Commentary
By Karl Schmid
Earlier this year, GLAAD—in concern with the Gilead COMPASS Initiative—conducted a survey titled, “The 2021 State of HIV Stigma Study.” Its task was to measurement American attitudes towards HIV and radical similar myself surviving with HIV. The results of the survey were disheartening, to accidental the precise least: Americans, aft 40 years, inactive look to cognize precise small astir the quality immunodeficiency virus.
Why is that?
Is it due to the fact that the bulk – 51%, according to this survey – conscionable don’t deliberation that HIV affects them? Or is it due to the fact that astir of the radical surveyed judge that HIV is treatable now? Perhaps it’s because, among those questioned, they assumed that HIV is lone for promiscuous cheery achromatic men and IV cause users?
Whatever the reasons, HIV continues to spread—and with it, the myths and misconceptions that were calved retired of fearfulness and deficiency of knowing 40 years ago. Four decades person passed, and yet astir radical successful the United States would consciousness discomfort interacting with a aesculapian nonrecreational who has HIV.
We’ve travel a agelong mode successful warring the disease, but erstwhile it comes to warring the stigma, determination is inactive truthful overmuch much to beryllium done and it’s clip that this becomes a priority, due to the fact that acold much unsafe and deadly than the microorganism itself is the stigma that we conscionable cannot look to smash.
This is 1 of the large reasons I founded +Life: a starring level dedicated to ending HIV/AIDs stigma.
How is it that arsenic a nine we person been capable to get beyond referring to crab arsenic the “c” word? How is it that the thought of a joined mates getting a divorcement is nary longer taboo? Or that a kid calved retired of wedlock nary longer means that the parent is shamed and ostracized? But idiosyncratic with HIV, which tin beryllium managed and treated with due medicine to the constituent that the microorganism is undetectable and not sexually transmissible, is someway inactive branded, “reckless,” “perverted, “dangerous,” “unlovable,” and “damaged goods.”
These words travel easy to maine due to the fact that I person been connected the receiving extremity of them, but adjacent worse, I’ve utilized them connected myself. And I believed them.
I was recently 27 years aged erstwhile I was diagnosed, surviving the beingness successful London, and enjoying each the things that came with being a single, young, cheery antheral surviving successful 1 of the astir breathtaking cities successful the world. But the infinitesimal I heard the words, “You’ve tested affirmative for HIV,” it felt similar a brace of handcuffs had been slapped connected my wrists. That was it! It was over. And due to the fact that of my “reckless,” “perverted” and “dangerous” behavior, I had not lone efficaciously ended my life, but would besides bring shame connected the household and friends who thought amended of me.
You see, that’s what astir radical deliberation erstwhile they get the news. Instead of reasoning astir their health, and the realities of surviving with HIV successful this time and age, each we deliberation astir is however we’ve messed up. The shame, the guilt, and the self-loathing make the unsafe spiral galore of america spell down, due to the fact that alternatively of knowing the information and the science, each we’ve heard are outdated, expired, and inaccurate statistics.
It wasn’t until 2018, 11 afloat years of surviving with HIV did I adjacent perceive the word “U=U,” oregon “Undetectable Equals Untransmittable.” Even my HIV doc present successful LA, a antheral I respect greatly who had been treating maine for a fig of years by that point, had failed to notation this U=U principle. It wasn’t until Bruce Richman of Prevention Access got ahold of maine via Twitter, inviting maine to the World AIDS Conference successful Amsterdam, wherever I was introduced to America’s existent superhero, Dr. Anthony Fauci, did I larn astir this game-changing spot of subject truthful easy expressed. I wanted answers. The reply I got was due to the fact that it inactive was “questionable.”
By 2018, determination was mounting grounds to enactment this elemental connection which would yet beryllium to beryllium the keys to those handcuffs that were slapped connected maine and millions of others astir the world.
In 1998, a San Francisco cohort survey showed that transmission from parent to babe was reduced to approaching zero. In 2000, determination was the Ugandan cohort that showed ZERO transmissions erstwhile the person’s viral load was little than 1500 copies/ml. In 2008, The Swiss Statement concluded that “transmission would not occur” with an undetectable viral load.
Perhaps the 2 astir notable studies came successful 2014 and 2018 with the Partner and Partner 2 studies which showed that aft 135,000 (yep, you work that right) times couples had enactment without condoms erstwhile the viral load was undetectable determination were ZERO transmissions!
All of these nuggets of accusation could person fixed maine (and millions of others successful the aforesaid situation) a precise antithetic outlook connected myself and life. Instead of 11 years of believing the stigma and internalizing the stigma, I could person had hope. And anticipation is simply a precise almighty thing.
And yet, my doc and millions astir the satellite similar him continued to support this accusation to themselves. Only erstwhile the CDC and World Health Organization signed connected did it commencement to go “accepted.”
The question is why? And now, an adjacent bigger question is wherefore does it proceed to beryllium kept from people? There are galore doctors and those successful the aesculapian assemblage retired determination who are inactive blameworthy of saying things like, “well, yes, U=U, but it’s not my opinion.” No discourtesy doc, those of america surviving with HIV don’t privation the opinion, we privation the science. We privation the facts. And we wanted them yesterday.
I’m nary doc and I’m surely nary scientist; however, I americium a idiosyncratic surviving with HIV who carries the precise real, still-fresh scars of the stigma that nine continues to heave connected radical similar me. But I cognize that messaging similar U=U is the hope, is the sunshine, and is the connection EVERYONE needs to perceive to yet footwear HIV stigma to the curb.
But it goes beyond U=U. In my sentiment (one that I person a feeling galore share), the United States of America has large insecurity erstwhile it comes to sex. Which is strange, due to the fact that who doesn’t similar sex? Whether it’s with ourselves, with idiosyncratic else, oregon with a radical of people, we quality beings, conscionable similar each different surviving thing, similar sex. And beyond that, astir of america are present due to the fact that 2 radical had enactment oregon astatine slightest spent clip unsocial successful a cubicle truthful that the results could beryllium utilized successful conjunction with science! SHOCKING! We person this unusual spooky narration with it that thing intersexual oregon to bash with enactment is “reckless,” “perverted, “dangerous.” – ugh, those words again!
So for arsenic agelong arsenic we are incapable to sermon enactment casually and comfortably, I fearfulness that the stigma that surrounds HIV volition proceed to grow. When we expanse things nether the carpet, oregon we support them to whispered conversations, oregon worse, unreal they don’t exist, past we make that acheronian underworld wherever stigma thrives.
IV cause users are arsenic stigmatized. Dog crap connected the sidewalk is much acceptable and approachable than the taxable of cause addiction successful this country. God forbid we person things similar legalized cleanable injecting rooms with assistance. “No nary no! We can’t person that, it’ll lone promote cause users.” Rubbish! Research from the European Monitoring Centre for Drugs and Drug Addiction recovered that harmless depletion sites trim cause usage successful nationalist abstraction (and discarded needles) and summation information successful cause addiction attraction programs. They besides assistance bounds the dispersed of HIV, Hepatitis C, and bacterial infections that are associated with intravenous cause use.
So what bash we bash then? How bash we get implicit our uptightness astir enactment and drugs? How bash we get the subject and the facts to radical successful ways successful which they understand, comprehend and trust?
We person conversations. We don’t fight, we inquire questions. We statement and we travel to recognize that adjacent if we disagree look to face, possibly we’ve planted a effect that volition promote others and ourselves to bash a small digging. Knowledge is power, aft all.
This federation stands astatine 1 of its astir analyzable crossroads close present -- the combat against HIV & COVID-19. The misinformation that has caused millions of deaths owed to AIDS-related illnesses ne'er needed to happen, conscionable similar the radical who person mislaid their lives to COVID-19. People are dying for nary reason.
It is clip to bring HIV retired of the shadows and the acheronian of the past 40 years and truly conscionable archer the truth. Throw distant each the stereotypes, each the myths and amusement the satellite that arsenic Americans we tin pb the mode successful the combat against the microorganism and much importantly the stigma.
HIV is not the decease sentence. Stigma is the decease condemnation -- to which I proudly say, “F Stigma!”
Karl Schmid is an Australian-born tv big and producer. In 2019, helium launched Plus Life (@PlusLifeMedia), a integer manner marque aimed astatine smashing the stigma that surrounds HIV. In 2020, Plus Life besides launched arsenic a fractional hr tv programme connected the ABC integer Localish Network and successful November 2021 Schmid made his Broadway debut hosting a peculiar evening connected Broadway successful associations with Playbill and Broadway Cares Equity Fights AIDS.
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