U=U, what does this acronym mean in the context of HIV and why does it matter? Alex bares his soul and explains his own firsthand experience with the virus.
DISCLAIMER: this post has lots of psycho-drama and explicit content. Readers have been warned!
Risks and paranoia.
A blog reader asked me, “Is there a situation where you have taken a risk and never regretted it?”
I gladly and explicitly answer: the risk I never regretted was when I stopped using condoms with my husband.
I do not hide that I spent months with paranoia before the decision: who made me do it, could I continue as I was used to? Impossible!
At the time, 2017-18, I was seeing this strange acronym going around the Internet: “U=U,” “undetectable = untransmittable.” Complex concept for those unaware of HIV but I had already understood the reference to the quantity of virus in my blood.
A fundamental discovery that could have stopped the spread of HIV in a few years and yet at least in Italy it did not have too much media coverage, in fact only a few HIV activists were talking about it.
Then my doctor would throw in, “yes, that’s right, it’s proven by many studies, but I wouldn’t risk it if I were you.”
For me and my beloved HIV negative man, there were more doubts than enthusiasm about what doctors and international associations were saying regarding the lack of sexual transmission due to the effectiveness of antivirals, and when you know about a new protection strategy but are afraid of the unknown, you may as well go on with your usual life however, the acquired awareness has already torn you out of your comfort zone by making you feel, in the true sense of the word, an uncomfortableness on you that you didn’t even feel before.
Realizing how this matter threatened to send us into a crisis, we allowed ourselves the classic “pause for reflection,” which if for others is the politically correct of “breaking up”, for us, on the other hand, was true reflection on a situation we could not and would not ignore any longer.
Had I been more of an asshole, I would have sneaked the condom off (stealthing) that, however, is sexual abuse and would have resulted in a catastrophic breakup because I would have betrayed him in the worst way, with an act of violence.
HIV and condomless sex: science before U=U.
The virus was not yet with me when between 2007 and 2008 there was talk of studies first in Switzerland then in Canada confirming the impossibility of transmission to the negative partner of a serodiscordant couple. There, however, the sample focused more on hetero couples seeking pregnancy so, more than that, I didn’t delve into it. There were antivirals though compared to 2024, 2007-2008 is a geological era ago.
Even at the same time a newspaper article had come out, which I can’t find now, in which they talked about a gene being isolated in people exposed to high HIV risk and who remained negative; “test available within two years,” the Japanese said. And I dumbly thought “come on let’s hope it comes out soon worldwide so I can do it too and if I’m protected I don’t have to worry about AIDS anymore”-I barely understood the difference between HIV and AIDS.
Come 2009, then 10 and 11, that story went under the radar; in 2012, however, PrEP pre-exposure prophylaxis started coming out in the U.S. and I, still negative, was reassured: OK a few months of patience and it will come to Italy!
Months however became years because this therapy for negative people who want to avoid getting infected came to Europe in 2016 but I had already been HIV positive since 2013 after an abusive relationship.
I was in the worst of situations even though, had it been up to me, I would have gone on PrEP as soon as it came out even if it meant being the first to test it on myself. How fucking scared I was of AIDS in my teens, to hell with all of them and their serophobia.
U=U: the end of paranoia.
Between 2007 and 2016, three studies involved several gay and hetero serodiscordant couples in which the HIV-positive partner was on antiviral drugs, and in no case did transmission from sexual contact without barrier protection occur. Since then gradually people have been talking about it on specialized forums, first half-heartedly then increasingly loudly.
U=U, undetectable viral load, I thought I was hearing an unfamiliar language because still in 2017-18 in Italy this evidence was not widespread. The Italian scientific community only made it official on November 12, 2019.
I, however, had grown tired of standing behind the condoms because for years the test results had been speaking very clearly: first “less than fifty copies,” then “undetectable,” the virus inside me was always relaxing and probably even saying to the lab technicians, “do me the favor of telling my human that I’m not going to touch his husband! He still doesn’t get it!”
As a poz man, I was unable to hear what HIV was saying to me, let alone neg folks in the hospital! So I went on for quite a while longer keeping the “condoms” option in the grocery note even though, while not letting it weigh on me, I was growing impatient: living together planning to get married, having the scientific evidence U=U in the house but behaving as if we were in a serodiscordant couple in the early days where the virus is still scary.
Freedom
If sneaking off condoms is abuse, “accidentally” forgetting to buy them isn’t! Shit happens!
So, that night I just inserted my hand under the pillow and said, “oops, yeah, darn I thought there was still one left, I actually felt like I forgot to buy something! Now what do we do?”
I was comfortable because I had consulted with the doctor earlier, “we would like to get married and experience an easier intimacy but just in case, I would like my husband to go into PrEP; what do you think, doc?”
To make a long story short, the doctor replied that since I have an undetectable viral load and our relationship is monogamous, pre-exposure prophylaxis is unnecessary; so I gave my partner a provocation that was a little bit ironic a little bit not: “perfect, then if you cheat on me and add an extra virus to our family, don’t blame me.
What do we do, give it up or U=U? “The second option,” he replied. And I was being a jerk as usual: no, I didn’t understand, the second option that is? I want to know what you decided. No shortcuts or unspoken words. Explicit consent or dissent.
Only when he looked me in the eye and said “U=U” did the evening go on. The following days were not easy because – I admit – he conditioned me a little bit with paranoia “what if you got the virus raising up in your blood and you don’t know,” “what if medicine decided not to work, science I don’t know if and how much to trust, there is always bad luck.”
How could I tell him “if you don’t trust the doctor trust me” if it was a situation I had little control of myself as well? To hear him tell it, they should have invented a device that could be hooked onto a finger (which one of the 21?) that would monitor viral load minute by minute.
OK, now we are both laughing about it however then I would have felt like throttling him and being widowed early because it was starting to bring back my fears too, so I armed myself with patience by letting him wait for the technical times and get the HIV test while rationally aware myself first of what the outcome would be.
Finally with his negative result in hand I took him to celebrate at a nice place where we had appetizer, first course, second course and dessert both of us. That is, three with the virus.
We were free and this state of mind would last forever, with the condom to be used only if we voluntarily chose it. I most of all felt as liberated as I had ever felt before.
At the end of the evening, in a coincidence we will never forget, the car radio played a song that I still carry in my heart to this day: “my freedom” by Zucchero. Song on which I finally proposed to him and we ended up like two jerks singing “my freedom talking, my freedom walking.”
NOTE: I chose Zucchero’s song for the English article as it’s about a guy setting free from an abusing relationship and was suitable for me, my husband and our past HIV fears. But the true song playing that day was in Italian and is a sort of hymn to freedom.
It’s now been years since the never-purchased box and we got married in the fall of 2019; my husband’s still HIV negative, he’s still putting up with me, and I’ve never regretted looking at the pharmacy sign that day and moving on. Then, truth be told, during the Covid emergency we became more afraid than before and stocked up on condoms, but the awareness we gained also allowed us to ironize about preventing the two viruses together: where does the mask go? Where does the condom go? How does your face look? And mine?
Since meeting my HIV virus, I swore to myself that I would always use condoms even in a long-term relationship. But what about now? Yes, come on, but in 2013 the situation was different and U=U had not yet been discovered.
Okay, I would have liked to end the post with the song but I don’t feel like it because the risk is still high: true that we U=U poz folks are the safest people, in fact we are periodically checked for all sexually transmitted infections. This is also true for neg people under pre-exposure prophylaxis (PrEP) since the therapy in question involves regular check ups, from Chlamydia to syphilis and so on.
The reality, however, is complex, and the circulating virus is not something to be taken lightly. Especially here in Italy there is poor information about U=U and PrEP, years of stigma shared by wrong communication campaigns is still causing problems so much so that screenings for sexually transmitted infections are still fully paid for by patients because sexuality is still seen as a whim and not a human right; for hetero, gay and any involved group.
Then condoms still remain a necessary aid to protect yourself (and protect others) in case you are unaware of your health status. I chose to share my experience just to make the point that, today, HIV prevention no longer comes through physical barriers alone – and stigma has never been a protection method.
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