Take Notes From TikTok's HIV+ Community

Take Notes From TikTok's HIV+ Community

by Carina Imbornone

"Today's word of the day is nescience. It's a noun meaning lack of knowledge or understanding, ignorance," posted Josh Odam on his TikTok account, @healingwhileblk. "Used in a sentence: not only did DaBaby reveal himself to be a raging homophobe, he also revealed his nescience around sexual health, HIV awareness, and transmission."

During the aftermath of DaBaby's homophobic, sexist and scientifically inaccurate HIV rant at Rolling Loud, the rapper was dropped from his slot on the Lollapalooza and Governor's Ball lineups, criticized by "Levitating" song partner Dua Lipa and taken to task in an open letter circulated by 11 national HIV/ AIDS and LGBTQ organizations. To make matters worse, DaBaby continued his streak of ignorance by posting a passable social media apology and then promptly deleting it.

Bay Area learning specialist Desmond Fambrini (@desmondfambrini) stitched to DaBaby's content in a TikTok, saying: "I'm not going to cancel him, but I'm certainly not going to watch his content."


Titktok muted my last vid because I shared a clip of his ignorant comments. But these are my thoughts on the #dababy situation. #stigma #hiv #lgbtq

♬ original sound - Jamar Rogers

Following the circulation of the open letter in August, however, nine HIV organizations met with DaBaby; in a joint statement, they commented that "DaBaby was genuinely engaged, apologized for the inaccurate and hurtful comments he made about people living with HIV, and received our personal stories and the truth about HIV and its impact on Black and LGBTQ communities with deep respect."

Though DaBaby sparked a conversation that began months ago, HIV-positive content creators on TikTok continue using the platform to spread awareness about contracting and/ or living with the virus, recognizing the rapper's baseless claims indicate much of the population's gross misunderstanding.

Jamar Rodgers (@jamarrogers), a gay man and former American Idol contestant from Los Angeles who is living with HIV, finds it frustrating that the burden of educating those like DaBaby falls on the people who experience life with HIV firsthand. "I shouldn't have to go and sit DaBaby down and tell him that I've been undetectable for many years and undetectable means untransmittable," Rodgers remarks in his video. "I will not be dying in two to three weeks like he said I would."

The experiences of those who live with HIV are, of course, different — but with proper medical care, the virus can be controlled. Doreen Moraa Moracha's TikTok bio reads, "I'm HIV +ve. I'm not sick. I'm not dying. I'm just a fabulous host to a tiny guest." Proclaiming herself the "undetectable queen," Moracha's account, (@deemoraa01) spreads awareness with humor and shares the status of being born with HIV, as some 6,000 to 7,000 newborn American children are every year and 37.7 million people worldwide. "I am not HIV. I am living with HIV," she posts. Unlike some other STDs, HIV can be transmitted in utero from mother to child, as well as contracted via sexual contact and intravenous drug use.

AZT, otherwise known as Zidovudine, was the first medication to be FDA-approved for HIV. Since FDA approval in 1987, several medical treatments have been discovered — like Abacavir, Didanosine and Tenofovir — that make contracting the HIV virus from an infected partner virtually impossible. "HIV advocate" Phil Hemsley (@philhemsleyjones) jumped on the viral "Questions I Get Asked" trend to explain how rather than a cure, medication means that you are undetectable and therefore untransmissible.

Prevention, however, is also possible, as Lexi Gibson (@beautythroughmyeyes) explains. If you have had sex without a condom, PEP can be taken within 72 hours to greatly reduce the risk of contracting the virus. PEP is not to be confused with PrEP, which is taken as a preventative measure to block users from medical consequences of being exposed to the HIV virus during sex or drug use.

And while DaBaby's homophobic rant suggested HIV risk exists only among gay men, mother Megan Moulton (@smeggs82) lip synced to Halsey's "You Should Be Sad" to showcase her own story. "Almost 13 years ago I had a one night stand while on vacation, She begins, explaining how she became very sick and later learned that her sexual partner had not disclosed his transmissible HIV status. "No you're not half the man you think that you are," she lip syncs while smiling. As she highlights on TikTok, HIV positive status affects all backgrounds of race, class, sexual orientation and gender.

"How did I become HIV positive?" Asks self-love coach Alana Beau (@cozshecandoit). Even in a relationship, it is possible to contract the virus with an unfaithful partner, she shares. Promoting frequent testing, she also comments, "HIV does not affect a person's life... the stigma comes from negative attitudes towards [sex] and homosexuality." Of the 1.2 Americans currently living with HIV, about 13% are unaware of their health status and require testing. Combating negative stereotypes, TikTok influencers like Beau have been promoting testing as a necessary means to not only protect yourself, but others.

The stigma, however, is strong — and fueled by commentary like DaBaby's, TikTok user Nupurasa (@nupurasa) thought that her world was over when, three days after their eighteenth birthday, a sexual health nurse diagnosed her with HIV. Young, alone and closeted, worried that the diagnosis would hurt a future partner. Later hearing the nurse had given a false positive report, Nupurasa felt relieved at the update, as she explains in her video.

Anxiety around HIV, even for those with the virus under control, is an understandable state, especially given the social context around contracting HIV and the medical expense of living with the condition. While healthcare efforts in the US make a healthy life accessible to those with HIV, 15,815 Americans still died from AIDS in 2019. Lack of access to healthcare — both testing and medical treatment — accounts for a significant roadblock to lowering this death count.

Jennifer Vaughan, known as @vongirl24 on TikTok, got HIV/ AIDS from a past partner. With an AIDS diagnosis, she took antibiotics and antiretroviral therapy, which reduced her AIDS diagnosis to an HIV diagnosis, and later turned into an HIV undetectable status. Unlike in the days of ACT UP, AIDS, when properly treated, can be effectively managed. Meanwhile, with such great drug therapy/ prevention advances, many have been hopeful that an AIDS vaccine could be in sight.

With vaccination proliferation, one day, the risk posed by HIV might cease to exist. STI, PrEP and HIV doctor Russ Johnson, MD (@askrussmd) posted about Moderna's HIV vaccine set to start human trials shortly. With two vaccine candidates, the phase one clinical trial of the mRNA vaccine will test both safety and efficacy. While HIV varies worldwide, making finding a specific target for the vaccine difficult, this vaccine hopes to sidestep these issues with scientific advancement. Although PrEP medications are still most effective for those at-risk says Dr. Johnson, this vaccine trial might prove to be a landmark first step towards lasting HIV immunity worldwide.

These valiant efforts to raise awareness and spread medical knowledge to end AIDS are the legacy of the work that activists in America started in the late eighties — the direct result of years of protesting, agitation and awareness building to call upon institutional powers to take AIDS research and prevention seriously. In the short 40 years since, the torch is now being carried by content creators online, showing just how far we've come; the future of ending this disease is closer and closer on the horizon.

Photos via TikTok