In the face of deep-seated stigma and discrimination, young people living with HIV in Goa, are finding hope and resilience through the Human Touch Foundation. Shobha Shukla explores their personal journeys and examines the collective efforts that are transforming their lives and challenging societal norms

Living with HIV often comes with a heavy burden of internal and external stigma. For many young people, this fear of discrimination can be paralyzing, affecting their ability to live normal lives. HIV-related misconceptions remain a significant barrier for those living with the virus, impacting their mental health, relationships, and opportunities in life. However, through the dedicated support of the Human Touch Foundation, these youths are not only overcoming their fears but also becoming advocates for change in their communities.

The Weight of Stigma

A young person living with HIV shared, “As a young person living with HIV, I had self-stigmatised myself due to the fear of discrimination… fear of discrimination if I dare disclose my HIV positive status to others… this fear had stopped me from living life like a normal person.” This sentiment, echoed by many, underscores the profound impact of internal stigma.

Internal stigma, a mindset of negative beliefs, thoughts, and behaviours about HIV, manifests as shame, guilt, feelings of contamination, reduced self-efficacy, self-loathing, low self-esteem, and self-rejection. “Internal stigma happens when we internalise external stigma and judgements and believe that they are true. Internal stigma also happens in the absence of external stigma and discrimination,” explained Nadine Ferris France, CEO of Beyond Stigma.

A youth shared his trauma, “I and my youth peers have confronted HIV-related stigma and discrimination in schools, workplaces, and societal levels. Sometimes, it is the teachers who were not cooperating or discriminating against them. The fear of disclosure – which means sharing our HIV positive status with family members, friends or others in society – the fear of being discriminated, is faced by many… the fear if we would be thrown out of the house or will our friends unfriend us…”

The Human Touch Foundation, based in Goa, India, is dedicated to supporting young people living with HIV. The organization provides a comprehensive range of services including mental health counselling, nutritional support, educational and vocational training, and medical assistance. By fostering a supportive community and empowering youth-led initiatives, the foundation addresses stigma and discrimination at multiple levels. Their efforts ensure that those living with HIV can lead healthier, more fulfilling lives while advocating for broader societal change.

A young girl living with HIV shared how the Human Touch Foundation helped her overcome her fears of stigma and discrimination: “From my childhood I have been touched by Human Touch Foundation which helped me overcome my fears of stigma and discrimination related to disclosure – and helped me in various ways.”

She added, “As I am living with HIV, I faced a lot of stigma and discrimination from my own family as well as from society. People in the society told the family to not let me come out otherwise I will spread the virus to their children. I even faced it in my relationship with one guy. I knew him for one year and had shared everything with him but still he blamed me that I got infected because I have been sleeping with others.”

Despite these challenges, she found a supportive community within the Human Touch Foundation, which provides a range of services including nutritional counselling, mental health support, and job opportunities.

Personal Triumphs and Collective Support

Another young person recounted their journey: “I got to know my HIV status at the age of 13. I was with my relatives because I had lost my parents. That is when I first felt being stigmatised and discriminated against by my own family. For example, I was told not to use the common family nail cutter because if any blood comes out while cutting my nails then it can put others at risk. Or sometimes there were separate utensils for eating food. It used to hurt me.”

Finding support through the Human Touch Foundation, this individual connected with peers facing similar challenges and received guidance from Peter Borges, the foundation’s CEO. “Peter Sir helped me a lot from the very beginning. He helped me with my documents too. We used to have residential camps back then too, with adolescents living with HIV. I learnt a lot from these camps. Doctors were involved in these camps where we learnt a lot about HIV and how can we overcome problems we face.”

The Power of Youth Leadership

The Human Touch Foundation emphasizes the importance of youth-led initiatives in the HIV response. “Youth are the best equipped to lead the response to HIV,” said a young intern at the foundation. Sandhya Chavan, Lead for Adolescent Health and Wellbeing, highlighted the comprehensive support provided: “We at Human Touch Foundation  provide a range of youth-led services, such as mental health counselling, psychosocial support, help them avail a range of social protection schemes, nutritional packages, medical help, or treatment adherence support, among others.”

Masooma Sheikh, a counselling psychologist at the foundation, stressed the need for proper mental health services in HIV care centres and a holistic approach to support young people living with HIV.

A Beacon of Hope and Resilience

As the Human Touch Foundation celebrates its 15th anniversary, its impact is evident in the lives it has touched. Peter Borges reflected on the journey: “Human Touch always had something different to offer when it came to support system or ecosystem which surrounded HIV care and support. For example, young people themselves speaking at different conferences including AIDS 2024 is so important. Lately, the realisation has grown over us about the importance of resilience: we must focus more on building the resilience of the young people. Issues like relationships or livelihoods cannot be missed while young counsellors themselves provide mental health services.”

The foundation continues to address various needs, including relationships, sexual and reproductive health, substance abuse, TB and HIV co-infection, and child sexual abuse. Their commitment to non-institutional care and resilience-building for families and communities remains steadfast.

The Human Touch Foundation has also been instrumental in initiating viral load monitoring in Goa and ensuring the uninterrupted supply of antiretroviral therapy during the COVID-19 pandemic. They offer free vocational training for young people with HIV, helping them build skills and secure employment.

Dr. Kashyap Bandodkar, a volunteer with the foundation, emphasized the importance of humane and holistic care: “Usually patients appear as a ‘number or statistic’ in a report. But experiences (like Human Touch) tell us the life story behind those numbers or statistics. This help us – doctors – provide better care because I believe that humane and holistic care is so key.”

The Human Touch Foundation’s journey and the stories of those it supports underscore the importance of tackling HIV-related stigma and discrimination through empathy, education, and comprehensive support. Their work serves as a beacon of hope and a model for other organizations worldwide.

Despite significant advancements in the treatment of HIV, societal stigma continues to pose a major challenge for those living with the virus. The personal stories shared by young people in Goa highlight the persistent fear of discrimination that can prevent individuals from living their lives to the fullest. Internal stigma, which manifests as self-loathing and low self-esteem, often results from the external judgments and prejudices of society.

Organizations like the Human Touch Foundation are making remarkable strides in addressing these issues. By providing comprehensive support services, fostering youth-led initiatives, and promoting resilience, the foundation is helping to dismantle the barriers that stigma creates. Their work emphasizes the importance of empathy, understanding, and community in overcoming the challenges faced by people living with HIV.

However, the fight against stigma requires collective effort. It is crucial that society as a whole becomes more informed and compassionate towards those affected by HIV. We must reject discriminatory attitudes and instead offer support and acceptance. By doing so, we can create an environment where individuals living with HIV can thrive without fear of prejudice. Only through such a unified approach can we hope to eradicate the stigma associated with HIV and ensure that everyone has the opportunity to live a healthy, fulfilling life.

(Shobha Shukla is Managing Editor and Executive Director of Citizen News Service (CNS) and a health and development justice advocate.  She is Coordinator of Asia Pacific Regional Media Alliance for Health and Development (APCAT Media) and Global AMR Media Alliance; views are personal)