Breaking Barriers: Improved Access to ART Centres Is Key to the Fight against HIV/AIDS: Towards a 'Second Wave' of Improved Paediatric ART Response in India

From India HIV/AIDS Alliance, this policy brief discusses the barriers to access to HIV testing centres. After gathering anecdotal evidence in 2007, the organisation conducted an operations research study consisting of two selected urban and rural sites in two Indian states, Mumbai Suburban and Sangli in Maharashtra and Imphal West and Ukhrul in Manipur. This brief reviews barriers found in the research and possible policy initiatives.

Using quantitative and qualitative methods including focus group discussions and in-depth interviews with the community and stakeholders, as well as semi-structured interviews with service providers and departments, this study identified barriers and bottlenecks to treatment and service access. It presents global views on barriers to paediatric access and then discusses policy initiatives, supported by a case study, towards a second wave of response. It closes with key messages and the voices of some of the study participants.

According to the brief, despite all efforts by the Indian government and civil society, sustainable access to ART centres for children living with HIV (CLHIV) and families is often limited due to several socio-economic and institutional barriers. These include: stigma and discrimination within families, communities, society, and institutions - including school and health facilities; financial constraints of families; infrastructural issues related to distance to antiretroviral therapy (ART) centres and numbers of centres for the population size needing service; lack of awareness of paediatric ART and HIV/AIDS and local health services - due, in part, to a lack of information, education, and communication (IEC) materials; capacity and accountability issues at ART centres; and lack of coordination of agencies, departments, and related programmes.

Policy initiatives towards what is described as the "second wave" of response include:

• Deepening communication and the decentralised response to stigma and discrimination. Recommendations include intensive and child-focused IEC materials using separate messaging for rural and urban areas through a mix of media, including mass media and other forms of communication, to infuse correct knowledge and awareness of paediatric HIV and its treatment. Mainstreaming messages through cross-sections of society could involve local opinion leaders, village elders, faith-based organisations, and youth clubs, as well as mobilisation of the Panchayati Raj (village assemblies) across the country.
• Easing infrastructural bottlenecks. Expanding the footprint of decentralised ART centres by increasing the numbers close to small and medium towns which provide services like HIV testing, support, and treatment and increasing the numbers of Link centres (centres where full ART centres cannot be placed) that have essential services for early infant diagnosis (EID), exposed baby care (EBC), and a variety of testing and treatment regimes. Direct, no-waiting referrals for counselling services should be included and a designated day for giving care exclusively to children could be considered. Centres should be kept open on Sundays and evenings to help parents avoid school and work absences. Vernacular and pictorial signage should be used to support low-literate individuals.
• Coordination and convergence for improved diagnostic services. AIDS organisations and district health authorities need implementation frameworks to coordinate work, including developing guidelines, training manuals, and standard procedures for paediatric HIV testing and treatment. Where possible, free treatments and follow-up should be provided. Strengthen responsiveness at ART centres. All facilities and services should be made available under one roof to allow ease of use by caregivers. Staff, where possible, should include a paediatrician, lab technicians, nurses, pharmacist, and medical officers. Training should be offered regularly for updating health practices.

Key messages include: advocating for a strong political commitment for a child-centric policy on ART access; intensified IEC strategy with a strengthened local response to addressing stigma; increased conditions that enable comprehensive support of families and care of children; and further decentralisation of services through the establishment of more Link centres and augmented capacity at ART centres.