Living with HIV, she travels one-and-a-half hours to get her drugs, is peer counsellor: ‘I weighed 38 kg but am still alive’

Fighting a stigma and more

Back then, the couple knew very little about HIV. Her husband insisted that she tell no one. “There was so much fear and stigma. AIDS meant death,” Maya says. But the burden of secrecy was crushing, and she finally confided in her mother. At the time, Maya was living with her husband’s family in a village near Wai in Satara district, coping with his deteriorating health and the growing weight of her own diagnosis.

In 2005, her husband died of AIDS. A month after childbirth, her newborn son died too. Maya was inconsolable. “I kept having nightmares that I would be the next. I lived only for my daughter,” she says. With grief and uncertainty overshadowing her life, she turned to Bel-Air Hospital in Panchgani, which was then at the forefront of HIV care during one of the country’s most challenging phases.

Her initial CD4 count was 450 cells/mm³ (normal being 500–1,500). Though often depressed and weak, she did not have severe physical symptoms. She accepted Father Tomy Kariyilakulam’s offer to volunteer at Bel-Air. He encouraged her to share her story with critically ill patients to help them cope. But as her CD4 count slipped to 250, her resolve began to waver.

How ART added years to her life

In 2007, she was put on antiretroviral therapy (ART). “My weight had dropped to 38 kg and I couldn’t keep food down,” she recalls. She started on Triomune, a combination tablet taken twice a day. “Initially I would vomit and couldn’t bear it.” Gradually she adjusted, but when the regimen was changed to ZLN (Zidovudine, Lamivudine and Nevirapine), severe anaemia forced another switch within a month — to TLE (Tenofovir, Lamivudine, Efavirenz). She remained on this regimen from 2010 to 2022, travelling monthly to an ART centre to collect her medication.

“In the early days, there was a huge rush because there were very few centres,” Maya says. “We waited in long queues at Satara Civil Hospital, completed tests like sonography and CBC, and only then got our month’s supply.” The journey took one-and-a-half hours each way. Sub-centres later reduced her travel time to half an hour, but the burden remained heavy.

Two years ago, she was shifted to the TLD regimen, but worsening joint pain required yet another change. Now on second-line treatment, she must again travel one-and-a-half hours to Satara Civil Hospital. “It’s tiring, but worth it because I am adjusting well,” she says.

With consistent treatment, Maya’s viral load became undetectable. She faced the COVID-19 pandemic with the same quiet resilience that has carried her for two decades. “There are days I don’t complain at all,” she says. “But sometimes I wonder, ‘Why me?’ Still, I am alive, and my daughter—who fortunately did not test positive—is now married and settled. That keeps me going.”

Controlling mother-to-child transmission

According to the India HIV Estimations 2024 report, India has an estimated 2.6 million people living with HIV, including 70,000 children, and recorded 64,000 new infections. AIDS-related deaths numbered 35,870 in 2023 and 32,000 in 2024 — four every hour. “The biggest global challenge — access to ART — was overcome largely due to India’s pivotal role in making treatment affordable and accessible to almost 92% of people living with HIV globally,” says Dr I S Gilada, President Emeritus, AIDS Society of India. “Now the major challenges are stigma and discrimination; these require innovation,” he adds. Also, overall low national prevalence doesn’t mean we get complacent about hotspots and newer spikes in the northeastern states and Punjab driven largely by injectable drug use. This can spiral rapidly if not responded to effectively.

ART can reduce viral load to undetectable levels in months, transforming HIV into a manageable chronic condition. Eliminating mother-to-child transmission (MTCT) is one of the most crucial goals. Though 80% of pregnant women are screened, only 64% of those with HIV receive full MTCT prevention. This gap means some women remain undiagnosed, and those identified may not stay on lifelong ART or complete the continuum of antenatal, delivery and infant care.

“Each new HIV case is a ‘missed opportunity.’ Every AIDS-related death is a grim reminder that it could have been prevented—we have the tools to make AIDS deaths history,” says Dr Gilada. For Maya, those tools have meant 20 more years of life, a daughter raised into adulthood, and a purpose found in helping others navigate the fear she once felt so acutely.