The 24th International AIDS Conference took place over the last weekend of July in Montreal. Scientists, policymakers, and activists reunited for this global platform to advance the HIV response.
During the international panel of youth activism and leadership, Colombian visual artist and lawyer Juan de la Mar used their mic time to express how essential it is to advocate for the sexual rights of people living with HIV.
“Campaigns are very focused on prevention, like distributing condoms to try to stop the AIDS pandemic, but it is as if us young people living with HIV do not have sex or the right to access pleasure,” de la Mar said.
They noted that, regarding the virus, topics like desire, sexuality, or pleasure should not be that unusual, especially in big and specific conferences like that one.
“There are countries where young people with HIV are not taught that undetectable is equal to untransmittable, so they stop exercising their right to sexuality a lot, which exposes them to other STIs and STDs. And that ends up collapsing their mental health and expectation of having a future, a job, or participating in activism,” de la Mar explained.
To get to the level of pride and confidence to discuss their status in public interventions as the political advocacy coordinator for the Young Positive Latin American and Hispanic Caribbean Network, Juan de la Mar had to die first—a “long death,” as they describe it, which started when they first got their diagnosis on May 17, 2017. Terms like “infectologist,” “adherence,” “copy count,” and “undetectable” were just so confusing, they couldn’t help but cry all the time, afraid to discuss what they were going through with friends or family.
“I couldn’t process anything. I just thought I was going to die. I felt like a gray cloud hung over my head,” they told Latino Rebels.
That sort of death, where everything was so emotionally exhausting, kept happening even when they were already being treated. With an antiretroviral therapy of three pills taken daily, HIV would become undetectable, which means the amount of virus in the blood is so little, it wouldn’t even show up in a test.
Although this was good news, their doctor hit them with a poorly worded recommendation of using a lot of moisturizing cream: “People like you get their skin all dry and gray,” the physician said from his office in an upper-class neighborhood in Bogotá.
“That comment destroyed me,” said de la Mar. “I sat all afternoon on a park bench to cry. Then I started looking at myself in the mirror all the time. I was afraid that I was actually going to turn gray, that it would show, that everyone would notice just by looking at me.”
That was not the only time the medical staff provided by the Colombian health insurance system was poorly prepared to support de la Mar’s emotional stability and give them enough accurate information to decide how best to achieve a long life. By 2019, months into the treatment and already undetectable, none of their physicians had explained that remaining undetectable through treatment also means the virus becomes untransmittable through sex.
De la Mar spent a lot of time thinking they were not going to be able to love again or have a partner, feeling their life was going to be “wrapped in latex” for good.
“Being HIV undetectable is as if the virus is asleep, encapsulated in your blood without replicating. So doctors mind the test results, they make sure the viral load is low, but they don’t mind your mental health or your human right to enjoy a sex life,” they explained.
“Undetectable = untransmittable” is the result of a study published by UN AIDS in 2018, with a recommendation to all program managers that they raise awareness and promote the information.
“For many people living with HIV, the news that they can no longer transmit HIV sexually is life-changing,” UN AIDS wrote in an explainer four years ago. “In addition to being able to choose to have sex without a condom, many people living with HIV who are virally suppressed feel liberated from the stigma associated with living with the virus. The awareness that they can no longer transmit HIV sexually can provide people living with HIV with a strong sense of being agents of prevention in their approach to new or existing relationships.”
About why doctors in Colombia wouldn’t provide this information, de la Mar says: “My doctor in Bogotá told me that they prefer not to explain ‘undetectable equals untransmittable,’ because they think people would get too relaxed and would care less about their health. In Colombia, people living with HIV under treatment are undetectable, but live as if they weren’t.”
‘From Gray to PositHIVe’
An article found on Facebook was the kickstart for de la Mar to find a proper support network. The piece, titled “People Living With HIV Have Right to Have Sex,” encouraged them to link with activists outside Colombia advocating for the rights of people living with HIV.
“The gray cloud started to vanish,” de la Mar said.
In fall 2019, they got into a visual arts school and embarked on the writing and filming of a documentary, From Gray to positHIVe. The title is, of course, a nod to the reckless doctor. The film portrays, in a metaphorical way, de la Mar’s death and rebirth from a placenta of latex to be painted in living colors by their friends and family and finding in activism the healing and bravery needed to embrace HIV as a new life purpose.
“When I started researching for the movie, I found out that there was a silence in Colombia around HIV. It was hard to find references. That’s why the ‘80s narratives that portray homosexual men as sinful and worthy of punishment still prevail. If I would have had all the information I have now, I would have saved myself a year of depression,” de la Mar said.
The documentary had a screening in New York last May at the Lesbian, Gay, Bisexual & Transgender Community Center in Manhattan. During the Q&A after the screening, de la Mar highlighted the importance of having spaces to talk about HIV beyond just World AIDS Day on December 1, to guarantee that people have access to information sooner, feel less alone, and have enough tools to make informed decisions that imply agency over their bodies.
The film is now available for streaming on demand at the platform Mowies.
A New Life in New York
Last year, New York meant two big moves for Juan de la Mar: marrying their partner in a small ceremony at Prospect Park and making NYC their new home. De la Mar first moved to Bogotá from their “small and conservative” hometown Manizales. The Colombian capital gave them a route as a filmmaker and activist —but it is also the place where a team of healthcare providers stopped assisting Andrea, a trans sex worker living with HIV who died last year as she lay on a sidewalk in barrio Santa Fé. Providers came in an ambulance to help her because she presumably had COVID-19 but refused to continue assisting her when they learned of her HIV status
“They didn’t help her because of HIV. Ignorance, prejudice, stigma is what kills,” de la Mar stressed.
In New York, Juan de la Mar is also having access to the most updated antiretroviral therapy to remain undetectable: a single tablet instead of the daily three pills combination they were getting in Colombia.
“My doctor here was surprised that the three-tablet treatment is still administered in Colombia and recommended that I switch right away,” the recalled. “With the single pill I sleep much better, no nightmares, no heartburn, I feel more energetic.”
In New York, Latinos are one of the communities reporting the most cases of new HIV infections. Of the 1,396 new cases in 2020, 34 percent were Latino.
Juan de la Mar wants to join activist groups in New York that advocate for the rights of Latinos and immigrants living with HIV. For now, the next stop in their activism journey is Buenos Aires, to participate in the regional assembly organized by Jóvenes Positivos LAC. The main theme to discuss during the three days of programming beginning August 13 will be #CURAYA (cure now).
“We will reunite to discuss how to make caring for people with HIV, especially the young people in Latin America and the Hispanic Caribbean, a priority for the governments, just as COVID has been, with the whole world organized to counter it,” they said. “It’s been 40 years since the AIDS pandemic began and there is still no cure. Progress is very slow.”
Juan de Dios Sánchez Jurado is a summer correspondent for Futuro Media. A writer, lawyer, and journalist from Colombia, he is currently studying at the Craig Newmark Graduate School of Journalism at the City University of New York. Twitter: @diosexmaquina