The Washington-Kampala Connection
Levi, 17, has never known anyone else living with HIV besides his father—until today. A fresh high school graduate, Levi has been coming to Children’s National Health System in Washington, D.C., for HIV treatment since the age of 4.
Josephine Nabukenya, 21, an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), is visiting Children's National to learn about pediatric HIV treatment in the United States and to meet Levi. As a young woman who grew up living with HIV in Kamapala, Uganda, Josephine is in D.C. to talk to legislators about the importance of funding HIV prevention and treatment programs abroad. But she is also curious about the experiences of a young person in the States.
Levi and Josephine immediately fall into a discussion about drug regimens. Levi remembers that when he started taking five tablets a day he would swallow all of them in one gulp because he misunderstood the instructions, which specified that they be taken at the same time. Both agree through laughter that the liquid concoctions they were given as small children was “nasty.” “It was orange and brown, and it was worse than cough syrup,” says Levi. Josephine says that she insisted that her doctor change her medication to tablets.
“Oh, I Already Know This”
Levi tells Josephine his disclosure story. It has a familiar ring to Josephine, who helps organize activities for adolescent support groups in Uganda. She has heard from many peers about that moment when caregivers finally tell a child that he or she is living with HIV.
“When [my HIV status] was disclosed to me, I was 12 or 13,” says Levi. “It was not a surprise to me because I had realized myself [when] I was 7 or 8. I remember in class they played a video that described HIV and what people have to live through and what their life is like, and it was very reminiscent of my life.
“What really tipped it for me was that a few months prior to seeing that video … my dad was explaining the importance of medication. He was saying that it is very important to keep taking your medication because it’s important for your immune system. He said that if you don’t take your medication, basically what you are doing is exposing yourself to more and more disease.
“And so when I was watching the video, it was like, ‘they were saying the exact same words.’ From that moment, I already knew the answer. By the time that they told me [about my HIV status], I was just like, ‘Oh, I already know this.’”
“We have almost the same story,” responds Josephine, excitedly. “I learned that I was HIV-positive through reading my mother’s letter. I was around 10 years old. She was very sick, and she could not organize her bedroom, so I had to go and organize her bedroom for her. That’s when I found the letter, and I read it. It was a will. She thought she was going to die, so she needed to leave something that would tell us what she died from.
“I read the letter, and it disclosed my status, my father’s, my young sister’s, and her status. I kept quiet because I knew inside that I wasn’t supposed to read this letter. When I was around 12 years old, she called me, and she disclosed to me. I also had to disclose to her that I had read the letter, that I already knew about my status.”
“It Is Difficult to Go Through It All Alone”
Josephine and Levi continue to compare notes. In Uganda it is estimated that 1.5 million people are living with HIV. In Washington, D.C., there are about 12,000—which makes it the city with the highest prevalence of HIV/AIDS in the United States. In Uganda, HIV medication is distributed for free. In the United States, the cost of HIV treatment can run as much as $20,000 per year, requiring insurance and enrollment in special funding programs.
The biggest difference between the experiences of Levi and Josephine is the amount of contact each has had with other children and youth living with HIV.
“There was never a single other person I knew who was living with HIV, until I met her,” says Levi. He is surprised to learn that Josephine grew up attending clubs and camps organized and supported by EGPAF.
“These are groups for children, adolescents, and youth [living with HIV],” explains Josephine. “So all of the activities are tailored to meet their needs. Mainly they are monthly gatherings. But some of the activities happen during school holidays because that’s when a number of children can attend the activities.
“During such gatherings different subjects are discussed: disclosure, adherence, stigma, discrimination, and sexuality … depending on the need. It helps children realize that they are not alone. It’s also one way of encouraging them to adhere to their medication.”
“I think that would be probably very helpful if that was applied here [in the United States] more often,” responds Levi. “It is difficult to go through it all alone, no matter who you are.”
Levi tells Josephine that he is extremely grateful for the support he has received from the Special Immunology team at Children's National, which is headed by Natella Rakhmanina, M.D., who also works as Senior Technical Advisor at EGPAF. In fact, as Josephine and Levi chat over lunch, the entire team of doctors, nurses, and residents is sitting around the table—seeming very much like Levi’s medical pit crew.
“I know that for the most part growing up, it seemed like I was the only one who looked forward to going to the doctor, who looked forward to going to the hospital,” says Levi. “It has always been an enjoyable experience, and it made me think that if I need to, there is somebody I can talk to.”
“I am happy. I think that there is a good connection between him and the health workers,” says Josephine. “Generally in Uganda health workers do not really give this attention to their clients.” She explains that in some health centers, providers must see as many as 200 clients in a day, which makes it hard for them to provide children and adolescents with the extra support that they need.
“But in Elizabeth Glaser-supported clinics, there are adolescent peer counselors,” she says.
Josephine hugs Levi and tells him that she is grateful to have a new American friend. She says that she wants to stay longer, but must now rush to her next meeting with a member of Congress.
“I need to appreciate them for the support they give—because it is one of the reasons I am alive,” she says as she goes.