The End of AIDS Will Be in Love

Working with my international AIDS foundation, I have witnessed discrimination, injustice, and indignation as the major barriers to treatment and cure.
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(Beawiharta Beawiharta/Reuters)

I’m far from the first person to preach the importance of compassion, indeed the need for compassion, when it comes to combating AIDS. Long before I ever got into this work, many brilliant, dedicated professionals from all around the world were orchestrating a compassionate response to the epidemic. I’m simply, and humbly, following in their footsteps. And while I would never suggest that I’m an AIDS expert, I have seen quite a lot through the work of my foundation.

Over the years, I've had the opportunity to meet some of the greatest heroes in the global fight against AIDS. They include my many extraordinary colleagues around the world who are in the trenches, day after day. I’ve been lucky enough to travel the world and visit dozens of projects that the Elton John AIDS Foundation (EJAF) has funded. I’ve seen the difference these heroes are making. Compassion is a nice sentiment, but it’s so much more than that. I've seen with my own eyes what’s possible when compassion is put into practice.

I love the American South, where I’ve spent much of my life. I am always blown away by how beautiful that part of the country is. There’s something especially magical about Southwest Louisiana. Cypress trees that frame the haunting bayou. Flooded rice paddies and lonely prairies without a house or a living soul for miles. It’s one of the most rural places in America. And as with much of rural America, there is a quiet but deadly AIDS crisis that has been simmering for decades. Nearly 1,000 people in this one small corner of Louisiana are HIV-positive. They are among the poorest, most marginalized people in the nation. And they are mostly African-American. 

The  HIV/AIDS  epidemic  is  raging  in  the  African-American  community nationally,  and  especially  in  the South. As I've said, almost half of all HIV diagnoses are among African-Americans. Shockingly, AIDS is a leading killer of African-American women ages 25 to 44, accounting for roughly 11 percent of all deaths in this demographic. That’s why EJAF has invested heavily in projects around the United States that target African-Americans as well as other communities that are still disproportionately impacted by AIDS.

Now, it’s one thing to be in a major city with basic facilities. It’s quite another to be sick and alone in the middle of nowhere. Frankly, I wonder if most Americans know how bad it is for some people in the rural South. Take Loretta. She was 33-years-old and a single mother when she found out that she was HIV-positive. Her ex-husband had been incarcerated. She was already chronically depressed; with her HIV diagnosis, she was terrified of what would happen to her. Who would care for her three sons?

Loretta is like a lot of women in Southwest Louisiana. Young, African-American, from a poor family. Many don’t get the education they need, and many drop out of school, get married young, or have children while they’re still teenagers. These women are at high risk for contracting HIV.

As recently as 2008, emergency rooms in Southwest Louisiana were clogging up with people admitted with late-stage AIDS. The scenes of emaciated people who had wasted away from the disease looked more like something you would expect to see in sub-Saharan Africa, not America. In an age when antiretrovirals are widely available in the richest country in the world, people were needlessly dying. They still are. It’s no wonder that Loretta was paralyzed with fear by her diagnosis.

In response to the crisis in Southwest Louisiana, Terry Estes, the executive director of the Southwest Louisiana AIDS Council (SLAC), and Dr. Carlos Choucino, the medical director of the Comprehensive Care Clinic in Lake Charles, Louisiana, decided they needed to develop better ways to reach people living with HIV/AIDS. They learned from research that “navigator” models, where people are guided to get access to comprehensive services, are very successful with AIDS patients. So, in 2008, SLAC and the Comprehensive Care Clinic partnered to identify patients throughout the region who needed access to care, especially in nearby rural areas.

Loretta was referred to SLAC and immediately connected with Angela Hursey, the organization’s health system navigator. Angela is an amazing woman, one of the many heroes doing battle on the front lines of the AIDS epidemic. She personally connects with every client who walks through the door, and she becomes a fierce advocate for his or her health and welfare. She believes in her clients, and in turn helps her clients to believe in themselves.

It’s this sort of individual attention that makes all the difference. People living with AIDS often feel like statistics—and it’s no wonder, because that is how they’re treated most of the time. But at SLAC, Angela insists on treating her clients like human beings, with individual needs, concerns, challenges, and circumstances. This sounds simple and obvious, yet it’s all too rare in health-care settings. I can relate to the need for individual attention and care, because that was what really helped me to get clean and to stay sober. Being treated with dignity, with compassion, like a real person with individual struggles, is what empowered me to turn my life around.

Whenever someone like Loretta walks into SLAC, Angela’s first order of business is to get the person immediate access to care. She will literally take her clients to the hospital screening office so they can figure out what kind of financial assistance they might be able to get. She’ll walk them to the lab to get tested. She’ll go with them to their first doctor’s appointment. She’ll do whatever it takes to get them to take control of their health. If they stop going to their appointments or taking their medication, she’ll pick them back up and walk them through the process all over again. After her clients are stable, she’ll hand them over to a medical case manager to keep track of their progress.

It’s still the case that in communities across America people with AIDS are sometimes treated like dirt. If they’re gay, it can be even worse. They’re so afraid of the judgment of their communities, even their families, that they won’t get tested. Despite how far we've come, people in America today still experience abuse. That’s why some HIV-positive people travel hours from their homes to get help from SLAC. The organization works hard to make clients whose families have ostracized them feel safe.

Thanks to SLAC and its dedicated caseworkers like Angela, Loretta started managing her disease. She went back to school to finish her GED. Today, she volunteers with SLAC, facilitating a women’s support group. She even has her own office space, where she mentors other people who are struggling to come to terms with HIV/AIDS. Loretta is taking her experience, her story, and sharing it with others. She is using it to help them get through this incredibly difficult experience. She’s a living reminder that we cannot simply treat the disease; we must treat the person.

When confronted with an enormous crisis like AIDS, it’s easy to feel helpless. And in the face of huge numbers—millions of people infected, billions of dollars spent—it’s easy to feel, as an individual, or even as an organization, that we can’t make a difference. But SLAC is an example of how a relatively small amount of money can go a really long way when compassion is at the center of our efforts.

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