‘It’s my superpower now’: Utahns living with HIV working to tear down stigma around disease

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SALT LAKE CITY (ABC4) – When Sequan Kolibas received her HIV diagnosis eight years ago, the mother of one kept it to herself for years, largely afraid of how others would react to her news.

Those fears were confirmed when she let her secret slip one day while talking to a friend.

“We were just talking about HIV and, and I kind of had a meltdown and told him that I had it and he was like, ‘Well, only whores and junkies get HIV. So, which one are you?’”

Kolibas’ dread of the stigma around the disease had proven to be warranted. It had been her biggest concern when she learned she had contracted the virus from her partner of five years, a male.

“It was extremely scary, it was life-altering,” she recalls. “To be honest. I had periods of suicidal ideations, severe depression. I just basically thought my happiness, and my life were over. I let HIV become who I was, instead of a part of who I was. I let my diagnosis define me.”

Wednesday, Dec. 1, will be celebrated as World AIDS Day, in remembrance of those who have lost their lives to Acquired Immunodeficiency Syndrome, which is brought on initially by an HIV diagnosis. The 2021 occasion is especially poignant as it marks 40 years since the Center for Disease Control and Prevention (CDC) first reported the emergence of AIDS among gay communities in New York and California.

Initially dubbed “gay cancer,” the HIV and AIDS epidemic was ravaged by misinformation, misunderstandings, and naturally, stigma towards those who contract the virus. Researchers eventually narrowed down its primary means of transmission to sharing syringes or injection equipment, exposure to blood in open wounds, and sexual intercourse. The shocking announcement of NBA star Magic Johnson’s infection in 1991 made progress in showing HIV could affect folks of any sexual orientation – homosexual or heterosexual – but many of the stigmas have still been hard to shake.

“I think that still lingers from the ‘80s,” Heather Bush, who manages the HIV program for the Utah Department of Health (UDOH) explains to ABC4.com. “On top of dealing with a life-threatening disease, and all that means with that, then those with HIV are worried about what people will think or how it gets paid for. It’s just a huge extra burden for people to have to face. And I think a lot of it is perception.”

The truth is living with HIV in 2021 is very different than it was in 1981, as testimonials and information from a new campaign by UDOH, HIVandMe.com, shows. While the disease is still very much a part of life; the website states that every three days a new Utah resident is diagnosed with HIV, it’s not a death sentence anymore.

Advancements in prevention and treatment have made transmission virtually impossible for those who have the disease and are taking the proper measures, which can be as simple as a daily pill for antiretroviral therapy (ART) and additional precautions for those who are sexually active. The new term in HIV medicine is “U=U.” The ART medication can reduce the amount of HIV in the bloodstream to undetectable levels. If it’s undetectable, it’s untransmittable to others.

“We know it’s still there, we know they still have the virus, but it’s so low that not only does it protect them and keep them from getting sick, but it also makes it so they can’t transmit it to other people,” Bush states, adding that those who have a partner with HIV and aren’t infected can also take preventative medication as well. “There are a lot of tools that we have that we didn’t have even 5-10 years ago.”

The biggest obstacle that remains is the stigma, both Bush and Kolibas agree. While medical advancements have provided the means to make the spread of HIV and AIDS much more difficult if the proper precautions are taken, opening up the dialogue is still a work in progress.

Kolibas has since found a sense of purpose by sharing her story and founding a nonprofit that provides resources for the infected and information for those who have outdated fears and misunderstandings about HIV and AIDS.

“You don’t have to change who you are, it doesn’t define who you are,” she says, mentioning that her T-cell count, or the number of disease-fighting blood cells, is greater than before her diagnosis. “We’re opening the conversation to educate people so that we can reduce that stigma for people.”

For years, many may have thought that even routine, non-sexual, or non-blood-related contact with a person living with HIV could be dangerous. Kolibas’ mission now is to shatter those misconceptions.

“It’s the false perception of, ‘Well, it’s only a gay disease,’ or if somebody has it, you can’t share the same utensils, you can’t hug them, you can’t drink from the same cup as them. It’s just on education now. I’m kind of using HIV as my superpower now.”

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