Meet Trans HIV Advocate Lailani Muniz

by Kilian Melloy

EDGE Staff Reporter

Wednesday December 1, 2021
Originally published on November 19, 2021

Lailani Muniz
Lailani Muniz  

Trans and HIV activist Lailani Muniz has always been an advocate, championing the interests of transgender parents, seeking to narrow disparities in medical care, and taking her message to state and federal lawmakers.

The reason for her life of advocacy?

"I'm a trans woman," Muniz tells EDGE. "I started advocating as young as I can remember, because nobody was going to advocate for me."

Her own family provided both impetus and role models.

"In the sixth grade I was told that my little brother could not attend my elementary school graduation because of his age, and because he was in a wheelchair and they did not have adequate space for him," Muniz recalls. That didn't sit well with her, so she pursued the matter and involved her mother in the fight. Her mother, Muniz recalls, "wrote the local political" people who could do something about the situation, "and lo and behold, my little brother was at my elementary school graduation!"

More recently, Muniz's work has been around HIV education and prevention. She is, as her bio notes, "A secretary & full voting member on the HIV Planning Board for the State of NY," and she "serves as a spokesmodel for Amida Care and the 'HIV Stops With Me' campaign."

As her initial remarks suggest, her work stems directly from her own life. "Lailani is also a wife, mother, daughter, granddaughter, and an HIV positive trans woman living in her unapologetic truth," her bio adds.

A native New Yorker, Muniz noted that literacy levels around HIV are relatively high in the city, but in other regions of the state, and the country, that's not always the case.

"I do see it as you go further out into, like, let's say like, down South, it's a lot different," Muniz notes. "In certain areas, people still feel like HIV and AIDS is a death sentence, not knowing you can live a long, prosperous life with HIV."

Lailani Muniz
Lailani Muniz  (Source: Provided)

Her educational work extends into the medical profession. "When you first see a provider, they take down all of this information, and, in my experience, most of the time it is scanned in, put in the chart, and it's never referred back to," Muniz explains. "Part of my education when I'm speaking to medical professionals is, 'Hey, you take this information down. I need you to read it. I understand you have an abundance of a case load, but by the same token it takes sixty seconds, maybe two minutes, to read through some basic information on my chart so you're not asking me the same question again and again.'"

Muniz relates how a lack of understanding on the part of medical professionals extends to basics. She and her husband are a serodiscordant couple; Muniz follows a treatment regimen that suppresses her viral load; her husband, meanwhile, takes PrEP. They've faced confusion around the subjects of HIV status and treatment.

"Going into the pharmacy and having a pharmacist technician look at my husband and say, 'Oh, I'm sorry, we don't have your HIV medication,'" Muniz cites as one example. "And my husband's like, 'I'm not HIV positive. That's not an HIV medication. That used to be an HIV medication, but now it's used to keep people negative.'"

On another occasion, speaking to a physician in the Bronx, Muniz recalled, "I told him, 'Do you educate your patients about PrEP?' and he said to me, 'That's only for gay people.'"

"Doing this for so long already, I find it funny," Muniz adds. "It's hilarious to see the ignorance of individuals." But by the same token, the constant battle against ignorance and misinformation leaves her feeling, sometimes, that she's on the verge of burnout. As terrible as the COVID pandemic has been, she says, it's at least offered her a respite from a pre-pandemic travel schedule that saw her on the road as much as two weeks out of every month.

Asked what she most wanted people to understand, Muniz pointed out that "Just because individuals of trans experience are becoming more visible, that doesn't mean that we never existed. We always sat at tables with others — we just chose not to let our personal information take over the conversation. But at some point we had to let people know, 'Hey, listen: We're trying to make a difference for a demographic that I just happen to be part of.'"

Another key point: "There's no cookie-cutter mold on what an advocate looks like," Muniz declares. "Most people don't realize that they're advocates."

And the rewards, while sometimes tangible, are often deeply sustaining in a spiritual sense. "Sometimes," Muniz adds, "we forget as individuals that doing a good deed and a good act and bringing visibility is food for the soul."
