Central Missouri sees dramatic increase in HIV diagnoses

The walls and shelves of Derek Landes’ office showcase the colorful oddities of safe sex. Shadow boxes of his favorite condoms adorn the walls; one wrapper says, “Looking for love in Alderaan places,” a reference to a planet in “Star Wars.” A painting of a vagina hangs above his couch.

Landes is in his mid-20s. He has a kind face, an orange beard and sports hipsterish horn-rimmed glasses. He’s also the director of prevention education and outreach health services at Spectrum Health Care in Columbia and not afraid to talk — with great gusto — about sex. He laughs easily and, when referring to the landscape of sexually transmitted diseases in mid-Missouri, says things like, “It’s the Wild West out here.”

His levity serves as a foil to the growing menace he and his team are trying to address: an uptick in HIV diagnoses statewide, concentrated in central Missouri. Even the lively exhibit in Landes’ office is intentional — to connect with a generation too young to remember the devastation of the AIDS epidemic in the 1980s, a generation dangerously misinformed about the threat that continues to afflict millions worldwide.

“We have a mid- to late-’90s or early-2000s understanding of HIV,” Landes said. “The reality of HIV has changed.”

Human Immunodeficiency Virus, or HIV, weakens the body’s immune system by destroying white blood cells that fight infection. The most aggressive stage of HIV is Stage 3, also known as Acquired Immunodeficiency Syndrome. After the immune system is crippled, the body is vulnerable to a host of infections: purple, cancerous lesions (Kaposi’s sarcoma); lung, mouth and fingernail fungus; bowel and brain disease formerly only seen in cats and sheep.

When people contracted HIV in the 1980s, it was often a death sentence.

While HIV is no longer untreatable, the threat continues nationwide — disproportionately among certain groups. Men who have sex with men continue to be the most vulnerable, with 1 in 6 likely to contract HIV in their lifetime. Depending on race, the risk can be higher. According to the CDC, about 1 in 11 white men who have sex with men will contract HIV in their lifetime. For Latino men who have sex with men, that number is 1 in 4. And for black men who have sex with men, that number is 1 in 2.

Regardless of race, local diagnoses are on the rise.

Between 2013 and 2016, the most recent data available, new HIV diagnoses in Missouri increased more than 10 percent. In the nearly 40 counties the state considers part of the Central HIV Care Region — including Boone — the uptick is much steeper: During that same time period, new HIV diagnoses increased almost 170 percent.

Almost all of those cases, Landes said, occurred via sexual transmission. The vast majority are men who have sex with men. Hence, Landes’ office decor. It’s a serious thing, and he’s serious about it: getting more men to wear condoms every time they have sex.

‘The real enemy was homophobia’

The rapid spread of HIV in the 1980s was born partly out of misunderstanding and partly out of social discrimination toward the gay community, as journalist Randy Shilts documented in the international bestseller “And the Band Played On.”

Although it was proved early in the epidemic that the virus affected people of all backgrounds and sexual preferences, the taboo against homosexuality was difficult to overcome.

Media outlets in mid-Missouri were no exception. A review of local newspaper clippings from the late ’80s shows panic and misinformation spread like wildfire.

A Columbia Daily Tribune article published in 1988 defines AIDS as “a fatal disease spread primarily by homosexual activity or the sharing of needles among IV drug abusers.” Beauty schools required applicants to take HIV tests, mistakenly afraid that the virus could pass from one person to another through simple skin contact. In 1988, the Missouri legislature passed a law that made knowingly exposing another person to HIV without his knowledge or consent a felony. That law, which lists biting as a way to transmit HIV, is still in effect.

Dean Andersen, an outreach coordinator at MU’s Telehealth Network, turned 59 last month and remembers the early days of the AIDS epidemic. He was living in Columbia in the ’80s. He lost between 20 and 25 friends to AIDS — and what felt like a whole generation of his gay peers.

Andersen is someone who documents. As each friend passed, he’d write the person’s name on a growing list he kept in his calendar.

“I used to tell myself, I’m never going to forget their names,” Andersen said.

To illuminate the consequences of AIDS, he and his peers raised thousands of dollars to bring a section of the AIDS Memorial Quilt to Columbia. The section, stitched with the names of local people who died from AIDS, was big enough to cover the entire floor of MU’s Hearnes Center.

Then, as a master’s student at MU, Andersen wrote his thesis on the school’s LGBTQ history.

“I thought, this is going to be lost if someone doesn’t capture it,” Andersen said.

Back then, as he was documenting and advocating, he thought AIDS was the enemy. “But then I had friends who contracted AIDS who knew about safe sex, and I began to realize that the real enemy was homophobia,” Andersen said.

He explains it like this: After members of the gay community had been socially and sexually repressed for so long, they started coming “out” in the ’70s and ’80s, “reveling in their newfound sexual freedom.”

“There was this sense of liberation, and it was kind of like taking a kid who’s never had candy and putting him in a candy store — he wants a little bit of all the candy,” Andersen said. “But then AIDS hit, and all of a sudden, the door on this freedom is slammed shut.”

The effect on the psyche, Andersen said, was an amalgam of emotion: the feeling of freedom — briefly tasted — taken away, awareness that society blames you for an epidemic, fear hanging over relationships like a shadow. The climate of fear and misunderstanding led to an even greater need for relationship.

“Many people, often emotionally wounded because of rejection from their family, their church, their peers, whomever, are starved for a sense of validation and affection,” Andersen said. “And so even if there’s risk involved, they will take it, because they are starved for what we all need: that sense of belonging and validation of connecting with somebody in a way that’s really real.”

The reasons for the increase in HIV diagnoses, Landes said, are equally complicated and still, though his team’s working to defeat it, shrouded in stigma.

“Very few are willing to be open about (their HIV diagnosis), especially in the younger population,” Landes wrote in an email. “When working with our clients, anonymity is probably the biggest concern behind access to treatment.”

Correlation, not causation

There’s no easy explanation for the increase in HIV diagnoses in mid-Missouri, although there are educated analyses and some strong clues.

According to a pamphlet on STD prevention in Spectrum’s office, people contract HIV and other STDs in the same way: through vaginal, anal or oral sex.

“Most of the time someone is infected with an STD, the likelihood of getting HIV is high,” said Clara Umbe, HIV health educator at the Columbia/Boone County Department of Public Health and Human Services.

Since 2013, STD reports have increased nationwide and in Boone County.

“Trends tend to be HIV follows a spike in syphilis,” Landes said.

In 2013, there were two syphilis cases reported in Boone County. In 2016, there were 10, and by October of this year, there were 27.

For HIV and STDs like syphilis, some of the risk behaviors are the same: having sex without a condom, with multiple — especially anonymous — partners, or while using drugs or alcohol, which can lead to riskier behavior, according to the U.S. Department of Health and Human Services.

A trend that’s more difficult to pinpoint, Landes said, is a growing sense among the younger generations that HIV is simply not something they have to worry about anymore.

“In certain groups, there’s an idea that HIV is concluded,” Landes said.

If HIV is concluded, there’s nothing to be afraid of. If HIV is concluded, there’s nothing to protect against.

“When it becomes less of a threat, people care less,” Landes said. “They tend to take riskier behavior.”

Even treatable, HIV is still bad news

HIV no longer has to be a death sentence. Landes said modern medicine has the virus “backed into a corner.”

“We can’t cure it, but we can fight back,” he said. “With the right dosage of the right medicine over the right period of time, we’ll keep that virus so low that it’s a chronic issue.”

What people may not realize, though, is that an HIV diagnosis is still a life sentence of doctors’ appointments, lab work, powerful drugs, dealing with insurance, liver tests and plenty of “poking and prodding,” Landes said.

HIV treatments can cause both short- and long-term side effects, ranging from flu-like symptoms to depression, heart disease, kidney failure and diabetes. The longer people live with HIV, the more likely they are to develop serious health complications, according to the federal website on HIV.

Not only that, but chronic care costs money. Several agencies within the federal government provide yearly grant support for the study, prevention and treatment of HIV/AIDS, but with budget cuts at the national and state level, continued funding is never guaranteed.

“As funding disappears, it becomes harder and harder to have agencies like us get the most vulnerable populations the help that they need,” Landes said.

Another fear, though it’s not currently a widespread problem, is the emergence of drug-resistant HIV strains. Research has documented this problem on multiple continents.

“If we start seeing that, we’re back to Stage 1,” Landes said.

Socially, an HIV diagnosis can be difficult for family members or a new romantic partner.

“While treatment is wonderful, it is still difficult to disclose a positive status,” Umbe, with the health department, wrote in an email.

No diggity, got to ‘Bag It Up’

When Umbe talks about HIV prevention, she doesn’t talk about sexual orientation. She talks about position.

“Anal sex is the riskiest way to get infected with HIV,” Umbe said. “Because the rectum can tear easily, so that is why.”

This discussion is a part of the local health department’s education and prevention strategies. Since Umbe became an HIV health educator in August, her work has boiled down to two tasks: testing and education.

Umbe and her colleague, fellow HIV health educator Tracey Bathe, visit local substance abuse centers, shelters, corrections departments, high schools and college campuses for presentations and/or STD testing. Umbe’s main talking point is that HIV is not a death sentence — but like other STDs, it might not be initially symptomatic. Testing is the only way to know if you’re positive.

“I just want people to take care of themselves and be healthy. That’s my job,” Umbe said. “I feel like it’s my duty to just go out there and teach people and educate people about these diseases that can be prevented.”

Landes and his team do similar work at Spectrum — with a twist. In addition to education and testing, one of Landes’ plans to thwart the spread of HIV and other STDs is simple: Put bags of condoms on counters in coffee shops, clothing stores and tattoo parlors and see if people take them.

The bags are your standard middle school variety, albeit purple and sealed with provocative stickers befitting their themes. The “Star Wars” bag, stuffed with glow-in-the-dark condoms and lube, warns that “a Jedi never goes in unarmed.” For health-conscious consumers, another bag sports a nutrition label for semen.

So far, the results are encouraging. Since fall 2017, when Landes initiated the “Bag It Up” program, he’s developed more than 30 types of bags and, just this year, delivered more than 32,000 condoms to the community. The payoff has been huge: Self-reported condom usage among Spectrum’s clientele, which is 90 percent patients under 30, has increased from 19 percent to 26 percent in just one year.

For health educators and advocates, that 7 percent jump is great news. Outside of abstinence, wearing condoms is the best way to prevent the transmission of HIV during sex.

Landes’ creativity extends far beyond condoms. His other outreach methods include a bar-friendly version of corn hole, with a very colorful name, in which players toss a prosthetic penis onto a board painted to look like a man’s jean-clad buttocks; and Cafe de la Lube, a pop-up food stand at which participants can mix, match and taste-test their favorite flavored condom-and-lube combinations. Spectrum also plans to launch a spring 2019 fundraiser selling men’s underwear — painted by local artists — to raise money for Spectrum’s HIV-related services.

Efforts of local health organizations might just work. Although 2018’s numbers aren’t finalized, Landes said it looks like this year, local HIV diagnoses might plateau.

Even so, amid the joking and merriment and optimism, the specter of HIV looms. For Landes, Andersen and Umbe — and the health organizations they serve — that’s no laughing matter.

“You still have a chronic illness,” Landes said. “No matter what, you don’t want a chronic illness that’s going to affect your life negatively forever.”

Supervising editor is Katherine Reed.