HIV prevention, education improve in Missouri. But stigma still stands
Jody Dorcy has been living with HIV for 20 years.
He said the hardest part about having HIV is the stigma surrounding it. Society thinks he’s “contagious,” “dirty” and “infectious.” But, Dorcy said, people with HIV shouldn’t be treated differently.
“Just not being part of the HIV-negative world, being that person that’s different … it’s a hard pill to swallow, being different from everyone else,” the Kansas City resident said.
Friday is World AIDS Day, an internationally recognized time to raise awareness of HIV among people worldwide, end HIV stigma and remember those who have died from AIDS-related illnesses, according to the United Nations program UNAIDS. Although education on HIV has increased and the stigma associated with it has lessened compared to when the virus spread widely in the 1980s and 1990s, the stigma and misinformation are still there.
HIV stands for human immunodeficiency virus and attacks the body’s immune system. It progresses in three stages, the last stage being when HIV progresses into AIDS and the immune system is badly damaged, according to the Centers for Disease Control and Prevention.
The CDC states that HIV can be passed through anal or vaginal sex or by sharing needles, syringes or other drug injection equipment.
HIV is transmitted only through five bodily fluids — blood, semen, vaginal fluid, rectal fluid and breast milk, said Cody Jenkerson, HIV prevention health program coordinator at the Columbia/Boone County Department of Public Health and Human Services.
“It’s not going to be transmitted through touching somebody,” Jenkerson said. “It’s not going to be transmitted through saliva. It’s not going to be transmitted through sharing a towel with somebody, a toilet seat or a swimming pool.”
Stigma on HIV and misconceptions
Jenkerson said that the stigma around LGBTQ people and HIV is still present.
“HIV has historically been thought of as a ‘gay disease,’ or that it only or primarily affects people in the LGBTQ community, but we know that’s not true,” he said. “We know that HIV can affect anyone who is having sex or is sharing drug equipment.”
He said having comprehensive sexual education in schools is a great way to combat HIV stigma. He also said reliable resources, such as Spectrum Health Care, the Columbia/Boone County Health Department and the CDC or a trusted medical professional, are great ways to look for accurate information.
“When people are educated, know how it’s transmitted and know who can be affected by it, there’s no reason to have stigma,” Jenkerson said. “I think a lot of stigma comes from misinformation.”
Missouri had 502 newly diagnosed HIV cases in 2022, with Boone County having 45 newly diagnosed cases of HIV in 2021 and 2022 combined, according to the Missouri Department of Health and Senior Services.
In 2021, the most commonly reported transmission category among people living with HIV in central Missouri was male to male sexual contact. However, the next two most commonly reported transmission categories were heterosexual contact and injection drug use, according to the department.
It’s assumed that men who have sex with men tend to engage in anal sex more often than heterosexual couples, said Carter Stephenson, health program coordinator at Columbia/Boone County Department of Public Health and Human Services. Sexual behaviors such as anal sex are one of the highest likelihoods of transmission and plays a role in why a disparity is seen in men who have sex with men compared to heterosexual people.
“The rectum has a thinner mucus membrane, which can allow for increased micro tears which increase the likelihood of transmission,” he said.
However, Stephenson emphasized that the likelihood of transmission is about the type of sexual activity people engage in. Heterosexual people might have just as much anal sex as men who have sex with men and can have the same likelihood of transmission.
“(The) likelihood of transmission is about behavior and not whether a person is gay, straight, bisexual or however they identify,” he said.
Living with HIV
Dorcy found out he had HIV at 33 years old. He said he doesn’t know who gave the virus to him but assumes it was through sexual contact.
“It’s a devastating diagnosis, it truly is life-changing, and you’ll never be the same. … Life had changed within the instant for me in a drastic way,” he said.
Dorcy said his friends and family were supportive of him, but his boyfriend of five years left him almost immediately when he told him the news. He was heartbroken.
He also experienced depression and used alcohol as a way to deal with his diagnosis.
“I had a disease (for) life. I was not happy with my life, and it was a coping mechanism,” he said.
Dorcy was treated for HIV at KC Care Health Center in Kansas City and has been on multiple medications through the years, including Biktarvy.
To this day, he said he sometimes experiences achy muscles, fatigue and inflammation from the virus. Despite medication, he also said he gets fearful of getting sick or having COVID-19 because it can “potentially mean death.”
“I’m susceptible to diseases more easily than other people because I have a compromised immune system, so a cold for another person isn’t exactly a cold for (me),” he said.
Dorcy has an undetectable viral load and cannot transmit the virus to others. He wants people to know that “undetectable” means the virus is not transmittable, something that he said many people still don’t know.
“If you are undetectable, you cannot give HIV to anyone, and people do not realize that,” Dorcy said. “We’re not as contagious as sometimes perceived in society.”
Despite having HIV for the rest of his life, he said he is thankful to be alive today, where HIV treatment has advanced and he can live a longer life.
“Every day is a gift because so many people in the past did not have … this option of living with HIV. They died,” he said. “I’m living now, and it’s important that I make the best out of it.”
HIV prevention can be free
Jenkerson, from the city/county health department, said a few preventive measures include PrEP, which stands for pre-exposure prophylaxis. It’s a medication that can be taken by pill once a day or by injection every other month, and it can prevent someone from getting HIV.
PrEP can be taken if someone is HIV-negative and weighs at least 77 pounds. It requires a prescription and is free or low cost for everyone regardless of insurance status.
Residents who have questions about how to get PrEP can contact the Columbia/Boone County Public Health Department. Columbia/Boone County Public Health and Human Services, Spectrum Healthcare and Planned Parenthood provide HIV testing.
Free at-home HIV testing kits are available at Link_zhxgmmfyhttps://www.showmecondoms.org/store, said Jenkerson. He said anyone who is over the age of 17 and is within the 37-county HIV care region is able to order this kit, and it is shipped from Columbia/Boone County Public Health and Human Services.
He also said using condoms or dental dams correctly when having sex is another great option to prevent HIV. He recommends getting tested at least once a year as the bare minimum if someone is sexually active or using drugs.
“These are all great things to use in conjunction with another because these protections work with each other, not against each other,” he said. “It never hurts to use multiple methods of prevention.”
Dorcy said he would have told his younger self to go on PrEP if it had existed before he was diagnosed and recommends people use it.
“It’s insane not to be on PrEP if you’re sexually active today. … You don’t want to be in my shoes, living with HIV,” he said. “It’s life-changing, and not in a good way.”
Jenkerson said that historically the health outcomes of HIV were a lot more severe. He said while there is no cure for HIV right now, the treatment is very effective and safe. After about six months on antiretroviral therapy, undetectable status can be reached, meaning that HIV can’t be spread to other people.
“Somebody living with HIV today who is taking their medication like they should is going to live just as long, just as healthy as anybody living without it, and they’re not going to be able to transmit it to other people,” he said.
Resources in Missouri
Dorcy lives in housing owned by SAVE, Inc., which provides housing and support for those who are socially or medically disadvantaged with HIV/AIDS, mental illness and substance abuse disorders.
“I had no idea this was going to be heaven on earth,” he said of the community. “I’m very happy, and I love the people here. We’re supportive of each other, and we’re like a family. … There’s a certain automatic bond that you have with another person that’s HIV-positive.”
He described his current state as “the happiest he’s ever been.” Meeting other people with the disease has been a silver lining, he said.