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By Aditi Sen
Children in HIV/AIDS-affected households begin to suffer even before a parent or caregiver has died. Household income plummets, schooling is interrupted and many children are forced to work or care for a sick parent. But India has no national policy to address the impact of HIV/AIDS on children in particular
At the age of four, Gopi has seen first his father and then his mother succumb to HIV/AIDS. Gopi and his sister Siri have not been tested yet but are most likely to be infected. They live with their grandmother in Vijayawada.
On the surface, Vijayawada appears to be the quintessential bustling Indian city -- a booming centre of commerce and industry. But behind this seeming prosperity lurks a disturbing threat. The National AIDS Control Organisation (NACO) has identified this part of Andhra Pradesh as one of the highest-risk zones for the prevalence of HIV/AIDS, where the epidemic is rapidly crossing over to the general population from high-risk groups.
More alarming are estimates that suggest that the city has over 30,000 AIDS orphans. Parentless and homeless, civil society organisations working in Vijayawada say many of these children have been forced to drop out of school and beg on the streets.
India today is home to the largest number of AIDS orphans in the world (the UN estimates children orphaned by AIDS as those under the age of 18 who have lost one or both parents to the disease). While India’s AIDS orphan crisis is not as dire as Africa’s, it is on the trajectory Africa was during the last decade. With widespread migrant labour, prostitution and a stigma about sexually-transmitted diseases causing an explosion in AIDS cases, India is expected to become the next epicentre of the AIDS orphan crisis. Though there are no government figures in the country for the number of children affected by AIDS, World Bank estimates suggest that the number of children in India orphaned by AIDS is approaching 2 million.
While the statistics on HIV infections in India is the subject of ongoing controversy, what is undeniable is that India is at a critical juncture of the HIV/AIDS pandemic. Despite the low sero-prevalence rate, in absolute terms India is second only to South Africa in the number of people living with HIV/AIDS. This is compounded by the fact that there are several localised sub-epidemics in states such as Maharashtra, Andhra Pradesh, Tamil Nadu, Manipur, Karnataka and Nagaland.
The escalating AIDS crisis is leaving an unprecedented number of children orphaned with little or no adult protection and care. The proportion of orphaned children is expected to double in the next five years and remain exceptionally high until 2020 or 2030. Given the long incubation period between infection and the onset of symptoms, the epidemic’s impact will linger for decades even if the rate of new infections is brought under control. The orphan crisis is also likely to have an impact on the country’s economic and social fabric.
The odds against AIDS-orphaned children are staggering. These children are vulnerable to a number of risks ranging from social exclusion and economic deprivation to illiteracy, malnutrition and exploitation. They are also at increased risk of contracting sexually-transmitted diseases, abuse and drug use, with many young girls turning to prostitution in order to survive. AIDS orphans are often shunned by their communities; many are denied property rights and rights to inheritance. Those who cannot be taken in by their relatives end up living on the streets.
Children in HIV/AIDS-affected households begin to suffer even before a parent or caregiver has died. Household income plummets. Schooling is often interrupted and many children are forced to drop out either to care for a sick parent or to earn money. Depression and alienation are common. Another worrying phenomenon is the emergence of child-headed households. With parents gone, children have to take on the responsibility of earning money, looking after younger siblings and running households. The threats and challenges these children face is compounded by the emotional trauma of losing parents and the stigma associated with the disease, which marks them out as a new class of untouchables.
Experts say that India’s crisis is becoming acute in part because the country has no national policy to specifically address the impact of HIV/AIDS on children. The plight of AIDS orphans goes virtually unnoticed as most of them are being left to fend for themselves. Intervention options for providing care and support to orphans in the country are limited. India has little experience with community-based care, and institutional care is often relied upon as the most common form of intervention. However, even the number of orphanages providing short-term care for AIDS orphans is insufficient. In Andhra Pradesh, for example, a state with a population of 79 million, there is only one orphanage with a capacity for 20 children.
A more fundamental concern is whether there is sufficient commitment at the government level to combating the epidemic. As the epidemic spreads, the battle against AIDS is mired by a lack of consensus on the extent of the pandemic, the right strategy to combat it, and how to deal frankly with the issue of sexuality. The Indian government has been criticised for clinging to the idea that the epidemic is limited to ‘high-risk groups’ like sex workers, drug users and truck drivers. But this approach no longer reflects the reality of at least some Indian states, where the epidemic is in the general population.
With regard to anti-retroviral (ARV) drugs, despite the fact that India is a major producer of cheap generic copies of many HIV/AIDS drugs that are being sold all over the world, ARVs are affordable and accessible only to a tiny fraction of people in need of treatment. India’s spending on public health has also, historically, been very low. India spends almost a ninth of what Uganda spends per person on HIV treatment and prevention. On a more positive note though, earlier this year NACO announced that it would more than double its annual budget to Rs 4.2 billion (US$ 96 million) to combat the disease.
Supporting and protecting children affected by HIV/AIDS requires generating a sense of shared responsibility and vision. The debilitating impact of children affected by AIDS needs to be countered by strong and nurturing community and family support. Orphanages are the least effective form of care for reducing AIDS-related vulnerability among children.
Interventions must respond to the need for large-scale and long-term effects that both directly and indirectly impact on orphaned children. Recent guidelines developed by Unicef focus on child-centred, family and community-oriented, and human rights-based principles. This calls for building national systems of care that support local coping, establish and enhance community systems of care, and strengthen partnerships between various government and non-government organisations. Fundamental steps in building a supportive environment include involving children and families affected by HIV/AIDS in care and treatment strategies; increasing awareness of the impact of HIV/AIDS on children and families; and reducing fear, ignorance, denial and discrimination by increasing access to information, challenging myths and transforming the public perception about HIV/AIDS.
In a country with over 1 billion people, 2 million might seem like a small figure. But playing the numbers game is counterproductive -- and perhaps callous. We need to move beyond feeling beleaguered to feeling outraged by the unacceptable suffering of these children. Because behind the numbers are young people whose lives are at stake -- a generation that’s being denied its hopes, aspirations and rights.
(Aditi Sen works on Community Driven Development & Participation and Civic Engagement. She is with the Social Development Department of the World Bank, Washington.)
InfoChange News & Features, December 2005 |
