THE HIV/AIDS epidemic highlights and accentuates the faultlines of affected communities. Wide disparities in economic and social power in society makes the less empowered more vulnerable to HIV infection, as also more susceptible to its impact. The stigma and discrimination associated with the disease further marginalizes the infected.

Children, especially those from marginalized groups, are among the least empowered groups in India. Since allocation of government budgets reflects the comparative strength of power groups to corner resources, the needs of children are least likely to be addressed. Moreover, since the per capita cost of caring for infected children is much higher, they are even less likely to attract resources. Any attempt to address the needs of HIV infected and affected children cannot be divorced from efforts to address their general needs. An efficient system to protect and provide support to children is a necessary but not sufficient condition to deal with the special problems posed by HIV superimposed on the general vulnerability of children. The task of addressing these special problems is complicated by the weak social and health care systems.

 

Lack of political support for issues related to women and children is brought out by comparing targets set for the 10th plan and their achievement as revealed in the mid-term review. Some measure of success was achieved in meeting the ICDS targets even though quality and additional needs are yet to be addressed. The review states: ‘Addressing and succeeding in controlling neo-natal and infant mortality demonstrates a certain quality of excellence in the health delivery system with all linkages in position and functioning harmoniously’ (Mid-term appraisal document, p. 87) and then goes on to admit that the targets set were unrealistic. That they were not unrealistic is shown by the performance of some states that have exceeded these targets.

In calling for a mission headed by the prime minister, the document obliquely points to the real reason: the health and well-being of children is not considered sufficiently important politically to attract the needed resources. Unless that changes we will continue to set unrealistic targets knowing fully well that failure to meet them will not attract censure. If such is the state of services for marginalized children in general, the need of children vulnerable to and infected with HIV is likely to attract even less resources. Heightened international visibility of HIV can counteract this liability only to a limited extent as the groups that clamour for greater treatment services are dominated by adult interests.

As in other population groups, the response to HIV can be classified as prevention, treatment and mitigation of impact. These categories broadly correspond to three groups of children. (i) Children who are relatively more vulnerable to HIV: This group includes street children, trafficked and displaced children, children of sex workers, mentally or physically challenged children, children in correctional institutions. (ii) Infected children. (iii) Affected children: Children who have lost one or more parent or sibling; or children forced out of institutions due to social stigma caused by infection in the family or to cover income loss due to sickness of a family member or simply traumatized by the presence of sickness and death in the family.

 

Accurate data regarding these populations are not available. A study by Lawyers Collective had estimated that there were 40 lakh children living in the streets of India in 2004.¹ Approximately 9% of all children under the age of 18 had lost one or both parents. As per UNAIDS projections, 1,70,000 children below 15 are living with HIV.² This does not include adolescents in the 15 to 18 age bracket. Based on estimated prevalence among women, general fertility rate and the rate of mother to child transmission, it is estimated that there will be 57,000 new HIV infected persons in India every year from mother to child transmission alone.3 It is estimated that there are 35 million orphans in the country.⁴ The number of orphans, who have lost their parents to AIDS, starts going up eight to ten years after the infection has matured. It is likely that many high prevalence districts may be moving towards that stage.

All the groups discussed above rely on the same service delivery mechanisms available to other children. Hence the best way to respond to HIV is to ensure that general services for children improve. When they do not, it may not be possible to build services exclusively for the HIV. But even when they have improved, special efforts have to be taken to ensure a ccess of children living with HIV on account of discrimination that children infected and affected by HIV are subjected to.

 

The predominant mode of infection, which is also easy to prevent, is the mother to child transmission. Counselling and testing for HIV can become a component of the package of antenatal screening. This would ensure early detection with potential benefits for child and mother. But given the potential impact the disclosure of positive status can have on the mother and the family, efforts for scaling up must be tempered with precaution to ensure confidentiality at least till HIV is normalized as a disease.

With less than 50% of deliveries occurring in health care institutions, the pool of potential beneficiaries is narrowed, often missing the most vulnerable. Trained counsellors are currently available only at district hospitals. During the third phase of the National AIDS Control Programme (NACP III), it is proposed to make the services available at first referral units/community health centres. Alternate mechanisms such as training the lady health supervisor/or the auxiliary nurse midwife (ANM) posted at primary health centres (PHCs) as counsellors, are suboptimal options to be carefully evaluated before being adopted. Prevention of mother to child transmission, to be effective must be integrated with provision of reproductive and child health services.

 

Children are vulnerable to other modes of transmission due to sexual abuse, intravenous drug use and unsafe injections. Addressing them is an integral part of the effort to reduce vulnerability of children. But programme managers are reluctant to acknowledge and deal with issues of sexuality and drug abuse among children. Sometimes they are also dissuaded from doing so by powerful vested interests as in the case of trafficked children.

Child sex workers, children of sex workers, and trafficked children rank highest in vulnerability. Sex work activists, who agitate for sex work being recognized as a legitimate livelihood option, have taken steps to put in place internal monitoring mechanisms so as to ensure that minors and trafficked persons are not inducted and retained in sex work. Government has to recognize community activists as allies in the prevention of sex work by minors. National AIDS Control Organization (NACO), State AIDS Control Societies (SACS) and Non Government Organizations managing prevention intervention in sex work have to take a stand to prevent sex work by children, not make it safe by promoting condoms and STI treatment. Department of Women and Child Development (DWCD) as part of its initiatives on HIV prevention must have an explicit policy and programme, in collaboration with community based organizations which removes minors from sex work. This has worked in the brothels of Sonagachi in Kolkata and Baino in Goa.

 

The most common demand of sex workers is to ensure that their children be given a fighting chance to have a future where they are not compelled to be sex workers. Their demands include education and safe keeping of children while they are out on sex work. They do not accept the option of institutionalization. The mid-term review of the 10th plan has accepted the need for day care centres to help the children of working mothers. Since sex workers work at night, their children equally need night care centres, which can also be accessed by street children. This also offers the chance to combine pre-school and non-formal education, another recommendation of the review. Other inputs such as health care and supplementary nutrition can also be made available here. Caring for children is one of the best signals to sex workers, who have been alienated from mainstream society, of their acceptance by the society.

India has an unacceptably large number of children living on the street. They are extremely vulnerable to HIV. Institutionalization is not an option here. Initiatives such the ones undertaken by the Don Bosco school chain in some cities have shown that it is possible to create safe havens from where their reintegration can begin. Investing in night shelters has positive spin-offs, including for health and HIV prevention. But often such agencies are reluctant to provide health care and life skills education to reduce vulnerability to HIV. DWCD and their partner agencies have to acknowledge the possibility of street children who access their night shelters being either sexually active, using drugs or both. Non-judgmental attitudes, sensitive counselling and treatment services and knowledge and skill-building sessions have to be incorporated into the services provided.

When populations get displaced their resettlement and rehabilitation programmes do not provide for replacing social systems which took care of children’s social needs. Extended families and communities and other social structures are not easily replaced. These needs must be specially provided for through alternate modes of service provision. The ownership of assets generated through government income generating and rehabilitation schemes need to promote co-ownership rights to women and protect the rights of minors to ensure that they are not dispossessed, should the head of the family or the parents die.

India is an important destination for children trafficked from Bangladesh and Nepal. India has a responsibility to put in place systems to prevent such trafficking and to rehabilitate such children. Repatriating them back to their home may not be the ideal option as the children are likely to suffer the same fate again. On humanitarian grounds India needs to partner with civil society agencies to ensure that the children are protected in this country itself.

 

The mid-term review presents a depressing scenario regarding achieving basic health service for children, i.e. immunization. In many poor performing states the percentage of children who have been fully immunized remains low and in some others the rates have fallen. If this is the state of delivery of elementary health care services, the challenges of providing treatment of opportunistic infections via paediatric ART appears insurmountable without major infusion of resources and revamping the delivery mechanism. Given the management and human resources challenges that have plagued the provision of adult ART, paediatric ART will be even more difficult to manage. The political support for paediatric ART will also be less. As of now the only group that appears to have a good chance of accessing ART appears to be children who have been infected in spite of chemoprophylaxis for prevention of mother to child transmission (PMTCT).

Even in resource rich countries paediatric ART has lagged behind treatment for adults. Children have an insignificant share even in treatment programmes launched by committed and competent organizations. In 2004 only 7% of the 23,500 persons put on treatment by Medicine Sans Frontiers (MSF) were children while the need is estimated at 15%. There are a number of reasons for this treatment gap.

 

Difficulties in HIV testing/diagnosis in children: Due to the presence of maternal antibodies, the Eliza and spot tests are unreliable for children upto 18 months. But unless anti-retroviral therapy is started within a year, clinical outcomes are likely to be unfavourable. Sophisticated tests are available to detect the presence of HIV within a couple months of exposure. But these are prohibitively expensive and in a resource constrained health system, may not be available in most places. The social stigma attached to HIV may prevent parents from opting for such a test even if it were available.

Lack of trained skilled health personnel or expertise in managing children with HIV: Even situations where testing is not possible, health care workers could base treatment decisions on the basis of AIDS-defining or suggestive symptoms, the child’s CD4 counts and the mother’s antibody status and/or clinical symptoms. But few care providers have been trained to recognize the signs of HIV infection or in the management of a child should he/she prove to be HIV infected. The stages of AIDS defining symptoms are difficult to detect and can be complicated by malnutrition. The clinical management protocols have to be modified to suit child-specific conditions based on clinical assessment. All of these call for high levels of diagnostic and therapeutic skills, which are currently scarce in the country.

Lack of suitable and affordable child-friendly antiretroviral medicines and confusion regarding dosage: Most of the antiretroviral (ARV) drugs, which are used to treat HIV, are not readily available in paediatric formulations. Even where available, they need good systems of procurement and storage, which create challenges for the clinicians as clear protocols are not available. Since the market for paediatric ARVs is limited they are much more expensive than adult doses and most clinicians in India and up using portions of powderised pills meant for adults. Unless paediatric treatment is accepted as a part of the national programme, suitable formulations are unlikely to emerge and prices to fall. NACP III is committed to providing paediatric ART available in a limited way.

 

Lack of political advocacy on behalf of children with HIV: Given competing claims of children suffering from chronic disabilities such as leukaemia, juvenile diabetes and cardiac conditions, the claims for paediatric ART has taken a back seat. Even from among the public health activist networks, demand for treatment for children has been muted. Unless the right of children to access treatment, irrespective of ability to pay is accepted, the resources needed for addressing chronic morbidity, including HIV, are unlikely to be forthcoming. Since treating HIV without treating other chronic conditions is a violation of the principle of equity, outlays for health provision for children have to be increased substantially.

Infected children need to be provided non-medical support too. Different methods of support provision, such as support to single parents, extended families, foster care and institutional care have been attempted. Each has its benefits and risks.

 

Systems to protect and reduce hardships of vulnerable children are inadequate. Even these inadequate systems are not equipped or are unwilling to deal with children affected by HIV due to the stigma and discrimination associated with the disease. Since HIV disproportionately affects the most marginalized sub-populations, the community support structures are already overstrained. Hence, unless the support systems are strengthened and effort made to deal with the special difficulties of children affected by HIV, an increasing number of such children is likely to fall through the cracks.

Children are affected by the economic hardship that results from HIV infection of their parents, denial of love and affection of their parents, withdrawal from school due to economic hardship or stigma and discrimination, being cheated of their inheritance and psychological distress leading to long term mental health consequences.

One of the basic condition for an effective response is to ensure support for reducing the impact of HIV on children, in itself linked to addressing needs of disadvantaged children. The problem of affected children has not yet hit national consciousness. Hence, the first step would be to collect reliable data on their numbers and locations. All the national programmes such as poverty alleviation, vocational training, micro finance and income generation schemes need to integrate the needs of affected children in their planning. This is already being attempted in some districts of Andhra with high prevalence of HIV. Also needed are national policies and legal framework to protect children. The National Plan of Action for Children and the soon to be constituted Commission for Protection of Child Rights provide a good platform to base the protection services.

 

The best support mechanism for children is the family itself. By enabling infected parents to lead a long and productive life through treatment of infections and ART, providing them support to ensure that children’s needs are met, helping them plan for the time when they would die, identifying and working with relatives to keep the siblings together, including providing economic support to deal with the additional burden, and training children themselves to be involved in planning their future are some of the strategies that could be used. The poverty alleviation and income generation schemes have resources that could be used for this purpose.

The next layer of support comes from the community. In India close-knit communities have traditionally taken care of the young. To some extent this has been weakened by the fear and stigma associated with HIV, with many communities rejecting affected families. Social cohesion, instead of supporting the vulnerable, has often worked against them. State authorities have to be sensitive to such rejection and conduct proactive advocacy with local influentials to make them allies of affected children. Gram panchayats need to be persuaded to take an active part in such community based activities. Insensitive media coverage of such rejection has had a demonstrative effect on similar responses elsewhere.

 

For the affected children to grow into healthy and productive individuals they must be ensured access to their entitlements such as education, health care, housing, sanitation and safe drinking water. This will need an augmentation of resources and safeguards to ensure that HIV infected children get their share of these services. Quite often the temptation is to segregate them into separate institutions. Unless this is resisted, children will miss the emotional support that education, with its supervision of qualified adults and integration with peers, can bring. The children affected by HIV must be closely monitored to ensure that they are not discriminated against in school, forcing them to drop out. Discrimination in health care settings is another common response which needs to be prevented through sensitization of health care providers and activism by networks of positive people.

Since children, especially orphans, do not have the knowledge or power to ensure access to publicly funded asset creation, authorities may have to specially monitor their access to such services. Creating assets in their name, even if with a guardianship assigned to the relative taking care of them, provides some measure of insurance. This could be house sites, construction of houses or other moveable or immovable assets. Protecting their inheritance is another imperative. Child rights activists need to recognize children affected by HIV as a vulnerable group who must be specially monitored.

Following the experience of managing natural calamities, civil society and government have fine-tuned norms for adoption and placement mechanisms for children without family care. Placing siblings together, choosing families most similar to their situation and postponing institutional placements as the last resort are some of the learnings that should be transferred to HIV orphans too.

 

The impact of AIDS comes in different waves. Children are among the last group to be affected. From our experience of other parts of the world, we need to realize that since the epidemic is about twenty years old in India, the problems of infected and affected children will increasingly emerge as a major concern. Some recent incidents, where children have been rejected by school authorities, have shown how traumatic they are. For society, the choices are difficult and expensive. But unless these are made we may lose another age cohort of vulnerable population to HIV. Whether these choices would be made in favour of infected and affected children will depend on how children’s rights and rights of people living with HIV come to be protected in India.

The third phase of AIDS Control Programme has articulated safeguards to ensure that children infected and affected by HIV are retained in school, that children who need anti-retroviral therapy have access to them and that ICDS scheme provides nutritional support to children on therapy. The challenge is the same as for other services meant for children: to ensure that good intentions of policies and plans are delivered in the real world where children do not command political support.

 

Footnotes:

1. Veena Johari, Silent Cries and Hidden Tears, Lawyers Collective, 2002.

2. Mother R, Emerging initiatives to decrease the HIV vulnerability of marginalized children in India: The example of children of sex workers and street children, Sexual Health Exchange 2005-1 http://www.kit.nl/frameset. asp?/ils/exchange_content/html/2005-1_emerging_initiatives_to.asp&frnr=1&

3. National AIDS Control Organization: National AIDS Control Programme, Phase III (2006-2011)

4. Children on the Brink 2004: A joint report of new orphan estimates and a framework for action. UNAIDS, UNICEF, USAID. 2004: www.unicef.org/publications/index_ 22212.html