World AIDS Day: Why are people living with HIV still dying of AIDS in India?

It is unacceptable that people living with HIV are still dying because the tests, treatment and care for life-threatening infections are not available

Today on World AIDS Day, we mark four decades when mysterious illnesses started to take lives that we know now were due to the HIV virus that dramatically lowers the body’s immune defences.

At the beginning of this century, AIDS-related illnesses (such as all forms of TB, pneumocystis pneumonia in the lungs, cryptococcal meningitis, a painful fungal infection of the brain) were often seen among patients unaware of their HIV status of a lack of HIV testing and antiretroviral treatment availability. Over 36 million people have died from AIDS-related illnesses since the start of the epidemic

As HIV epidemic enters its fifth decade, governments like India have made considerable advances in providing access to HIV testing and antiretroviral therapy (ART) (a cocktail of antivirals drugs that suppress the virus) to people living with HIV.

Yet, we know that India lost nearly 60,000 people living with HIV in 2019, and there is concern that these numbers could be higher as the pandemic undermines progress with lockdowns and stretched healthcare systems.

AIDS remains a crisis, and COVID-19 is making it worse, says Winnie Byanyima of the United Nations Programme on HIV and AIDS (UNAIDS). According to UNICEF, 120,000 children died from AIDS-related causes, or one child every five minutes in 2020.

As India recovers from the pandemic, World AIDS Day provides an opportunity to assess the response to the continued mortality due to AIDS.

While there has been a reduction of AIDS-related deaths since 2004, progress has stalled in recent years, highlighting that scale-up of testing and antiretroviral treatment alone is not sufficient to end AIDS. 

Can we do what needs to be done to stop people dying from AIDS? Maybe – but only if we pay more attention to the people who are most at risk of dying. One-third of people living with HIV get linked to HIV programmes when their immune systems are already compromised (CD4 cell counts of less than 200 cells/mm), making them vulnerable to infections. We have also seen PLHIVs on antiretroviral treatment develop resistance to their regimen and become vulnerable to life-threatening bacterial and fungal infections, the primary causes of hospitalisation and death among the community.

"I saw people living with HIV in India urgently in need of critical care... just as they did during the height of the global AIDS epidemic nearly two decades ago."

The World Health Organisation recommends that HIV programmes identify PLHIVs at risk of Advanced HIV Disease (technical term for AIDS) to provide a package of prevention, testing and treatment for the main killer diseases linked to AHD or AIDS.

Yet several years after the recommendation, screening tests, prevention, and treatments for these life-threatening infections – now recognised as deadly signs of AIDS-related illnesses – are still missing from HIV programmes in high burden countries like India. A recent visit to Doctors Without Borders/Médecins Sans Frontières’s (MSF) medical facility, providing hospitalisation for PLHIVs with advanced HIV disease – many of whom have been turned away from other health facilities due to stigma – alarmed me. I first-hand witnessed people living with HIV in India in urgent need of critical care due to severe fungal and bacterial infections, just as they did during the height of the global AIDS epidemic nearly two decades ago.

The COVID-19 pandemic must not be an excuse to divert attention from HIV. HIV is not an easy virus to defeat, and we cannot be complacent in our response to the epidemic.

UNAIDS expects governments to reduce the number of people dying from HIV/AIDS to 250,000 by 2025, yet progress has stalled in recent years and cannot happen without throwing a lifeline to people with Advanced HIV Disease.

In India, care models are needed to fit those presenting (and re-presenting) with advanced HIV disease. As treatment activists, we need to advocate with the HIV programme to increase access to the point of care tests and new medicines to prevent the development of or treat the two major causes of mortality among people living with HIV in India, TB and cryptococcal meningitis. However, most importantly, we need political will from the HIV programme (National AIDS Control Organisation) to reduce the number of deaths among PLHIVs and take necessary measures to end AIDS.

Leena Menghaney is a lawyer who has contributed to the research and drafting of the HIV/AIDS Act, is currently a member of the Fight AIDS Coalition(FAC), and works for Medecins Sans Frontieres’s Access Campaign in India

This opinion piece was originally published in The Quint on December 1, 2021

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