By Karl Schmid
Earlier this year, GLAAD—in partnership with the Gilead COMPASS Initiative—conducted a survey titled, “The 2021 State of HIV Stigma Study.” Its task was to measure American attitudes towards HIV and people like myself living with HIV. The results of the study were disheartening, to say the very least: Americans, after 40 years, still seem to know very little about the human immunodeficiency virus.
Why is that?
Is it because the majority – 51%, according to this study – just don’t think that HIV affects them? Or is it because most of the people surveyed believe that HIV is treatable now? Perhaps it’s because, among those questioned, they assumed that HIV is only for promiscuous gay white men and IV drug users?
Whatever the reasons, HIV continues to spread—and with it, the myths and misconceptions that were born out of fear and lack of understanding 40 years ago. Four decades have passed, and yet most people in the United States would feel discomfort interacting with a medical professional who has HIV.
We’ve come a long way in fighting the disease, but when it comes to fighting the stigma, there is still so much more to be done and it’s time that this becomes a priority, because far more dangerous and deadly than the virus itself is the stigma that we just cannot seem to smash.
This is one of the major reasons I founded +Life: a leading platform dedicated to ending HIV/AIDs stigma.
How is it that as a society we have been able to get beyond referring to cancer as the “c” word? How is it that the idea of a married couple getting a divorce is no longer taboo? Or that a child born out of wedlock no longer means that the mother is shamed and ostracized? But someone with HIV, which can be managed and treated with proper medication to the point that the virus is undetectable and not sexually transmissible, is somehow still branded, “reckless,” “perverted, “dangerous,” “unlovable,” and “damaged goods.”
These words come easily to me because I have been on the receiving end of them, but even worse, I’ve used them on myself. And I believed them.
I was newly 27 years old when I was diagnosed, living the life in London, and enjoying all the things that came with being a single, young, gay man living in one of the most exciting cities in the world. But the moment I heard the words, “You’ve tested positive for HIV,” it felt like a pair of handcuffs had been slapped on my wrists. That was it! It was over. And because of my “reckless,” “perverted” and “dangerous” behavior, I had not only effectively ended my life, but would also bring shame on the family and friends who thought better of me.
You see, that’s what most people think when they get the news. Instead of thinking about their health, and the realities of living with HIV in this day and age, all we think about is how we’ve messed up. The shame, the guilt, and the self-loathing create the dangerous spiral many of us go down, because instead of knowing the truth and the science, all we’ve heard are outdated, expired, and inaccurate statistics.
It wasn’t until 2018, 11 full years of living with HIV did I even hear the term “U=U,” or “Undetectable Equals Untransmittable.” Even my HIV doctor here in LA, a man I respect greatly who had been treating me for a number of years by that point, had failed to mention this U=U principle. It wasn’t until Bruce Richman of Prevention Access got ahold of me via Twitter, inviting me to the World AIDS Conference in Amsterdam, where I was introduced to America’s true superhero, Dr. Anthony Fauci, did I learn about this game-changing bit of science so easily expressed. I wanted answers. The answer I got was because it still was “questionable.”
By 2018, there was mounting evidence to support this simple message which would ultimately prove to be the keys to those handcuffs that were slapped on me and millions of others around the world.
In 1998, a San Francisco cohort study showed that transmission from mother to baby was reduced to approaching zero. In 2000, there was the Ugandan cohort that showed ZERO transmissions when the person’s viral load was less than 1500 copies/ml. In 2008, The Swiss Statement concluded that “transmission would not occur” with an undetectable viral load.
Perhaps the two most notable studies came in 2014 and 2018 with the Partner and Partner 2 studies which showed that after 135,000 (yep, you read that right) times couples had sex without condoms when the viral load was undetectable there were ZERO transmissions!
All of these nuggets of information could have given me (and millions of others in the same situation) a very different outlook on myself and life. Instead of 11 years of believing the stigma and internalizing the stigma, I could have had hope. And hope is a very powerful thing.
And yet, my doctor and millions around the world like him continued to keep this information to themselves. Only when the CDC and World Health Organization signed on did it start to become “accepted.”
The question is why? And now, an even bigger question is why does it continue to be kept from people? There are many doctors and those in the medical community out there who are still guilty of saying things like, “well, yes, U=U, but it’s not my opinion.” No offense doc, those of us living with HIV don’t want the opinion, we want the science. We want the facts. And we wanted them yesterday.
I’m no doctor and I’m certainly no scientist; however, I am a person living with HIV who carries the very real, still-fresh scars of the stigma that society continues to heave on people like me. But I know that messaging like U=U is the hope, is the sunshine, and is the message EVERYONE needs to hear to finally kick HIV stigma to the curb.
But it goes beyond U=U. In my opinion (one that I have a feeling many share), the United States of America has major insecurity when it comes to sex. Which is strange, because who doesn’t like sex? Whether it’s with ourselves, with someone else, or with a group of people, we human beings, just like every other living thing, like sex. And beyond that, most of us are here because two people had sex or at least spent time alone in a cubicle so that the results could be used in conjunction with science! SHOCKING! We have this strange spooky relationship with it that anything sexual or to do with sex is “reckless,” “perverted, “dangerous.” – ugh, those words again!
So for as long as we are unable to discuss sex casually and comfortably, I fear that the stigma that surrounds HIV will continue to grow. When we sweep things under the carpet, or we keep them to whispered conversations, or worse, pretend they don’t exist, then we create that dark underworld where stigma thrives.
IV drug users are equally stigmatized. Dog crap on the sidewalk is more acceptable and approachable than the topic of drug addiction in this country. God forbid we have things like legalized clean injecting rooms with assistance. “No no no! We can’t have that, it’ll only encourage drug users.” Rubbish! Research from the European Monitoring Centre for Drugs and Drug Addiction found that safe consumption sites reduce drug use in public space (and discarded needles) and increase participation in drug addiction treatment programs. They also help limit the spread of HIV, Hepatitis C, and bacterial infections that are associated with intravenous drug use.
So what do we do then? How do we get over our uptightness about sex and drugs? How do we get the science and the facts to people in ways in which they understand, comprehend and trust?
We have conversations. We don’t fight, we ask questions. We debate and we come to understand that even if we disagree face to face, perhaps we’ve planted a seed that will encourage others and ourselves to do a little digging. Knowledge is power, after all.
This nation stands at one of its most complicated crossroads right now -- the fight against HIV & COVID-19. The misinformation that has caused millions of deaths due to AIDS-related illnesses never needed to happen, just like the people who have lost their lives to COVID-19. People are dying for no reason.
It is time to bring HIV out of the shadows and the darkness of the past 40 years and really just tell the truth. Throw away all the stereotypes, all the myths and show the world that as Americans we can lead the way in the fight against the virus and more importantly the stigma.
HIV is not the death sentence. Stigma is the death sentence -- to which I proudly say, “F Stigma!”
Karl Schmid is an Australian-born television host and producer. In 2019, he launched Plus Life (@PlusLifeMedia), a digital lifestyle brand aimed at smashing the stigma that surrounds HIV. In 2020, Plus Life also launched as a half hour television program on the ABC digital Localish Network and in November 2021 Schmid made his Broadway debut hosting a special evening on Broadway in associations with Playbill and Broadway Cares Equity Fights AIDS.
Photo Credit: Luke Fontana