I was walking to my car, chilled, disheveled and still in tangible shock when I first had the thought that I might be HIV+. The walk was long and the air was sharper than I had ever remembered. Each step felt like a dream sequence and I momentarily felt like simply collapsing against the force of the wind and the weight of the fear washing over me. I grew up after AIDS but before twitter and facebook and the gay media I had at my disposal was filled with ads, stories, pictures and red ribbons reminding me that as a gay man becoming HIV+ was a very real threat. I promised myself I would never become one of those statistics.
I was the first openly gay student in my high school and as far as most people knew, the only gay person they had heard of in real life. In 1998 this was normal. I remember my dad crying because he didn’t want me to die of AIDS like a high school friend of his did in the late 80’s. I went to school with that man’s niece and I remember staring at his yearbook photo wondering what his life had been like and how he must have felt dying from this disease. I remember my grandmother handing me clipped articles about HIV/AIDS statistics and stories with tightly held emotion behind her eyes. I promised myself I would never prove them right.
I did all the right things. I tried to be so careful. I never did drugs, and when I did have sex it was the ‘safe’ kind. I always asked and I always told and I never walked away wondering. I’d had an HIV test a few weeks before that came back negative and I remember feeling relieved and empowered. I felt in control.
That was almost 10 years ago and from that moment of realization to getting my test back to calling my best friend and trying to sound confident and calm when I told her, my life has been different. People are diagnosed with diseases all the time, many are lifelong and manageable. But HIV is different. HIV surrounds your entire life and every emotion is filtered through it. It is overwhelming.
I was lucky in that I had a strong Jewish family and loving friends when I found out. They helped me tremendously and from the moment I took that first pill to believing I was going to die to feeling I could actually live and thrive I had them to support and love me. A decade of my life was reallocated to managing this disease and finally after all the unimaginable turmoil I find myself at peace with it. I can now gently and comfortingly guide other newly diagnosed people, nearly all gay men, through example. Just the fact I have lived with it for a decade is often enough to bring hope back into their eyes.
But with hope comes responsibility and unfortunately we have become so accustomed to managing this disease that we seem to have forgotten how devastating it truly is.
In recent years LGBTQ has begun collectively advocating the idea that HIV disclosure is no longer necessary. This has been spearheaded by the Human Rights Committee and Zack Ford of Think Progress under the guise of fighting ‘criminalizing HIV.’
Laws that criminalize nondisclosure of HIV before sexual encounters aren’t actually improving anybody’s behavior, a new study finds.
There are 33 states that have such laws, but they may be doing more to perpetuate the epidemic than to resist it. Researchers at the University of Minnesota found that for men who have sex with men (MSM), the existence of a law did not change how much condomless anal sex they were having. In fact, the men who believed that their state actually had one of these laws were slightly more likely to engage in this risky behavior than others.
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In fact, research has found that for someone with an undetectable viral load, it’s virtually impossible for them to transmit the virus to others. Unfortunately, because of the antiquated fear that inspired these HIV criminalization laws, those individuals would still be just as liable if they did not disclose their status — even with there being near-zero risk of transmission, and even if they used a condom.
The underlying notion here is that there is a level of assumption and justification towards HIV+ men choosing not to disclose their status if they feel it is unnecessary. The argument goes that since an HIV+ person, under the right conditions, isn’t capable of transmitting the virus, they cannot be held liable for not disclosing to their partner. Somehow this is equated to criminalizing HIV. In truth the reasoning behind the law has nothing to do with outcome and everything to do with consent, something the left tends to be highly adamant about.
To further confuse the issue, multiple HIV advocacy organizations have jumped on board with the idea that being undetectable means you cannot transmit the virus. This is considered, through direct implication, to mean an undetectable HIV+ person no longer poses a threat and therefore no longer holds responsibility towards potential partners. While the movement is geared towards fighting actually antiquated notions of fear and stigma surrounding HIV and AIDS, in my opinion, it is opening a very wide door to a very dangerous path.
The above tweet links to this AIDS.gov video below:
What is missing from the dialogue is the strict requirement for durable undetectable levels. As is stated in the video, if the HIV+ person stops taking the medication it will suddenly increases the chances of transmission. It is assumed that the person you are having sex with is taking their medication on time, everyday. The CDC reports gay and bisexual men make up 83% of new HIV infections per year. Nearly 1 in 7 gay/bi men with HIV don’t know they have it. 58% of HIV+ gay/bi men were currently viral suppressed.
Clearly with little over half of the gay/bi male population qualifying for the above requirements, 1 in 7 not even knowing they are infected and a vast majority of new HIV infections being gay/bi men each year there is a problem this movement is ignoring. If you have sex with a man who refuses to disclose his HIV status he may be undetectable or he may not. You have no way of knowing and the numbers are not in your favor.
People with an undetectable viral load sometimes experience what are called ‘blips’ in their viral load. Their viral load increases from undetectable to a low but detectable level before becoming undetectable again on the next test. Viral load blips do not necessarily show that your HIV treatment is no longer working.
There are a number of theories about the reasons for blips. These include variations in the laboratory processes, or having an infection like a cold or the flu. If your viral load stays above detectable on two consecutive tests, or possibly if you have fairly frequent blips, your doctor will want to discuss possible causes and whether you need to change your treatment.
As described by AIDSmap above, there are legitimate reasons why, even on medication, a person’s viral load can increase. Other factors can come into play, for example if you begin taking the popular over-the-counter herbal remedy for depression St. John’s Wart, the interaction with your HIV medication could cause it to be ineffective. I began taking a calcium supplement before bed each night and discovered at my next testing that my viral load increased due to the calcium binding to my HIV medication and diluting its effectiveness.
We tend to have our viral loads checked every three to six months and we only get a snapshot of our viral load on the day we tested. It is simply impossible to know if you are currently undetectable.
From AIDS.gov
HIV may still be found in your genital fluids (semen or vaginal fluids). The viral load test only measures the amount of HIV in your blood. Although ART also lowers viral load in genital fluids, HIV can sometimes be present in your genital fluids even when it is undetectable in your blood.
If we create a cultural sense of entitlement to only disclose when we feel comfortable doing so, we establish a standard of risk that should be considered unacceptable. It may not be a risk to you and your partner when you are dedicated to your medication routine (even with the above stated anomalies) but it is quite different when meeting someone off Grindr and choosing for them how much risk they are taking on. It should not be optional.
It is true you can protect yourself with Prep (Truvada), an HIV medication shown to significantly limit HIV from taking hold in your body if exposed. But this has not been foolproof. There are drug-resistant forms of HIV which mutated within the bodies of people who undertook multiple variations of HIV medications and then stopped taking them. As a result that HIV virus is no longer controlled by that list of medications and if transmitted will not respond to those same medications which are used for newly infected people.
With the ever-changing opinions on what treatment is ‘safe enough’, the question of personal responsibility is never addressed. It seems we expect the HIV- sexual partner to take on the weight of protecting himself from HIV rather than insisting on the moral, ethical and yes legal requirement of disclosing first. Regardless of how undetectable the HIV+ partner believes he is at any given time. Consent matters in all other aspects of sexuality and it is no different here. The HIV awareness movement must move on from fighting non-existent ‘stigma’ and battling the ghosts of ‘medical discrimination’ and focus instead on empowering not only those without HIV to demand open honesty from their partners but equally demand it culturally from HIV+ individuals.
HIV is treatable. The Ryan White program provides free medication and treatment to those who cannot afford it. Medical professionals all across the country are open and compassionate and we are aware of HIV enough to know what to fear and what not to fear. Now is the time for responsibility. It is ridiculous that nearly half of HIV infected men are not taking this treatment and that 80%+ of new infections are gay and bisexual men. The LGBTQ community needs to stand up.
How many young gay men will become HIV+ because they believed they couldn’t be infected?
One final note on HIV disclosure laws. When I opened this discussion I described walking home from a sexual encounter that left me fearful of being infected with HIV. I had just been raped. He was HIV+. HIV disclosure laws can help bring justice to those infected intentionally or through negligence. They do not ‘criminalize’ HIV and they do not create a barricade against testing or treatment. It is irrelevant if they correlate with lower HIV infections. It matters that our society views reckless endangerment of others as a serious offense and it matters that HIV+ people take responsibility for our actions. We know what this disease is like, it is beyond reason why we would put anyone else at risk to experience it too.
HIV could be eradicated in a generation if current HIV+ people recognized they alone control their virus and they can make a vow to never allow it to infect another person.
We are always on the brink of a life-changing discovery and there is always hope. But until this virus can be permanently silenced, it is our responsibility to speak up and make sure we never find ourselves continuing its evolution through the next generation due to our own selfish and temporary desires. Disclose to everyone. Disclose every time. I don’t get to make that choice for you.
My virus will never leave my body and infect another person as long as I can stop it. That is my promise and I sincerely hope it is or will be shared by all others like me.