Author: Ms. Sonal Mehta, Vice President, Gender and Diversity, ECHO India

I joined the Gujarat State AIDS Control Society (GSACS) in 1999. By the end of 2000, we were striving to organize people living with HIV in the state. At that time, a few individuals were involved in a local organization's project, operating under their umbrella. However, no one was willing to step forward publicly to represent the cause, even though we were aware of some national leaders advocating for it. As a government officer, I initially hesitated to support the registration of a state network for people living with HIV. My reservations stemmed from two concerns: first, that such a group might unnecessarily challenge GSACS, and second, that the local NGO might perceive it as a betrayal – how naïve can a government officer be!

One moment stands out vividly from my early days with GSACS. A national leader, known for his advocacy, was invited to Gujarat to help us understand the importance of supporting the independent registration of a state network for people living with HIV. During our discussion, he posed an unexpected question: “What do you need to spread HIV?”

Confused, I thought I’d misheard him. In my naivety, I corrected him, saying, “You mean, what do we need to prevent HIV?” He smiled gently, but instead of agreeing, he repeated his question, emphasizing the point: “What do you need to spread HIV?” I was completely bewildered.

Sensing my confusion, he smiled again and provided an answer that has stayed with me ever since: “The simple answer? Just one person living with HIV. That’s all it takes, right?” I nodded, still unsure of where this was headed. Then he delivered what I now realize was one of the most profound lessons of my life: “If one person living with HIV can spread it, why hesitate to invest in the most powerful vehicle to prevent it? Empower people living with HIV—help them lead the charge. That’s how you stop it in its tracks.”

His words were like a revelation. He was right—this approach wasn’t just compassionate; it was practical. Supporting people living with HIV could transform prevention efforts: no stigma would mean early testing, timely treatment, reduced viral loads, safe practices, adherence to medication, and a life lived with dignity. It was the foundation for everything we aimed to achieve.

In that moment, I realized prevention wasn’t just about policies or programs—it was about people. Empowering those most affected wasn’t just the right thing to do; it was the only way to truly make a difference. That was my first lesson in why it is important to work from rights’ – human rights – perspective. It is not because poor people living with HIV, but it is because we want to ensure reduction in burden of disease, we want people to test themselves if there is high risk behaviour or incidence, we want to encourage safe sex and we want to ensure early treatment and adherence. The more one thinks the more one realizes that the biggest barrier to the entire circuit is stigma – self-stigma or observed/experienced discrimination.

Having worked both within the government at the state and national levels, and for a long time with civil society organizations, I’ve come to realize that we all have the same fundamental goal in HIV programming—control the spread of the infection and ensure that people living with HIV receive the treatment and care they need. But despite this common objective, the infection continues to rise. The latest data shows that infections among young people are on the rise, and that’s something I see firsthand in my work with young people affected by HIV.

In my experience, over the past decade, I’ve seen the number of young people acquiring HIV through risky behaviors—unsafe sex, chem sex (the practice of using drugs to enhance or prolong sexual experiences), and injecting drug practices—continuing to increase. And while we must avoid moral judgment, it’s critical that we ensure they are well-informed and empowered to make safe decisions. These young people need access to knowledge and support, so they can choose to protect themselves and make informed choices about their safety.

According to the Sankalak the progress on Antiretroviral Therapy (ART), a treatment regimen that uses a combination of HIV medicines to control the virus and prevent its progression, initiation, and retention has been demonstrated through indicators of (i) initiation of ART per 100 detections in Integrated Counselling and Testing centres (ICTC), (ii) 12 months retention among PLHIV (in %) and (iii) lost-to-follow-up (LFU) per 100 PLHIV ‘Alive and on-ART’ (see chart below). As evident, the initiation of ART for every 100 detections in ICTCs under the programme has improved significantly.

States/UTs wise distribution of ART Centres and average PLHIV per ART centre, March 2023

For every 100 on-ART PLHIV, 25 were LFU in 2017-18 and 2018-19. After assigning definitive outcomes to LFU under ‘Mission Sampark’ of the Govt of India, the number of LFU per 100 on-ART PLHIV decreased to 13 in 2019-20 and further decreased to 11 in 2022-23.

ART initiation, retention and LFU; 2017-18 to 2022-23

According to NACO data from 2023, approximately 0.20% of the population is living with HIV, totaling around 25.44 lakh people (up to 49 years). New infections are estimated at 68,000, with about 36,000 AIDS-related deaths.

The gap between new infections and deaths reflects broader issues of awareness, stigma, opportunity, access, and most importantly, rights! At the core of this lies ignorance—a lack of awareness, even when information is available.

Reflecting on my years of work in HIV at the state, national, international, and civil society levels, I often wondered how I would continue working closely with the community and amplifying their voices. But now, having joined ECHO India, I realize that the organization’s purpose aligns perfectly with my own philosophy—empowering people by demystifying knowledge. Knowledge fosters awareness, and awareness drives behavior change.

One of the key reasons India’s National AIDS Control Program is regarded as a global success (and perhaps, so is our response to COVID) is that people living with HIV are not just beneficiaries; they are active partners in policy-making, program implementation, and monitoring. At ECHO India, we follow this model by supporting healthcare professionals with the tools they need to provide care, while also elevating the voices of those affected by HIV. It is deeply satisfying to know that, through meaningful partnerships with PLHIV, ECHO India is enabling a future where everyone is informed about their health and empowered to take responsibility for it.

References

[1] https://naco.gov.in/sites/default/files/Sankalak_Booklet_Fifth_Edition_2023.pdf

[2] https://naco.gov.in/sites/default/files/HIV%20Estimates%202023%20Factsheets.pdf