An invisible crisis:  People living with HIV in times of Covid-19 pandemic

Ayushman Bharat scheme
The Ayushman Bharat scheme, aimed at reducing out-of-pocket healthcare expenses, is facing challenges due to fraudulent practices by some practitioners.

By Vanisree Ramanathan

The new coronavirus pandemic is seen as the most severe health emergency since the Spanish Flu outbreak of 1918. With the public healthcare systems all over the world now firmly focused on Covid-19, people suffering from other fatal conditions do not receive adequate attention. In India, Covid death toll is far below those of tuberculosis (TB) and HIV. In India, 2.1 million people are living with HIV (NACO, 2017) who face the stigma associated with the infection. Global HIV/AIDS pandemic has taught us to look at pandemics from a multidisciplinary perspective, rather than from a medical or health angle. The pandemic led to the re-emergence of the social development model wherein health infrastructure investment is seen as crucial for sustainable economy.

It is important for people living with HIV to take their antiretroviral treatment regularly as prescribed. They are more vulnerable to respiratory infections when HIV is not well managed. Police and law-enforcing agencies associate the term HIV with sex workers and drug addicts. People with special needs and chronic conditions, such as an HIV-positive patient diagnosed with cancer, are deprived of their treatment. In times of public emergencies like Covid-19, governments should have waived restrictions to make it easier for people to obtain life-saving care, regardless of their legal status, residency or citizenship.

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Even though community networks are expected to play a central role in ensuring access to HIV treatment and essential services during the Covid-19 lockdown, several media reports on suicides or suicide attempts among the community have appeared. People from the community have begun to share their experiences of psychological distress such as depression, isolation and hopelessness due to lack of access to healthcare and treatment coupled with livelihood challenges. Increased physical violence and mental torture among transgender community are also reported due to their marginalised identity.

Investments made in civil society are crucial during emergencies. Community mobilisations encouraged by donor agencies worked as the means to an end, rather than sustaining and empowering the communities.  But the targeted interventions and the blame game that sex workers need behavioural change reinstate the responsibility of prevention on underprivileged and marginalised persons.

During the Covid-19 social distancing when most of the brothels are sealed, getting access to routine health check-up is hard for inmates. There are instances of labour pain and other health emergencies where no transport is available, and many times, admission to the nearby hospitals is denied due to the pandemic. There is also displacement and relocation of these communities in search of livelihood.

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Through the community mobilisation drive in India, many donors came as experts to mobilise communities. However, the paradox is that many times Community-Based Organisations are not considered self-sustaining communities by themselves, but as a tool to prevent HIV/AIDS and epidemiological categories to save the world. With some exceptions, many project-based organisations under the name of CBOs have become centres of unethical practices, data dodging and cheap labour. The Corona pandemic has affected the CBOs disproportionately.

There is no doubt that Covid-19 related lockdown is going to re-stigmatise sex workers due to their identity. It will make them vulnerable to police brutality and they will also be victims of the blame game as in the context of HIV. People living with HIV are often moved out of the hospitals due to Covid-19 emergencies, and their right to health and work is challenged. It is important to create an environment of health and governance wherein the vulnerable feel encouraged and safe to live with it.

Even though many networks of volunteers are ready to supply essential medicines and supplies to people living with HIV, most often people hide their HIV status. Hence our organisations and leaders have to ensure that nobody is left behind when they plead for their life in the context of double stigmatisation due to their marginal identity.

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After 37 years of HIV pandemic, general medicines are still a contesting issue due to multiple lobbying. While health for all is an accepted goal, marginalised persons are often pushed to the periphery and are prevented from getting the benefit of medicines and vaccines. It is hoped that new technology will be used as public good to protect the health along with protecting the privacy and confidentiality of the citizens.

Today, in order to preserve life, we are forced to sacrifice our right to liberty. Never before have these rights been treated as antithetical to each other. The right to life and the right to livelihood and the right to lead a dignified life go hand-in-hand. The key issue is the constitutional obligations on the state to adequately compensate for the livelihood of most vulnerable: social safety net, for the people who need it the most.

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If a community fails to obey protocols, it can be detrimental to the healthcare system of the society. Along with demarcating containment zones and pasting stickers on positive patients houses, the government should focus on creating slogans on the individual’s role in protecting his or her community by staying indoors. Quarantine should not result in stigma and confusion. People are likely to report themselves if they see it as an act of pride, as opposed to discrimination.

From the lessons learned from the HIV Pandemic, a concerted and visible policy in dealing with the pandemic is essential. In any epidemic, the marginalised and the vulnerable must be prioritised. Their needs should be met in the form of access to information and services, as well as social and economic integration. Tokenism and targeted and stigmatised interventions are not the answer to the complex social fabric of the country. Community empowerment through social development and sustainability through newer ways of cohesions and organising the society is the need of the hour. Let the Covid-19 pandemic work as a catalyst for social transformation with an integral value of sustainability and social solidarity with an educative and democratic process for all.

(Vanisree Ramanathan is Associate Professor in Chinmaya Vishwavidyapeeth, Kochi, Kerala. Views expressed are personal.)