How will children living with HIV grow up normally when HIV-stigma still lurks?

Shobha Shukla *

Although over four decades have passed since the first case of HIV got diagnosed globally, and commendable progress has been made to help people living with HIV lead normal and fulfilling lives, yet HIV-related stigma and discrimination still lurks.

Father Teji Thomas, Director of Snehagram, which is a home away from home for children and young adults living with HIV, is a professional nurse and has been working in the field of public health, especially HIV care and control, since more than 14 years. He spoke to CNS (Citizen News Service) around the 24th International AIDS Conference or AIDS 2022 taking place in Montreal, Canada.

Father Teji Thomas said: “While working with adolescents and youth I have experienced many HIV stigma-related challenges. Some of our youth who got jobs in cities like Bengaluru, stayed in paying-guest accommodations. But when their friends got to know about their HIV status they did not want to be in the same room with them. This shows that stigma is still there that makes livelihood a challenge. Recently one girl was asked to leave her paying-guest accommodation on account of this. Even the owners object to rent the place to those living with HIV.”

He further added: “There are some children HIV positive in our institute who do not have anybody of their own family or relatives whom they can visit to celebrate their birthdays or spend their school holidays. But we are unable to send them to the house of our acquaintances / friends (who are willing to have them in their family) for those short periods due to very strict government rules.

We have to take permission from the authorities, including Child Welfare Committees, among other procedures and rules, which are often long and cumbersome processes. So, there are emotional issues with these orphan children who cannot go out of the ‘Sneha Sadan’ to spend some time with a family. Handling them becomes a big challenge at times. I have faced this often with children who are below 18 as I am not in a position to take them anywhere without the permission of the authorities.

Moreover it is also a big risk for me to send such boys or girls to any of my friends’ house or even to my house because if anything happens all responsibility is on me. From my experience, the love gap of parents or grandparents or other family members is very much seen in those children.”

“We have some HIV positive children who were picked up from the roadside, under the bridges, or near waste bins and handed over to us. We have no clue about their families, if any. It has been easier to handle other children because when it is time for holidays they can go back to their home to a grandmother or an uncle. And even if they are not very acceptable in their family they still look forward to going there for a while and bring back some good memories with them, even if it was a small gesture like being allowed to play with the aunt’s children”, said Father Thomas.

Disclosure is never easy

Perhaps, disclosure of HIV status is never easy. But when it comes to children living with HIV, the issue of disclosure, when and how to tell, and a range of other complexities, make it even more difficult.

Father Thomas agreed: “Disclosure is another tricky issue. For example, I would gather all children living with HIV who were 11-12 years old and with the help of a psychology nurse, speak with them. We would ask them do you know why you are taking one medicine every day? They would ask a lot of questions. We would tell them that you have one small sickness but you can have a normal life as long as you take the medicine daily. Then once every 6 or 12 months, we hold special sessions for them with the help of other peer mentors and older girls and boys living with HIV to make them understand and clear their doubts.”

However, as children grow up, newer challenges surface. “Whenever any youth goes out to get a job to earn their living, I ask them to not reveal their status of being HIV positive at their workplace or in their paying-guest accommodation, and also to keep their medicines away from others in a safe place. This is a very sad but unavoidable thing to do, because otherwise there is always a risk of losing their job or accommodation. As far as school is concerned, all children living in Snehagram study inside the campus and follow the national open school curriculum,” he said.

However, some children who study in other cities like Mangaluru in regular schools, do face heightened HIV-related stigma from fellow students. On a positive note, there are initiatives to stamp out stigma. For example, “the catholic nuns running the school are very supportive and explain to the teachers and parents that they cannot spread the disease by playing and eating with others. Teachers tell the parents and other children that we are living with them, playing with them, eating with them and it is okay to have these children studying with the other children” said Father Thomas.

Speaking on the theme of AIDS 2022, “re-engage and follow the science”, Father Thomas said: “It is important that we create awareness in the general public (even the educated ones) and share with them correct information and knowledge about HIV and AIDS. Every Sunday, we at Snehagram eat food cooked by the adolescents and our youth living with HIV (we teach all of them how to cook basic food). We tell the outsiders, who sometimes visit our centre, to do some volunteer work as it is safe to be with these children and adolescents living with HIV. They are also welcome to send their children to spend some time with them. Some understand this but there is also a group of people who refuse to accept the reality and harbour a lot of stigma and fear of getting HIV just by coming near to these children.” All school going children should be made aware of knowledge around various diseases, including AIDS, so that there is acceptance and awareness in society in the general population.

Snehagram, run by Sneha Charitable Trust of Bengaluru, India, is dedicatedly working for the care of children living with HIV. India has an estimated 145,000 children living with HIV who are below the age of 15 years. Children account for 7% of all the new HIV infections. Despite some decline in HIV adult prevalence worldwide and increasing access to treatment, the number of children affected by, or vulnerable to, HIV remains alarmingly high.

If we are to end AIDS by 2030, as promised by all governments globally, the nearest goalpost that we should have met in the past, but failed to do so till now, is to eliminate parent to child transmission of HIV. We have the tools and science-backed approaches to do so. Some countries in our neighbourhood have already eliminated parent to child transmission of HIV and no child there is born with HIV. We can do it too.