Defeating the Stigma

Written by Ben Gierhart // Photography by Antonio Pantoja

HIV. There is a great power in naming something outright. It is the first step toward dispelling fear because with a name, something is known. If it is known, it can be contained. The HIV/AIDS epidemic began in this country in the early ’80s and mercilessly ravaged an entire generation during a period when the disease was unnamed, unknown and uncontained. An even greater tragedy is the scores of people who witnessed family members and loved ones in the spring of their lives tragically wither in a matter of months. It is a still greater tragedy that there are those today who are ignorant of or simply callous to that experience. This attitude engenders a stigma that is deadlier than any virus because it ignores the medical breakthroughs and knowledge that those who died could have only dreamed of. If you are afraid to speak the words aloud, this stigma is the source of your fear. But you need not be afraid.

Infectious disease specialist Dr. Anupama Raghuram
Infectious disease specialist Dr. Anupama Raghuram

Dr. Anupama Raghuram is an infectious disease specialist at the 550 Clinic at University of Louisville Hospital, a state-of-the-art one-stop shop for HIV treatment in Louisville. As it is a branch of University of Louisville Hospital, 550 houses its own lab along with pharmacists, social workers and medical providers – such as Raghuram – to afford its clients free HIV medicines, connect clients to insurance and physicians, and refer clients for housing and any outside nutritional support they may require.

“We used to have one regimen for once-a-day treatment – now we actually have six,” Raghuram explains. “The current medications are a lot easier to tolerate. There are fewer side effects and fewer pills. Most people are able to take one pill a day.”

That statement alone would seem miraculous to someone living through the onset of the epidemic, the days of AZT, Crixivan and other pills that could cause high levels of toxicity with painful and visible side effects. While the existence of some kind of treatment was rightly fought for by activists, AZT and its kin ultimately, many would argue, did more harm than good. People often chose not to take such treatments because the majority of side effects took away their dignity of life. Constant diarrhea, nausea, headaches and more were commonly too much to bear.

Now, the treatment has become so successful that it has completely changed the landscape of care. Providers have a world of options at their fingertips, and even the term AIDS is under debate. It’s a principle in medicine that Raghuram has not personally adopted, but it is one that she understands, given recent advancements.

“The difference between HIV and AIDS came a long time ago, before we had some of the more potent medicines that we have today,” she relates. “It’s basically a cutoff.” One test to monitor the effect of HIV on the human body is called a CD4 count. CD4 T lymphocytes – or CD4 cells – are what help the immune system fight off infection. As researchers of HIV studied their subjects, they found that once that number hits below 200, people have trouble fighting off infection. “Once you fell below that line, things were very difficult in terms of treatment,” affirms Raghuram. “When you fall below 200, you attain an AIDS status, which is basically an indicator for us as providers of what to look for, nothing more.”

But she does admit, “I do understand where the movement to end the use of the term AIDS comes from. It can be misleading, especially when you think of the context from the ’90s to today. Nearly all of the patients then were coming to doctors with CD4 counts below 200 because there was no way to catch the disease sooner. It’s just not the same anymore.”

The most important advancement in HIV treatment, however, is the certainty that if you take your medicine every day, you’re going to be just fine and have an average life expectancy. “Diabetes. High blood pressure. HIV today has very much mirrored these conditions,” Raghuram attests. “We can control the virus to a level that it isn’t actively hurting you.” In fact, in an article for The Spectator in 2014, British doctor Max Pemberton goes so far as to say that he would rather have HIV than diabetes as the latter has been known to shorten a lifespan even while under medication and the former has not.

Stigma makes it difficult for many people to get into care. People are afraid that they will run into someone at the clinic who they know and are afraid they will treat them differently. Again, the community has failed to educate, whether it be in churches or schools.

Medical case manager Colton Wilson
Medical case manager Colton Wilson

With even more powerful longer-acting medications on the horizon, in addition to what is already available, an HIV diagnosis simply does not have to be a death sentence anymore. There are, of course, still challenges and stigma that bar those infected from these resources, and the question of why new cases of HIV still appear even in this golden era of unparalleled medical advancement is a valid one.

“Stigma is one of the reasons that we continue to see such increased rates of HIV transmission and new diagnoses,” says Colton Wilson, a medical case manager at the 550 Clinic. “People are aware of the moral implications that have come to be associated with a positive HIV status and are afraid to get tested or start treatment. They’re worried that someone will see their pill bottle or find their test results and disrupt their lives.”

Wilson and other case managers see the stigma every day. They see it in the language their clients use. “In my annual meetings, I’m often the only one to say the letters ‘HIV,’” says Wilson. “Clients will call it their condition, their illness and a number of other synonyms to avoid actually saying it.”

Amirage Saling, also a case manager at 550, agrees: “It is unfortunate that not enough education has been outreached in our community. I have clients who tell me today that those family members who know of their HIV status will make them eat with disposable plates, cups and forks so that they do not infect other family members. Stigma makes it difficult for many people to get into care. People are afraid that they will run into someone at the clinic who they know and are afraid they will treat them differently. Again, the community has failed to educate, whether it be in churches or schools.”

Medical case manager Amirage Saling
Medical case manager
Amirage Saling

Transgender women have one of the highest rates of new diagnoses, and as a trans woman, Saling’s presence at 550 is a godsend to those newly infected women who walk through their doors. It also affords her a sensitivity to those who may fall under other intersectionalities, such as the homeless. “Many of them are not taking their medicines every day because either the shelter will not allow them to bring in their medication, or if they are allowed to come in with their medication, it gets stolen while they sleep,” she describes.

Leader of Louisville’s chapter of Team Friendly Jeff Henken
Leader of Louisville’s chapter of Team Friendly
Jeff Henken

Team Friendly – a campaign in the U.S. and Canada – strives to end HIV stigma through the use of sex-positive conversation. “We encourage people to talk without judgment about HIV, to get tested and most importantly, to be there for a friend who might have tested positive,” says Jeff Henken, leader of Louisville’s chapter of Team Friendly.

Due to the nature of HIV transmission, the subject of sex between a serodiscordant couple – a couple consisting of one partner who is infected with HIV and one who is not – is still often taboo. While it is true that when it comes to such practices there is only risk reduction and not elimination, it is also true that there is no documented case of transmission from a medically compliant HIV-positive individual.

The arrival of such medications as PReP has successfully allowed for the prevention of HIV infection in individuals with an HIV-negative status. However, they remain controversial due to their availability, affordability and the strict adherence required for them to be effective. Henken maintains, however, that PReP is only one tool in the toolkit.

“People are going to have sex,” he says. “PReP is a great tool. Condoms are great tools. You want to use every resource you can get your hands on. If something has worked for you, that’s great, but the important thing to remember is that some other method may work just as well for someone else.”

In addition, Henken stresses the importance of getting tested, knowing your status and engaging in sex responsibly with full disclosure. Such practices are the only way to live a full and productive life without spreading the disease, but he asserts that it is possible. Henken cites fear of rejection upon disclosure as perhaps the most common and profound effect of HIV stigma: “Unfortunately, HIV sits at the intersection of all of our social ills: poverty, racism, transphobia, homophobia and more. It’s what stops us from wanting to know our status in the first place, and that’s dangerous.”

Indeed, the issues of stigma and socioeconomic status feed each other, and the latter serves as a monolithic obstacle to medication and treatment. This is why Reverend Paul A. “Bo” Stilwell founded Keeping It Real Loving Caring Sharing in the Neighborhood Institute Inc. – or Keeping It Real for short. Stilwell also serves as Keeping It Real’s CEO.

Keeping It Real Founder and CEO Reverend Paul A. “Bo” Stilwell
Keeping It Real Founder and CEO
Reverend Paul A. “Bo” Stilwell

“We’ve come a long way in regards to HIV and AIDS. I was diagnosed in ’93,” says Stilwell, who also happens to be a black out bisexual man. “I got my diagnosis in a time when a lot of people were being given a death sentence. I had a wonderful doctor who said that there were medicines coming down the pike and thought that I might be able to beat this.” Before Stilwell had access to that medicine however, his CD4 count plummeted from around 600 to below 200, numbers within the AIDS range.

At the time of his diagnosis, Stilwell’s mother was also dying of pancreatic cancer, and he had to take care of her as much as he had to take care of himself. “She told me on her deathbed, ‘You are not going to die. You were born on Easter Sunday, so you are going to give life, joy and resurrection back to this earth,” he recounts. “So that’s what I’ve tried to do.” As if by providence, Stilwell was able to go on a new regimen of pills, and after years of struggling with his CD4 count and viral load, he finally took the first step toward stabilization.

In accordance with his mother’s wishes, Stilwell began speaking out about his story and attended the Magic Johnson Health Fair at Georgia Tech in 2003 as a speaker. “When Magic Johnson heard me speak, he stopped the convention and said, ‘That’s what I’m talking about!’ I’ll never forget. I was so inspired by him, and when he told me that I needed to be doing some work, I knew he was right.”

Stilwell recalls realizing that HIV was still considered a white gay disease despite the fact that the black community is disproportionately affected by it. For this reason, he made it his and Keeping It Real’s mission to serve all communities and provide them with non-medical case management, medical transportation, emergency financial services, early intervention systems, food banks and countless other services. Unlike the 550 Clinic, which does similar work and is funded by University of Louisville Hospital, Keeping It Real does it on a shoestring budget made up of grassroots fundraising, grant writing and intermittent reimbursement from the state.

I think we can come around the table as a family and find solutions. We don’t have to spread it. We are such an overlooked community, but we can end it.”

“I am the only Afrocentric organization in the state of Kentucky that is addressing this,” says Stilwell. “That’s what makes us unique.” Stilwell also uses his singular role as a reverend to speak at places of worship. “A lot of the churches would not do it,” he admits. “They still look at it with fear, hate and stigma. It’s one of the greater perils we face.”

Stilwell continues to lead the charge in the West End of Louisville, and his intrepid work in other often overlooked communities such as low-income neighborhoods and retirement facilities is commendable and deserves full support because it celebrates the humanity of those infected: “I think we can come around the table as a family and find solutions. We don’t have to spread it. We are such an overlooked community, but we can end it.”

Between the work of all these doctors, case workers and disparate but decidedly focused groups, things are changing. The talk surrounding HIV is changing, and the depictions of HIV-positive characters on such popular television shows as “Looking,” “Transparent” and “How to Get Away With Murder” are just a few examples of how the media is exposing society to a new outlook.

Slowly, but surely, we are beating something deadlier than the virus.