Living with the HIV Virus - Challenges for Children

Photo by blmurchAmong the estimated 2.5 million people in India living with HIV/AIDS, 70,000 are children under 15 years old (UNAIDS 2007). Every year about 21,000 children are infected through mother to child transmission and thousands of children are affected because their parents are HIV positive.

Children continue to be ignored and discriminated against in India's fight against HIV. A study carried out by the Population Council of India in collaboration with the Social Awareness Services Organization (SASO), Asha Foundation and Freedom Foundation in three high prevalence states Manipur, Karnataka and Andhra Pradesh, found that less than a fifth of the children had been diagnosed with HIV infection before 18 months of age. The study found that most of the children are diagnosed for HIV when they are 30 months or older thus creating a barrier to accessing care and treatment for HIV infected children. Many children are often tested when one or both parents report positive.

Among the key findings of the study were the difficulties faced by a third of the caregivers in getting a confirmed HIV diagnosis and getting referred to the treatment centres. The study also states that disclosure of HIV status to children is low and the reasons for not informing the children varied from ‘the child being too young to understand’ to ‘fear that the child would tell others in the community leading to stigma and discrimination by society.’

The late diagnosis of the positive status of children indicates a delay in treatment. Late testing also means delayed initiation of co-trimoxazole prophylaxis which prevents life threatening opportunistic infections in infancy. It also means there is a gap with regard to PPTCT (prevention of parent to child transmission) as an entry point for diagnosis and access to treatment. Even the 21,000 children that are born with HIV each year through mother-to-child transmission is due to lack of services including access to preventive medication. Without treatment, these newborns stand an estimated thirty percent chance of becoming infected during the mother’s pregnancy, labor or through breastfeeding after six months. There is effective treatment available, but this is not reaching all women and children who need it. Dr Vaswani, consultant UNICEF, MDACS (Mumbai District AIDS Society), states that even for those children accessing treatment difficulties exist for the caregivers in getting transport to the ART centres across the city for treatment and care.

HIV positive children face discrimination in their everyday life. This stigma and discrimination practiced by the general public against the HIV positive children denies their access to education, health and many other crucial government provided services. Caregivers at the Ashray center for children in Mumbai mentioned that stigma and discrimination continue to be the major challenge in obtaining school admissions for HIV infected and affected children. It is clear from various studies in India, that HIV positive children who are being denied an education based on their HIV status are due to lack of knowledge or awareness about how HIV/AIDS spreads in the general population.

The number of children who are positive and affected by HIV and AIDS, including those who have to head households, care for infected parents and siblings and lose their childhood, is increasing. With every passing day the number of street children and those sold into the sex trade is also increasing, making these children more susceptible to HIV. Now with a large number of perinatally infected children approaching adolescence, issues of adherence, substance use, sexuality, secrecy, peer relationships, vocational training and guidance and planning for the future have become increasingly important.

Children have the right to love, care, affection and protection against exploitation. Providing care and support for those who are infected results in realization of protecting their rights – which is enshrined in India’s ratification of the UN Convention on the Rights of the Child. HIV/AIDS affected children have many of the same needs as other children – good nutrition, exercise, education, love and affection. Beyond these, affected children whether orphaned or not, may have special needs such as counseling, medical treatment, vocational training and encouragement of self-reliance. Legal support may be required in fighting discrimination in schools and medical care settings, also to help with guardianship issues and inheritance disputes. A child’s development is dependent on all of these needs and each must be adequately addressed.

What we need to understand is that -- HIV is a problem for the whole society and the solutions must have the involvement, support and effort of the whole community. Children affected by AIDS need adults (each and every one of us) to voice and protect their rights. Multiple partnerships and collaborations are needed at all levels, with Governments and NGOs, to International Agencies and Donors working together with Health care providers, Nurses, Pediatricians, Religious leaders, Faith communities, Pharmaceutical companies, Industrial houses, Child Advocates, Academic and Research institutions, Media, and legal and human rights activists. Coordination and cooperation through an Intersectoral approach with government commitment at the highest level.

For Children affected and infected by HIV/AIDS the approach is of an emergency. We must put care and protection of these children high on the national HIV/AIDS agenda.

Ishdeep Kohli-CNS

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