KYOUNG YANG KIM

[Fall 2006, Volume VIII]

Not only does HIV slowly strip away the life of a patient, but it also deforms the social structure around her. Like a stone thrown upon a pond, HIV/AIDS creates ripples that perturb the family. Its effect spreads to every part of society.

Peter McDermott, chief of the Global HIV/AIDS Program under UNICEF, has addressed in an AIDS orphan conference in Asia what he considers the three stages of HIVinfection. The first stage is the time of infection. The second stage is what he calls the cumulative factor: people
start developing symptoms of AIDS and eventually die. The last stage impacts children left without a mother or father—orphans.

Since the first report of an AIDS case, it has taken governments more than a decade to recognize the gravity of the situation. Some have suppressed the media to deny any evidence that there is an HIV/AIDS epidemic in their countries. In Romania, the government ceased the investigation of children in Bucharest Hospital who were suffering from AIDS; they called AIDS a “plague of the decadent West.”1 Now that the global community sees the destruction caused by AIDS, we are slowly learning the scope of this monstrous disease.

AFRICAN ORPHANS: THE FORGOTTEN VICTIMS OF AIDS

Every death from AIDS is a disgrace to human dignity. Leaders of African countries describe deaths from HIV/AIDS as an “extermination,” “annihilation” and even a ‘holocaust.’Stephen Lewis, U.N. Special Envoy for HIV/AIDS in Africa, expressed with desolation the unimaginable reality of “people [dying] in such hallucinatory numbers.” In fact, 2.9 million people have died from AIDS by the end of 2003—2.2 million of these were from sub-Saharan Africa.3 With the highest HIV/AIDS prevalence rate of 64 percent, 74 percent of AIDS deaths worldwide come from sub-Saharan Africa.  What is also alarming is that the epidemic leaves many children orphaned. In 2001, 2.5 million AIDS deaths produced 11.5 million orphans. In 2003, 2.9 million deaths occurred, increasing the number of orphans to 15 million.

Even when HIV prevalence rates are reduced, the incubation period between the second and third waves of infection creates many more orphans through time. In Uganda, where the fight against HIV/AIDS is considered a model of success, the number of orphans rose from 884,000 in 2001 to 940,000 in just two years.6It is noted that the HIV-prevalence rate decreased from 5 percent to 4.1 percent in these years.7 Perhaps as Lewis said, these numbers are just too huge to comprehend.

Young women of reproductive age are the main targets of HIV/AIDS. Studies show that women between the ages of 15-24 make up 76 percent of all HIV/AIDS patients in sub-Saharan Africa.8 Marriage at an early age is very common in African countries. In Niger, the average age of a bride is 15. Moreover, marriages often occur between young girls and older men, and the age gap can be up to 15 years, as it is in Cameroon.9In this cultural context, women have less power when it comes to sexual relationships and protection from STDs including HIV/AIDS. Since the men usually transmit HIV/AIDS, marriage can be  fatal for young women.  What will happen to the children of these women? Prospects for their future are quite uncertain. The orphans are caught in a crisis—what former U.S. Secretary of State Colin Powell calls “more devastating than any terrorist attack, any conflict or any weapon of mass destruction.”

THE ORPHAN CRISIS IN DEPTH

McDermott emphasized that orphans experience “disparity on nutrition, education, healthcare, [and] massively on psychosocial impact.”11 Orphans are often passed on to extended families or foster homes. Foster, in AIDS in Africa, notes that these orphans are taken care of by the “poor and elderly.”12Orphans in Kenya mostly live in foster homes below the poverty line. Orphanages, the last resort, are not well supported by the government.

According to Emma Guest in Children of AIDS, the South African government favors keeping AIDS orphans in foster homes because it costs less than supporting them in orphanages.13Life expectancy has declined in most sub-Saharan countries due to HIV/AIDS. In a few years, the disease will destroy the most crucial part of the population and distort the population pyramid into the so-called “population chimney.”

The loss of a parent significantly impacts household income. Foster writes that the difference in per capita income between orphan and non-orphan households in Uganda is 15 percent.15In rural Zimbabwe, only three percent of orphaned households have a family member who is employed. The orphan shoulders the burden of generating an income. They  must quit school to be the breadwinners of the household.  Studies have shown that maternal care correlates to the health of the child. The longer the mother spends time with her children and the more educated she is, the more likely the child will be healthy. Research conducted in Sudan showed that infant mortality rose by 27 percent, ten percent higher than usual, when the mother works in the labor force.  The more educated the mother, the more assertive she is in taking decisions regarding her child’s health. Achild dies from lack of attention—if he/she is malnourished or not taken to receive medical care at the right time, the child’s health will deteriorate. Caregivers may not be well-educated about the child’s needs such as nutrition, ORT(Oral Rehydration Therapy) for diarrhea and in recognizing serious illness.  Astudy conducted in rural Zambia found that orphans were more likely to be ill than non-orphans.

Another study conducted in Ethiopia showed that children in an orphanage were slightly more likely to suffer from stunted growth than their non-orphan counterparts.19 In the urban Kenya, orphans suffered more malnutrition than non-orphans.20 One of the less recognized effects of orphanhood is the psychosocial impact on the child. This is often neglected as it is not an immediate threat. Many children experience death of more than one family  member:

“These kids don’t become orphans when their parents die. They become
orphans while their parents are dying…I can’t tell you how many huts I’ve
entered where a [sick] woman is lying frail and spectral on the floor,
unable to raise [her] hand or head to say hello to a visitor…and then I
look around me—[there] are her children, standing in the hut, watching
their mothers die.”

Lewis claims that at a school he visited, the kids wrote about death as the most disturbing thing in their lives.22The separation of children from their siblings also stresses on them. The children may become more aloof and look distressed.23Children often fear stigmatization from signs of poverty, especially from their classmates. Studies have shown that depression is highly prevalent in children 10-14 years of age who have experienced maternal loss.24 Longitudinal research shows long-term impacts on orphans. They may grow up and become adults diagnosed with “chronic traumatic stress syndrome,” developing signs of severe depression, alcohol, drug abuse and violent behaviors.

Aside from the psychosocial impact, vulnerability to HIVinfection increases as children are orphaned. As children are taken away from parental homes, lack of adult protection heightens their risk for child labor, sexual abuse, exploitation and HIVinfection. Research conducted in a rural part of Zimbabwe showed that young women who have early sexual debuts and marriage are highly unlikely to complete secondary education and have higher risks of HIV infection.

There is no one solution to help all 15 million orphans around the world. However, by studying the past, we can see examples of effective intervention. The Romanian experience serves as a model that can be used in sub-Saharan Africa and other parts of the world.

THE ROMANIAN MODEL

In 1989, a media report focused the international community’s attention on Romanian orphanages. The report included disturbing images of babies barely covered in filthy rags, hiding behind iron-wrought beds like prisoners behind bars. Their eyes were diverted from the camera, forlorn and wandering. Scrawny babies were wrapped tightly in bundles. They were so inert that the journalist asked if they were still alive. In these squalid state-run orphanages set up by the Romanian dictator Nicolae Ceausescu, children were “left to wallow in their own filth and die from malnutrition and disease.”27 Even by 2001, the conditions had not changed much. The European Parliament’s special envoy to Romania, Emma Nicholson, described the orphans’ life as “daily beatings and assaults, food deprivation leading in some cases to starvation, sexual abuse, and lack of proper medical care.”

Before his assassination in 1989, Ceausescu enacted heartless policies to boost Romania’s population to 30 million by the end of 2000. Families were forced to have at least five children. Contraceptives, birth control and abortion were banned. Incentives were used to make the policy more appealing. Monthly stipends were given to every household with a new baby, the sum equal to a fifth of a low-income worker’s salary. Dire poverty in Romania did not allow for all the newborn children to be raised by their biological parents. As a direct result of Ceausescu’s policy, over 150,000 children went directly into orphanages.  Shockingly, one of the first cases of HIV infection ever reported happened in one of these orphanages. By 1990, about 94 percent of Romania’s 1168 HIV-related cases were reported from children under 13 years of age.31 Later studies have revealed that nocosomial infections—the use of improperly sterilized needles—was the cause of the mass outbreak.

The lack of well-trained nurses to administer health care and a lack of medical supplies resulted in the reuse of needles and syringes. To make things worse, blood for donations was not tested before 1990 due to the lack of a national surveillance system for HIV/AIDS.32 Innocent infants became HIV-positive, not as a result of vertical transmission but rather due to an “epidemiological accident.”  This incident has left between five and seven thousand children living with HIV/AIDS today in Romania. Children in Romania currently represent half of all European pediatric cases of HIV/AIDS.

Yet intervention was possible once the Romanian government recognized the extent of the disease and the need for foreign assistance. In a statement that acknowledged the government’s responsibility for the crisis, former Romanian Prime Minister Petre Roman publicly stated, “Blame us, but help us.” Once the government recognized the problem, collaboration amongst several entities—a U.S. private academic institution, a Romanian healthcare institution, corporate and private foundations, faith-based organizations and the U.S. government—bore positive results. The Baylor College of Medicine, with funding from other organizations, launched the Baylor International Pediatric AIDS Initiative in collaboration with the Romanian Ministry of Health and Family. The initiative, founded in 1996, provided technical assistance to educate and train physicians and nurses in treating pediatric HIV/AIDS. Subsequent to the preparative efforts, HAART—Highly Active Antiretroviral Therapy—was launched with donated drugs from U.S. pharmaceutical companies.36 The Romanian-American Children’s Center was opened in 2001. It is now home to more than 600 HIV-infected children and has used HAART to treat a large number of them. Casa Speranta, “House of Hope”, was founded by a California-based Catholic group to accommodate abandoned children in a family-style care setting.

What stands out in the Romanian case is the involvement of an academic institution like Baylor in building a medical facility. Foreign aid has empowered the community by training physicians and nurses. It has also lifted the stigma of treating HIV-positive patients. Academic institutions are more dedicated and focused in their work than other organizations and are less likely to take on multiple projects, unlike major donor foundations. Academic institutions also beget future generations of doctors, scientists and scholars who are exposed to the intervention. Students at the Baylor College of Medicine will likely be interested and involved in the work that the college is doing in Romania. Study abroad programs can be utilized to not only teach students about current events and apply their classroom knowledge, but also to plant seeds so that the next generation of doctors and volunteers can work in Romania.

Furthermore, partnership increases funding capabilities. Collaboration amongst several entities and the inclusion of major pharmaceutical company — in this case, Merck — has helped in funding. Merck had lowered the prices for Stocrin and Crixivan, drugs used in the treatment of HIV, to 14 percent of their original cost.37 NGO involvement was also effective in capturing the attention of government officials. ARV (antiretroviral) treatment was possible through funding by the Ministry of Health and Family. Future collaborations may form between the local NGOs and the government, in the absence of a third foreign organization.

LESSONS FROM ROMANIA; CHALLENGES FOR AFRICA

Helping AIDS orphans is an overwhelming task for each African government. As in the Romanian case, this burden should be shared by the global community. It is an unfortunate truth that funds are inadequate and that foreign donors favor cost-effectiveness over all else. Can this paradigm be challenged? Organizing health programs in Africa is an enormously difficult job. HIV/AIDS is not only the killer disease in Africa; 1.5 million new cases of tuberculosis, diarrhea and other infectious diseases plague the continent each year.38 Africa cannot face these challenges alone. The average annual health expenditure in sub-Saharan Africa, excluding South Africa, is only $6 per person.21 Only $165 million was spent in 1999 for the prevention of HIV/AIDS; this was 10 percent of the estimated necessary health expenditure.39 Hamoudi, who wrote extensively on the economics of AIDS, states that donors pay less than $1.30 per person in Africa for all health programs.40 This is clearly inadequate, but with enough funding, the situation can improve. Efforts in Romania have proved that ARTtreatment can be effective in a resource-poor setting.

While scholars and government officials debate how to use limited funds, we should keep in mind what we have promised for our future. How about our vows to achieve the Millennium Development Goals and uphold the Convention on the Rights of the Child? The global community should base its decisions on the best interest of the children, and quick action should be taken to save lives.

While Guest thanks African governments for not building orphanages, I believe that setting up orphanages in parts of sub-Saharan Africa can save the children in most need. Guest expresses that “children rarely thrive in such places” and Gloviczki, in his article about Romanian orphans, states that state-run Romanian orphanages have “failed to provide [children] with adequate education and emotional development.”41 What they are saying is true; orphanages have not provided the nurturing environment in which children need to grow and develop. However, the present situation is untenable. Currently in Africa, orphaned children are first handed over to their immediate relatives. When the relatives can no longer take care of them, they are handed over to their grandmothers. In fact, grandmothers are hailed as the heroes saving the future generations of Africans. But for how long can we count on the relatives and the grandmothers of these children? Finding foster homes will also be difficult.

Life expectancy in these countries is declining as a result of HIV/AIDS. As the endemic progresses, child-headed households will become common. We cannot allow children to face this alone. We need to build orphanages to help them grow, orphanages which will provide them with education, healthcare, emotional support and many other needs. Orphans affected by HIV/AIDS, whether or not they are HIV-positive themselves, will need more care than others. As one orphanage staff worker implored, “If orphanages don’t exist, what’s going to happen to these children? They’re going to die. I know it’s not right but I can see, like in the old days, huge big orphanages having to open up. Otherwise children will starve and there will be masses of street children.”

PRESCRIPTIONS FOR THE ORPHAN CRISIS

African governments need to work with outside NGOs and governments to build orphanages and start programs that help children find foster homes. The government should ensure that children with the greatest need get attention first. While finding foster homes will be extremely difficult, children can at least be placed in orphanages. Research conducted in Malawian orphanages has found that these orphans had better “lodging, health care, food quantity and variety, clothing and school supplies.”43 Orphans in these settings found their caregivers “compassionate and loving.” In Ethiopia, childrens’ self-esteem was actually higher among those living in orphanages than non-orphans living with their families.15 This can be attributed to the support orphans receive from caregivers and peers. In a famine-ravished country like Ethiopia, living with the family is more “detrimental” than living in an orphanage.

Orphanages should be integrated into the community. To empower the community so that they can maintain these orphanages, staff workers should be locally hired and trained. One of the challenges that orphanage children face is building a stable relationship with an adult. This can be mitigated by maintaining a low child-adult ratio in the orphanage.

Following the intervention in Romania, academic institutions in other countries can give a helping hand to African children. Medical facilities can be built next to orphanages so that the children and the community can receive adequate healthcare. Scholars on child development and education can help improve programs in orphanages. NGOs can also help to provide education, emotional support and other services for these children. NGOs should fund schools to provide education for orphans and also increase awareness of HIV/AIDS. Psychosocial support is important for the well-being of the orphaned children. The Masiye Camp in Zimbabwe provides support for AIDS orphans by organizing camps and outdoor activities.46 The camp also invites non-AIDS orphans to prevent stigmatization. Anthropologists and psychologists should conduct research on how Africans deal with grief and develop a method to help children in a culture where death is still a taboo conversation topic.

The work of NGOs cannot be accomplished without volunteers. There are many ways for volunteers to get involved. First and foremost, creating awareness in countries where HIV/AIDS is not a common presence is crucial. I believe that visual presentations will have a long-lasting impact on those in the developed world. Volunteers with artistic skills, for example, can use photography to produce international photo campaigns exhibited in museums. They can lecture about the situation and describe what ordinary people can do to help AIDS orphans.

Second, volunteers in faith-based organizations can create and work in camps like the one in Zimbabwe. Volunteers in these organizations are compassionate and can provide emotional support to these children. Energetic student volunteers can help the youth in the camps. They can also help scholars conduct academic research in these areas. HIV/AIDS strips away human dignity. When asked what she desired for her future, Alina, a street orphan in Romania, shrugged, shook her head and said, “’I want to die…It’s just like that.’”47 I’d like to believe that there is hope for these orphans. I’d like to believe that a hopeful future lies ahead.

Kyoung Yang Kim is a Northwestern University senior in the Weinberg
College of Arts and Sciences. This paper won first place in NJIA’s semi-
annual essay contest.