Barriers to Sustainable Access of Children and Families to ART Centres in Rural India

From India HIV/AIDS Alliance, this study was conducted to identify barriers for children living with HIV (CLHIV) to accessing antiretroviral therapy (ART) treatment centres, both in urban and rural contexts, in two high prevalence states of Maharashtra and Manipur. Based on a wide range of subjects covered in the study, interviews from various stakeholders and service users were recorded and analysed to prepare evidence-based, strategic, and child-focused interventions aimed at minimising the barriers that hamper access to paediatric ART services.

The Indian Paediatric AIDS Initiative was launched in November 2006 with the objective to maximise the access of ART for CLHIV as part of India's programme to provide free ART to all people living with HIV (PLHIV). For this study of the CHAHA Programme, two states were selected to include a cross section of socio-cultural and economic diversity. In both states, one urban and one rural district were selected from which to collect data from diverse population groups. This report is specifically focused on results and issues relating to the rural population.

From the Executive Summary: "The major issue brought out by the study related to an all-pervasive stigma and the resultant discrimination at all levels in rural areas not only within the family and community but also in school and even health care service facilities. The discriminatory attitude of service providers discourages both children and their parents, to access the ART centres. In many cases, this leads to non-disclosure of the HIV positive status of the child, thus keeping the child away from available services and interventions. A focused effort is, therefore, needed to address issues like illiteracy, lack of awareness and limited access to Information, Education and Communication (IEC). The gross lack of awareness about paediatric ART services in the rural areas and also the fact that these services are being provided free of charge by the government needs to be addressed by a rural and child-focused IEC strategy. In addition, media planning to bridge the information and knowledge gaps on the availability of paediatric ART is crucial.

The effort needs to be further supplemented and complemented by creating enabling conditions for wider participation of society at large - Panchayati Raj Institution (PRI) members, religious and spiritual leaders, local political leaders, teachers, even families and children themselves." The report suggests that, in order to avoid significant family expenses for travel, testing, and treatment of Opportunistic Infections (OI), "...[i]nnovative methods to bring ART to doorsteps through creation of Link ART Centres (LAC) or making ART and testing facilities available in Community Care Centres (CCC) can be the alternative for dealing with this situation. Linkages with rehabilitative services and some Income Generation Programme (IGP) activities especially designed for the rural population could be a big encouragement." Reluctance to access free treatment, as observed here, seems to result from the adult-centric nature of treatment provision. "Training of doctors, paramedics and counsellors in paediatric orientation and counselling skills is, therefore, of paramount importance for providing meaningful ART."

In addition, policymakers could ensure programme integration related to HIV and AIDS and including the following: Integrated Child Development Schemes (ICDS), National Rural Health Mission (NRHM), Reproductive and Child Health (RCH) programme, Prevention of Parent to Child Transmission (PPTCT), Voluntary Counselling and Testing Centres (VCTC), CCC, Tuberculosis (TB) and ART centres, and the education sector. Private sector involvement - market institutions with health delivery systems where the state can act as regulator, including non-governmental organisations (NGOs) - in the paediatric HIV programme is recommended for improved the coverage and delivery of goods and services involved in standardised treatment.

The use of appropriate communication strategies and building a wider support base of community leaders "would go a long way in dealing with stigma rooted in ignorance, myths and misconceptions....Civil society has played a strong role in prevention, care and support services. It has been at the forefront of developing and implementing innovative home and community-based care and support programmes through a vibrant and effective outreach and community-centred model. Its efforts have raised the bar for any future care and support model that seeks to reach out to CLHIV and their families and to promote strong linkages and referrals. The government can help upscale and promote further civil society action in this area of work with a predominantly rural, urban and peri-urban focus." The report recommends "that a practical and time-bound action plan is developed to address these issues at both programmatic and policy level."