How Serosorting Perpetuates the AIDS Pandemic

Photo by  Charles Deluvio 🇵🇭🇨🇦  on  Unsplash    [Image Description: An English cucumber with half the cellophane wrapped pulled back sits against a baby blue background.]

Photo by Charles Deluvio 🇵🇭🇨🇦 on Unsplash

[Image Description: An English cucumber with half the cellophane wrapped pulled back sits against a baby blue background.]

A few times during my early 20s, I was attracted to guys who told me they were HIV positive. Like everyone else, I was afraid of contracting the virus, so I chose not to pursue romantic or sexual relationships with these guys. This behavior is called serosorting. Unfortunately, it didn't prevent me from getting HIV.

What You Don't Know Can Hurt You

I knew more about HIV than the average person before I got it. I had an assumption that everyone understands how HIV testing and prevention work, which I quickly learned to be false. Since I've become involved with HIV research, I've noticed large gaps between what scientists know about HIV, how it's communicated to the public and what people actually know. As a general rule, public health policies are about five years behind the science of HIV while public awareness is about a decade behind medical research.

For instance, many people don't know that HIV antiretrovirals largely prevent positive individuals from spreading the virus. The ongoing Opposites Attract study has followed over 150 serodiscordant male-male couples in multiple countries who choose not to use condoms while having sex since 2012. The positive partners are intermittently tested to confirm medication adherence and viral suppression, and so far zero cases of HIV transmissions from one partner to the other have been documented. The results so far seem to validate a 2008 statement issued by the Swiss Federal Commission for HIV: “An HIV-infected person on antiretroviral therapy with completely suppressed viraemia is not sexually infectious, i.e. cannot transmit HIV through sexual contact.”

However, some of the negative subjects have contracted HIV during the course of the Opposites Attract study. Using genetic testing, the researchers determined that a few participants contracted HIV from someone who wasn't their partner because they had a different strain of the virus. Presumably, they were having extracurricular relations with untreated individuals.

Why HIV Won't Go Away

Nonetheless, we still have laws that allow HIV positive people to be jailed for failing to disclose their HIV status to their partners, even when no transmission occurred. The idea that HIV positive people are knowingly spreading the virus is based on the ignorance and fear that was understandable in the 80s. Now that we know how science works, we should realize that people who are not on antiretrovirals primarily drive infection rates. A 2015 study published in the Journal of the American Medical Association, or JAMA, estimated that, "Persons who are HIV infected but undiagnosed and persons who are HIV diagnosed but not retained in medical care were responsible for 91.5 percent of the estimated 45 000 HIV transmissions in 2009."

I do not intend to stigmatize these people. Not everyone has access to testing and medication. Thanks to the Ryan White Program, there are federal and state programs that cover the costs of medications for lower income citizens, but these programs are suffering from budget cuts while prices remain astronomically high (the high cost of antiretrovirals is a topic in itself). You also need a doctor to prescribe your medication, and not everyone can afford to see a doctor. While HIV research is progressing rapidly, we still have a long way to go in actually providing basic health care for everyone who needs it.

Some HIV positive people choose not to take treatment because they experience side effects. Others may have trouble taking pills for whatever reason. The side effects of older antiretrovirals such as AZT were sometimes deadly, so positive individuals chose not to take them until they experienced AIDS symptoms. Because the current generation of meds are safe for the majority of people, it has become common practice for HIV positive people to start treatment as soon as they are diagnosed. As long as they adhere to their medication regimen, their HIV viral load can drop below detectable levels within a few months, and they will be unlikely to transmit the virus to others.

Still, people fall out of care for a variety of reasons. The same JAMA study claims that 45 percent of the HIV positive population in the U.S. in 2009 "were aware of their infection but not retained in care," and over 18 percent were undiagnosed. Therefore, it is always advisable to use condoms with all sexual partners. The CDC website has information about HIV testing, and the NIH has plenty of information about what to do if you test positive for HIV.

The Risks We Take

You are generally at a lower risk of contracting HIV from having sex with an individual who is on antiretroviral treatment than you are from hooking up with someone who tells you they do not have HIV but isn't 100 percent positive that they are negative.

If a person has HIV but doesn't know it, their virus isn't being controlled by medication, which makes them contagious. HIV positive individuals are actually most contagious right after they contract it. You can actually test negative for HIV antibodies while your viral load is at its peak.

It is impossible to know if someone has HIV no matter what they say. It's a pointless question to ask. A much better strategy to protect yourself would be treating everyone like they have untreated HIV. Use the same precautions that you would either way. Know you risks, but don't bother factoring in what the other person tells you about their status.

In "monogamous" relationships, it is common to do away with condoms once trust has been established. While having discussions about sexual histories can help you make that decision, a much better way to establish trust is to get tested together. Your partner may truly believe that they are negative and are not putting you at risk, but they could be wrong. Same goes for you.

Although testing techniques are improving, some HIV tests have a window period during which you can have a false negative, so you should always get retested a few months after your most recent possible exposure. Older tests look for HIV antibodies, which can take up to six months to develop after someone is infected. Newer tests look for antigens, which appear sooner, yet it is still possible to test negative for HIV when you do have it. This happened to me. Fortunately, I chose to get retested, and everything has turned out fine. Sadly, not everyone does.

Now that Truvada, a drug that has long been used to treat HIV, has become an accepted way for non-infected individuals to safeguard themselves from contracting HIV, more people are realizing how these medications prevent the virus from entering or exiting cells. Truvada as PrEP (Pre-Exposure Prophylaxis) will hopefully reduce the stigma surrounding HIV and empower people to take more personal responsibility for their own health. Learn more about how Truvada as PrEP prevents HIV here.

A Word on HIV Etiquette

Part of the reason that ignorance about HIV proliferates is because of the preconceived notions embedded in the language we use to discuss it. For instance, the word "clean" has become synonyms with both "having no STIs" and "using no drugs." Asking an HIV person if they are "clean" is one of the unintentionally rudest things you can do.

Just think about how that sounds for a second. Do you expect someone to respond, "No, I'm dirty?" A better question to ask before choosing to have sex with someone is "When was the last time you were tested for STIs?" but even the answer to that questions only tells you so much. When someone tells you they are HIV positive, you should ask them, "Are you on treatment, and is your viral load undetectable?" It is a better indicator of your risk, and it that shows you care about them.

If you do not plan on having sex with someone, it is absolutely none of your business whether or not they have HIV, so don't ask. Here is a great graphic that explains

Credit to  the Stigma Project    [Image Description: A Infographic about HIV disclosure etiquette with a purple watercolor background. Your friend just told you they have HIV. Here are a few suggestions on how to properly respond: “You’re not alone.” “Have you started treatment yet?” “I’m here for you.” “Have you found a good doctor?” “I appreciate you telling me that.”]

Credit to the Stigma Project

[Image Description: A Infographic about HIV disclosure etiquette with a purple watercolor background. Your friend just told you they have HIV. Here are a few suggestions on how to properly respond: “You’re not alone.” “Have you started treatment yet?” “I’m here for you.” “Have you found a good doctor?” “I appreciate you telling me that.”]

How Serosorting Hurts us All

Most people who die of AIDS in the U.S. today are people who either didn't know they had HIV until it was too late, or they cannot access treatment. A 2001 article by the Atlantic titled ”Is There Still an AIDS Crisis in the U.S.? It Depends on Who You Are" summed it up: "If you are someone who can afford these treatments, and you have the lifestyle that enables you to take them appropriately, then you can live a full life...but that profile does not apply to most people with AIDS in the world." AIDS is just as deadly today as it was in the 80's without proper diagnosis and treatment, so you must stay proactive by getting tested and staying on treatment if you are diagnosed.

I rarely think about my HIV status. Other than taking a daily pill, it has no real bearing on my life. I'm very lucky. The only time it becomes an issue is when it comes to dating. People are free to make their own decisions about who they want to have sex with and why, but they must understand that choosing someone who tells you they are HIV negative over someone who tells you they are positive doesn't necessarily decrease your risk for HIV; in fact, it may increase your risk for getting HIV because your trust could be misguided. The only way to protect yourself against HIV is to get tested on a regular basis if you are at risk, or take PrEP. While I certainly understand the fear that drives serosorting, it does more overall harm than good for all parties.

Robert Wells is a former English teacher and current freelance writer living in North Carolina.