Citizen data and freedom: The fears of people living with HIV in India

By Rosamma Thomas for GenderIT.org

India has the world's third-largest population with HIV, after South Africa and Nigeria. The World Health Organization reports that there are 36.7 million people living HIV (PLHIV) in India. Since 2008, after years of pressure from activists, the government has been providing free anti-retroviral treatment (ART) at government facilities. UNAIDS data from 2018 estimated that just about half the infected, 56%, are receiving treatment. This report looked into the situation of PLHIVs in India and how their plight was affected by the lockdown measures imposed as a means to address the COVID-19 pandemic. 

This report discusses various components of the landscape of institutional health care for people living with HIV. It particularly looks into barriers produced by exclusionary or broken data systems, which can constrain the exercise of citizenship rights of PLHIVs. This happens in various ways: systems that demand intimate information without adequate protections, or that create odious requirements that are difficult to meet for patients. A mix of sociocultural factors, including the stigma surrounding HIV, sex work and sexuality, act as barriers to accessing ART treatment, either private or public, and schemes such as health insurance.

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