Activist Maria Davis and Michael Gottlieb, MD, hope the results of an I Design survey empower others living with HIV
Text & Photos by Alina Oswald
[dropcap]T[/dropcap]he fight against HIV/AIDS is a complex and complicated process that often brings together individuals from all walks of life, determined to finding better treatments and quality of life, in a combined effort to ultimately put an end to the pandemic. Scientists, artists, designers and activists alike work to design a way of reaching this ultimate goal.
Most recently, Merck’s I Design campaign brought together fashion designer Mondo Guerra [A&U, January 2013], winner of Project Runway All Stars; photographer and HIV activist Duane Cramer [A&U, May 2013]; music industry insider and HIV activist Maria Davis [A&U, September 2014]; and Michael Gottlieb, MD, Associate Clinical Professor of Medicine, David Geffen School of Medicine, UCLA, a pioneer in working with HIV patients and reporting on the disease from the early days of the epidemic.
Late last year, I Design released the results of a new survey “aimed at helping to empower people living with HIV to ‘vocalize’ how their treatment is working in discussions with their healthcare team and to ‘tailor’ their HIV treatment plan by approaching treatment ‘through their own lens.’” Together, Dr. Gottlieb, who is familiar with the results, and Maria Davis, a spokesperson for I Design, are helping to start a more comprehensive conversation about the state of HIV today, especially among long-term survivors. I had the chance to chat with both of them about the survey, its results, and their significance in today’s time of HIV.
“HIV today is very different from what it was five or ten years ago,” Dr. Gottlieb explains, “and certainly very different from what it was twenty years ago. The study basically demonstrates that patients are very interested in their own overall medical health, not just in their HIV, and I think it’s a sign of where things are today in terms of patient focus, and where things are going in the future, as patients age.”
The study surveyed some 520 individuals living with HIV for over ten years, and also with at least one other chronic health condition. Participants came from a broad spectrum of ethnicities, mirroring today’s population living with the virus.
But the survey results were not quite what Dr. Gottlieb expected. He expected patients to be primarily interested in their HIV, when, in fact, some eighty-five percent of patients said that they were concerned with how their HIV medications would affect their other health conditions, and vice versa.
“I did not expect that degree of sophistication,” the doctor says, but he also explains why this shift in results contrasts with surveys from past years. In the eighties and nineties, people were so overwhelmed by the idea of HIV that oftentimes they neglected or had limited awareness of their other health conditions. Nowadays HIV is much more manageable, thus enabling patients to look at their overall health and pay attention to health issues other than their HIV, especially because nowadays patients are confident that they’re going to live, in many cases, for decades; they have a plan for future healthcare, and a retirement plan—something that wasn’t imaginable only three decades ago.
The survey results also show that patients want to work with their doctors to tailor their HIV treatments so that it works with the medications they take for other health conditions. “I think it reflects a sense of empowerment on the side of patients, which is welcome,” Dr. Gottlieb says.
“As I read it,” he adds, “[the survey] is very affirmative, a sign of progress. It reinforced my own experience, what I see in my practice every day—patients ask about their T cells and viral load quickly, and then move on to other subjects.”
Perhaps on a less promising note, the survey also proves that HIV-related stigma still exists. “Doing away with the unjust stigma associated with HIV is something that takes time and more openness,” Dr. Gottlieb says. “Stigma—any stigma—is damaging. If people can live openly with HIV, and show others that they can live well and responsibly, it helps the cause.”
Stigma can also affect patients’ health. “People who can’t share their HIV status have a secret,” he explains. “Stigma and secrecy can lead to depression. In some instances, depression can lead to non-adherence [to HIV meds], and it’s very damaging.”
Dr. Gottlieb advises those living with HIV to check out the initiative’s website, projectidesign.com, which provides tools patients can use to prepare for their doctor’s visits. That is, for example, help them save time and come prepared with a list of questions they might have for their healthcare provider or a list of medications they might be on. “I think that, by publicizing the results, more people that read [A&U], that [usually] don’t ask a lot of questions, may learn from [the article] and take that back to the clinic. We now have many tools to curb the spread of HIV, and we have a whole new focus, different from what we had five or ten years ago, and the focus is on health and longevity.”
Maria Davis is a perfect example of living a long and healthy life, while living with HIV. She can be seen with her bullhorn, educating about HIV on the streets of Harlem; at her church, the First Corinthian Baptist Church, where she’s a part of the HIV Ministry; or at the Shrine, where she does music industry showcases once a month and where she started Mad Wednesdays in 1995, the year she was diagnosed with HIV. The three-time New York City Marathon runner can also be seen a the Y, a few blocks from where she does her activism work, swimming and working out, taking care of her whole health.
As mentioned earlier, Maria Davis is also a spokesperson for I Design. “They love my messaging, and that was an important aspect of their campaign,” she explains, sitting at the table, in my photo studio.
Just like Dr. Gottlieb, Davis is excited about the survey results. They show that more people have an open and honest conversation, not only about their HIV status, but also about their other health issues. That, in turn, comes to show that HIV is now part of one’s whole health.
She also agrees with the doctor when it comes to the HIV-related stigma that stubbornly is still here, three-and-a-half decades after the beginning of the epidemic. It is present, she says, speaking of stigma, “especially in the African-American community, which is the large community that I work with.”
But while HIV/AIDS does not discriminate, neither does the related stigma. Most recently, Charlie Sheen’s disclosure of his HIV status brought out a furious wave of disapproving social media posts and, often, uneducated remarks. That comes to show, maybe more than ever, that, if stigma can happen to someone like Sheen, it can happen to anybody. “So you know from that that stigma is still there,” Davis comments. She knows what stigma feels like, and deals with it by educating herself about the thing she’s suffering from. “And to me that speaks of any health issue. You need to be educated about it. The fact that you’re educated gives you freedom, and empowers you to be free. That’s why it’s important to continue [spreading] the message through I Design, through my Mad Wednesdays, and my faith family.”
And she does just that, in many ways. What’s maybe most striking about Maria Davis is her realness. “It’s very important [to be real],” she says, “because when you are real, that makes people trust you, and trusting that the information that you’re giving them is important. It helps them to become advocates for themselves.”
She doesn’t only encourage people to get tested and know their status, but takes the message a step further. She organizes events at her church, events like Love Feast, where she invites the community to come and feast, and get tested for HIV, and also pick up information about HIV and AIDS. “We have HIV information on the tables,” she explains, “we speak to people, and have a conversation with people.”
Davis also started a project called Not Forgotten. She encourages those who know someone who has died from AIDS-related complications, to write that person’s name on an angel and place the angel on a stencil. “We have a big board outside the church,” she says. “It’s draped in red material now, and it’s full of angels.”
She shares her story, because she believes it’s important to do so. “When you tell your story,” she says, “you don’t have to hide. You let the cat out of the bag.”
Some people are ready to share their stories, while others are not. After all, activism is not for everybody, Davis explains. Coming out about one’s HIV status, for example, is a road one chooses to take. “It took time for me to accept that I was HIV-positive, but once I accepted it, I embraced it as a calling, and I’ve been on an incredible journey.”
Through her activism work, Davis has become the voice of many people, in particular women, living with HIV. On World AIDS Day 2015 she spoke with an organization of women at Columbia University. One of the questions that came up touched on how to start a conversation about HIV with a potential partner, a question that, perhaps, is more difficult to ask nowadays, in a world of instant feedback and virtual connections.
That, in turn, brought up the topic of the ability to communicate, social skills, and good old-fashioned courting. “Courting, when a man comes and opens the door for you….They didn’t know what courting meant,” Davis says (taking even me, just slightly, by surprise), “because that’s not the information that they’re given now. The information is that you get on your cell phone and hook up with [someone]. So much is being lost [today] at the hands of technology. Nobody has to talk to each other anymore. You can text each other. But texting shows no emotion. Texting doesn’t have a passion. You can’t look into a person’s eyes, you can’t see if they’re really being [honest].” And this kind of face-to-face interaction does matter when trying to figure out a relationship or the next level in a relationship, when it comes to information of any kind, not only HIV.
And speaking of HIV, our conversation circles back to the survey and its importance in today’s day and
age. Davis believes that the most important thing that comes out from the I Design survey is that people are living longer, while living with HIV. Their overall health, not only related to HIV, is important to them. “If we reduplicate that a hundred more times, we will get to zero,” she says with a smile, “not by 2020, [because] we are in 2016 and still whispering, ‘I’ve got HIV.’”
Above all, she has hope. Thanks to tools like I Design, people now have the information, and they can pass that information on to someone else. They feel more comfortable having that HIV conversation. That means that what Maria Davis is doing, and what I Design and other activists are doing is important and continues to evolve.
I Design also empowers people living with HIV. The more empowered they are, the more comfortable they’ll feel to empower themselves and others. And that way, some of the stigma will be shed off. “That’s what has kept some of us still here—the optimism, the excitement.”
Alina Oswald interviewed artist and activist Avram Finkelstein for the December 2015 Gallery.