National AIDS Control Programme urged to move beyond medicine-centric approach
The government programmes for children suffering from HIV/AIDS should move from medicine-centric approach to include nutrition and preventive care, the National Commission for Protection of Child Rights (NCPCR) has recommended. In its recently released report ‘Rights and entitlements of children affected and infected by HIV/AIDS 2010-11’, the organisation also advocated provisions for issuing BPL cards to children who have lost their parents due to HIV/AIDS to ensure minimum food security and nutritional support. The report was put on the website of NCPCR in March.
The report, which NCPCR has put up on its website, also notes that there must be an effective grievance redressal mechanism for issues related to food, healthcare, nutrition, treatment, education, stigma, discrimination and rehabilitation of such children. The report was framed after holding six public hearings with various states between 2008 and 2010. It said the anganwadi centers in the country do not have any provision for double ration for children affected and infected with HIV based on their need and nutritional assessment to avert the onset of malnutrition in them. “Packaged or pre-cooked food provided at many anganwadi centers that does not meet the nutritional requirements of HIV children,” it adds,
“Nutrition should be an integral part of the therapy given to children infected with HIV/AIDS. It should not be seen as a supplement,” says Akhila Sivadas, executive director, Centre for Advocacy and Research (CFAR), a non-profit. She adds that such children have severe side-effects of the drugs given under antiretroviral therapy (ART) and cannot cope with the treatment if malnourished. “To address nutrition, the national programmes have to go beyond dispensing medicines,” she notes.
The report highlights that there are around 300,000 to 400,000 children infected by HIV in the country. About 100,000 children are in need of treatment for AIDS but most continue to live in areas where they lack access to health care, adequate treatment and face discrimination, exclusion and isolation.
National AIDS Control Programme criticised
The apex body for child rights protection in its report said that the main programme in the country for HIV/AIDS patients, the National AIDS Control Programme (NACP) is not comprehensive. It misses out on critical issues like nutrition, education, livelihood, protection from exploitation, legal aid, shelter, property rights, confidentiality and other welfare services for children suffering from HIV.
The report also noted that at the institutional level, many times it is seen that there is no stock of Nevirapin, a drug given to newborns to prevent mother to child transmission of HIV. Early infant diagnosis does not happen at several healthcare centres and children coming to centres from remote areas have no mode of transport. Most of the time they have to spend from their own pocket. “Children (under NACP) are beneficiaries of adult-focused programmes. Prevention of paediatric HIV, availability of paediatric care and dosage still remain a challenge,” it stated.
“The recommendations were sent to all the concerned departments like NACO and department of women and child development,” says Shanta Sinha, chairperson, NCPCR. The report was formed after holding public hearings where we found that positive interventions were being done in some states. But states were working independently and were not aware of the work done in the other states, she adds.
The civil society groups working with children with HIV/AIDS feel the suggestions given by NCPCR are utopian. “Who is going to provide these facilities? Even the basic services are not available for children in the country. Children are dying of malnutrition,” says Anjali Gopalan, executive director of Naz Foundation, a non-profit.
She adds, for improving access to care and treatment for children with HIV/AIDS there should be better coordination between the government and civil society. “Government alone cannot reach out to all HIV infected and affected children. All the schemes just need better implementation. Children with HIV/AIDS need no special care than a normal child. They need safe environment, clean water and nutritious food like any other children,” she notes.
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