Treating Pediatric AIDS: It Takes a Village
"With children, HIV infection is not treated just by pills. Children need the care of family, they have to have friends, they have to go to school. It's not just medical care."
March 2008—When Dr. Pagakrong Lumbiganon speaks about her work with HIV-positive children at Thailand's Srinagarind Hospital, she chooses her words calmly, but at moments her voice catches with emotion. She has been treating infected children for more than ten years and every day she sees the limits of what doctors can achieve. "As physicians," she says quietly, "we can only provide maybe 20 percent of what children need."
Malaysia's Dr. Fong Siew Moy founded her own NGO in order to provide support services for her patients.
When Dr. Pagakrong first began working on pediatric HIV/AIDS, antiretroviral (ARV) medication was not yet available and children would arrive at Srinagarind Hospital in Khon Kaen, a province situated in northeast Thailand, in desperate condition. "A five-year-old child might weigh only four kilos," she recalled.
But even after ARVs became available, effective medication was not enough. Family and community support, she and her colleagues realized, were as important as medical care.Without a comprehensive set of services, the health of these children would remain in danger.
The importance of a network of care is an article of faith among HIV/AIDS pediatricians. As TREAT Asia steering committee member Dr. Annette Sohn stated at the network's September 2007 meeting, "The quality of the collaborative relationship between the caretaker and the child will determine the success of treatment." But putting that hard-won wisdom into action is a tremendous challenge across Asia, where government funding for pediatric HIV/AIDS treatment rarely covers support services of any kind.
Confronted with the need to effectively support the HIV-positive children under their care, some TREAT Asia-affiliated pediatric programs have been able to contrive a variety of innovative strategies to help them to offer a broader range of services. For Dr. Pagakrong and her pediatric HIV/AIDS team in Khon Kaen, teaming up with existing NGOs has offered one path. In Kota Kinabalu, Malaysia, another TREAT Asia Network pediatrician—Dr. Fong Siew Moy at Likas Hospital—raised money herself to found a nonprofit organization devoted to providing support services for the hospital's pediatric HIV/AIDS patients. And in Cambodia, John Tucker established New Hope for Cambodian Children as a comprehensive social services organization for HIV-infected children, partnering with the Cambodian government to provide medical care.
"We have to do more"
Dr. Pagakrong first began to treat HIV-infected children at Srinagarind Hospital more than 15 years ago when the outlook was desperate. "In 1992 or 1993, we had 90 kids with full-blown AIDS and 45 died, so we lost 50 percent," she said. "Those kids who did survive came for one or two visits and then they were lost to follow-up."
When ARVs became accessible, follow-up care became even more important, and it was then that Dr. Pagakrong and her colleague Dr. Pope Kosalaraksa (now the pediatric team leader) realized the extent of the challenge. "Our patients had other problems in their families. For example, they didn't have any money to travel to the hospital, and they faced the problem of having no shelter because of poverty, so how could two physicians help them?" asked Dr. Pagakrong.
"If you're looking at a family, you need to develop a holistic approach. We thought, how can we make them happier and more comfortable? So first we tried to invite NGOs to help us find money to support the families and allow the children to go to school."
Every Monday, Dr. Pope Kosalaraksa (left) and the pediatric HIV team at Srinagarind Hospital in Thailand meet to discuss the children under treatment.
Gradually, the pediatric HIV/AIDS team at Srinagarind Hospital has established relationships with multiple local, national, and international NGOs. Each organization supports a different aspect of social and family services. One full-time social worker, who is charged with providing home visits to families of HIV-positive children, is supported by one group, and psychosocial activities are supported by others. UNICEF provides funds for a holistic care team and to support group activities for the children and their caregivers, including camps in Pattaya and elsewhere. A French group has helped with transportation and emergency funds.
Srinagarind Hospital's pediatric care team consists of around 20 people—doctors (including Dr. Chulapan Engchanil, who works closely with the community), nurses, social workers, and local PWHAs. According to Dr. Pagakrong, "Everyone in the team joins because it's their own passion; they want to do this job."
One of Dr. Pagakrong's longtime patients is now in high school and she smiles when she mentions that the girl wants to become a doctor. Certainly the doctors at Srinagarind Hospital have much to be proud of. Still, Dr. Pagakrong worries about what will happen to her young patients as they come into adulthood. Shaking her head firmly, she says "We have to do more."
"The most important thing is adherence"
"You can see how important the community is to making something work," says Dr. Fong Siew Moy of Likas Hospital in Kota Kinabalu, on the island of Borneo. "But it has been hard to mobilize community support Malaysia. I have found that most of my patients are very, very poor, and I really need to give them social and financial support." While Malaysia provides ARVs for adults and children, like most Asian nations it offers no funding for support services.
"The most important thing with children's medicine is adherence. So I spend a lot of time talking to parents," Dr. Fong explained. "I've been looking after kids with HIV for six years and I've found that if parents don't understand what's going on, the child won't get the medicine."
Like other HIV/AIDS pediatricians, Dr. Fong recognizes the necessity of broadening the hospital's mandate to include support services, but Sabah, where Kota Kinabalu is located, is the second poorest state in Malaysia and it has been difficult to find financial support. "Just bringing the children into town for treatment is rough," she explained. "I realized that I'll run into many problems if I don't help them, and there was nobody else doing it at that time."
So Dr. Fong tackled the matter herself, founding an NGO that she named KASIH (Kota Kinabalu AIDS Support Services). Initial support for KASIH came from her friends and colleagues, and the process was slow.The ministry of welfare in Sabah declined to support the organization, but starting in 2004 the Malaysian AIDS Council began to provide funds.The next year, an HIV/ AIDS family center was finally opened near the hospital.
The founders of KASIH have found fundraising daunting—"I spend as much time raising money as anything else!," Dr. Fong laughed—but last year they came up with a surprisingly successful campaign in the form of a food fair. At first the response was poor, but then a local newspaper ran a story about Dr. Fong's young patients: some abandoned, others too poor to travel for care, many with HIV-positive parents, some with no parents at all.
A pharmacist in Khon Kaen, Thailand, explains to a young patients's grandmother how to administer antiretroviral medication.
"People had this idea that everything was taken care of by the government so why should they help?" explained Dr. Fong. "But after the story came out there was quite an increase in public donations." Ultimately, the food fair generated almost US$30,000, money that is being used to provide small but crucial initiatives such as reimbursing patients for transportation and food, and helping mothers buy milk powder for HIV-positive infants.
KASIH now has a full-time staff of three, including a project manager, a project assistant based in the center, and a project assistant based in the hospital.The organization also has a part-time nurse who provides counseling and support services in the hospital. And planning for additional programs is afoot. "I've managed to get some funds for a help line, so this year my goal is to train people to run that," said Dr. Fong. In the future, she's also hoping to establish a halfway house for families that have to travel to town for treatment, and she's hoping to train PWHAs to do home visits.
None of this has come easily. "This is quite a bit of work for me," she admits, "but I think if I moved away the organization would fall back. I'm the only one—sometimes I feel like giving up.
"My husband used to complain that I spent so much time with this. But as I've learned to separate my time a little bit, it's gotten better. Sometimes I feel low, but then someone talks to me about something and I think, that's a great idea! I want to do that!"
"This does not need to happen"
When John Tucker set out to found New Hope for Cambodian Children, his motive was simple enough. Six years ago, there were no ARVs available in Cambodia for HIV-infected children. "It didn't seem right to me that children were dying when medicines were available with a 45-minute plane ride into Thailand," he said.
As a Catholic lay missionary, he was initially working with the Maryknoll hospice in Phnom Penh. "We were a home-based care program providing food, education, nutrition, and home visits," he said. "We started our own clinic to get ARVs to kids because there were none. It's not OK for kids to die while you're waiting for a clinic to open."
In order to supply the clinic with medications, however, Tucker needed to find money. "Maryknoll didn't want to get involved with long-term lifetime medicine for children," he explained, "so they said, 'John if you want to do this you need to raise money yourself.' So I sent out tens of thousands of emails to churches in the US and asked parishes to sponsor a child for $45 a month. Only one out of 100 said yes. We raised the money one kid at a time."
The Maryknoll program was able to treat up to 400 HIV-positive children, but Tucker saw too many youngsters still without care. "I'm just a real stubborn person," he explained. "You see a kid dying of AIDS, you get real passionate. This does not have to happen." In July 2006, he struck out on his own and started New Hope for Cambodian Children, this time with ARVs supplied by the Clinton Foundation.
New Hope now offers a menu of medical and social services to HIV-positive children. "Some of our model was trial and error," Tucker admits. "You try one thing like home-based care and you realize that just to get children to the hospital is beyond the capability of these grandparents, so you develop a travel program. Then you need to make sure they have money to buy food so that along with ARVs they get proper nutrition. You tweak your program as you go along."
Unlike the pediatric HIV/AIDS programs in Khon Kaen or Kota Kinabalu, New Hope's starting point was providing support services; medical care had to come from elsewhere. Today, New Hope partners with the Cambodian government's National AIDS Control Organization and the Clinton Foundation, and together they are able to provide medical and social services for 750 Cambodian children living with HIV/AIDS.
The New Hope model also emphasizes an intensive process of monitoring children for drug adherence. As a result, Tucker said, "We have kids who've been on the same first-line meds for six years because they took it properly and they haven't developed resistance. They haven't had to go to second-line, which is a huge cost savings."
Tucker is fortunate to receive support from major donors such as the Clinton Foundation, but it took time to reach that point. So what would he suggest for other pediatrics programs that want to expand services? "I'd find local NGOs to partner with," he said. "A lot of countries have Global Fund money coming into NGOs and the government, and there's a lot of concern about orphans and vulnerable children. Find an NGO that really wants to make a difference in this area and see what you might be able to do."
For New Hope, making a difference means that the program is now treating 750 HIV-positive children in seven Cambodian provinces—a sign that hope yoked to hard work can transform the lives of children.