Stories of Leadership

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.”

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.

I’m Torie Osborn, telling the story of the “No on 64” campaign against the heinous 1986 proposition to quarantine people with AIDS, put on the California ballot by right-winger Lyndon LaRouche.

Remember, that was during the dark time when AIDS was still new, all the urban gay and bi-men were at risk, there was zero treatment, and the general population still thought it was transmitted in the air, if not by mosquitos.  Early polling showed a potential big win for Prop 64 – largely due to the fear and misinformation out there.  Seventy percent of the electorate was undecided.  But our community rallied, and in four short months, we won the day.

Our campaign consultant was David Mixner – the best in the biz in our world.  He’d headed up the “No on 6” campaign in 1978 against the Briggs Initiative to fire gay teachers.  I was Southern California Campaign Coordinator for “No on 64,” and Dick Pabich (R.I.P) was my counterpart up north. Co-chairs of the campaign were Harry Britt and Diane Abbitt.  So many who are now gone were key spokespeople, such as Rob Eichberg, Randy Klose, Duke Comegys, Bruce Decker, Peter Scott, Jean O’Leary.

We’d learned from Prop 6 that to win, we needed both the volunteer-driven, grassroots mobilization arm and the paid professional campaign, so “Stop LaRouche” worked alongside “No on 64” campaign — we were tightly coordinated.  It was run by Ivy Bottini, Lee Werbel, Phill Wilson, and others.

AIDS phobia was so widespread that at the start of the campaign, no mainstream liberal groups – except the docs and nurses — were with us, except the Southern California ACLU chapter, and a few random Hollywood straight types, like Paul Newman. But we mobilized like crazy.

In four short months, we raised over $2 million, 90% of which came from our own community, and mounted a professional, bi-partisan campaign that ended up winning 71% of the vote in November.

We had hundreds of House Parties and a thousand volunteers who spoke at every civic club and community group and Dem Club around the state. By the last month, every single slate card, every labor union, everyone was with us.  And every voter in California – including every Republican! – received a strong “NO on 64” mailer.

That 71% victory belonged to our entire LGBTQ+ community that rose up en masse to forge a victory out of the agony of AIDS, and, in the course of it, firmly established ourselves, alongside medical experts, as trusted spokespeople on the issue of HIV and AIDS.

Keeston Lowery was an aide to Portland, Oregon City Commissioner Mike Lindberg in the ’80s and ’90s, at a time where very few LGBT people were out and open in politics. He helped start Right to Privacy PAC, the forerunner to today’s Basic Rights Oregon, one of the earliest political action committees dedicated to fighting for equality for LGBT people.

Keeston acted as a mentor to me when I was a young guy interested in politics in the late ’80s and early ’90s. He encouraged me to be my best. He wrote the recommendation letter which got me the scholarship that helped me get to college, and he was always there with a sound piece of advice for me. He listened patiently to my boy problems and teenage drama, and never failed to calm me down after a break up — which I’m sure was pretty exhausting.

Keeston also went to bat for The City nightclub, an underage LGBT gathering place that was relentlessly persecuted by Portland’s then -homophobic political establishment and police force. He knew how important it was for LGBT kids to have a safe place where we could be ourselves.

He died in 1993 and everyone in politics attended his funeral – Governor Barbara Roberts, Mayor Vera Katz – the list went on and on.  I miss him all the time.  He was a father figure to me, and I wish he was around today, laughing his infectious laugh and giving me a shoulder to lean on.

One thing AIDS took from us was a generation of gay men with decades of collective wisdom and historic memory.  Sometimes, I think that’s the cruelest part of the epidemic — the loss of elders who could have acted as a steadying hand for our community.

Keeston would have relished that role.