Bihar and Jharkhand News Service
In the lead up to this year’s 24th International AIDS Conference (AIDS 2022), which is being held in Montreal, Canada, we at CNS (Citizen News Service) spoke to some young people who were born with HIV. They have overcome insurmountable challenges and obstacles in their childhood and adolescence, and are trailblazers for others, thanks to the support they got from Sneha Charitable Trust whose ‘I’mpossible’ programme, has improved the lives of these budding young adults of Snehagram across Southern India.
“Do not give up ever”, says Neha
One of the most heart-touching stories is of 23 years old Neha (name changed to respect confidentiality) from Goa, India. An only child, she was born with HIV and lived in Goa till the unfortunate demise of her parents.
“I lost my father and mother when I was 12 years old. They were both on medication for TB. But their HIV positive diagnosis came too late to save them. After their demise, I stayed with my aunt and, thanks to her, I joined a hostel in Mangaluru to continue my education till 12th standard,” shared Neha.
Neha has been taking antiretroviral medicines from the age of 13 years. But when she also got TB she had to move out of the hostel as “the school authorities were afraid that other children might get infected with TB through me.”
That was when she joined ‘Sneha Sadan’ or Sneha Care Home or Snehagram in Karnataka. Snehagram’s mission is ‘to ensure quality of life and future of the vulnerable children infected with HIV and lead them to a healthy and productive adulthood, by addressing their real and felt needs on education, health, psycho-social support, vocational training and life skill education’.
“There is more stigma and discrimination in society for girls living with HIV, as compared to boys. I faced it at home after my parents died. But my aunt stood by me. Stigma outside the home was of a different kind. People generally do not know the difference between HIV and AIDS. They treat people living with HIV to be the same as those having AIDS. If they have proper knowledge then they would perhaps care better for people living with HIV,” she said.
Despite contracting TB three times, before finally getting cured of it, and despite being on life long antiretroviral medication, Neha has come a long way. She has completed her graduation in Commerce and is among those who will get to present at AIDS 2022. “I am very excited to be presenting an e-poster on ‘Enhancing lives of children in HIV-positive widow-headed households’ in Montreal, Canada. This will be my first travel outside of India.”
Her message is to end all forms of HIV related stigma and discrimination. “We should not give up when faced with challenges. We should grow up and dare to dream, and work towards achieving our ambitions. We should also be reaching out to others in need of help, so that we can stand up for ourselves, and become role models for others.”
From “impossible” to “I’m possible”: A life influencing journey of Kaleshwar
The life of 22 years old Kaleshwar, who was born with HIV in Bidar in Karnataka state of India, bears a powerful testimony of transition from the seemingly ‘Impossible’ to ‘I’m possible’.
Kaleshwar said that, “I lost my parents to HIV due to lack of medication and proper guidance. My father passed away in 2006 and my mother in 2010 when I was just 10 years old. But I was lucky to have got the support of my uncle and aunt who had no children of their own and were ready to take care of me.”
“With help from networks working on HIV care programmes, I was introduced to ‘Sneha Sadan’ in Bengaluru. That was a new beginning of life for me- going to school, as well as interacting with other children living with HIV. A lot of learning came from this exposure. Those of us who had a family, were allowed to meet them occasionally and annually to keep the family bonds alive. But when it comes to relationships, it is not as strong as it would have been with our parents (if they were alive). But this is no longer a challenge for me as I am able to understand these things much better now”, he added.
Surmounting challenges, Kaleshwar is now studying for an MBA. He is also working with Sneha Charitable Trust, taking a major lead in “I'mPossible fellowship programme” through a peer-leader approach to increase access to health, education, social protection and sustainable livelihood linkages for adolescents and young people born and living with HIV.
Power of education to transform lives
“I see education as one of the main pillars to empower adolescents and children living with HIV. While proper medication has helped us lead a near healthy life like anyone else, we have not done much on the education front and many are not able to get the facilities to support them through basic or higher education” said Kaleshwar.
“Health does not bring us knowledge, even though it keeps us alive. But education is with which we can build our careers and our identity in society. So education should be prioritized for all, as part of the HIV care programmes. By education I mean both formal education- what we get through schools and colleges- and informal education where we are educated through our peers, relatives, friends, doctors to learn about various aspects and values of life” he added.
Kaleshwar is “Very excited to have got the opportunity to attend AIDS 2022 as a youth representative from India and hope to get a lot of exposure and understanding of various minds and cultures. This will be my first international trip.”
His message for the youth: “One thing that has supported me is the exposure and the opportunities I have got. If, like me, one grows up in a place where one is encouraged to advance one’s career, it makes a lot of difference. So the vision should be to Create opportunities, and build exposures for our growth.”
Sport teaches us never to give up in life, says Babu Seenappa
22 years old Babu Seenappa, who was born with HIV, has run several marathons globally, getting accolades since his first run in 2009. He has taken up sports as a medium of transformation and to spread the message of hope. He facilitates HIV infected and affected children, helping them to keep healthy by introducing running in their lives.
Babu comes from Bidar. He lost his father at the age of 4 years and his mother when he was 7 years old. After his parents’ death, he coped with dejection and ill-treatment from other family members, who harboured misunderstandings about HIV. “When my uncles and aunts got to know that I was HIV positive, they started isolating me, keeping a separate set of utensils for me. They also started speaking ill of my dead parents and accused my mother of bringing HIV in the family through her immoral behaviour. They wanted to get rid of me. Luckily they found this place with the help of a social worker”, he said.
Thus he was brought to Sneha Care Home in Bangalore where “I rebuilt my childhood and grew up to be an adolescent. Now I am a mentor in the “I’mpossible Fellowship programme. I also teach psychology and environmental science to children.”
Babu feels that awareness on how HIV transmits has risen and people now do understand that HIV is not as infectious as coronavirus and that there is no need to isolate a person living with HIV. But some HIV-related stigma and myths still abound.
“Many people still believe that HIV is transmitted only through sexual contact. As long as you are a child living with HIV, they will understand that it was transmitted from the mother during childbirth. They believed me that I was born with HIV till I was a child. But now, when I am a grown up, many think I got it because of my promiscuous behaviour. During my visits abroad I was shocked to meet some well-educated youth who had very little idea about the different routes of HIV transmission. A lot has to be done in the general population and in the community to dispel such myths”, he said.
Running as a way of life
“I started running at the age of 9. My first run was a two kilometres race in 2009 that offered a cash prize of INR 500 to the winner. I came almost last in the race but my coach saw some potential in me. So I started training seriously and from the slowest I became the fastest runner in my group and people started looking at me as their role model. I became healthier, stronger and more confident. I have taken part in many marathons in many countries,” said Babu.
“I saw that there is no discrimination in running. It does not matter if the runner is living with HIV or not. They treat a runner just like any other person. I shared my experiences of running and spread the message of hope to others living with HIV that you are no less than anyone else and can compete in the same manner as those who are HIV negative. I have now started training around 50 children for running. Sports teaches us never to give up in life”, he added.
He is also a presenter at AIDS 2022. His e-poster is on “Say yes to physical fitness: The impact of a structured physical activity program on health outcomes amongst children and adolescents living with HIV in South India.”
Babu’s message: “Please give equal opportunities to every child and they will prove your prejudiced notions about HIV-infected children wrong. They will match or surpass your expectations. Giving an opportunity is the first step to dispel the darkness in the lives of children living with HIV.”
The statistics in India’s Karnataka state reveal the severity of the challenges facing the over 16,000 youth with HIV who attempt to live on their own in mainstream society:
- 30% become non-compliant with taking daily HIV medications because of hopelessness, poverty or inability to navigate public resources, resulting in high rates of complications and co-infections like TB.
- 40% cannot continue their education
- 25% get only temporary employment as labourers and have no opportunities for up-skilling
- 40% have no reliable support system, resulting in social isolation and severe psychological problems
Whether it is preventing parent to child transmission of HIV, or ending all forms of HIV related stigma and discrimination, there is so much more we can, and could have done, to make life more humane for those living with the virus. It is important for governments to ensure that free antiretroviral therapy and a broad range of HIV care services reach people living with HIV uninterruptedly and make them virally suppressed. In the current times, with science-backed HIV care services, no one should be suffering from AIDS.
(Shobha Shukla is the award-winning founding Managing Editor and Executive Director of CNS (Citizen News Service) and is a feminist, health and development justice advocate. She is a former senior Physics faculty of prestigious Loreto Convent College and current Coordinator of Asia Pacific Regional Media Alliance for Health and Development (APCAT Media). Follow her on Twitter @shobha1shukla or read her writings here www.bit.ly/ShobhaShukla)