The Silent Realm: How Hope on TTaPP Speaks Through Stigma

Sequan Kolibas got the call from a treatment center in the morning. A HIV+ resident, diagnosed a month earlier, was struggling to stay afloat beneath the weight of shame. 

“It’s a life changing experience,” Kolibas says. “You want to hear it from someone who’s been there.” 

Kolibas had: 12 years ago, her own life changed when the Utah Health Department informed her of her HIV-positive diagnosis. She was left to navigate appointments, medications, providers and most overwhelming of all, decades of isolating stigma — alone.  There’s a key difference between Kolibas’ story and this woman’s: this time around, Hope on TTaPP, the nonprofit Kolibas founded, is here to stand beside her. 

“It’s difficult, so to be able to be by their side as like almost their guardian … it’s very rewarding.”

“Just being able to sit with someone — it’s hard because it brings you right back to it,” Kolibas says. “It’s raw emotion. I know exactly where they’re at right now.” Later, the woman was crying for a different reason — she had never thought she’d meet another person with HIV, let alone a woman with HIV such as Kolibas.  

“[A positive diagnosis is] scary and it’s embarrassing,” Kolibas says. “It’s difficult, so to be able to be by their side as like almost their guardian … it’s very rewarding.” 

For the last five years, Hope on TTaPP (Testing, Treatment and Peer-led Prevention) has been providing free direct outreach and case management for those affected by HIV and Hepatitis C diagnoses. At the same time, HOT works to provide prevention education and fight stigmatizing misinformation that act as barriers for those seeking medical care. Most of her clients have backgrounds that include experiencing homelessness, injection drug use, exploitation and incarceration. 

“Being able to be that voice for people who don’t know even really how to speak — there’s a lot of power behind that.”

HOT comes from a deep, protective love for her community. The horror stories she’s experienced and heard from her friends within the medical field inspired her to start HOT. Her goal? Restoring humanity to folks who have historically had it stripped from them, whether due to substance use, incarceration, sexual identity or infection status. 

“We’re not looked at as people who are doing the best they can with what we’ve been given,” Kolibas says. “I’m the voice that they don’t have. Being in our addictions, we don’t know how to raise our voice, so being able to be that voice for people who don’t know even really how to speak — there’s a lot of power behind that.”

HOT follows their clients throughout their treatment journey, staying with them from testing and diagnosis to providing transportation to clinics and physical access to life-saving medications. For Kolibas, her clients become family. 

“If you’re not going to help them with it, why even test them?” Kolibas says. “I stay in contact with them as well. It’s very important to me to make sure that they’re okay.” 

“Being able to talk, laugh, cry and fight together towards something really helps build trust and strengthen that bond”

Steffy Perry McCullough, the second half of HOT who handles outreach for northern Utah, echoes the familial bonds that are created. McCullough’s experiences include surviving childhood sex trafficking, incarceration and substance use. She says her stories of survival allow her to connect with all of her clients at some level. 

“Being able to talk, laugh, cry and fight together towards something really helps build trust and strengthen that bond,” McCullough says. “They know that I am protective of them and I don’t judge because we are family and we are in this together.” 

Kolibas says it’s taken a long time for her to find the providers she works with currently. HOT’s model is informed by Kolibas’s lived experiences. The difference in medical care between drug users and non-users is “disgusting” to her. 

“It takes a lot to engage in our own healthcare because of the mistreatment that we’ve experienced in the medical field,” Kolibas says. “Some never will, and they’ll pass away. We don’t want to be treated less than because we already feel that way — we’re looking for that medical provider to be that safe space.” 

“We get to remind people in those moments of connection that they really truly do matter”

That safe space is hard to find in Utah, largely due to religious prevalence exacerbating stigma, according to Kolibas and McCullough. While HOT provides testing and free linkage to treatment, Perry says the most powerful thing HOT offers goes much deeper. 

“We get to remind people in those moments of connection that they really truly do matter,” McCullough says. “That is what we fight for. When we do this, we see the flicker of hope come back in our people’s eyes, and hope is a very powerful thing.”

The work isn’t easy, but it must be done. For Kolibas, seeing the “gold mine” of lived experiences finally being listened to both within the medical field and outside of it gives her hope. 

“Knowing that there’s always going to be someone out there who was in the same position I was in, knowing that I’m going to find them just so that they don’t feel so alone … if we change one person’s life, our job is done,” Kolibas says.

Connect with HOT, including reaching out to seek services, at hopeonttapp.com and hopeonttapp@gmail.com.

Read more about local leaders in the community:
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