World AIDS Day is observed globally on December 1 to spread awareness and make people committed to take action against a disease that has claimed 35 million lives around the world so far. Globally, 37 million people today are leading their lives, infected with HIV. Although there is no cure for AIDS, life-saving Anti-retroviral Therapy (ART) has been effective in controlling transmission of an HIV infection, which allows people to live for several years without escalating to AIDS. AIDS itself is an advanced form of the infection, which seriously compromises the body’s immune system and can be fatal.
Overall, India’s AIDS epidemic has been slowing down due to the remarkable efforts of the government’s National AIDS Control Organization in working with high-risk groups and setting up centres providing free ART. There has been a 19 per cent decline in new HIV infections and 38 per cent reduction in deaths from AIDS-related infections between 2005 and 2013. Yet, 51 per cent of AIDS-related deaths in Asia take place in India, according to a 2014 UN report. Logistically, there are several existing challenges – frequent shortage of medicines and trained personnel in ART centres is a major cause of concern. Taboo around sexuality and the stigma associated with HIV is the other issue. Despite having a population of roughly 2.1 million HIV-positive people in the country (2014 UN Gap Report) – third largest in the world after South Africa and Nigeria – HIV/AIDS, unlike cancer, is rarely discussed openly.
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Part of the reason HIV gets brushed under the carpet is that it is concentrated in high-risk groups living at the margins of the society and perceived by the rest to lead a wanton or ‘sinful’ lifestyle – sex workers (including transgenders), homosexuals (defined as MSM – men who have sex with men) and intravenous drug users. Migrant workers from rural to urban areas and truck drivers who lead a nomadic lifestyle are other groups with high vulnerability to HIV, who also act as a bridge population that carry the infection to the general population. The stigma for the disease and discrimination continues to be immense in households, communities and workplaces despite attempts to generate awareness about its nature.
An HIV/AIDS Bill was passed by Parliament in 2014, after being pushed in 2006. The Bill prohibits discrimination against HIV-positive individuals and those living with them in availing public facilities, employment, education, healthcare, insurance, property rights and holding public office. It also recognised their right to privacy and confidentiality about their HIV status. Most significantly, under the Bill, central and state governments were obliged to provide for ART and management of opportunistic infections.
Last month, the present Union government introduced a few crucial changes to the Bill, but rendered it toothless in its most salient purpose. Clause 14(1) of the Bill currently describes the measures to be taken by central and state governments for treatment and prevention of HIV infection that include providing, “as far as possible”, diagnostic services, ART and opportunistic infection management to those living with HIV/AIDS. This wording has been widely criticised by patient rights activists who see it as a convenient loophole left by the government to evade its own accountability and cover up for ineffectiveness in its actions.
ART, which is available in more than 30 forms, has to be constantly changed as the virus is continuously developing resistance to the medicine. More than a million Indians are receiving free treatment at ART centres in India, and a lack of guarantee to receive treatment in future understandably makes them fearful, as they would need access to treatment not for a limited period of time, but throughout their lifetime. In lieu of strengthening the infrastructure of treatment, the stated clause within the bill is “a move to justify the existing shortcomings”, according to Paul Lhungdim, president of the Delhi Network of Positive People, a trust that advocates human rights of HIV-positive individuals. The trust has variously raised concerns in the past about the unavailability of HIV test kits and the deteriorating conditions of ART centres in the Delhi area.