The First Ladies of AIDS

My first job in AIDS in the 1980s was at the Los Angeles Shanti Foundation, an organization that provided companions for the dying. When our founding director, Daniel P. Warner, retired from the organization, the final candidates for his job met with the full staff for final interviews.One of those job candidates, Sue Crumpton, had the audacity to be a straight woman. Trying to replace our gay founder. At an AIDS agency. In 1991.Sue’s credentials as a skilled administrator with a background working on behalf of battered women didn’t resonate with some of us. For gay men like me, our […]

AIDS WATCH: Why is the CDC Withholding Billions in PrEP Profits?

You are going to read this story and think it is too outrageous to be true. You would be wrong. And, especially if you are an HIV advocate attending AIDS Watch in Washington, DC, this week, you must demand that our elected officials answer for it. Here’s the story, and some simple questions for you to ask our elected officials in Washington. Truvada is a drug that has been used for many years as a treatment for people with HIV. When the US government researched the use of Truvada as the first drug for pre-exposure prophylaxis (PrEP), US taxpayers footed […]

AIDS WATCH: ‘Strong Interest’ in Hearings on Truvada Patent Profits

Advocates pressuring the Centers for Disease Control and Prevention (CDC) to claim royalties from sales of “Truvada as PrEP” report “strong interest” in congressional hearings on the growing controversy, based on visits to the Hill between HIV advocates and their elected officials and staffs. The CDC owns patents to the use of Truvada as PrEP and has been criticized for not claiming what could be billions of dollars in royalties from Gilead, the manufacturer of Truvada. “Senior health policy staffers have a strong interest in claiming the money the CDC has left on the table,” said James Krellenstein, part of […]

A Farewell to Project Inform

The HIV community was dealt a sad blow when it was announced that the iconic non-profit HIV treatment advocacy organization, Project Inform, will end its programs. Project Inform’s director of research advocacy, David Evans, has been working with the organization in various capacities for the last 27 years. In this message shared with My Fabulous Disease, David reflects on Project Inform’s legacy and on the influence of its legendary founder, Martin Delaney. We must all honor this legacy by ensuring that HIV treatment advocacy remain at the forefront of our movement. – Mark S. King by David Evans Project Inform It’s […]

A Teenage Girl Made a Film

When Ella Johnson made a video documentary about Greg Louganis for her National History Day project, she knew most of her fellow students would be shocked. Ella is a high school freshman in Whitehall, a very small town of the west coast of Michigan. It’s not a bastion of progressive thinking. Ella was right. Her classmates were not exactly enthralled by her choice of topic. But she’s used to it. “My video was met with the usual ‘stupid liberal’ comments,” Ella told me, “but my teachers were very impressed.” Ella has a thick skin for a 15-year-old. She has attended the Women’s March and proudly sports […]

A Medicare Change……

When I was diagnosed with HIV in 1985, there were no medications to treat it. Not one. I never imagined that the medical community would achieve the advancements in HIV treatment and prevention we see today. In fact, President Trump actually proposed a plan in his State of the Union address to end the HIV epidemic in America by 2030. This lofty goal would be thwarted, however, by proposed changes to Medicare Part D that jeopardize the advancements we’ve made in the fight against HIV. I have lived with HIV for almost 35 years. I’ve dealt with more doctors, stubborn […]

Trump’s Cynical HIV Plan

Today is National Black HIV/AIDS Awareness Day, so let’s hear it for the Trump USA team behind his master race plan to end the HIV epidemic by 2030. I’ve even included an actual photo of their meeting on January 6th with a diverse group of stakeholders. Oh, wait. Scratch that. I’m sure the people of color are in the room somewhere. Pouring coffee, perhaps? “Meeting today at HHS with the principal architects of the Administration’s plan to end HIV,” says the Facebook post with the photo from Carl Schmid, the hapless new co-chair of the President’s Advisory Council on HIV/AIDS (PACHA). You remember PACHA. The council that […]

Once, When We Were Heroes

Each year, in honor of World AIDS Day on December 1st, I share my piece “Once, When We Were Heroes.” I will never, ever capture the early days of AIDS any better than this. I’m proud of it, yes, but it’s strange because I feel like I channeled it rather than wrote it. I think some old friends might have helped me with this one. Thanks for reading and for sharing this. MY BROTHER RICHARD smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and […]

What 5,000 Sex Phone Calls…… Taught me about gay men

The number might be a little low. Over the course of my “phone fantasy” career in the 1980s, I spoke to as many as ten customers in a given day, numbering in the many thousands over the years. That’s a lot of heavy breathing. It began when I was a struggling actor in Los Angeles and needed income. I went to work for a gay phone sex company, the kind that doesn’t really exist anymore, that predates hook-up apps or even the internet. Customers responded to ads in the gay skin magazines and, for what we would now consider an […]

This Drag Queen Will Steal Your Heart…

The Kinsey Sicks have been at this a long time. The a cappella singing group of gay men in drag are celebrating 25 years of performing shows that are equal parts camp comedy and very of-the-moment political humor. Benjamin Schatz is an original member of the group, appearing as his drag alter ego Rachel, a character with a penchant for putdowns and a lust for the spotlight. But there’s political humor and then there is true, mortal heartbreak. Benjamin, who writes much of the shows and lyrics, had something important to say, something that had weighed on his mind for many years. He […]