
Since the beginning of time, women have had to fight for recognition. Women had to fight to vote. Women had to fight to work. Women even had to fight to wear the clothes they liked. Forty years ago, women were fighting off unusual symptoms. Forty years ago, women were fighting to be diagnosed. Forty years ago, women were fighting to stay alive. Today, women are fighting to be recognized in the AIDS epidemic as if it were 1981.
In an attempt to honor and lift up the lives of women with HIV, I spoke with Cecilia Chung, senior director of Strategic Projects and Evaluation at Transgender Law Center, co-founder of the Trans March, and the first transgender woman and first person living openly with HIV elected as chair of the San Francisco Human Rights Commission; Brenda Emily, a perinatal long-term survivor born in 1996 who went public with her status at the age of 21 and quickly jumped into grassroots organizing as an intern with the Sero Project; Eva Hansen, a 79-year-old retired schoolteacher diagnosed with HIV in 1983 and a long-time facilitator and workshop co-leader with AIDS Survival Project’s THRIVE! Weekend; and Valerie Reyes-Jimenez, a mother, grandmother, organizer, and activist who came to Housing Works in August 1991 as a client who was homeless and is currently a full-time staffer in the advocacy department.
We spoke about their lived experiences and explored why the erasure of women continues to happen in HIV narratives, especially during the month that recognizes Long-Term Survivors Awareness Day and the 40th anniversary of the release of the Centers for Disease Control and Prevention (CDC)’s famous June 5, 1981 MMWR report.
There Was No Mention of Women With HIV
Terri Wilder: Thanks to all of you for speaking with me today. June 5 is the day each year that is recognized as HIV Long-Term Survivors Awareness Day. And this year, June is also being recognized as the 40th year of the Centers for Disease Control and Prevention’s MMWR report, announcing a new illness, AIDS, that was being seen in clinic spaces across the United States.
This report didn’t mention women, neither cisgender nor transgender women, and set the stage for the United States believing that this was a disease that only happened to cisgender white gay men. As a matter of fact, it wasn’t until Jan. 7, 1983 that the MMWR report finally mentioned the first cases of AIDS in women—and I’m assuming they were only referring to cisgender women.
I want to talk about why this erasure keeps happening. But first, can each of you share about your initial journey, including the year that you were diagnosed—and what was happening in the world at the time around HIV? And what is your life like now, as a long-term survivor?
Eva Hansen: In 1983, I was diagnosed HIV positive. I got the virus from my husband, who passed in 1988. It was really difficult for them to diagnose me, and they couldn’t believe that I was HIV positive. So, they asked my husband to come in. That’s how we found out that he had given it to me.
It was a strange time because everybody was so afraid of AIDS and HIV. People were dying, one after another. And they showed all these pictures of people wasting away and dying in hospitals. And so, it was really a turbulent time for all of us who had the virus.
But I picked myself up by the bootstraps, and I decided that I was going to live. So, I started a holistic method of living and getting vitamins, and finding out as much as I could about the disease. Since then, I have had cancer three times, and I also have a pacemaker. I’ll be 80 in December.
I was diagnosed when I was in my 40s, and they told me I had six months to live. So, it’s been over 30 years, and I’m still thriving and enjoying life. Not the way I expected it to be, but it’s enjoyable, nevertheless.
Wilder: Your medical provider told you that you only had six months to live. There’s something that you do every year now—can you tell us about it?
Hansen: When I was diagnosed, I went to UCLA, and a doctor told me that I should go home and get my affairs in order because I only had six months to live. And so, I kept in touch with him. And every year I call him and tell him that I’m still alive.
I saw him at a conference one year. He was just startled to see me. I made sure he knew who I was and what he had said to me. And so, every year I call him and tell him that I’m still here. I ask him how he is doing, since I’m doing so well.
Valerie Reyes-Jimenez: Well, I was 24 years old. I was living in Puerto Rico. We were pretty much retired drug dealers, I guess you can say. We had the house. We were retired.
I had two children by then, and I kept getting these yeast infections. My son was born January first of ’88, and by February of ’88, a month after he was born, I just kept getting these yeast infections.
You would look at me sideways, and I would get a yeast infection. I had all these rashes on my body. I kept going to the clinic, and I got tested only because I asked to get tested. I just asked them, “Hey, can I get this HIV test?” This was in 1989. And they were like, “Well, why do you want this test?” I said, “Because I just want to get tested.”
I figured that we had dodged a bullet because by 1989 we figured everybody that we had left behind, that had died, we figured we were good. We were going to retire. We didn’t have to worry about anything.
As soon as I found out I was positive I let him know—and he was upset about it. He figured, well, if I’m positive, he’s positive, and he gave it to me. We ended up coming back to New York.
He was an IV drug user. We grew up on the Lower East Side in what’s called the East Village now; my mom is still down there. It was Alphabet City in the ’80s. It was heavy drugs, I mean, it was everywhere. I legitimately believed that putting people out there to sell drugs and being out on the streets was legitimate work! It was hard work! Staying a step ahead of the police was work.
I met him when I was 16. He was 28. I’ll never forget, in July 1981, we got together. We had been together for 11 years, until his death, until he passed away. And in those 11 years, he had never really been sick. He got sick that one time, and he went into the hospital on a Sunday. He was dead that Wednesday. It was like that. It was, I don’t know. Crazy. Weird.
I know that I seroconverted early on. I remember getting so sick around December of ’81. Oh, gosh. It was horrid. I couldn’t go anywhere. It was like having the flu twice.
Right after that, I ended up developing a kidney infection, and my first bouts with yeast infections. And I ended up with something called molluscum. I would get these fevers and something called reactive arthritis, where my hands and my feet would swell. It was the weirdest, strangest thing you would ever hear of.
Around ’95, I came down with five bouts of aseptic meningitis. Who the hell gets aseptic meningitis? I’ve had spinal taps like nobody’s business. In the beginning, we were doing AZT and ddI. We were doing aerosolized pentamidine when we were sitting in these rooms, like hookah lounges. The shit that we did back then, it was insane.
I’m 56 now, and I have the muscles and the joints and the depression and the body of a maybe 70-year-old at this point. But, you know, I keep trucking. I keep trucking because I don’t know any other way. I don’t know any other way.
Wilder: You’re very involved in activism in New York State—I see you everywhere, fighting the good fight.
Reyes-Jimenez: From the day they told me I was HIV positive—one of the first things she told me was that I wasn’t going to see my son turn 2. I told her, “Give me that piece of paper. You’re stupid. You’re an idiot. You don’t know what the hell you’re talking about. Gimme.” I was out of there.
And I told them. From that moment on, I made it my business to tell everybody that I was HIV positive. I had nothing to hide. Nothing to be ashamed of. And if you had a problem with it, guess what? It was your problem. It was your problem. And that’s the attitude from Day One.
Wilder: Exactly. Cecilia, would you mind sharing next?
Cecilia Chung: Sure. I’m an immigrant from Hong Kong. I migrated to the United States with my family in the summer of 1984, and by the end of 1984, I decided to move up to San Francisco to pursue my own life, so to speak, and attend college.
At the time, I really didn’t know a whole lot about what the whole deal was about HIV or AIDS. All I knew was that San Francisco wasn’t as thriving as I’d heard people were saying. I went to some of the clubs, and it was pretty dead. Pardon the pun. I didn’t know exactly what was going on.
Later on, I’d learned from TV about HIV and the gay cancer and GRID, and all the different names. But at the time, I didn’t think that it would impact me because all the people they were showing were white cis gay men. There were no Asians’ faces on TV or in any of the media coverage. Mind you, back then, there was no internet. So, it was newspapers and magazines and TVs.
The way we accessed knowledge was limited because of that. And because I was going through college, I didn’t have a whole lot of interest outside of what I was studying. At the time, I’m also carrying this secret. That was before I began to transition. I started transitioning in 1989, when I’d almost graduated from college. I started going out, dressing up at night.
Eventually, by 1990, after I graduated from college, I decided to transition fully as a woman. By this time, I still had not taken an HIV test—although from what I’ve learned through the years, I thought that I would be pretty high risk because I was having unprotected sex. I was using a lot of drugs to self-medicate because of my gender and my sexuality. I didn’t know how to manage it. I didn’t know how to cope.
I came out to my family, and we had a huge disagreement and a fallout. By 1992, I found myself with no job, homeless, with no family support, on the street in the Tenderloin in San Francisco, starting to trade sex for survival, and trying to use the money to get a hotel room here and there so that I didn’t have to sleep on the street.
I was connected at the time with an organization called Asian AIDS Project. It was the only organization I knew at the time in San Francisco that was outreaching to the trans community in the area. I volunteered for them and started to pass out these little packets (we kept care packets of bleach and condoms) to folks. And at the same time, I was doing survival sex work.
One time, I got arrested by an undercover, and I was taken to the jail for booking. Because it was the weekend, they weren’t able to release me immediately, and I had to stay in jail with a whole cell of gay men. Back then, gay men and transgender women were being housed together behind bars. I think that they were calling it the “Queen’s Pen” at the time.
I was coerced into having sex because it was the first time I was ever in jail, and it was the first time when I was fearing for myself. And so, when one of the guys in the cell approached me, I was so afraid, I didn’t know how to say “no.” We ended up having unprotected sex. But it seems like the whole cell knew what’s going on, because they would drape all these towels around us. There was a bunk bed, so they draped the towels around us.
Afterward, I was really passive at that point still. But by the end of 1992, I took my first HIV test with the encouragement of some of my friends. And, lo and behold, I tested HIV positive. I was 27 going on 28 at the time, and I thought my world just ended because I didn’t see any future in myself. There were no medications. Everybody whom I’d seen on TV and in the newspaper, they all looked really horrible.
I was really scared of what I was going to become. You know, like hearing all the different types of complications, like dementia and PCP pneumonia. So, there was a lot going on. I didn’t experience most of those, although what I got was recurring HPV—and serious, to the point that I had to have them surgically removed. I had multiple episodes of pneumonia. This was all before 1995, and so, I didn’t really see that I had a life until in 1995, I decided to go into a program. I decided to try to get myself together, and also that was the year when protease inhibitors came out.
I started taking all these drug cocktails. I was taking AZT before—it didn’t do anything, by the way. By this time, I was taking all these different cocktails, and I had so many horrible side effects. But I decided to stay on it because I wanted to live. That’s pretty much how it’s been for a long time—that I had to deal with side effects and I have to deal with clinics that I feel very uncomfortable with. I’ve been turned away from some of the clinics because they said that their funding would not allow them to see patients like me. So, that was the early days.
Wilder: And now you’re someone who is in a very prestigious organization, fighting legally and around policy. In 2015, you launched Positively Trans, which is a national network of transgender people living with HIV that’s led by transgender people of color living with HIV.
Chung: Yes. And that’s part of the big irony of all this. I never really thought to get my name out there for telling all my dirty laundry to the whole world. But at the time when I started doing the advocacy work there were no other trans women living with HIV who survived more than two, three years. It kind of became like a responsibility, that I had to share my stories so that people know that this impacts the trans community and sex workers, and really put my faith to those three letters called HIV. That’s how I got started with my activism.
By 2015, I had the opportunity, as you know. I seized it, and I started organizing the community because I truly believed the only way that we could fight stigma is to be as visible as possible, as vocal as possible—we can show as much diversity in our community and what living with HIV is like—it might help to attract others who thought they don’t have any help to find a community that they could connect with.
Wilder: And this is why storytelling is so important. Our next story is Brenda.
Brenda Emily: So, I contracted HIV from my biological mother and was diagnosed at birth in 1996. I had a viral load just under 1 million and wasn’t expected to live past my first birthday.
Another interesting thing about my birth story and having HIV is I have a fraternal twin brother who was born negative. So that’s always been kind of a mystery. People are always shocked by that. But I was given AZT, ddI, and d4T, and developed severe lipoatrophy by the time I was four years old—and I still have ongoing complications because of lipodystrophy. So that’s a huge downside to being a long-term survivor of HIV.
I found out about my status around age 7. I want to say it was right around my 7th birthday—my birthday’s in March—because my birth dad died in April of that year. He actually died because he chose not to take his medication. He said that his life wasn’t worth living with AIDS.
So, that was a really hard thing because—put the pieces together of, “OK, I have this thing. He had that.” I knew that I had gotten it from my mom and that she was also sick. So, the only understanding that I had of what I was told was that it was an illness and people die. Then as a kid, doing my own research, I only heard about Ryan White. And obviously, he died.
Other than Ryan White, what exactly was going on in the world at that time as far as HIV, because I was so young, I didn’t have the exposure to all of that knowledge. It was particularly confusing and isolating. Outside of my clinic, and my doctor’s visits and the lab work, I didn’t have anybody to talk to or anybody that related to me, or even who understood HIV themselves. Because I was adopted, there was nobody in my family.
I went to a summer camp for kids with HIV, but even there, we weren’t allowed to talk about it because not every kid there knew their status. So even in HIV spaces, it was still very lonely and just not something that was really out in the open.
It took a toll on my mental health very early on in my life. I remember getting severely depressed around 7 or 8 years old, and I still struggle with my mental health now.
But when I was 10 in 2006, I had disclosed to a friend that I went to school with. The reaction at that time was that he told me I was a health hazard and he’d go to the school district with his mom to get me kicked out of school. Nothing ever happened, but, you know, after moving and starting another school, and because of the lipoatrophy, because of also being disabled, those experiences continued throughout my adolescence. It really wasn’t until recent years that I’ve seen a noticeable difference in people’s attitudes and reactions about HIV, especially since coming out about it.
So, now, as a long-term survivor, in my everyday life it’s so manageable, but it’s the mental health piece of HIV, and dealing with the stigma, and dealing with the fact that society hasn’t caught up to what everyday life is like with HIV, and how much the science and medicine has developed. It takes a toll. It’s just the fatigue and being tired and the health anxiety that I have had since being a kid—being traumatized by being a kid and having no idea what was going on, and nobody to talk to, and having horrible side effects, feeling sick all the time, and just not quite understanding, “Am I going to die, or am I not?” And nobody was really facing that with me.
So, I have a lot of mental health issues because of the stigma, because of the trauma of being a young kid who was sick. I do my best to manage it, but when you’re in these spaces and when you look at activism and advocacy, and you don’t see anybody that really represents you, it’s all that much harder because you still feel alone. That’s kind of what it’s like for me now.
Why Are Women’s Stories Still Silenced?
Wilder: Thank you so much for sharing that, Brenda. I know that you are very loved. I know people who love you dearly. I just want to acknowledge that. And I appreciate you talking about how it’s hard when you don’t see people who look like you. I think that is why it’s so important for us to have this conversation today.
American author, professor, feminist, and social activist bell hooks once wrote, “Sometimes people try to destroy you precisely because they recognize your power, not because they don’t see it, but because they do see it and they don’t want it to exist.”
I often think about this quote from her, this statement, in terms of women, cisgender and transgender women, and HIV, and this historical erasure in the documentation. What are your thoughts about why cisgender and transgender women are still left out, with 40 years plus into this? Why are people still silencing the stories that are so important and powerful?
Emily: Just what I know about the history of HIV/AIDS, and also what I’ve observed in my lived experience with HIV, is that it does stem from HIV being explicitly labeled as a homosexual disease of cis white men or, also later on, what became known as the [four] H’s. But when you look at the recent decades before the ’80s of the coinciding sexual revolution and the gay rights movement, it kind of makes sense that that specific population was magnetized. But it was to the detriment of other demographics, especially women and babies, like myself.
So, I don’t know exactly why. But, society has not caught up with the lives that we live as people living with HIV. Even being a kid sitting in health class, the HIV education was—I don’t want to say it was minimal, but it wasn’t adequate. When I talk to HIV-negative people, they’ll say, “Oh, well, we really didn’t know anything back then.”
And I’m like, “But that’s not true.” We knew a lot. It was just that that information wasn’t being told, because of stigma. In school, I myself knew that what we were being taught wasn’t right. So why was it that the right information wasn’t being given to young people, or just to people, in general?
So, I think it does go back to stigma and the fact that it takes a long time to catch up with bad history. And we see that in so many other social justice movements. It’s just that this one is ours. So, we’re particularly aware of the fact that society hasn’t caught up. We are still being excluded from the conversation.
Chung: Oh, I have a lot of thoughts on this topic. I think that Brenda touched on a really important point. It’s that how the entire epidemic was framed in the early days, that it was framed as being only white gay men were seen with the disease. They ignored the fact that injection drug users, transgender people, and women were accessing emergency rooms with some of the same kinds of complications. I think that throughout the last 40 years, not enough from our community—I mean, women living with HIV and trans women living with HIV—actually were at the table when a lot of the new interventions were designed, and also with the reporting.
I truly believe that when it’s out of sight, it’s out of mind. So, if you have a full room of cisgender people, chances are for them to talk about transgender issues are quite minimal. In order to change that, we really need to engage every community.
What we’re seeing now is a case in point of what I just mentioned. We used to lump all transgender people into one category, without looking at trans women and trans men. But in the last few years, once we separated these data because of the advocacy that we’ve been doing, we saw that for trans men, some of the states have a pretty high number. In New York State, they have over 700 trans men living with HIV. That’s more than enough people to fill one room. How could we say that we should ignore that?
I think that’s what needs to happen—we need to count everyone. We need to see everyone. And we really need as many stories as possible.
Reyes-Jimenez: Well, I think that we’re still in the same place 40 years later because we haven’t changed the narrative yet. HIV is still pretty much only talked about in June and on World AIDS Day. So, if we start to change that narrative, maybe we start seeing something a little different.
I still see it very much as not just a cis, gay, white men disease/illness, but it’s also a race and a class issue. And until women are seen, women with HIV, they’re going to continue to perpetuate the same thing.
I was really pissed off with a number of people this past month, and going back and reliving some of my stuff—it just kicked up a lot of feelings for me, you know? And at times it’s going to come off as if I’m kind of salty. And you know what? Yeah. I am. Because, goddammit, I’m here. I’m not fucking invisible. And you’re not going to ignore me. You’re going to call me emotional? I’m going to say I’m fucking passionate. You know what? I’m not going to be quiet about it. I am going to ruffle some feathers. If you don’t like it, too fucking bad.
Hansen: I agree with everything everybody said. I just think we need more education about the matter. It’s just like Juneteenth—nobody knew about it until recently. Things are just hidden and left out, like we’re being left out of the conversation. I think there needs to be more widespread education about it, and about women with the virus, and transgender people with it, so there’s a clear understanding that it’s not just gay men.
Documenting the History of Women in HIV
Wilder: I’m thinking about, in 2001, I felt like everywhere I looked, everyone was putting together a 20th anniversary of HIV timeline and there, again, was a huge oversight of reporting about women and HIV—cisgender and transgender women. As if they’d never contributed to developing an HIV program or a policy, or that there were no HIV women scientists.
As a matter of fact, it made me so mad that I started putting together a women’s HIV timeline with one of my girlfriends who was living with HIV. It wasn’t perfect, but it was a start. Can we close by us together, the five of us, contributing to the timeline? Can each of you say one thing that you know about the history of women in HIV? I’ll start off: In 1989, SisterLove, Inc was founded by Dázon Dixon Diallo as the first and oldest organization in Georgia that focused on the needs of women living [with] HIV and at risk for HIV.
Chung: I definitely think that in 1994, a similar process happened in New York. But I can only speak specifically to San Francisco. It’s that one of the public health clinics, Tom Waddell Health Center, after seeing a lot of transgender people coming in to present with really advanced complications, like of other chronic diseases, including HIV, decided to open up a Transgender Tuesday Clinic to offer prescriptions of hormones to the community.
What they saw was a lot of people coming to seek services, and had a long waiting list. But also at the same time, they were able to start engaging the community in primary care. That was the turning point for the trans community, in terms of seeing the pivot of health outcomes—that more people are actually staying in treatment.
There is a second key timeline, around 2015-2016. Positively Trans were able to engage the Office of National AIDS Policy in identifying different initiatives and reporting mechanisms to make sure that trans people are not invisible anymore. Before that, the CDC has always invisibilized transgender people in their HIV surveillance data.
But since the conversations, they began to incorporate some of the narrative, instead of using a separate report into the main surveillance report—so that people know we exist.
Hansen: To just recognize that we’re human and that we’re doing our best living with this disease. But I still think a broader education on the matter would help a lot. I’ve noticed how the change has come with being ostracized and all the problems that we had in the beginning of the epidemic. Some of those have subsided. But there’s still a long way to go.
Wilder: And one of the things I think about for you, Eva, for a time point that we could document is that in the late 1990s, there was a very popular women’s HIV support group that was hosted by AIDS Survival Project in Atlanta.
Hansen: Yes. It was very helpful, living with the disease and being among women who were also living with it and finding strength and getting strength from each other, and ideas on how to manage and how to live.
Emily: So, mine is kind of two moments in time, but with the same outcome. Again, I was born in 1996. That was the year that the first cocktails became really effective and accessible, and really changed people’s lives and gave people hope because of their efficacy.
And so, people don’t realize—especially people in my life, personally—how big that was. Because I was born with HIV, they don’t realize the drop in babies being born with HIV after 1996. It has kind of become like a generational thing. So that was a huge moment in time for women who were pregnant after 1996.
But then that has also continued to 2017 with U=U. That campaign I feel like is largely, again, framed around undetectability with partners and transmission, and especially with gay men. And you can get into everything with PrEP [HIV prevention medicine], and PrEP only being studied on men for certain things, and everything with that.
But it’s another huge milestone for women who are worried about vertical transmission and breastfeeding. There’s still so much research to be done, but it’s opened up the door to be able to really study those things for women and for babies, and for women to be told, “Yes, you can breastfeed,” or, “There is zero percent chance of giving your baby this virus in any way, even after birth.”
It’s such a huge, liberating thing to finally be 25 and be thinking about starting a family, and not have to have that same fear that I did as a kid, wondering, “Am I going to essentially ruin my kid’s life, too? Am I going to make my kid have to go through what I’ve gone through, because I have no other options?” That is such a huge, huge thing for women.
Wilder: In 1996, as you mentioned, in Vancouver the 11th International AIDS Conference highlighted the effectiveness of highly active antiretroviral therapy. It was creating a period of optimism. I just wanted to give a shout out to two years before that, the ACTG 076 study found that pregnant women taking AZT reduced the risk of HIV transmission to their unborn child by two-thirds.
Emily: Right. And even then, with that fact, my mom had six kids. We don’t know at what point she got it. But we think it was after her third kid, so it was after my sister and right before me, because we were three years apart.
So, with that, if that was the point at which she became positive, then she had three kids. She was on AZT, and we all took AZT. And I, just by chance, was the only one that got it. So, the statistics speak for themselves on the advocacy of medicine.
Reyes-Jimenez: I wanted to add that on Jan. 1, 1988—the only reason I remember that date is because that’s the date that my son was born—they started doing anonymous testing on newborn babies that day for HIV. I still don’t know what my son’s test was. But I know that they started doing that, at least in New York City. And then in 1990, I was seen by a nurse practitioner in the LGBT Center, because nobody else had any idea how HIV was affecting women with HIV.
Every time I see a bunch of kids on a class trip or something, I often wonder how many of these kids are going to grow up and become IV drug users or are going to have HIV or are going to grow up to be sex workers and whatnot. Because if we don’t address these issues now, it’s not going to go away.
So those are the things that I think of when I see a group of kids on a class trip nowadays.
Wilder: Thank you. I’ll just close by giving one more timestamp of a date. In 2003, Sister Mary Elizabeth, a transgender nun and founder of the website AEGiS, received an award at the event Honoring Our Heroes in Chicago.
So that was something that I learned by doing research when I was so angry about not seeing the lived stories of women being documented across these 40 years.
I just want to thank all of you for talking with me today, taking the time to share your stories, which are so powerful. I want to thank you so much for having this conversation with me that was really coming from a place of wanting to correct this narrative and tell the stories of women living with HIV to be documented.