By Karl Schmid
Earlier this year, GLAAD – in collaboration with the Gilead COMPASS Initiative – conducted a survey entitled, “The 2021 State of HIV Stigma Study.” His job was to measure American attitudes toward HIV and people like me living with HIV. The results of the study were discouraging, to say the least: Americans, after 40 years, still seem to know very little about the human immunodeficiency virus.
Why is this?
Is it because the majority – 51% according to this study – just do not think that HIV affects them? Or is it because most of the people surveyed believe that HIV is now treatable? Maybe it’s because among those surveyed, they accepted that HIV is only for promiscuous gay white men and IV drug users?
Whatever the reason, 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 uncomfortable interacting with a medical professional who has HIV.
We have come a long way in fighting the disease, but when it comes to combating the stigma, there is so much more to do and it is time for it to become a priority, because much more dangerous and deadly than the virus itself is the stigma we simply cannot break.
This is one of the main reasons why I founded + Life: a leading platform dedicated to ending HIV / Aids stigma.
How is it that we as a society could go further than 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 ashamed and pushed out? But someone with HIV, who can be managed and treated with proper medication to the point that the virus is undetectable and not sexually transmitted, is somehow still branded, “reckless”, “twisted”, “dangerous”, “unloving”. “and” damaged “goods.”
These words come to me easily because I was on the receiving end of it, but even worse, I used it on myself. And I believed them.
I was just 27 years old when I was diagnosed, living life in London, and enjoying all the things that went along 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 tested positive for HIV,” it felt like a few handcuffs had been hit on my wrists. That was it! It was over. And because of my “reckless”, “perverse” and “dangerous” behavior, I not only put an end to my life, but would also bring shame on the family and friends who thought better of me.
You see, this is what most people think when they get the news. Instead of thinking about their health and the realities of living with HIV at this time, all we think about is how we messed up. The shame, the guilt and the self-loathing create the dangerous spiral that many of us go through, because instead of knowing the truth and the science, everything we have heard is outdated, obsolete and inaccurate statistics.
It was only in 2018, 11 full years of living with HIV, I even heard the term “U = U” or “Untraceable equals non-transmissible”. Even my HIV doctor here in LA, a man I have a lot of respect for who has been treating me for a number of years by that time, has failed to mention this U = U principle. It was only when Bruce Richman of Prevention Access got hold of me via Twitter and invited me to the World Aids Conference in Amsterdam, where I met America’s true superhero, Dr. Anthony Fauci, suggested I learn from this game-changing bit. of science so easily expressed. I wanted answers. The answer I got was because it was still “doubtful”.
By 2018, there was growing evidence to support this simple message that would eventually be the keys to those shackles that were struck on me and millions of others around the world.
In 1998, a San Francisco cohort study showed that mother-to-infant transmission was reduced to almost zero. In 2000, there was the Ugandan cohort that showed ZERO broadcasts when the person’s virus load was less than 1500 copies / ml. In 2008, the Swiss statement concluded that “transmission will not take place” with an undetectable viral load.
Perhaps the two most notable studies in 2014 and 2018 came with the Partner and Partner 2 studies that showed that after 135,000 (yep, you read that right) times had sex without condoms when the virus load was undetectable, there was ZERO transfers were!
All this information could have given me (and millions of others in the same situation) a very different outlook on myself and life. Instead of believing 11 years of 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 have kept this information to themselves. Only when the CDC and the World Health Organization signed it began to be “accepted”.
The question is why? And now, an even bigger question is why is it still kept away from people? There are many doctors and those in the medical community out there who are still guilty of saying things like, “well, yeah, U = U, but that’s not my opinion.” No offense doc, those of us living with HIV do not want the opinion, we want the science. We want the facts. And we wanted them yesterday.
I’m not a doctor and I’m definitely not a scientist; However, I am a person living with HIV who bears the very real, yet fresh scars of the stigma that society still places on people like me. But I know that messages like U = U are the hope, the sunshine, and the message is what EVERYONE needs to hear to finally kick HIV stigma to the brink.
But it goes beyond U = U. In my opinion (one I feel very much part of), the United States has great uncertainty when it comes to sex. Which is weird, because who does not like sex? Whether it’s with ourselves, with someone else, or with a group of people, our people, just like every other living being, love sex. And furthermore, most of us are here because two people have had sex or at least spent time alone in a hockey so that the results can be used in conjunction with science! SHOCKING! We have this strange ghostly relationship with the fact that anything sexual or that has to do with sex is “reckless”, “twisted”, “dangerous” – ugh, those words again!
As long as we can not discuss sex casually and comfortably, I fear that the stigma surrounding HIV will continue to grow. When we sweep things under the rug, or we stick 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 scratching on the sidewalk is more acceptable and accessible than the topic of drug addiction in this country. God prevents us from having things like legalized clean spray booths with assistance. “No no no! We can not have it, it will only encourage drug users.” Research from the European Monitoring Center for Drugs and Drug Addiction has found that safe places to consume reduce drug use in the public space (and discarded needles) and increase participation in drug treatment programs. drug use is associated, to limit.
So what do we do then? How do we get over our anxiety about sex and drugs? How do we get the science and the facts from people in ways they understand, comprehend and trust?
We have conversations. We do not fight, we ask questions. We debate and we come to the realization that even though we differ from face to face, we may have planted a seed that will encourage others and ourselves to dig a little. Knowledge is power after all.
This nation is currently at one of its most complex crossroads – the fight against HIV and COVID-19. The misinformation that caused millions of deaths due to AIDS-related diseases was never needed, just like the people who lost their lives to COVID-19. People die for no reason.
It’s time to bring HIV out of the shadows and darkness of the past 40 years and actually just tell the truth. Throw away all the stereotypes, all the myths and show the world that we as Americans 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 that aims to eradicate the stigma surrounding 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 as a host for a special evening on Broadway in associations with Playbill and Broadway Cares Equity Fights AIDS.