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They’re Not Statistics. They’re People.

Meet the ‘Faces of HIV’
By Sarah McCartan

Meet Renee.

Renee, a newlywed, wasn’t aware that her husband had HIV—until she became pregnant with twins and went to her first prenatal appointment. After leaving her husband, and learning that in the state of Florida knowing and not disclosing your status and infecting someone else is a felony crime, she was able to have him incarcerated.

Meet Dab.

In the 1980s, Dab lost hundreds of friends to HIV/AIDS, most of them being quarantined. Before finding out he tested positive, Dab was quarantined and told he was going to die with PSP—a rare form of pneumonia his partner had suffered from, and had also been quarantined with.

Meet Tracey.

Tracey had no idea she was infected until her now deceased husband grew very ill, and was tested and diagnosed with fully-developed AIDS.

According to the Centers for Disease Control and Prevention (CDC), more than 1.1 million people in the United States are living with HIV, with about 50,000 new infections each year.

In 2010—Florida ranked first in the nation for HIV infections reported and third for AIDS cases diagnosed, contributing 12.0 percent and 11.1 percent of the nation’s cases, respectively.

Last year, in 2012, there were 5,388 new cases of HIV reported in the state of Florida. Of these cases, 66 were reported right here in our own backyard of Escambia County.

The Bureau of HIV/AIDS estimates that 125,000 Floridians are currently living with HIV (Human Immunodeficiency Virus). These estimates include those who have been diagnosed with HIV or AIDS, as well as the one in every five individuals who remains unaware of their HIV infection.

While these numbers may be powerful, they pale in comparison to the faces and stories of the actual human beings across the state of Florida and beyond who are living with the disease, day in and day out.

They’re not statistics. They’re people. They’re people who look just like you and me.

Faces of HIV

Thanks to “Faces of HIV” a special Florida Department of Health (FDOH) project and mobile art exhibit, these stories have been making their way around the state, stopping at special events, college campuses, museums and more. “Faces of HIV” uses multiple mediums to tell the stories of Florida residents living with HIV and AIDS, including Renee, Dab and Tracey.

This educational outreach project began about a year and a half ago, starting with an original group of participants. Since then it has grown to include more participants and is reaching more parts of the state.
Currently in its third tour, the exhibit is making a stop in Pensacola Wednesday, Sept. 18 at the University of West Florida, Thursday, Sept. 19 at Pensacola State College, and Friday Sept. 20 at Gallery Night.

“We keep our messaging consistent—but we try and keep things fresh,” said Marlene LaLota, HIV Prevention Program Administrator for the Bureau of HIV/AIDS. “Stigma has always been a part of the epidemic. We wanted to do something that reduces stigma and normalizes HIV and we thought—what if we show people what people with HIV look like? Show them that they look like everyone else.”

The exhibit travels down the highway, showcasing portraits of the participants’ faces on the side of the truck. These portraits are also present in larger than life form inside the vehicle where participants are invited to enter for an up-close look as the project makes its various stops.

In addition to the detailed portraits, are interactive components including video testimonials and physical journals. As a part of the exhibit, participants used the journals to catalogue their journey with HIV for a month’s time. The journals include everything from daily activities ranging from going to school or work, to planning a wedding, raising multiple children, and fighting the physical effects of the illness.

“We wanted people to know what it’s like to live with HIV:  What it felt like when you were diagnosed and how are you doing since then,” said LaLota.

As LaLota explains, the journal component is a part of a balanced approach.

“For younger people in particular we want them to know that it’s not an automatic death sentence. You can have a normal life as long as you take care of yourself, stay healthy and see a doctor. But still, there’s no cure. With the journals we try and provide a balanced perspective. Yes, I have this good life but it’s not always a picnic.”

Since starting the project, the FDOH has seen a positive response from the attendees and host communities, as well as those interested in coming on board to share their own story.

“It’s almost like once someone opens the door it’s easier for others to walk through,” said LaLota. “We’ve seen that through the exhibits and the faces. Some people have told us that it’s a relief to be able to talk about it. Some people have been hiding it, even for decades. Once people are able to get it out it’s very cathartic.”

The FDOH seeks to include those from all walks of life, and parts of the state, and continues to introduce new faces.

“Florida is an incredibly diverse state, and we are trying to have faces represent all segments of society—for everyone to relate,” said LaLota.

Stigma is something that not only exists on a national level, but is something that has been a difficult battle to fight within our home state.

“There’s a homosexual stigma in this country. That’s created some barriers and it makes it harder to fight the epidemic. The more infected people there are, the easier it is to get infected,” said LaLota. “We’ve made a lot of progress [in Florida]. Stigma is still a big issue especially in rural areas.”

Not only does the project showcase that HIV can infect any individual at any point in life, and that it is nondiscriminatory based on social status or any demographic factor, it shows that it can be contracted in a multitude of ways.

And although much progress has been made, HIV remains an illness that is a very real, ever-present day-to-day battle for all of those whom it touches—including each of the unique individuals who allow a candid look through their eyes with the “Faces of HIV” project.

On her testimony video, Tracey made the following poignant statement that spans across all cases represented within the exhibit, and extends to each and every case out there beyond:

“Doesn’t matter if you’re rich, poor, black, white, young, old, gay, straight, male, or female,” she said. “It could be any of us. All the virus needs is a human T cell to grow and replicate, and guess what? We’re all human.”

An Infectious Prick

Meet Donald.

“An Infectious Prick” was the title of the Dean’s Lecture that the Doctorate Student at the University of South Florida presented last year at World AIDS Day. Donald was the first student to ever be granted this opportunity.

For Donald, a single infectious prick was all it took.

In 2005, Donald contracted HIV by way of an occupational exposure in a crowded hospital emergency room, dealing with a trauma patient with AIDS.

“For the first number of my years working in the health care field, you know the risk is there but you just do your job and you don’t treat people any differently,” he said. “It’s a method of transmission that most people don’t think of.”

According to the Occupational Safety Health Administration (OSHA), 800,000 needle-sticks occur in the U.S. each year. The CDC reports that as of 2010, 57 documented occupational transmissions of HIV to health care workers and 143 possible transmissions had been reported in the United States.

“In my incident I wasn’t even the one handling it. It was a nurse and we were too crowded in the room. It was no fault of my own or lack of training thereof. Stranger things have certainly happened,” said Donald.

Three months later Donald’s tests were negative. Five and nine months later, they came back inconclusive. It was several more months before Donald officially tested positive for HIV at the Mayo Clinic in Jacksonville, Fla.

“For the longest time I was angry. I was doing my job. I wasn’t being promiscuous. I was an undergrad working at the E.R.,” he said.

After going through stages of dealing with the diagnosis, Donald realized, “Nobody deserves to be infected or burdened with this disease.”

“After the exposure, it took my mom hitting me upside the head,” he said. “‘You are turning into the son I didn’t raise—this is your cross to bear and you are going to have to bear it,’ she said. ‘Everyone has something eventually they have to face and this is yours.’”

Still, Donald was able to live in denial from the time he was diagnosed in 2006, until his body needed help, and he began treatment in 2011.

“Starting the medication felt like being diagnosed all over again,” he said.

“I can still hear the pen and the sound that it made when the doctor signed his name to my first prescription. ‘You don’t have to fill it today or tomorrow,’ he said, ‘but when you are ready you will know.’”

After waiting for quite some time to fill the prescription, Donald finally did. But he still didn’t take it—not yet. Not for a while.

“I didn’t fill it that day or that month,” he said. “Even then when I did fill it, I didn’t take it that night.”

Eventually, Donald quit shuffling bottles around in his medicine cabinet to hide the pills. One day he came home, and he took one. And immediately a burden was lifted.

“I call that pill my life vitamin,” he said. “I take it at night and never miss a dose. I continue to live out my dreams and live my life taking control of the situation.”

In addition to pursuing his doctorate degree in Global Health and Communicative Diseases, Donald is active in the community within both volunteer groups and AIDS service organizations. He is a member of the State Emergency Response Team based in Tampa and is a HIV/AIDS consultant with the Bristol Myers Squibb Virology Department.

“My hope is to just reach one person—the more the better—[and let them know] just because you have it, your life will still go on. There’s nothing that a person living with HIV can’t do. The difference is I take a pill before I go to bed,” he said.

Since in Donald’s case, the exact point of and specific type of exposure and strain of the virus were known, it’s been able to be monitored from the start. As a result, he has not suffered from many of the associated physical ailments that others go through.

“So many people go without being tested and by the time symptoms are shown, the damage is already done. I’ve been able to be in front of it the whole time,” he said.

“I consider myself lucky. And I count my blessings. Telling my story is another way I can take control of the situation and make the best of it.”

While Donald’s story may not include physical battles, he catalogued one particular unexpected event within the journal portion of the project reminding him, and those who read, of the harsh realities of the illness. During his 30-days of journaling for “Faces of HIV,” Donald received news of a friend’s death.

“One of the biggest things [included in the journal] is finding out that one of my friends who had moved to Seattle had died of HIV. That kind of hit close to home. You just don’t hear about that too often. He was compliant about his medication. No indication that his numbers were off. I got a phone call that he passed away from a ‘related symptom,’” he said.

“We are the same age and I wasn’t sure how to deal with that. I think about some of my older friends in their 50s and 60s who have lost hundreds of friends and I only lost one. So I felt conflicted. Even though it’s a manageable condition, it is still a serious one.”

Donald currently works with individuals to not only help shed awareness on and remind individuals of the seriousness of the disease, but to show that HIV/AIDS is truly nondiscriminatory.

“There’s nothing wrong with thinking that it’s not going to happen to you. I think the problem comes in when you say, ‘It will never happen to me,’” he said.

Donald has met with individuals suffering HIV symptoms; who scoff at the idea—assuring him that it couldn’t happen to them—because they’re married.

“I’m happy that [they’re] married but people are people and human beings are going to make mistakes,” said Donald.

In addition to denial remaining a recurring mindset for many, Donald notes another key issue is the fear of judgment, and in turn, results in an aversion to the HIV test—which is free in the state of Florida.

“One in four people don’t know they have it,” said Donald. “I understand why a lot of people don’t do it. A lot of people don’t get tested for fear. [It’s the mindset of] if nobody ever tells me I’m positive then I’m not positive.”

“I’m a big advocate for the American Medical Association (AMA) to include an HIV panel within an annual physical. Florida has made enormous steps to educate people on HIV, but there’s still a lot of work to do,” he said.

Still, on top of fear, remains stigma, something Donald even sees amongst the health care community.

“In 2013 we shouldn’t be having the same conversations,” he said. “It’s shocking that people in 2013 are treating colleagues like it’s a leprosy camp.”

Test Turned Testimony

Meet Kamaria.

Kamaria had no idea she was HIV positive until she gave birth to her daughter. That was 10 years ago, when she was 21-years-old.

Immediately, the uncertain and startlingly reality for both her, and her daughter, sunk in—and took over.

“It really was nerve-wracking,” she said. “I am trying to become more transparent about my feelings at that time. I actually felt suicidal during the whole process. The thoughts were there—but I never attempted.”

According to the FDOH, Approximately 80 percent of HIV and AIDS cases among women are the result of heterosexual transmission. Last year, in 2012, there were 464 births to HIV-infected women in the state of Florida. Seven of these infants were infected.

It was just before her daughter’s first birthday when Kamaria found out for certain that although she had tested positive, her daughter was not.

“I don’t know how I would have handled it if she was positive,” she said.

For Kamaria, initially dealing with the diagnosis began with convincing herself she was okay with it, so she could convince her family, who she relied on as her primary support system.

“I believe you have to be okay with it first to help your family feel safe. If your approach is freaking out your family will also freak out and they want to help you,” she said. “I’ve learned through disclosing my status that as long as I could convince everyone else that I was okay with it, they would be okay with it.”

Kamaria seeks to use her story to break people out of the mindset that there is a certain “risk box,” comprised of certain categories of people, and is committed to helping fight to change the stereotypes.

“People assume because I am a black female that I must have been promiscuous or a drug user—and I don’t fit either of those,” she said. “It’s changing that mindset and being a face to this and proving to people that it can be anybody. More people need to have conversations that there is no risk box.”

While Kamaria acknowledges there is this heightened sense of awareness around HIV, replacing what felt like a sense of complacency surrounding the disease for quite some time, she notes that the acceptance of ignorance remains an issue—even today, in 2013.

“I see a lot of the acceptance of ignorance; people who are ignorant because of their own personal experiences; people who assume someone who has HIV did something dirty; people who think they have a right to publicly proclaim someone’s status,” she said.

Kamaria is involved in numerous educational, outreach and awareness efforts, including “Faces of HIV.” For Kamaria, the journal part of the experience proved both cathartic, and introspective.

“I tend to write and journal anyway. I recently found all of my high school journals,” she said. During this journal process, Kamaria was planning her wedding, and was married in 2012.

“There are things I was able to say in my journal, I wouldn’t say otherwise,” she said. “It was freeing, liberating and empowering—especially at the time of planning a wedding.”

Unlike Donald, Kamaria has faced health effects, including migraines—something she also chronicles through her journal. While these crippling headaches have subsided, partially attributed to high blood pressure treatment she received, other physical daily reminders remain present.

“I’m still sensitive to temperature change,” she said. “I get super sensitive to touch when it’s really cold and it’s painful. My daughter or pet… it just drives me crazy if they want to sit with me [at those times].”

Although she went seven years without taking a pill, she now takes three pills every day. Like Donald, she affirmed that this was a difficult point of acceptance—and a turning point.

“I didn’t want to accept that my life depended on a pill. Now that I am on medication, I understand those who don’t.”

While Kamaria admits that treatment is something that doesn’t come easily or freely, and involves consistently checking in with a case worker regarding policies, payments and procedures that may have changed, she encourages those newly diagnosed to seek treatment in the best way they can, and to reach out to someone—anyone—who can help.

“I don’t think anyone should sit back and suffer because they don’t know how to receive treatment,” she said.

What would she say to someone who thinks HIV won’t, and can’t happen to them?

“I would flat out tell them—I would tell them my story. I would give them the two prime examples, starting with me specifically. I would start by pointing to the ‘Faces of HIV’ exhibit, and then to other advocates,” she said.

“I know an 80-year-old who got it from her spouse. There are all different situations and it can happen to anyone. You can’t look at ‘categories’ of people.”

Kamaria is consistently traveling and speaking—using her voice to speak to those both with and without the illness, including youth.

“It’s my job to educate—to turn a test into a testimony,” said Kamaria.

Her daughter, now age 10, goes with her to certain speaking engagements.

“I make sure she comes with me so this can be something she sees as okay that people talk about and not be ashamed of,” she said.

“You always hope you are helping somebody. It’s rare somebody comes back and tells you. I would like to think I’m making a difference, but if I leave this earth and never heard anyone say it, I would be okay. Since this is the third ‘Faces of HIV’ tour I think the project as a collective is making an impact on communities across Florida.”

“And if everyone’s voice speaks collectively—that’s enough.”

PENSACOLA TOUR DATES

Wednesday, Sept. 18
University of West Florida
11000 University Pkwy.
Cannon Greens
9 a.m. – 2 p.m.

Thursday, Sept. 19
Pensacola State College
1000 College Blvd.
Between Buildings 1 and 5
9 a.m. – 2 p.m.

Friday, Sept. 20
Gallery Night
Downtown Pensacola
Location TBD
5 p.m. – 9 p.m.

Bring your smart phone to the event to scan the QR code and watch the videos.
@wmtcfl : Follow We Make the Change Florida on Twitter to stay up to date with event information. Twitter.com/wmtcfl

We Make the Change
The “Faces of HIV” is a special project that falls underneath FDOH’s overarching “We Make the Change” movement.

The idea and the mission of the movement is:  “We can make changes in our own lives—and in our community—to stop the spread of HIV infection. By coming together, and sharing information, we build the foundation for a stronger neighborhood, a stronger family, and a stronger message:  We are more powerful than the disease.”

Although the movement itself has been around since 1999, it has taken on various forms, and is now a fully-involved interactive online platform, educational tool and resource center. “We Make the Change” invites individuals living with HIV to get involved and share unique stories through this web outlet.

To learn more about “We Make the Change” and “Faces of HIV,” visit wemakethechange.com.