Caring for AIDS Orphans:
Jane Aronson and the WWO
One of the most tragic aspects of the global HIV epidemic affects those left behind. These are the orphans of parents who died from AIDS, or children abandoned because their parents were too sick to care for them. Early in the epidemic, extended families and villages could take on the care of these children, but as the virus has infected ever larger numbers of people in Africa and Asia, such traditional approaches have broken down. According to the World Health Organization, as of 2004 there were an estimated 14 million AIDS orphans in the world, and the expectation is for this number to grow to 25 million by the year 2010. In some sub-Saharan countries, WHO predicts that up to 25% of children will be AIDS orphans by 2010. Many of these children are themselves infected with HIV.
How to care for all these children? Jane Aronson, MD, a New York-based pediatrician, has taken on the global challenge of the healthcare needs of orphans, including AIDS orphans. Since the early 1990s, she has specialized in international adoption medicine, and she continues to provide preadoption counseling and advice about long-term health risks for parents considering the sometimes arduous process. Dr. Aronson is no stranger to the issues raised by international adoption. She and her partner have adopted three orphans: her oldest child Hilary from the United States, Desalegn from Ethiopia, and the youngest, Ben, from Vietnam.
With the goal of improving the lives of children living in orphanages, Dr. Aronson founded the Worldwide Orphans Foundation, or WWO, in 1997. She, and now many others as well, create and manage a number of innovative programs. Probably the most ambitious are the pediatric HIV clinics in Vietnam and Ethiopia, which provide both treatment for orphans and training for doctors and others who care for the children. WWO also runs "granny" early intervention programs in Bulgaria and a film and video program for teen orphans in Serbia, as well as the "orphan rangers," who volunteer to assess orphanages around the world. "I really feel like we're doing some wonderfully solid work," Dr. Aronson said.
"Our goal is to prevent abandonment of children," said Kashif Iqbal, Executive Director of WWO. Mr. Iqbal, who has a masters degree in social work, has worked extensively in this field, including working as a Peace Corps volunteer in the Balkans for five years and managing a large, community-based HIV/AIDS program in the Bronx, New York. "So while we provide orphanage-based care right now around the world, the goal is also to prevent this from happening. Children are being abandoned because their parents are infected and are also too poor in health to take care of their children. So we want to be able to intervene at that point also."
"We're also looking to improve the educational programs for kids in orphanages by providing them with more sophisticated curricula," Dr. Aronson added.
WWO has grown beyond being a one-person operation, as the scope of the programs and the number of sites has expanded. "It's not really about me doing that, it's about the people," Dr. Aronson said. Currently, there are two Vietnamese-Americans volunteer orphan rangers working in Vietnam, a Dartmouth graduate who starts medical school in the fall spending nine months in Ethiopia, and a group in Baku, Azerbaijan, launching an early intervention program. Dr. Aronson is also hiring a full-time administrator in Vietnam, a Vietnamese-American woman who escaped Vietnam as a young child and grew up in St. Louis. She has been very interested in returning and working in her country of birth.
A "Peace Corps" for Orphanages
Orphan rangers are volunteers who visit international orphanages to evaluate the health and medical needs of the children at these institutions and provide needed interaction with the children. Most rangers have been involved in healthcare in some way (although they do not practice medicine while acting as rangers). These dedicated people get to see first hand the experiences of children in orphanages in poor countries, especially AIDS orphans.
Orphan rangers have visited many parts of the world, continuing the pioneering work of Dr. Aronson. Since 1998, orphan rangers have visited facilities in Russia, Ukraine, Kazakhstan, Ecuador, Vietnam, India, Bulgaria, and Ethiopia. These visits help provide the groundwork for setting up clinics and other programs to benefit the orphans.
Robert Luo, a third-year medical student at the time of his visit, traveled to Tam Binh orphanage in Ho Chi Minh City, Vietnam for two months in 2004. He worked with more than 70 HIV-infected children in the orphanage. While there, he also helped Dr. Nguyen Trong Hau, WWO's Project Director in Vietnam, set up WWO's HIV treatment program, and he participated in the first pediatric AIDS training week held in that country.
In his journal from that time, he wrote a very touching entry describing the outcome of "Denver" scale evaluations, which are used by pediatricians to determine children's rate of development. Mr. Luo wrote, "When you consider how much effort parents put into teaching their kids every aspect of life, along with the physical and mental ills that lead many children to be orphaned in the first place, it's not surprising that as a group, these children do quite poorly on their evaluations. The developmental delay of these orphans is not something we'll be able to fix with our medicine. What these children need most is to not be exactly what they are now: orphans."
Another orphan ranger who visited Vietnam is Le Quynh Vo, MD, who visited Tam Binh orphanage for two months. She wrote, "Even at a very tender age, many of these children experience so much heartache and rejection, not only from their families but also from their communities, because of a disease they are not even aware they have. Yet Tam Binh is a safe haven where they are protected from these harsh realities. Here, people see beyond their disease to who these children really are -- sweet, caring youngsters who deserve love and affection just like any other child. Here they are fostered and nurtured to grow so that one day they have the strength to handle anything the world deals them."
Ethiopia: Barlow House and Plans for More
"The AIDS programs for orphans in both Ethiopia and Vietnam are very well developed," Dr. Aronson said. WWO has an HIV clinic in Addis Ababa, the Barlow House Clinic, which currently cares for approximately 100 HIV-infected children. Most of the children live at the AHOPE for Children orphanage, with about 20 children from a second, smaller orphanage, and 10 or so children from the community. This clinic provides overall health care as well as antiretroviral therapy, and WWO has recently added a school for these children. The director of the training and treatment programs in Ethiopia is Dr. Sofia Mengistu.
"The children that we're treating from the community are those who tested positive by an organization called the African Services Committee, based in New York," Mr. Iqbal, WWO's Executive Director, said. "They have voluntary counseling and testing sites in Ethiopia. They are going to be able to find a lot more HIV-positive children. They feel there are at least 500 HIV-positive children right now in Addis. We're treating at least a hundred of those, and that number is going to grow."
Dr. Aronson has big plans for AIDS orphan care in Ethiopia. "We are planning to build an actual pediatric AIDS center in Addis Ababa," she said. In addition to a large dedicated AIDS clinic for both the children and infected family members, there are also plans for a full-blown youth center. "We will have a K-12 school based there, counseling programs, youth development programs, programs that can provide support and assistance to the family, arts programs, and drama programs," Mr. Iqbal said. Dr. Aronson added, "We're going to have an open air Greek theater, and some playgrounds and a soccer field, and make what we consider a comprehensive health care and community center." Although it is too early to have a target date for this clinic and school, they hope to have the program funded and built within two years.
WWO plans to introduce an unusual element for the children in Ethiopia. A small troupe of actors will travel to Addis Ababa in April to conduct a drama workshop with the children from AHOPE orphanage. They hope to create a skit or play about the lives of these HIV-positive children, which they will then perform for the community. A volunteer dentist will also soon visit Addis Ababa to assess the need for and feasibility of a dental clinic for the orphans.
Orphanage-Based Clinics and Training Programs in Vietnam
"We're going to be expanding our Vietnam HIV program, that we have now at three sites in Vietnam," Dr. Aronson said. "These are orphans being treated for HIV infection with antiretroviral therapy." These programs are funded in part by grants from USAID and Bristol-Myers Squibb. The three sites in Vietnam are Tam Binh orphanage in Ho Chi Minh City, Ba Vi orphanage in the north near Hanoi, and Vung Tau orphanage on the coast in the south. WWO currently cares for approximately 70 orphans in Vietnam.
HIV medicine is a complex field, with more than 15 drugs now available and many combinations to choose from, depending on the patient's experience and the resistance patterns of the virus. With a virus that mutates so rapidly, it is important to use the correct drugs and the appropriate combinations to avoid the development of resistance and the possible loss of a drug -- or a whole class of drugs -- in the future. Training is therefore a critical part of providing optimal care to HIV-infected persons.
"We're providing training for doctors in Vietnam, so they learn how to take care of patients on their own and manage them long term," Dr. Aronson said. WWO held its first pediatric HIV training program in Ho Chi Minh City in 2004, which was attended by 26 local doctors, nurses and other healthcare providers. Two week-long training sessions were run in late March and early April this year in Vietnam, first in Ho Chi Minh City and then in Hanoi, which is near Ba Vi orphanage. These sessions are being led by Philip LaRussa, MD, a pediatric AIDS specialist from Columbia University, along with other Columbia physicians. "Everyone donates their time. The prep work is intense in order to prep for a week-long training," Mr. Iqbal said. "There are all kinds of people doing all kinds of wonderful things in healthcare, who just want to give back."
Bulgaria and the "Granny" Programs
WWO does not limit its work to HIV-infected orphans. A number of their programs, including those in Bulgaria and Serbia, serve the health, developmental, educational, and emotional needs of all orphans.
A critical aspect of childhood is the attention a parent gives a child. Unfortunately, in many orphanages, this attention is lacking. WWO has begun to address this deficiency in Bulgaria, a country with a very large orphan population, with a "granny" program, or early intervention project. The "grannies" are retired teachers or health care workers who have the time and experience to interact with children on a long-term basis. "We hire retired educators, teachers, from the community," Dr. Aronson said. "They work in the orphanage full time, taking care of a few infants and children, improving their development and their future." The role is demanding -- working with the same two children four hours a day, five days a week, for a minimum of one year. This consistent involvement is a great improvement in the lives of the orphans.
"This is an early intervention program, so that the children have consistent care and develop an attachment to a primary person," Mr. Iqbal said. "They work as childcare workers, but they're able to provide some psychological support, developmental support, emotional support for the children one on one that orphanage-based caregivers might not have the time to."
WWO opened its first granny program in 2004 in Bulgaria with the help of Dr. Jill Cole, a child and family therapist with extensive experience in the former Yugoslavia and Eastern Europe. The program is running at the Mother Baby Home in Targoviste, and it is supervised by a psychologist from Milossardie, a Bulgarian child welfare and adoption agency based in Sofia. WWO recently began a second program in Russe, Bulgaria, and they are looking to increase the number of early intervention programs in Bulgaria, perhaps to five, in 2006. "There are seven other orphanages we are looking at," Dr. Aronson said. They also in the process of starting a granny program in Baku, Azerbaijan.
Serbia and the Video Program
Dr. Cole also played a significant role in setting up a special program for 12 teenage orphans at the Children's Home Mladost in Kragujevac, Serbia. "We have the Serbian film program, where we're teaching kids how to make films about their past," Dr. Aronson said. "These are kids who are refugees from the wars of the '90s, and they're going back to look at their roots." Many of the children in this orphanage ended up there because of the disruptions and dislocations of the fighting during the 1990s. When Dr. Cole asked the teens what kind of project they would like to participate in, they "suggested an activity that would help them learn an employable skill, such as photography, and enable them to reconnect with their past," Dr. Cole wrote. With the help of filmmaker Randy Bell, they began to learn digital photography and videography.
"We work with older teenagers in Serbia, not the usual cohort of younger children that we have in our other programs," Mr. Iqbal said. "We work with a cohort of teenagers to help them reconnect with their families or with their past, develop a history for themselves, and resolve any unresolved emotional issues that they have as a result of abandonment. It's very emotionally intense work."
Perhaps the most touching part of the Serbian program is that it does not end at the orphanage door. "We are also supporting them," Dr. Aronson continued. "If they graduate the orphanage and go on to the university, we support them financially in their in their endeavor to be university students."
About Angels in Medicine
Angels in Medicine is a volunteer site dedicated to the humanitarians, heroes, angels, and bodhisattvas of medicine. The site features physicians, nurses, physician assistants and other healthcare workers and volunteers who reach people without the resources or opportunities for quality care, such as teens, the poor, the incarcerated, the elderly, or those living in poor or war-torn regions. Read their stories at www.medangel.org.