Slaying the Dragon
August 26 - September 1, 2019
Science can end new HIV cases in a decade. Ending the stigma is another story.
by Dwain Hebda
Latunja Sockwell moves through an airport crowd, wearing a t-shirt that invites one and all to “Ask me what I slay.” It’s a conversation starter for the Prescott native, that t-shirt, though few people who take her up on her invitation expect to hear what she has to say next.
They are about to meet a person living with HIV who slays misconceptions and ignorance, or at least takes a mighty good swing at it. Sockwell, unlike many infected with HIV, isn’t content to live in the shadow of others’ reprisal or rejection. She’s been refused services by a doctor, heard whispers in her hometown and stared down ignorance. She’s not afraid of what you think, but she wants you to think straight, be informed.
“When I go through airports, people are going. ‘What does that shirt mean?’ That’s my opportunity to open up those conversations,” Sockwell said. “I share my story because when people can put a face with something, it always changes their attitudes and their beliefs about what they thought they knew.
“Sharing my own personal story helps people see the real person, not just what they thought HIV was about.”
Earlier this summer, officials held a presser at the Arkansas Department of Health. What they announced was met with whatever astonishment sounds like. Dr. Robert Redfield, director for the Centers for Disease Control and Prevention (CDC), said on record that new cases of HIV in America would effectively end within a decade. And then he said it again. And again.
“President Trump announced in his State of the Union Address the goals of reduction of new infections by 75 percent in the next five years and 90 percent in the next 10 years,” he said coolly. “We’re going to accomplish it.”
“As someone who has spent my life in this space, one of my hopes and dreams when I became CDC Director was to see the nation use the tools that we have to bring an end to the epidemic. But I will tell you it was always used as an aspirational goal.” He paused.
“I can tell you,” his voice steel-cutting each word, “this is not an aspirational goal.”
To anyone who came of age in the 1980s, the thought of HIV/AIDS being eradicated ever – let alone in our lifetime – was grimly laughable. The cloak of suffering and death the terrifying plague lowered about America’s shoulders in that time was suffocating, eclipsing every health emergency since.
According to Avert.org, the first cases of AIDS appeared in 1981, although there wasn’t yet a name for it. The disease primarily struck gay men, although by December the first infected intravenous drug users were identified. By year-end, there were 270 reported cases of extreme immune deficiency among gay men with a mortality rate of nearly 50 percent.
In 1982, Haitians and hemophiliacs were identified as high-risk and the coming storm had a name – AIDS. One year later its parent virus, HIV, was identified.
By 1984, there were 3,064 diagnosed cases of AIDS in the United States, again, with about a 50 percent death rate; within 12 months, every region of the planet would report at least one case. Complications from AIDS were now the leading cause of death for adults 25 to 44 with about 50,000 Americans dying of AIDS-related causes in 1985, half in the African-American community, reports healthline.com.
Dr. Gary Wheeler, chief medical officer for the state department of health, was a relatively new pediatrician when he first saw HIV face-to-face.
“I saw my first case as a pediatrician, of HIV, in a newborn infant right around 1985, I think,” he said. “I remember the kid’s name to this day, Diamond Swan. This beautiful child, born perfectly healthy, by three months of age was afflicted, developed pneumocystis pneumonia and died. At that point, of course, we had no treatment. We had little in the way of diagnostic tests.”
Today, Wheeler joins the chorus of medical and health officials who say with confidence that the end is near for the pandemic, the likes of which is unrivaled save for the 1919 global flu epidemic and The Black Death of the 14th century.
“My first experience with what you are talking about, which was the preposterous dream, I was working in my office, the year 1993 or 1994,” he said. “I can remember it was a Thursday or a Friday afternoon at 6:00 p.m. I picked up this fax and it was the first trial to try to interrupt maternal to infant transmission of HIV.”
“I looked at this report and read it two or three times. It said we’re stopping the trial, we’ve had 80-90 percent success rate in stopping transmission of HIV from women to their infants using the only drug we had at the time, AZT. It was like oh my gosh, this is the first chink in the armor of HIV.”
“Within about two or three years, this new class of anti-viral drugs was developed which literally pulled people from the grave. This was the new age of treatment. We made incredible progress for a few years. By the year 2000 we had really excellent diagnostic testing.”
According to UNAIDS, 37.9 million people globally live with HIV and what gives scientists and physicians such hope are the latest generation of drugs that not only keeps the disease in check, but nearly eliminates the HIV virus being transmitted. One of these, Truvada, is of a remarkable category of preventative medicines called pre-exposure prophylaxis or PrEP. Taken daily, it blocks HIV infection even for individuals in high-risk population groups.
All of this combines for a realistic picture of a future without new HIV transmissions, but those who advocate for infected and at-risk individuals say it’s not necessarily that simple. Michael Burks, founder and president of Fayetteville-based HIV Arkansas agrees that medically, it is possible to eradicate new cases within 10 years. But, he said, there are sociological elements that must be considered as well.
“The challenges are always the stigma that’s surrounding HIV,” he said. “I don’t care where you are, there’s many, many people that are so stigmatized of their HIV status and they won’t disclose that to their friends or their family. They’re so afraid of who’s going to reject them.”
“Just recently, someone on our board disclosed his HIV status to a longtime college friend and two days later the college friend said, ‘I’m very uncomfortable being your friend now.’ This is ridiculous, but that’s the kind of stigma that people deal with.”
The fear over being identified as HIV positive is so strong, Burks said, it’s enough for some individuals to skip testing altogether, let alone come in for treatment. Even, he said, if it means containing and eventually eliminating the disease or prolonging and normalizing one’s own life, which these drugs have been shown to do.
“They have the fear of being tested. ‘Oh, I don’t want to know. If I know, then I’ll have to curtail my time of having fun,’” he said. “Honestly, if I could wave my hand, and I know this is as far-fetched as it gets, I would make everyone take an HIV test. There are so many people that are sexually active, male and female, heterosexual, gay, bisexual, trans, whatever, and they’re taking risks. You would be surprised how many you would come up with that are HIV positive and didn’t even know it.”
According to the state Enhanced HIV/AIDs Reporting System (eHARS), Arkansas had 291 new cases of HIV in 2017, ranking it 20th in the nation. More than 61,000 HIV tests were administered that year, but overall, 15 percent of HIV-positive people still don’t know they have the disease. In Arkansas, that translates to roughly 900 individuals.
This could have easily been Latunja Sockwell’s story, too. Now program manager of the UAMS College of Medicine Department of Family and Preventative Medicine Community Research Group, in 1997 she was the unsuspecting fiance of a man leading a double life.
“The typical things that people would have thought would put them at risk for HIV, I did none of those things,” she said. “I wasn’t promiscuous, I didn’t use drugs. People called me Miss Goody Two-Shoes because they said I never did anything wrong.”
Sockwell only got tested because the pastor’s wife at her church asked her to, claiming it has been prophesized that someone in the congregation was HIV positive.
“I could have been one of those statistics where I didn’t know I had HIV until 10-12 years down the road when I was very sick,” Sockwell said. “That’s why we need to educate people, because it can happen to anyone and people don’t seem to understand that.”
She said she wasn’t fearful over the diagnosis, but quickly came face-to-face with what it meant to her living in a small town.
“I was not able to receive services for lack of educated [medical] professionals,” she said. “I had to drive to Texarkana because there was no one in my area that could treat my HIV diagnosis.”
“Six months pregnant, trying to go to a health care provider in Texarkana, with little to no income, my car broke down and I ended up having to hitchhike the rest of the way to get services. I quickly recognized what the needs were for people like myself.”
Sockwell moved to Little Rock and joined the health department. A supervisor saw potential in her and helped her go back to school where she’s earned her undergraduate degree and will soon finish her master’s. She’s been repeatedly cited for her HIV research through UAMS and has organized Praise with a Purpose events that combine HIV screenings with family activities to encourage people to get tested in a non-threatening environment.
“We have over 50 percent of the individuals in Arkansas that are HIV positive that are not on medication. Why? A number of reasons, like lack of access to treatment, living a rural environment but also the stigma,” she said. “Stigma is one that I hear all the time; they don’t want family members or the people they’re living with to know that they’re on medications or know that they’re HIV positive.”
Sockwell praised state and federal health officials for their ambition but reiterated having the medical means to stop HIV transmissions is only half of the equation. She hopes to use her professional position and personal story to help fill in the other half.
“I think education is going to be key. We’re going to have to educate not only the communities but the medical professionals as well in trying to end this epidemic,” she said.
“What I want to do is educate people and make sure that they’re aware of what HIV is now, trying to reduce the stigma. People tried to shame me; I’m a very resilient person. It wasn’t like this diagnosis changed who I was or made me feel any less of a person.”
Doctors proclaim there’s a realistic picture of a future without new HIV transmissions from recent test findings. In the meantime, professionals and people like Latunja Sockwell (pictured above) strongly suggests that everyone get tested for HIV. (Photo provided)