Much of Jyoti Dhawale’s early adulthood was an unforgiving trial, inflicting new scars before the old ones could heal. Born into a peripatetic military family, she was already battling partial deafness and the hardships of growing up with a stepmother when in 2005, she was diagnosed with HIV, resulting in violence, lost custody of her only son, and homelessness.
Bengaluru-based Dhawale’s triumph at turning her pain into purpose to become an HIV changemaker and global ambassador may well evoke the rise of a phoenix, but the stigma hasn’t disappeared completely. “The emotional and social battle remains, even if today's environment offers far better tools, community and understanding at our fingertips,” she says.
In her two decades with the virus, a lot has changed for thousands like her. “Medical care, awareness and access to therapy have greatly improved,” she says. “People like me can live long, healthy lives. While a ‘cure’ is still distant, our daily pill protects our dream of a future.” Her story mirrors India’s own fight against HIV.
India’s HIV Response
Back when the Human Immunodeficiency Virus was first detected in India among female sex workers in Chennai in 1986 — a few years after unusual immune deficiency was first reported globally — the country was still learning the language of public health. Because of the strong taboo surrounding its triggers and the mistaken view that it was limited to “high-risk” groups, the threat largely eluded public and political imagination, failing to gain attention as rapidly as the surge in infections among sex workers, truck drivers and later the general population. By 1996, HIV had erupted into a full-blown national health crisis, earning India the dubious distinction of being one of the world’s fastest-growing HIV hotspots.
Yet, India’s journey from a National AIDS Committee conceived in a humble room with a handful of files and borrowed conviction soon after the first cases came to light, to a sprawling care architecture of hospitals and over 700 Antiretroviral Therapy (ART) centres dispensing free treatment to nearly three-quarters of its known HIV-positive population of 2.5 million today, has been remarkable.
Thanks to India’s organised response to the virus led by the National AIDS Control Organisation (NACO) since 1992 through its detection, intervention and surveillance programmes, especially targeting those at heterosexual risk, men who have sex with men (MSM), trans-people and other sexual and gender minorities, HIV prevalence among adults has dipped to 0.2%, while new infections relative to 2010 are down by 44% and AIDS-related deaths by 79%.
More than 95% of people testing positive are now quickly connected to medical care. The goal is an 80% decrease in new HIV infections and AIDS deaths by 2030. However, as India enters the 40th year of its fight against HIV, it appears that despite significant progress in faster testing, kinder treatment and smarter prevention, the country’s social reflexes have not kept pace with its health systems.
Emerging Concerns
“Despite having the third largest number of people living with HIV globally, prevalence being only 0.2% makes it harder to find people with HIV and link them to care,” says Sunil Solomon, Professor and Vice Chair (Research), Department of Medicine, Johns Hopkins University School of Medicine, and Chairman, YRGCARE. “A lot more needs to be done among people who inject or use drugs, where HIV is almost 45 times higher than the general population.”
Dr. Nilesh Gawde, Assistant Professor at the School of Health Systems Studies, Tata Institute of Social Sciences, concurs. “The HIV epidemic is fuelled by social determinants, chiefly gender inequities and drug trafficking. Drug trafficking hubs like Punjab lag in curbing new infections.”
“Rising infections among key and emerging populations show that the fight is far from over,” says Dr. V. Sam Prasad, Country Programme Director, India Cares. He warns that falling infection rates shouldn’t lull us into complacency as new hotspots emerge amid rising sexually transmitted infections and drug use.
The epidemiological contours of HIV are changing. “First, we are seeing old problems in new areas, such as growing drug use across central India and new northeastern states,” says Dr. Solomon. “Second, people seeking sex and partners online escape traditional outreach. Third, overlapping behaviours are growing, for example, MSM who also use drugs.” He says more comprehensive and creative interventions are required to address this changing dynamic.
The heartless politics of affordability is another concern. “Geoeconomic changes are creating funding gaps,” reminds Dr. Sam. “High prices keep groundbreaking prevention tools like long-acting injectable pre-exposure prophylaxis (PrEP) out of reach for those who need them most. True progress demands that pharmaceutical companies put people before profits. Innovation means nothing if not accessible to all.”
Dr. Solomon adds, “The biggest barrier will be meeting the growing need for ART services amid a budget not growing with new products. Expensive new products necessitate more funding. Larger investments now could save costs in the long term.”
The Road Ahead
“We still need to catch up on the 95-95-95 targets from diagnosis to treatment to viral suppression,” says Dr. Gawde. “Broader socio-political action is needed to address gender inequities and drug trafficking.”
According to Dr. Sam, prevention efforts need a reset. “Awareness programmes must be rejuvenated for changed times. Treatment should not embolden irresponsible sexual behaviours,” he avers. For a sexually active and adventurous Gen Z vulnerable to infodemics, comprehensive sexuality education built on a language and candour they can relate to is imperative. “Institutional memories from past successes should not linger on; we must adapt,” says Dr. Sam. “It is important to de-stigmatise condoms and ensure discreet access and delivery through internet-based solutions.”
Dr. Solomon highlights the need to adopt data science and AI to improve programme efficiency and decouple services from brick-and-mortar facilities. “Diagnosing people early with newer drugs may reduce in-person consultations,” he says.
Equally important, he adds, is to understand why people do certain things, like injecting drugs. “In most cases, it is unemployment, homelessness, food insecurity and mental health challenges,” he points out. “We provide harm-reduction services without addressing the underlying issues. We need a holistic, interministerial approach to health, not just for HIV, but also for underlying comorbidities.” According to him, fully leveraging new biomedical tools requires implementing them by considering these barriers.
Although India’s HIV map shows more hope than red today, its shift to newer regions, behaviours and risks is a warning sign. Stronger science needs freshly calibrated execution to deal with changing social nuances.
