HIV/AIDS in India

Studies show that there are 2 million children in India that have lost one or both parents due to AIDS.[15] There are also millions of vulnerable children living in India, or children "whose survival, well-being, or development is threatened due to the possibility of exposure to HIV/AIDS."[15] Because there are many new cases of AIDS epidemics in various parts of India, the number of these AIDS orphans will continue to grow.[16]

Due to the negative treatment and lack of resources for these children, AIDS orphans and vulnerable children (OVC) in India are "vulnerable to be malnourished, uneducated, stigmatized, and discriminated." Specifically, the discrimination and stigma surrounding HIV/AIDS has resulted in many health and educational disparities for children orphaned by AIDS or children with an HIV-infected parent. These orphans are also at high risk for becoming infected with HIV themselves, child labor, trafficking, and prostitution.[17]

AIDS orphans are usually taken care of by extended family members after the passing of a parent.[18] These extended family members may be vulnerable as well, as they are often elderly or ill themselves. A human rights study from 2004 found that many AIDS orphans felt that "their guardians felt like they could demand anything of them"[19] because no one else could take them in. These children may be forced to look after a sibling or other family members, so they live in their original home even after parents are deceased. The children may be worried about seizure of land by landlords or other neighbors.[20]

Due to the stigma surrounding HIV in India, children of HIV-infected parents are treated poorly and often do not have access to basic resources. A study done by the Department of Rural Management in Jharkhand, India showed that 35% of children of HIV-infected adults were denied basic amenities.[15] Things like proper nutritious food are often not given to AIDS orphans by their extended families or caretakers.[20] This, combined with the abuse that many orphans face, leads to a higher rate of mortality among AIDS orphans.[21] Higher education rates in caregivers has shown to decrease this stigma.[22] AIDS orphans are often not allowed in orphanages because of the concern that they could have AIDS themselves.[23]

AIDS orphans were more likely to be bullied by friends or relatives due to the prevalence of stigma against HIV/AIDS in India.[24] People may believe HIV can be contracted by proximity, so these orphans lose their friends.[25] Often, women widowed by HIV/AIDS face blame for the outcome of her orphaned child,[26] while families face much isolation during the time of illness and after. Parents often lose their jobs due to workplace discrimination.[27] The Human Rights Watch has found many cases of sexual abuse among female AIDS orphans, which often result in trafficking and prostitution involvement.[19] Policy studies have shown that an increase in quality HIV treatment and care can drastically decrease this discrimination and stigma.[22]

The emotional and social effects on AIDS orphans are very detrimental to their health and future life. Specifically, the mental health of AIDS orphans in India is shown to be poor as compared to children who were orphaned by other factors.[24]

Before becoming orphans, children whose parents suffer from AIDS face many obstacles. There is "tremendous emotional trauma" associated with having a parent ill with HIV, and the child often worries about resource scarcity, being separated from siblings, and grief of the impending death of the parent.[27] While the parent is ill, the child experiences long periods of uncertainty and episodic crises, which decreases the child's sense of security and stability.[28]

A study done in orphanages in Hyderabad, India showed that orphans in India who have lost one or both parents to AIDS are 1.3 times as likely to be clinically depressed than children orphaned due to other reasons.[24] The study used The Center for Epidemiologic Studies Depression Scale (CES-DC) to measure depression in children orphaned by AIDS and children orphaned by other reasons. The mean depression score for AIDS orphans was 34.6, while that of other orphans was 20.6. When questioned, 58.3% of AIDS orphans answered “I felt like crying” a lot as compared to 20.8% of children orphaned by other reasons. 60.3% of AIDS orphans also answered “I felt sad” a lot, while only 20.8% of children orphaned by other reasons answered the same level. In addition, the study showed that the bulk of the depression score was concentrated among children of younger ages for AIDS orphans, while in other orphans it was mostly seen in older children. A distinction was also made between genders; girls orphaned due to AIDS had a higher rate of depression than boys.[17]

Studies also show that the likelihood of post traumatic stress disorder is common among AIDS orphans. In a study done in South Africa of the mental health of 60 orphans, 73% of the HIV orphans were shown to have PTSD.[29]

Another study done on mental health of different AIDS orphans around the world showed more behavioral problems later in life as compared to other vulnerable children.[29] For example, AIDS orphans were more likely to smoke, be engaged in crime, and drink alcohol.[29]

While further studies about mental health in AIDS orphans in India is limited, a study done in South Africa showed that AIDS orphans viewed themselves as having "no good friends" than non-orphans.[29] However, they were less likely to have anger problems. The orphans in this study also showed more frequency of nightmares.[29]

Because AIDS OVC often have many family members either deceased or ill, these orphans are often forced into taking jobs at a young age in order to provide for the rest of their family, resulting in lower attendance at school or being forced to drop out from school completely. For example, orphans that have lost their father due to AIDS are forced to take on field or manual labor jobs, which may be high risk occupations. Orphans that have lost their mothers take on housework and childcare. Girls are more often taken out of school to help with domestic work and care for sick parents.[23] Studies show that 17% of children with HIV-infected parents took on a job to assist with household income.[15]

The cost of treatment for HIV is so high that many families often do not have the means to pay for care or education of the child.[21] If a child is forced to drop out of school in order to take on additional responsibility at home due to the illness of his parent, the child is named a “de-facto” orphan.[15]  There has been no correlation found between gender and risk of poor educational outcomes or risk of dropping out of school.[30] Because of stigma, many AIDS orphans are expelled from school.[23]

In a study on education of orphans in India, the caretaker’s health was found to be very important in determining If the orphan was at a target educational standard.[30] When a primary caregiver was in poor health, the odds of the orphan being in the target grade level decreased by 54%.[30]

The prevalence of AIDS orphans around the world has been shown to be a threat to economic development in many countries.[25] Because AIDS orphans have a lower chance of completing primary and secondary education, they have a lower chance of entering professions that depend on education level and professional training. These orphans will be more at risk to grow up and engage in high-risk behaviors, resulting in more chance of HIV transmission. Therefore, countries may face a cycle of national poverty and low economic development due to the prevalence of AIDS orphans.[25]

While much research has gone into community programming for AIDS orphans, only a few efforts focus on saving the lives of the HIV-infected parents themselves.[31]

When comparing institution based care verses community based care, studies have shown that there is less discrimination in the former.[22] However, the government of India has used institutionalizing orphans as the norm, and have not fully explored other options like fostering or community based care for AIDS orphans.[23]

India pledged to provide better resources for AIDS orphans at the UN General Assembly Special Session on HIV/ AIDS in 2001.[20] In 2007, India was the first country in South Asia to create a national response to children affected by AIDS.[32] India created the Policy Framework For Children, which acknowledges the goal of providing the resources for at least 80% of children affected by HIV/AIDS. This policy takes a rights-based approach However, this policy fails to address many social determinants of care of AIDS orphans including the social stigma and discrimination, lack of education, and proper nutrition.[15]

Beginning in 2009, The Department of Women and Child Development in Karnataka allocated $200,000 to address the inequalities that AIDS orphans face. Most of this budget was unspent when evaluated 1 year later.[20]

The Juvenile Justice (Care and Protection of Children) Act of 2015 was created to provide orphans and vulnerable children in India with the resources and care necessary to reintegrate them into society.[17]

AIDS Clinic, McLeod Ganj, Himachal Pradesh, India, 2010

HIV spending increased in India from 2003 to 2007, and fell by 15% in 2008 to 2009. Currently, India spends about 5% of its health budget on HIV/AIDS. Spending on HIV/AIDS may create a burden in the health sector which faces a variety of other challenges like malaria, diabetes, heart disease and cancer. Thus, it is crucial for India to step up on its prevention efforts to decrease its spending of the health budget on HIV/AIDS in future.[34]

However the government has drastically reduced the social spending on health affecting the NACO programmes. Low procurement of condoms and laying off health workers have concerned the authorities working in the field that it will have a very negative effect on programme.

Apart from government funding, there are various international foundations like UNDP, WorldBank, Elton John AIDS Foundation, USAID and others who are providing funding for HIV/AIDS in India.[47][48][49]

Responding to a petition made by NGO's, in December 2010, the Supreme Court of India directed Indian government to provide second-line Antiretroviral Therapy (ART) to all AIDS patients in the country, by warning the government against abdicating its constitutional duty of providing treatment to HIV positive patients on grounds of financial constraint, as it was issue of the right to life guaranteed under Article 21 of the Indian Constitution. Previously in an affidavit before the Supreme Court, NACO had said second-line ART treatment for HIV patients, costing Rs28,500 each, could not be extended to those who had received "irrational treatment" by private medical practitioners for the first round, which costs around Rs6,500. The court rejected both the arguments of financial constraints and only 10 viral load testing centres needed for test patients for migrating from first line of treatment to the second line being are available, raised by the Solicitor General representing the government. The court further asked the government to give a clear-cut and "workable" solution response within a week's time.[50][51]

NACO centers providing ART as of September 2006[54]

The National AIDS Control Organisation (NACO) has increased the number of centres providing free Anti Retroviral Treatment (ART) from 54 to 91 centres with another 9 more centres also getting operational soon. At these 91 centres medicines for treating 8,5000 patients have been made available. All the 91 centres have specially appointed and trained doctors, counsellors and laboratory technicians to help initiate patients on ART and follow them up regularly. The ART is a combination of three potent drugs, which is being given to the persons with advanced stage of AIDS. Although these drugs do not cure HIV infection, they suppress multiplication of the virus and reduce the number of opportunistic infections thereby improving the quality of life and prolonging the life span. Apart from providing free treatment, all the ART centres are providing counselling to the infected persons so that they maintain regularity of their medication. Continuity is the most important factor for the long term effectiveness of the ART drugs as disruption can lead to drug resistance. At present 40,000 are on ART, which are expected to go up to 85,000 by March end. All these centres have a plan to ensure that patients take their medicines regularly and are followed up, in case of default, while maintaining their confidentiality.

These centers provide treatment for minor Opportunistic Infections & psychosocial support through sustained counseling, acting to function as a bridge between hospital & home care. Make referral to PPTCTC for care of HIV positive pregnant women, pediatric HIV services, ART centers for CD4 or other tests and DOTS for treatment of TB.

• Aidsroko, Non-profit Based In Chennai
• ASHRAYA /Action India
• Aradhya
• BPS-Care Home Deepati Foundation
• CHELSEA- Community Care Home
• Child Survival India /Sneh Sadan
• India HIV/AIDS Alliance, Delhi
• Love Faith Society
• Michael Sahara
• Naz Foundation (India) Trust, New Delhi (Selected Directly by NACO)
• Suraksha Clinic

• Voluntary Health Association of Punjab v. Union of India[59]
• Love Life Society v. Union of India & Others[60]
• Wahengbam Joykumar v. Union of India & Others[61]
• Delhi Network of Positive People & Another v. Union of India & Others[62]

A long-awaited legislation that seeks to end stigma and discrimination against HIV positive persons in workplace, hospitals and society, while also ensuring their privacy was introduced in the Rajya Sabha on 11-2-2014.[63][64] The HIV and AIDS Bill, 2014 was finally passed by the Rajya Sabha on 21 March 2017.[65]