Column: HIV Stigma is Natural, and Still Wrong

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On this World AIDS Day, someone just got blocked on a dating app, because he posted his HIV-positive status.  Your friend who proudly displays his bumper sticker proclaiming equality just lost interest in his handsome neighbor, because he found out the guy is living with HIV.  We’re three decades into the HIV epidemic, yet stigma is everywhere.

Why is it so hard to get past this hurtful division in the community?  One reason: it’s our community’s dirty little secret.  Everyone knows that HIV stigma still drives all types of impressions and decisions.  Few acknowledge that their own actions lay the bricks in the wall of HIV stigma. 

At some level, people probably feel a little guilty when they reject someone from their social circle or their bedroom based on HIV status.  They know they’d be called out if they took ownership of their actions, so they keep them quiet, or bury their motives in rationalizations. 

Let’s just get this out in the open, so that we can move on.  Stigma is natural.  That’s right: humans have a built-in evolutionary response, to recoil when any possible threat is perceived, and the default setting is hyper-vigilance.  

True, our ancestors’ better selves also had a programmed impulse to protect the tribe or family by rushing to help whoever came back to the cave coughing, shivering, collapsing, or even bleeding or missing a limb.  Yet those noble predecessors were often taken out by the virus, bacteria, or lurking predator that had first attacked their peer.  

In our human history, those who help care for their friends have themselves often been more likely to fall prey to the easy transmission of Zika, cholera, the 1918 flu, smallpox (especially from the 1700s to 1900s), the Black Plague of the 1340s, etc.

Selfishness often seems to perpetuate a family’s gene line best, and as part of that cruel bargain, people afflicted by disease or bad luck were often left behind.  In some tribes, even elders who were healthy but becoming old and frail were pushed out to die alone in the wilderness or at sea, because they would slow down the pursuit of food, or the escape from warring tribes.

Our primitive instinct for self-preservation is far from always rational.  As recently as my parents’ time, people used to whisper the word “cancer,” as if naming the disease aloud would tempt fate to give it to them, too.  Why such a foolish custom?  The more invisible or misunderstood the threat, the more irrational our response.

As late as 1983, the American Medical Association incorrectly warned, “Evidence suggests household contact may transmit AIDS.”   In the early days of the HIV epidemic, loving families turned into violent mobs in their attempts to drive HIV away.  In 1987, local residents burned down the home of the Ray family here in Florida, to keep their two hemophilic sons who were living with HIV from attending the local school.  Meanwhile, in Indiana, families canceled their newspaper subscriptions because an HIV-positive local boy named Ryan White was delivering them.

For at least the first decade after HIV was identified in the U.S., many gay guys were even afraid that “deep kissing” would spread HIV.   Today, most people know that HIV does not transmit efficiently the way that other STDs do.  And yet, irrational reflexes persist: too many guys will gladly indulge every condomless fantasy with a stranger, but refuse even protected sex with someone who discloses his HIV-positive status.

Trying to overcome stigma means talking our selves out of impulses that once ensured the survival of our species.  But we can do it.  Just as we no longer make sacrifices to the angry mountain to prevent volcanoes, or whisper the word “cancer,” we don’t have to act on irrational fears when it comes to HIV.  (Healthy protections, yes; hysteria, no.)

With today’s more powerful treatments, the science is now in: when guys are successfully treated for HIV, there’s too little virus present to pass during sex.  That’s right: a new study tells what happened when 368 mixed HIV status couples had sex 16,000 times over several years, without using condoms (13,000 times without using PrEP, either).  Nearly 5,000 times, the HIV-negative partner was the “bottom.”   Yet not a single infection resulted.  Why were these encounters safe?  All of the HIV-positive partners had consistently undetectable virus levels.  (Int’l AIDS Society Conference, July 2017, Abstract 5469).  

The CDC now agrees that a person living with HIV who has a sustained undetectable viral load has “effectively no risk of sexually transmitting the virus.” (CDC Sept 27, 2017).   It is fair to note that anyone can hang the word “undetectable” on his profile.  See it on a lab slip, not just on an app.

Make no mistake: untreated, or sporadically treated HIV is still the cause of premature death for nearly 1,000 Floridians each year.  If you’re HIV-negative, stay safe from HIV; if you’re HIV-positive, get help staying in care.  

HIV is still scary.  HIV-positive people aren’t.  On this, the 30th annual World AIDS Day, let’s end stigma.  It starts with you. 

Stephen Fallon is the Executive Director of Latinos Salud, an HIV agency that created and uses the DiversiSAFE model to help clients effectively use whichever method they choose to stay safe from HIV, whether condoms, PrEP, undetectable partner status, negotiated safety, or, for emergencies, PEP.  Latinos Salud also helps all guys living with HIV (not just Latinos) get into and stay in care.


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