What does Undetectable = Untransmittable mean for U?

Thomas’ libido was especially high that Thursday night. The Orlando resident, who prefers not to use his real name, met a man at his Grand Bohemian Hotel room on the dating application Grindr.

They became sexual rather quickly and Thomas, lost in the delirium of his sex drive, says he allowed the man to penetrate him without a condom. Thomas snapped, “Wait. I’m not on PrEP, pull out.”

The man obliged and then calmly told Thomas, “I’m undetectable. So I’m untransmittable,” but Thomas mostly recalls his sense of gnawing panic that traversed through his body. ‘Undetectable’? ‘Untransmittable’? All he knew was that he had just taken a risk.

“U = U,” or Undetectable equals Untransmittable, has become somewhat of a slogan for some members of the LGBTQ community. Thomas has not received an HIV test after his encounter. “I’m not ready for news that I’ve been infected,” he says. “I’m not insured right now.”

If what the Grand Bohemian guest told Thomas is true, then Thomas ought to have nothing to be concerned about. Unless he does.

Empath Partners in Care, or EPIC, is a nonprofit integrated network of care supporting those challenged by chronic and advanced illness in the Tampa Bay region. Executive Director Joy Winheim describes “U = U” this way: “After much internal debate at the CDC, the report came out that if you are HIV-positive and you are virally suppressed, meaning that the amount is so low it comes out as undetectable, then you are not able to transmit the virus to another.

“That’s fantastic,” Winheim continues, “but it does lend to the idea that if I’m HIV-positive I can just have unprotected sex whenever and with whomever I want.”

EPIC ED Joy Winheim (R) with wife, Lael Arango Winheim. (Photo courtesy of Joy Winheim)

The explanation worries Thomas. “What if he recently became detectable again but just didn’t know it?” he asks.

According to the National Institutes of Health (NIH), “there is effectively no risk of sexual transmission of HIV when the partner living with HIV has achieved an undetectable viral load and then maintained it for at least six months.” NIH’s research adds that most individuals living with HIV who start taking antiretroviral therapy daily as prescribed “achieve an undetectable viral load within one to six months after beginning treatment.”

“If you’re on any medication for a really long time,” says Winheim, “the body’s reaction to the meds can change. For example, you take Tylenol for ten years … after a while Tylenol doesn’t work for you. The same concept can apply to HIV meds. Some can become resistant. Regiments change.”

For this and other reasons, Winheim recommends that HIV-positive individuals return to their primary caregiver for regular checkups to determine if they remain undetectable.

“There will always be alcohol, drugs and bad decisions,” she says. “In my world, the only way to stay negative is to use PrEP and condoms.” PrEP, or Pre-Exposure Prophylaxis, is a daily pill that can reduce exposure to HIV by up to 99%.

How many not on PrEP would engage in sex with a “U = U” individual without the use of a condom? St. Petersburg resident Steve Hasley says, “My partner of 13 years was positive and we often had versatile intercourse without condoms, but he never came inside me. I know about ‘U = U’ and it wouldn’t stop me. But I’m not certain if it’s fair for me to answer considering I’ve been on PrEP for so long.”

Hasley continues, “Oddly, before PrEP existed, I had more HIV-positive guys turn me down because they were concerned about infecting me … they’d only date other HIV-positive guys.”

“‘U = U’ is not an excuse for risky behavior,” says Brian Bailey, Chief Marketing and Experience Officer at Metro Inclusive Health. The organization’s many essential health and community services served more than 27,000 individuals in 2018 and they are on course to significantly increase that number this year.

The goal of each HIV-positive person is to reach the level of “U = U,” Bailey explains. “Getting to undetectable and therefore untransmittable means that as an individual you’re part of the solution in helping to prevent HIV and ultimately end the epidemic.

“If an HIV-positive person stops taking their medication for more than five days,” he continues, “then they seriously risk becoming detectable. Moreover, an HIV-positive person ought to be checking in with their primary caregiver every 90 days, not every six months, to make sure that they are indeed still undetectable.”

“It is a 100% preventable disease in this day and age,” says Bailey. “Adherence to medication is crucial.”

Winheim agrees. “One-hundred-percent adherence to daily medication,” she says, “is key.”

Should Thomas have continued having sex with his “U = U” partner without a condom or having utilized PrEP? “Absolutely not,” says Bailey.

Watermark surveyed 50 individuals from Central Florida and Tampa Bay’s LGBTQ communities to see if they agreed. They were asked one straightforward question: If they were in Thomas’ shoes, knowing they were HIV-negative but without a condom and without utilizing PrEP, would they engage in unprotected sex with their “U = U” partner?

Of the 50, 18 said yes. The survey encompassed a wide cross-section of gender identities and sexual orientations, including some who identified as straight.

“It makes me a little sad,” Winheim reflects on the results. “It’s not enough for me for the HIV-positive person to say, ‘Hey, it’s all good. I’m U = U.’ People are going to say whatever they want to say to get you to have sex with them.”

One respondent who participated in the survey and identified as HIV-positive but withheld his name answered this way: “Are you on PrEP? That’s my answer. Are you on PrEP?” He made it clear that he felt there’s “so much one can do” to prevent contracting HIV.

Robert, a St. Petersburg resident and a gay man of 71, said in response to the survey, “Absolutely not. I always err on the side of caution. I would, however, show my partner a ‘good time.’”

Katherine, a transgender woman from Tampa, responded this way: “Absolutely yes. Untransmittable means untransmittable. I trust the science.”

Of the 18 in the survey who, like Katherine, answered “yes” to the question, seven made it clear that trust was a central issue. “It’s not the science that concerns me,” said St. Petersburg’s Pedro Zamora, “it’s the honesty of the person.”

“They’re undetectable = untransmittable,” Tampa Bay’s Christopher Davies added. “I have a lower risk having sex with them than someone who doesn’t know their status. I trust the medical knowledge we have. It’s key to ending the stigma of HIV.”

Of the aforementioned 18, two also stressed that they would only engage in unprotected sex if they were topping and not bottoming. But Bailey says that “U = U” still doesn’t offer an excuse not to use a condom regardless of sexual position.

According to Joshua Myers, Hope & Help’s Development and Communications Director, “U = U” is an informational campaign to promote the power of HIV medication. The Central Florida organization has sought to inspire, equip and mobilize people to take action against HIV/AIDS for more than 30 years. Once undetectable, “There is a zero percent chance of communicating HIV to another person through sex,” he says.

Hope & Help’s Development and Communications Director Joshua Myers speaks from the stage of the Walt Disney Amphitheater at Lake Eola Park in Orlando during the 2019 Orlando AIDS Walk. (Photo by Jake Stevens)

He has not seen in his work any reports of anyone becoming positive by being sexually active with someone who is undetectable. “There are still a lot of ignorant assumptions,” he says, “and ‘U = U’ helps to normalize the conversation about getting tested.”

Myers stresses the importance of normalizing HIV just as any other health concerns, like cancer or heart disease. When asked whether condoms and PrEP should both be used in monogamous relationships where one individual is undetectable and the other is HIV-negative, Myers says that people should use whatever resources they are comfortable with.

“Each couple is unique,” he says, “and each couple has to find what works best for them.”

Michael Conti-Ferner, a St. Petersburg resident, has been with his HIV-negative husband since April 2019. He is HIV-positive and is at the “U = U” stage. The couple partakes in unprotected sex.

“I’m not really concerned,” says Conti-Ferner. “I take my pill every day like I’m supposed to.” He also asserts that he and his husband have both been educated on the subject. “It’s not like we stress about it or anything.”

Winheim, however, says that even in the case of couples where one is HIV-positive and the other is negative, condoms and PrEP should be implemented.

“U = U” may mean lower risk, but it does not prevent other sexual diseases. “Syphilis and gonorrhea are rising in some communities,” says Bailey. “Even with PrEP, it doesn’t protect you from everything else.”

Additionally, according to Winheim, “our rates are not showing what ought to be a decline in HIV transmission.” She also points out that the instructions provided with PrEP do in fact state that it should be used with a condom. “To keep the rates down, we actually have to do it, both PrEP and condoms.”

Does turning “Untransmittable = Untransmittable” into a slogan help to lessen the negative emotions and feelings around being HIV-positive? Says Bailey: “Getting to ‘U = U’ is definitely empowering for the individual because it means you’re as healthy as you can possibly be.”

Winheim has a different perspective. She says, “I don’t think so. I think the stigmas are so deep and so ingrained and the slogan ‘U = U’ is not going to just take that away.” However, she adds that the slogan is “good news.”

“I think people feel a sense of normalcy,” she says, “but normal for an HIV-positive person is not normal for the rest of us. Emotionally, I don’t know if it’s enough to take away the stigma of having it.”

In terms of stigma, Bailey finds that there’s way more of it happening in minority communities. “There’s so much stigma, even just your friends potentially seeing you walk into an HIV clinic,” he explains.

Although Metro has been approved to test for HIV in outlying minority communities, Bailey says that it is incredibly difficult to get people to come in to get the tests. Thus the conundrum: how does one become undetectable if one doesn’t even know their status in the first place?

Bailey and his associates at Metro Inclusive Health are doing the best they can do. “We have made it to health ministries in some of the Southside churches and we are trying to make them realize how this is impacting their communities.”

Currently, Metro is seeing an alarming rise of HIV infection in African American women over the age of 50. This could be in part due to men in minority communities desiring to be on the “down low” or not identifying as gay or being out. Burying a part of who they really may be why these men are transmitting HIV to their wives and female sex partners. In these communities, the need to get beyond the stigma is crucial, says Bailey.

(L-R) Metro Inclusive Health COO Priya Rajkumar, CEO Lorraine Langlois and Chief Marketing and Experience Officer Brian Bailey celebrate the organization’s St. Petersburg expansion with Mayor Rick Kriseman and LGBTQ Liaison Jim Nixon Feb. 9. (Photo by Dylan Todd)

“It all starts with education,” Hope & Help’s Myers adds, “and when you have a disease with historical reputation that has been stigmatized, people make assumptions and then they communicate those assumptions to friends and family and things get out of hand.” He says that as a result, those who live with HIV face discrimination that can be very “in your face.”

“We encourage everyone to start with an education on HIV,” says Myers.

Seven years ago Orlando native and former drag performer “Chrysanthemum,” whose real name is Glenn Pace, discovered he was HIV-positive.

“I got it late in life,” Pace says. “I’m 47 now, I got it when I was 40. At first I was really hard on myself, for about the first six months. I thought, ‘I’m an educated man, this was a foolish decision to engage in activities that could possibly lead to this outcome.’” Pace says that with the help of therapy he has come to understand that he does not need to have a sense of “punishment” around what happened.

Pace says, “I remember when I came out to my father and he said, ‘Do NOT get AIDS.’” That message from his parent played over and over in his head after his diagnosis.

“I felt like I had let my Dad down, even after his death,” he explains. “But through therapy – and community – I have learned to accept it; this is my truth.”

Pace is undetectable and has been since his first extensive drug trial following his diagnosis. “I jumped into treatment right away,” he says. Now he gets checked up every three months. He is undetectable each time.

In his online profile for another major dating app, Pace discloses his HIV status. “I don’t want to hide it from anybody,” he says. “I think it’s honest, respectful and the human decent thing to do.”

With regards to other HIV-positive individuals and whether they ought to follow in line with Pace’s decision to disclose online, Pace says, “If they are sexually active, then they should disclose their status before engaging in sex but it’s still everyone’s individual decision whether they want to announce it on the apps or not. I know a lot of people believe differently.”

Pace also feels, as Myers does, that condom and PrEP use with someone who is “U = U” is a decision to be made between the people about to engage in sex with one another. “Everyone needs to decide for themselves,” says Pace, “but for me discussing it with the partners I’m having sex with is key. It’s all about communicating with the partner that you’re with.”

Pace adds that he has received offers online from younger men who wish to be infected by him. “They look at it like this is something they are going to get anyway,” Pace says, “so they may as well get it over and done with now.”

He always does his best to explain to these younger men that infection is not the answer. “I write each of them a long diatribe,” he says. “I say to them, ‘do you realize what you’re asking for? At your age, do you know what you are putting your body through?! This is not something you want to ask for.’”

Pace allows for the fact that these younger men have no idea what it was like when AIDS was ravaging the bodies of his friends and acquaintances, sentencing them to death. “It’s like my mother who lived through World War Two,” he says. “I can’t imagine what it was like to live through that, it’s like the young men today can’t imagine what it was like to live through the AIDS epidemic.”

Thomas, meanwhile, remains concerned about his actions that Thursday night. “I just wish he would have told me he was ‘U = U’ beforehand,” he says. “But at the same time, I know it’s my job to have asked him first, ‘Hey, what’s your HIV status?’ … I was so caught up in the moment. What I want to do now is trust that he was telling the truth and that ‘U = U’ is real.”

When it comes to any person’s assumption that he or she may be “U = U,” Bailey says, “Don’t assume anything. The only person who can tell you if you’re undetectable is your doctor.”

Know your status. For more information about EPIC, visit MyEpic.org; about Metro Inclusive Health, MetroTampaBay.org and about Hope & Help, HopeAndHelp.org.

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