Starting Small: Treating Kids with HIV

“You’re going to cry because you’re looking at the kids,” says Dr. Sara Stulac, putting her hand on Anatole Manzi’s shoulder. The two sat next to each other in Partners In Health’s office in Boston, bent over a thick pink and yellow album containing photographs of 184 Rwandan children—all patients of theirs living with HIV.

Stulac, a 42-year-old pediatrician from Boston and now PIH’s deputy chief medical officer, moved to Rwanda in 2005. There, she met Manzi, 37 at the time and head nurse of a small rural clinic in the southeast. He had joined PIH the same year hoping for a new phase in HIV care.

“I told [PIH], ‘Listen, I am tired of telling people that they have to eat well, behave, and wait for their final day,’” he said at his interview.

Rwanda was in the midst of an HIV epidemic, with about a quarter of a million people contracting the disease. But effective antiretroviral therapy, developed in the United States a decade prior and expensive for many who needed it, was rarely found in corners of Africa. The most Manzi and other clinicians could offer patients were tests and advice on not spreading the disease further.

The medicine cabinet at his new clinic, however, was fully stocked. PIH staff were on a mission to prove proper medication was essential for overcoming the epidemic.

But that’s not all they would prove. Stulac and Manzi, now PIH’s director of global learning and training, would make sure that an essential subgroup wasn’t forgotten. They asked their patients a revolutionary question: Had their children been tested?

In the battle to get treatment for adults with HIV, few in Rwanda, and globally, had considered pediatric HIV. But, as Stulac and Manzi would show, it was a serious problem that needed solutions separate from adult HIV care.

Over the next six years, they discovered a realm of challenges in treating kids—from drug availability to fear and stigma—and devised a series of programs to tackle the issues head-on. More than anything, they shone a light on the rights and needs of children, ensuring their equal access to HIV medication and care.

Treatment that fits

The first challenge was getting parents to bring in their children for testing—a request met with fearful stares.

Manzi remembers a mother who asked, “What are you going to do if you find out that my only son is HIV-positive?” Depressed and penniless, she could barely cope with her own diagnosis. Many of his patients had given up hoping for themselves, but wanted a better life for their kids. A positive HIV test would take that away.

“Rwandans’ hope is always in children,” he says.

To ease parents through the process, Manzi created counseling groups. They were different from hundreds already offered at public health facilities, where patients could get a test and advice, but nothing much more. His sessions gave parents the chance to ask questions about living with HIV and helping their kids live with it, too.

“It was about giving families time to express their thinking around HIV and giving them hope,” he says. Gradually, more patients brought their children for testing.

The next challenge was treatment itself. “On my shelf, I had all the tablets, but they were for adults,” says Manzi.

The valuable pills were each composed of three antiretroviral drugs of different classes that together suppressed the virus for long periods of time. In the mid-1990s, when the drugs were developed, they turned HIV into a manageable chronic illness. But they weren’t made for kids.

“There just were no pediatric drug formulations,” says Stulac. So while she and Manzi persuaded parents to bring in their children for testing, they had to figure out how they would then treat them. Their only option was to use the drugs on the shelf.

“I made this elaborate dosing chart for each molecule and each weight range,” says Stulac. She taped it to tables in the clinic, and she and nurses would cut the pills into doses that were safe for children.

“We would spend our evenings from 6 to 9 p.m. cutting tablets,” says Manzi.

At first, nurses weren’t comfortable with this clunky system, but Stulac, who circulated among several clinics in the area, visited every week and insisted it become regular procedure. Soon it was the norm. When Stulac arrived every Friday morning, she found neat rows of small medication bags labeled and filled with carefully cut pills ready for each child.

Within a year, hundreds of kids were enrolled in the program and taking their medication every day. Manzi, Stulac, and other PIH staff made sure nothing got in the way of their treatment, even securing funding for the kids’ school uniforms and fees so their lives remained stable.

As their program grew, Manzi and Stulac considered their next step: how to stop children from getting HIV in the first place. If HIV-positive women are given therapy while pregnant and breastfeeding, the chance of them passing the virus to their babies can be lower than 1 percent. Without interventions, the risk could be as high as 45 percent.

So pregnant mothers became an essential part of their pediatric HIV program and the next group Stulac and Manzi encouraged to come to the clinic for testing. If they were HIV-positive, their newborns were given antiretrovirals for six weeks and tested for HIV until they turned 2. Manzi and Stulac made sure mothers were also on treatment and had baby formula if they couldn’t breastfeed.

About 50 women were in the program at any one time, and it was undeniably effective. In six years, says Manzi, none of the babies born to HIV-positive women contracted the virus. That’s hundreds of HIV-free children.

A decade later, the program and others like it are still running at 42 health centers where PIH works in Rwanda.

Globally, the situation is still dire. Six hundred children contract HIV every day. But there has been progress. Since 2010, the percent of children living with HIV who can access medication has increased from 20 percent to 50 percent. New pediatric formulations are available, and even better ones are being made. The sharp increase is strong reason to hope things will continue to improve.

The next challenge

Photo by Zack DeClerck / Partners In Health

Stulac and Manzi, who now live in Boston, continued to flip through the album. They know the kids in these photos have done something remarkable in the last decade: They got older.

“Suddenly, the world and we at PIH are faced with the amazing fact that the kids are staying alive,” says Stulac.

This brings new considerations and challenges. Their pediatric program won’t cut it for these healthy and motivated young adults. “Now they want to go to school. Now they want to have relationships. Now they want to have a career,” says Stulac.

So their program has to adjust. As the kids get older, they’ll be counseled to stay in school and to cope with treatment while studying or meeting new peers, girlfriends, and boyfriends at high school.

This approach is not used in HIV programs in most places globally. Once they turn 15, adolescents are excluded from pediatric programs and absorbed into adult ones. But Stulac and Manzi fear that without specialized support, teens could simply stop taking their meds. Caring for adolescents, say Stulac and Manzi, is the next pressing chapter in the fight against HIV. They are a group that is falling through the cracks in medical systems.

Fortunately, the children in the album did not fall through the cracks. Manzi held it up to show Stulac a particular photo. The kids’ smiling faces are the reason they forged a path in pediatric HIV care.

“It’s an amazing investment in the future,” says Stulac.