Stories of Activism

After graduating from college, I moved to Atlanta, Georgia for my first real job and I began volunteering for AIDS Atlanta.

This is a picture of myself, with seven of the best friends I ever had, taken in September of 1990. We were trained in an outreach project that gave talks about HIV/AIDS and safe sex.

We spoke at churches — if they would have us.  We spoke to schools, civic organizations, local groups — any group that would let us in the door. We came up with a whole routine that had both humor and a very serious aspect to it.

I share this very scared picture of mine, my friends, my “Band of Brothers.”  We were having a cook-out that night and waiting on all of our other friends to arrive when someone snapped this pic. It’s old, it’s not in great shape — but it means the world to me.

We were listening to Roxy Music that night, and the songs “Avalon” and “More Than This” can still take me back to every detail of that evening.

I have “ghosted” my friends’ images so that those who are too young to remember the early days of AIDS epidemic can maybe understand, just a bit, what it’s like to be the last one left.

In this picture are two high school teachers, one attorney, one in law school, one hairdresser, one college student and one carpenter. They each have their own, unique story. By 1997, all had succumbed to AIDS, including my best friend, Phil, and I was the last one left. The only one alive.

I left Georgia after this, taking a position in south Florida. I found that you can change your surroundings, but you still carry the hurt, the loss, and the grief wherever you go.

The Rev. Dr. A. Stephen Pieters is an AIDS survivor, an AIDS activist and a pastor who ministered to people with AIDS from the earliest years of the AIDS epidemic.  Steve received his Master of Divinity Degree from McCormick Theological Seminary in 1979 and became pastor of the Metropolitan Community Church in Hartford, Connecticut.

In 1982, Steve resigned his position as pastor in Hartford and moved to Los Angeles.  A series of severe illnesses in 1982 and 1983 eventually led to a diagnosis in 1984 of AIDS, Kaposi’s Sarcoma and stage four lymphoma.  One doctor predicted he would not survive to see 1985.

And yet, 1985 proved to be a watershed year for Rev. Pieters.  He became “patient number 1” on suramin, the first anti-viral drug trial for HIV which led to a complete remission of his lymphoma and Kaposi’s sarcoma.  Unfortunately, suramin was found to be extremely toxic, and it came close to killing him twice.

Also in 1985, during his suramin treatments, he appeared via satellite as a guest on Tammy Faye Bakker’s talk show, Tammy’s House Party, on the Bakkers’ PTL Christian network.  Tammy Faye took a huge risk with her evangelical Christian audience by inviting Pieters on the program and advocating for compassion and love for gay people and people with AIDS.

I’m Jessica Chastain, and portraying Tammy Faye in her interview with Rev. Steve Pieters was one of the highlights of my role in the 2021 film The Eyes of Tammy Faye.  The interview was done via satellite because of fears that the PTL crew would not be comfortable with an in-person interview.

Steve told People magazine that: “She wanted to be the first televangelist to interview a gay man with AIDS.  It was a very scary time and there was still a lot of fear about AIDS and about being around a person with AIDS.  And I thought the opportunity to reach an audience that I would never otherwise reach was too valuable to pass by.  I’ve had people come up to me in restaurants and tell me, ‘That interview saved my life. My mother always had PTL on, and I was 12 when I heard your interview, and I suddenly knew that I could be gay and Christian, and I didn’t have to kill myself.'”

Tammy Faye’s support for people with AIDS and the gay and lesbian community continued.  Bringing
along her two children, she visited AIDS hospices and hospitals, went to LGBT-friendly churches, and
participated in gay pride parades.

When the Bakkers’ PTL network and Christian amusement park were embroiled in scandal and she became the subject of jokes and Saturday Night Live skits, she said in her last interview, “When we lost everything, it was the gay people that came to my rescue, and I will always love them for that.”

Tammy Faye passed away from cancer in 2007, but Rev. Pieters continues to thrive both personally and professionally.  He has served on numerous boards, councils, and task forces related to AIDS and
ministering to those with AIDS, and his series of articles about living with AIDS was collected into the
book I’m Still Dancing.  For many years, Pieters served as a chaplain at the Chris Brownlie Hospice,
where he discovered a gift for helping people heal into their deaths.

Pieters was one of twelve invited guests at the first AIDS Prayer Breakfast at the White House with U.S. President Bill Clinton, Vice President Al Gore, and the National AIDS Policy Coordinator in connection with World AIDS Day 1993, and President Clinton spoke about Rev. Pieters in his World AIDS Day speech on December 1, 1993.

Pieters has been a featured speaker for AIDS Project Los Angeles and his story is told in the
books Surviving AIDS by Michael Callen, Voices That Care by Neal Hitchens, and Don’t Be Afraid Anymore by Rev. Troy D. Perry.  He has received many awards for his ministry in the AIDS crisis from
church organizations, the Stonewall Democratic Club in Los Angeles, and the West Hollywood City
Council.

In 2019, his work in AIDS Ministry, including his Tammy Faye Bakker interview, became part of the LGBT collection in the Smithsonian National Museum of American History.  Pieters left his position with UFMCC AIDS Ministry in 1997, earned a masters’ degree in clinical psychology, and worked as a psychotherapist at Alternatives, an LGBT drug and alcohol treatment center in Glendale, California.

Now retired, Pieters is busier than ever with speaking engagements, interviews, and finishing up his memoir, My Journey Through AIDS (I Keep on Dancing).  He has been a proud, singing member of the Gay Men’s Chorus of Los Angeles since 1994.

Pedro Zamora’s bravery and commitment to AIDS advocacy engaged and educated TV audiences around the world.  Pedro was a cast member on Real World: San Francisco from 1993 to 1994.  I’m Wilson Cruz, and hardly a day goes by that I don’t remember Pedro’s courage and dedication.

On Real World: San Francisco, Pedro was one of the first openly gay people with AIDS that many people ever saw on TV.  Simultaneously, on My So Called Life, I was the first openly gay actor playing an openly gay character in a series regular role on American TV.  And to this day, Pedro still inspires me as an actor, as a man, and as an activist.

Pedro Zamora was the youngest of eight children living in Havana, Cuba when his parents decided to emigrate to Florida as part of the highly-publicized Mariel Boat Lift in 1980.  Pedro was an honor student, captain of the cross-country team and President of the Science Club at his high school where he was voted Best All Around and Most Intellectual.  But at 17 years old, Pedro learned he was HIV positive after donating blood at a blood drive.

His HIV-positive diagnosis propelled him to become a full-time AIDS educator, so that other young people could learn what he was never taught.  This led to hundreds of speaking engagements; a front page article about him in the Wall Street Journal; appearances on major talk shows hosted by Oprah Winfrey, Geraldo Rivera and Phil Donahue; and testimony before the U.S. Congress on AIDS education.

Producers of the Real World wanted to cast an HIV-positive person.  Being cast on the series gave Pedro his biggest platform for AIDS education and won him fans all over the world.  Audiences watched how his HIV status affected his relationships with housemates and his health.  They celebrated his commitment ceremony with partner Sean Sasser, which was the first such ceremony in the history of television.

But about midway through the taping of the series, Pedro’s health began to decline, but he told producers that he wanted them to tell his story until the end.  When the stress from his conflict with a homophobic housemate, Puck Rainey, led Pedro to want to move out of the Real World house, his other housemates instead voted to evict Rainey.  Time magazine ranked that episode #7 of the top 32 most epic episodes in reality TV history.

In late June 1994, the Real World: San Francisco began to air on MTV.  At a cast reunion party only two months later in August, Pedro’s progressing illness was evident.  He was diagnosed with toxoplasmosis, a disease that causes brain lesions, and also a rare and often fatal virus that causes inflammation of the brain.  Doctors estimated that he had 3-4 months to live.

In September 1994, he was transferred to a hospital in Miami near his family.  With the help of the U.S. government, the remainder of his family was allowed to move to the U.S., so that they could be with Pedro before he died.  MTV paid for his medical costs, because Pedro was unable to get health insurance due to having a pre-existing condition.

Pedro Zamora died of AIDS at age 22, the morning after the final episode of the show was broadcast.

A memorial fund, youth clinic, a public policy fellowship, a youth scholarship fund and a street in Miami are named in Pedro’s honor.  He was one of the 50 people first included on the National LGBTQ Wall of Honor as part of the Stonewall National Monument, the first national monument in the U.S. dedicated to LGBTQ history.

Reflecting on Pedro’s death, President Clinton reminded us, “We must remember what Pedro taught us:  One person can change the world — and whether or not we are living with HIV or know someone who is, we all have a responsibility as global citizens to do whatever we can.  Life is short enough as it is.  No one should die from a disease that is both preventable and treatable.”

Lou Graydon Sullivan (June 16, 1951 – March 2, 1991) was an author and activist who became the first transman to die of AIDS. He was 39 years old.

Sullivan was the first transgender man to be publicly known to identify as gay. His activism is considered to be one of the primary reasons for our current understanding of sexual orientation and gender identity as separate, unrelated concepts.

In 1986, Sullivan had reconstruction surgery but was diagnosed with HIV afterwards and informed that he had 10 months to live. It is speculated that he contacted HIV in 1980 just after his chest surgery.

He wrote, “I took a certain pleasure in informing the gender clinic that even though their program told me I could not live as a gay man, it looks like I’m going to die like one.”

In 1973, Sullivan grew up in Milwaukee, born into a Catholic family, and identified as a “female transvestite.” By 1975, he identified as a “FTM transsexual.” Later that same year, he relocated to San Francisco where began working as a woman but cross-dressed as a man.

Sullivan founded female-to-male (FTM) International, one of the first organizations specifically for FTM individuals, helping them obtain peer-support, counselling, endocrinological services and reconstructive surgery outside of gender dysphoria clinics.

Although Sullivan lived as an out gay man, he was repeatedly denied sex reassignment surgery because of his sexual orientation and the view held by the medical establishment that transgender people should adopt “stereotypical heterosexual opposite-sex gender roles.”

Sullivan campaigned to remove homosexuality from the list of conditions that served as a reason to withhold SRS from prospective patients. In 1979, he was finally able to find doctors and therapists who would accept his sexuality, began taking testosterone and underwent a double mastectomy.

Hi! My name is Mallery Jenna Robinson.  My pronouns are she/her/hers, I identify as an AfraCaribbean Trans woman who has been empowered in her truth for 16 years as a trans woman and over 10 years as a trans woman living with undetectable HIV. 

On May 2, 2011, I was living in Montgomery, Alabama, a junior in college and in a monogamous romantic and sexual relationship with a cisgendered male when I became violently ill and collapsed while working as a server at a local restaurant.  I was rushed to the emergency room, where a panel of tests were run including blood work.

I received a phone call from the Montgomery County Health Department on May 21, 2011 to come into the health department to receive an update regarding my recent blood work. The medical provider walked inside the door to the office where I was waiting anxiously, and informed me I was HIV positive. He then referred me to the Copeland Care Clinic, also known as The Montgomery AIDS Outreach, where I would be linked into care at the Ryan White Program to receive HIV care and management.

I was completely nervous and overwhelmed as a then 21-year-old Black trans woman who was working on my Double Bachelor’s in Biology and History, but nonetheless I was determined to not let this diagnosis deter me from living my best life. I arrived at the Copeland Care Clinic and received training on best practices to ensure I would become and remain undetectable.  I met my amazing medical provider at the time, Dr. B, and he also recognized that I had no access to hormone replacement therapy, so he also prescribed that along with my anti-retroviral medication. 

Despite my medical diagnosis, I was tenacious and determined to continue to live an amazing life and not let HIV define my existence.  I was diligent about taking my medication and, as a result, I went from lab work twice a month to lab work once every six months.

I went on to graduate with my double Bachelor’s in biology and history in May 2014.  I began teaching as a middle school science and history teacher in Duval County, Florida from August 2014 until June 2019.  I traveled to Paris, France and London, England, and finally worked up the gumption to move to Los Angeles, California.  After moving to Los Angeles, I began receiving medical care at the Los Angeles LGBT Center under Dr. V.

Since moving to Los Angeles, I have become a transgender and HIV healthcare advocate, raising awareness to promote accessibility, visibility, and equity for all trans identities.  I work to destigmatize HIV by professionally speaking about my own journey surrounding HIV as a Black trans woman.  I’m a member of the City of West Hollywood’s Transgender Advisory Board, and work as Engagement Specialist and Service Navigator for The Transgender Health Department at the LGBT Center of Long Beach up until 2021.  I now work as the Community Advisory Board coordinator for “We Can Stop STDs LA” with Coachman Moore & Associates.

I participate in outreach efforts with other community leaders and partners to ensure that trans women of color and all trans identities in our community are being tested, and getting linked to care and remaining in care.  Far too often, individuals hear the letters H-I-V and instantly think of it as a death sentence, but it is not. You can successfully live with HIV as long as you are willing to take your medicines and practice other health and wellness strategies to ensure you are maintaining an undetectable status.

As a Black trans woman who has been living with HIV for over 10 years, I just want to say it is okay to be nervous and overwhelmed.  But dig deep and find that determination and tenacity to survive and thrive, so you, too, can motivate and inspire others to stay undetectable by staying in care.  Also, if you’re negative, PrEP and PeP services are also available, along with regular HIV testing.

Ron Woodroof was an unlikely hero, but he rose to the occasion and became a lifeline for many people with AIDS in the Dallas area. Ron created the Dallas Buyers Club in 1988 to get HIV and AIDS medication to those in need who couldn’t legally get it from doctors and pharmacies.

I’m Matthew McConaughey. I had the privilege of portraying Ron in the 2013 movie Dallas Buyers Club, for which I was honored with the Academy Award for Best Actor.

Ron, a feisty, foul-mouthed electrician who lived in Oak Lawn, Texas, tested positive for HIV in the mid-80s and was given only a few months to live.  Soon after, his third marriage ended in divorce. When the FDA-approved drug AZT failed to help his condition and caused significant side effects, Ron researched and bought drugs from outside the U.S. that were not approved by the U.S. government. They helped lessen his symptoms and prolong his life, but the FDA wouldn’t allow Americans to bring more than a three-months supply of unapproved drugs into the U.S., and clearly many people didn’t have the money to travel abroad to buy medicine.

With the help of his doctor and a fellow patient, he began importing, or obtaining from underground chemists in the U.S., different drugs, nutritional supplements and treatments through The Dallas Buyers Club for use by others suffering from HIV and AIDS.  Eventually, the club imported over 100 different treatments. Clubs would often test samples of new drugs at a friendly laboratory to make sure they had the right quality and potency.

According to a Dallas Morning News article in 1992, Ron, who often dressed as a priest or a doctor in a white lab coat, made over 300 trips across the U.S./Mexico border, smuggling as many as half a million pills in the trunk of his Lincoln Continental, tricked out with heavy duty air shocks so that the car wouldn’t sag with all the extra weight.  Ron and others who worked at or bought drugs from the buyers’ club risked arrest and death by importing and taking unapproved medications, but when your disease is a death sentence, is it really such a big risk?

As Ron put it, “Dammit … I don’t see how anything can be more toxic than HIV itself.  I have taken chances that have almost killed me and I will keep on taking them.  I have nothing to lose.”

Many buyers’ club operators and customers accused the big pharma companies and their FDA regulators of conspiring to keep drug prices high and to keep new competing drugs out of the hands of patients.  Certainly, the slow pace of FDA drug approval was no help to terminally ill people on death’s doorstep.

Ron took an experimental drug called peptide T, which was used to treat AIDS-related dementia, but when the U.S. government intervened and stopped his supplier in Denmark from shipping out the drug, Ron sued the Food & Drug Administration.

“I have no choice with peptide T,” Ron said. “It is the only line I have to staying alive.  When I stop it, I start dragging my leg.  I urinate on myself. I can’t speak.  I slobber all over the damn place.”

A judge ruled against Ron, saying that although there was no Constitutional right to import unapproved drugs, he personally thought that terminally ill people should be able to buy them.  Ron managed to strike a deal that allowed him to get the drug and report his results to the FDA.

Ron died in 1992, six years after his HIV diagnosis.

As Ron said in a documentary released that year, “Let me try anything I can get my hands on. Because if it kills me, at least I died trying.”

Herb Ritts’ photography began when he and his good friend Richard Gere — then an unknown actor — did a photo shoot in 1978 in front of a vintage jacked-up Buick.  That got both of them some attention and led to Herb’s October 1981 cover photo of Brooke Shields for Elle magazine, and the cover of Olivia Newton-John’s album, Physical, in 1981.

In the ‘80s and ‘90s, Herb photographed some of the biggest celebrities of those decades.  Madonna, Denzel Washington, Cher, Tom Hanks, David Bowie, Michael Jackson, Matthew McConaughey, Johnny Depp, Courtney Love, Elizabeth Taylor, and many more. Herb directed 14 memorable music videos for major performers including Madonna, Janet Jackson, Britney Spears, Chris Isaak, Jon Bon Jovi and Mariah Carey, and won 2 MTV video awards.   I’m Erik Hyman, the President of the Herb Ritts Foundation and I was Herb’s partner when he died in 2002.  Here is Herb’s good friend Richard Gere with a tribute to Herb …

* * * * *

Oh, how do I even start with Herb Ritts?  Herb was one of my closest and dearest friends.

I met him in L.A … Hollywood. We had mutual friends and Herb was just the nicest human being. He was sweet, and he was generous and curious and didn’t have a mean bone in his body.  He was kind of extraordinary that way.  He really stood out.

He decided to become a photographer and, through very hard work, he became one of the top fashion photographers in the world.  I was just looking through his stuff.  I mean, it is amazing.  It is classic.  He always wanted to be classic, he didn’t want to be a flavor of this month or year, he really wanted something that lasted.  I think those of us who were photographed by him felt that, that he was he was looking for something real and authentic.

And he was a warm photographer who people relaxed around, he made everyone look great.  I look at his photographs and I see where a lot of them came from, but they have his creativity, and his eye and his heart in them.

When he found out that he had HIV, I think I was one of the first people he told, and we just wept like babies.  He had the best healthcare one could get, but he just weakened.  He was having trouble, but I still remember how shocked I was when I got that call December 26, 2002, that he had passed away, it just didn’t seem possible.

Herb, up to the last moment, really helped a lot of people.  AMFAR … he and I worked on a couple of off-shoots from AMFAR, fast-track kind of scientific medical explorations.  He was always donating his time, energy and photographs to help.  He donated cameras to Africans who were going through this to document what they were experiencing with HIV and AIDS.  And his foundation is very focused on that.

So I think besides his own human legacy to his friends and the people who loved his art, I think his brothers and sisters who succumb to HIV have benefited so much from his willingness to put himself out there and embracing everyone who was touched by this disease that fractured all of us.

Herb was the best!

“My life had certainly not turned out the way that I expected, but while tomorrow would bring what it would, today was glorious.”
– Elizabeth Glaser, wife, sister, mom and angel

On a Los Angeles summer night, in a chance meeting at a stop light on Sunset Boulevard, Elizabeth Glaser, a second grade school teacher, and Paul Michael Glaser, a television star from Starsky & Hutch, rolled down their car windows and found one another on this spinning rock in the cosmos to create a family whose creation, passion, love, fear, tragedy and sacrifice would change the world.

It was in 1981 when my mother, Elizabeth Glaser, gave birth to our guardian angel, our guide in life, Ariel. While in labor at Cedars Sinai in Los Angeles, my mother hemorrhaged and lost seven pints of blood. In order to save her and her baby, a blood transfusion was necessary, one that would forever change the path of their lives. What began as new virus predominantly showing up in gay men, the Human Immunodeficiency Virus was spreading fast and amongst many communities, not just the homosexual community.

My sister Ariel became sick. She would sink into sickness one week and bounce back the next, signs of what most called an extreme flu, but became known soon after as the global health crisis we now know as AIDS.

It was soon after this that I was born, HIV positive and with an unknown future. After years of antibiotics, and medications never designed for the fragility of a child’s immune system, my sister’s HIV turned into AIDS and took my sister’s life at age 7.

A mother’s response to losing her child is like a crack of thunder across the world. My mother knew she lived with this same virus, and so did I. Her only choice was to do something about it.  So she asked for help, used her skills of getting people to come together and work together, and applied it to the start of the Pediatric AIDS Foundation, in an effort to raise essential funds for medical research into pediatric treatments for HIV.

She smashed down politicians’ doors, called Hollywood to action with my father, raised the funds, and built a team of interdisciplinary medical researchers to start asking questions to which we did not have the answers. She used every last bit of her energy to humanize this issue, speaking at the 1992 Democratic National Convention, advocating in Washington, and telling her story to the world in hopes of bringing enough light to this dark place so our future could be bright.

In 1994 after witnessing the creation of the first antiretroviral medications and seeing a step in the right direction, her health declined and my mother passed away at the age of 46, when I was only 10 years old.

The spark that she ignited, lit up the world. Elizabeth Glaser and so many others sacrificed their lives to provide us the opportunity we have now, to create a world free of HIV, to make sure no one dies from this disease and to make sure no child is ever born HIV positive again.

Through the collaborative efforts of The Pediatric AIDS Foundation, a medication that was designed for a different use was applied to stop in-utero transmission of the virus from mother to child. The Pediatric AIDS Foundation has grown into a community health organization in 19 countries, with over 5,500 sites across the globe and over 30 million women reached to prevent the transmission of HIV to their babies.

Today we are not only an HIV-focused family, our programs support a variety of health issues, most recently being COVID-19.

The ripple that Elizabeth Glaser and Ariel Glaser left in this world will forever be reinforced by each and every one of us who choose to do something when we feel we can’t, who choose to run into our fears when we feel helpless and show each other that even when we feel all hope is lost, in the darkest moments in the darkest places in our lives, light will always prevail if we choose to turn the light on.

In the late 1980s and early 90s, I volunteered with an organization that placed volunteers in hospitals and group homes to work with children with HIV/AIDS.

I met Aaron when he was 9 months old and cared for him until he died at the age of 18 months. This photograph was taken on his first and only birthday.

The women who were full-time caregivers at the home used to call me Aaron’s father because of our bond. Both his parents had already died. The women used to say he seemed jealous if he saw me holding another child.

Aaron was very sick. His lungs filled constantly with mucus. I was often asked to gently pat him on the back while he was given medication through a nebulizer. I could tell how much stress it caused his tiny body. Seeing him suffer was not easy.

When I spoke, Aaron would put his little hand against my jaw as if he was feeling the words as they formed in my mouth. On his first birthday, I brought him some presents and we had a little party on the ward. He was healthier than he had ever been before. He didn’t need to remain attached to tubes. I was told I could take him up to the rooftop garden.

I walked Aaron around the garden, holding him like I am in this photo. Just him and I, alone outside under a beautiful blue sky. An airplane flew overhead and he looked up. I told him about airplanes. I showed him flowers, rubbed them against his cheek so he could feel them. I just kept talking to him. He held my jaw as I spoke the entire time, feeling the words as they formed.

When Aaron died months later, the women at the home told me that was the only day of his life that he went outside other than for trips to the hospital.

Aaron was moved to a hospital for his last few days and placed in an oxygen tent. I went every day after work. While I was not present when he died late one night, I leaned in under the tent whenever I was there and never stopped talking to him.

Aaron was one of the reasons that I joined ACT UP. His memory fueled my activism. We lost so much in this epidemic. So much suffering. So much death of those far too young to die.

Ray Navarro died on November 9, 1990. He was 26 when he died, and I loved him from the moment I met him.

His image is now often circulated, especially the fantastic one of him as Jesus, a reporter from the Fire and Brimstone Network, interviewing people at the St. Patrick’s demonstration.  But on the anniversary of his death, it’s as important to remember he was prescient in his critical analysis, and he left us with an archive of important writing.

In his Outweek obituary, Gregg Bordowitz, Catherine Gund and I wrote:

“Ray always identified AIDS as a crisis among people of color even when ACT UP, the media and most other people — including people of color — hadn’t absorbed that reality.”

We quoted from one of Ray’s essays, the powerful “Eso, Me Esta Passando.” In that essay, he addresses how homophobia remains a significant obstacle in designing effective public health policies in Latino communities in the U.S. His voice is so moving, and his efforts to shift the prevailing discourse of victimhood never ceased until the moment he died.

Ray wrote:

“I am an HIV-positive Chicano gay man from Simi Valley, California. By looking at me, you may not be able to see any of those things. You will also not be able to tell I am college educated, a video maker and scared to death of my own culture. For the last several years, I have grown comfortable with my gay identity, I have marched in the streets, go-go danced in bars, and wept at the death of people I respected who have died of AIDS. So now I am also an AIDS activist. Full time.”

And in conclusion Ray wrote:

“My intention in presenting these works [AIDS activist videos that he curated, created specifically for Latinos] is to provoke my community into action. Here are political analyses, protest images, sexy scenes, angry young men, defiant feminists, and gente. You will be hard pressed to find an ‘AIDS victim.’ Rather, we are Latinas and Latinos living with AIDS.”