Youth-led initiatives spark hope for children and adolescents living with HIV

Shobha Shukla *

"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,” said a youth living with HIV who is interning with Human Touch Foundation in Goa, India.

"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…”

Internal stigma (or self-stigma) is real, incisive, and invisible. But people who face it are visible.

“It is important to tackle stigma and discrimination at all levels of the socio-ecological level - individual, family and peers, community and structural level, to affect sustainable and transformative change. We need evidence-based multi-level interventions (to tackle all forms of stigma and discrimination – including internal stigma) for lasting change,” said Nadine Ferris France, CEO of Beyond Stigma and Certified Facilitator of Inquiry-based Stress Reduction (IBSR).

Internal stigma is a mindset of negative beliefs, thoughts, and behaviours about HIV, which 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.

Another female youth living with HIV shared with CNS: “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 (perhaps she meant neighbourhood) 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.”

"I am heard there"

“I could overcome my self-stigma and fear of discrimination because of Human Touch Foundation. From my childhood they have supported me with a range of services, like nutritional counselling for example. My voice is heard there,” she said. Patriarchy adds another intersectional layer to stigma and discrimination.

Her both parents are living with HIV. Mother works but father is out of work. She had to drop out of school due to stigma and discrimination. She chose to work. But she had to quit her job at a local supermarket due to stigma and discrimination. Luckily, she found a job as Outreach Assistant, Adolescent Health and Wellbeing at Human Touch Foundation and now helps children and other young people with HIV who come to seek help and support.

"I got to know my HIV status at the age of 13"

Another young person living with HIV shared with us: “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.”

He added: “I searched for institutional care on the internet myself. I found one and went over there. I stayed there too and found other young people in similar situation. Empathy helped a lot. But still there were a lot of gaps – I was not fully aware of HIV for example. That is when I met Peter Sir.”

Peter Borges is the CEO of Human Touch Foundation in Goa. He has been a widely respected voice for helping improve youth-led HIV responses grounds-up.

“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. Earlier when I was in 8th or 9th standard class in school, the staff did not have the kind of connect needed to help us tide through so many questions about HIV and how it impacts our lives,” he said.

“When Peter Sir had food with us it was another misconception done away with. Having food with people regardless of their HIV status is normal and does not put anyone at any risk. Overtime Peter Sir encouraged us to be someone in our lives and guided or helped find guidance,” he added. “I had interest in graphic designing course, but it was very expensive. I got financial support through Human Touch Foundation and was able to complete my course. Right now, I work as a graphic designer.”

Another female youth told us that “I am currently doing a short-term course in hotel management along with interning at Human Touch Foundation.”

Beacon of light to help the young is among themselves

When young people themselves took up the cudgels to provide counselling and support to other children and young people, the impact was profound.

“Youth are the best equipped to lead the response to HIV,” said the young person who is living with HIV and interning at Human Touch Foundation and helping other youth.

“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,” said Sandhya Chavan, Lead for Adolescent Health and Wellbeing, Human Touch Foundation. “It is important to look after their mental health and overall wellbeing. It also means going beyond HIV-related issues, for example, the need to connect them to educational spaces or career opportunities.”

“Young leadership is so important in HIV response (as a lot of new HIV infections happen among them too). I am a young person myself and as young mental health professional, I help the young people living with HIV who perhaps can connect with me better. Young people with HIV face unique challenges. Many of our antiretroviral therapy centres (or other HIV care centres) may have only one counsellor who despite trying to do an important service to the best of her/his/their ability, may not have time to address so many other issues our young people are facing and need counselling support for,” said Masooma Sheikh, a counselling psychologist, and Lead for adolescent health and well-being, Human Touch Foundation.

“Proper mental health services in HIV care centres like antiretroviral therapy centres goes a long way in helping the youth. We need a more holistic approach too,” said Sheikh.

Listen to the young people we serve

“Apart from providing a whole range of services to the young people with HIV (including related to education or career counselling), we also need to empower them so that they can have their voice feed into HIV related discourses at local, national, regional and global levels. Human Touch Foundation has successfully been able to progress towards this and young people themselves represent our work at different conferences, including 25th International AIDS Conference or AIDS 2024,” said Venicia Fernandes, Secretary of Human Touch Foundation.

She added: “In addition to mental health support, even psychological or economic counselling or support may be needed. It is important that youth should be leading the initiatives for the young people – and must get a seat at the table of decision making.”

Journey of 15 years of Human Touch: Anniversary on 12th August

“It has been a long history of 15 years as we at Human Touch Foundation will complete 15 years on 12th of August 2024. We began working with children living with HIV and as they grew up, we curated the programme too to suit their needs,” said Peter Borges, CEO of Human Touch Foundation.

He added: “We conceptualised the camps along the way. 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.”

Human Touch is also trying to address needs of the young people related to their relationships, and sexual and reproductive health and rights. Very human concerns of a growing young person like “Are we going to get married”, “will we have a child”, etc cannot be ignored. Human Touch is also addressing substance abuse, TB and HIV co-infection, and child sexual abuse. That is why Human Touch Foundation has integrated the whole comprehensive sexuality education component in its initiatives.

“We never institutionalize our children because we believe that children are best raised in families. So, we build resilience of those families, and we try to give the support system which they require at the community level. We have almost 200 young people listed with us,” said Peter.

Effort to initiate viral load monitoring in Goa state

Human Touch Foundation filed a complaint with Human Rights Commissioner of Goa State of India and won the legal case which led to initiation of viral load monitoring in the state.

Another salutary work Human Touch Foundation did was during the lockdown imposed in early 2020 due to COVID-19 pandemic. Their team members went door-to-door to deliver lifesaving antiretroviral therapy to people living with HIV. Uninterrupted supply of medicines is so critical.

Free vocation training for young people with HIV is another area they are trying to connect the dots.

Dr Kashyap Bandodkar, a medical doctor who is pursuing postgraduate course in the department of oral medicine and radiology at the government-run Goa Dental College and Hospital, and works as a volunteer with Human Touch, has participated in several camps for young people organised by Human Touch (as a medical resource person).

“Usually patients appear as a ‘number or statistic’ in a report,” said Dr Kashyap. “But experiences (like Human Touch) tell us the lifestory behind those numbers or statistics. This help us – doctors – provide better care because I believe that humane and holistic care is so key,” he said.