Imagine facing a life-altering diagnosis, losing loved ones, and battling a relentless illness, all while finding the strength to not only survive but to thrive. This is the reality of Maya Kate, a peer counselor living with HIV, whose story is a testament to resilience and the power of hope.
In 2005, Maya's world was shattered. She lost her husband to AIDS and, shortly after, her newborn son. Grief and fear consumed her, as she grappled with the possibility of leaving her young daughter parentless. It was a turning point, a moment that would define her future.
This World AIDS Day, as Maya reflects on her journey, now at 44 years old, she draws strength from her experiences. She works as a peer counselor at Bel-Air Hospital in Panchgani, Maharashtra, navigating second-line treatment to manage her condition. Her story began in 2000, shortly after her marriage and the birth of her daughter. Her husband's frequent illnesses led to the discovery of his HIV status, which then revealed Maya's positive test result. "That's when our journey with the virus began," she recalls.
But here's where it gets controversial: The stigma surrounding HIV was immense. The couple felt compelled to keep their diagnosis a secret. Maya, living with her husband's family, struggled with his deteriorating health and the weight of her own diagnosis. In 2005, her husband succumbed to AIDS, followed by the loss of their newborn son. Overwhelmed by grief and uncertainty, she sought help at Bel-Air Hospital, a leading center for HIV care.
Initially, her CD4 count was at 450 cells/mm³, but despite not having severe physical symptoms, she was often depressed and weak. She began volunteering at the hospital, sharing her story to help others. However, as her CD4 count dropped to 250, her resolve was tested.
And this is the part most people miss: In 2007, Maya started antiretroviral therapy (ART). Her weight plummeted to 38 kg, and she struggled to keep food down. Initially, she took Triomune, but side effects forced a switch to ZLN, and then to TLE. From 2010 to 2022, she traveled for 1.5 hours each way monthly to collect her medication. This was a significant burden, but she persisted.
"In the early days, there was a huge rush because there were very few centers," Maya explains. Later, sub-centers reduced her travel time, but the challenges remained. Two years ago, she switched to the TLD regimen, but joint pain necessitated another change. Now, on second-line treatment, she still travels for 1.5 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 resilience that has defined her life for two decades. "There are days I don’t complain at all. 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," she says.
Controlling mother-to-child transmission is crucial. According to the India HIV Estimations 2024 report, India has an estimated 2.6 million people living with HIV, including 70,000 children, with 64,000 new infections recorded. AIDS-related deaths numbered 35,870 in 2023 and 32,000 in 2024 — that's four every hour. Dr. I S Gilada highlights that the biggest global challenge, access to ART, has been largely overcome. Now, the main hurdles are stigma and discrimination, which require innovative solutions.
ART can reduce viral load to undetectable levels, transforming HIV into a manageable condition. Eliminating mother-to-child transmission (MTCT) is a key goal. Although 80% of pregnant women are screened, only 64% of those with HIV receive full MTCT prevention. This gap underscores the need for continuous 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, these tools have meant 20 more years of life, raising her daughter, and finding purpose in helping others.
What are your thoughts on Maya's story? How can we collectively combat the stigma surrounding HIV and ensure everyone has access to the care they need? Share your opinions in the comments below.
