HIV care is essential and lifesaving, but not enough for living normal lives

Shobha Shukla *

Lifesaving antiretroviral therapy, as well as the full range of HIV care and support services are indeed essential but not enough to ensure that children and adolescents living with HIV can live a fully normal life. From getting education, vocational training, social and economic support, to pursuing careers of their choice and aspirations, the spectrum may differ from person to person but is surely much wider and deeper than the very essential HIV care services.

“I have been working with children living with HIV for last 20 years. They often shared with us that it is not possible for them to get a good job, or to get a good education, and that it is a difficult life to live having to be on medicines lifelong. But there were a few kids who wanted to know what they should do to get a good education, a good job, and stay healthy. So I felt that it is a choice between whether you think it is impossible or whether you can make it possible. Hence the name I’mPossible (of a fellowship programme),” said Dr Michael Babu Raj while speaking with CNS (Citizen News Service). Dr Raj is Deputy Director, I’mpossible Fellowship Programme of Sneha Charitable Trust and former Deputy Director of Karnataka Health Promotion Trust (KHPT).

He shared: “The I’mPossible Fellowship talks about the choices we have in life and the freedom to choose the way we want to lead our life. But for that we need to focus on certain things like- taking care of our health, ensuring treatment adherence, getting educated and not falling back on our studies. It is just not about attaining degrees but also learning about values of life, and of being hopeful and trustworthy. Every work in the beginning is difficult for you but it is not impossible for you. Today we have children amongst us who have taken ownership of their lives and they are moving from the ‘I am Impossible’ to the “I'm possible”, which is becoming a reality in many children’s lives.”

Dr Michael Babu Raj added: “Noted thought leader Dr Bhimrao Ramji Ambedkar had said that education is empowerment so I thought of focussing on education to empower the people whom I work with. Then I came across children living with HIV while working in an HIV care centre where we were caring for the HIV positive parents and there were small kids. I felt the best thing I can do is to work with these kids because they are very special kids who are so loving and caring when we respond to them positively.”

Dr Michael and his team have been collaborating with reputed institutions like Johns Hopkins University. “These children have stood out as very strong children and not as somebody who will give up without trying. If we are able to create positive spaces for them that are full of opportunities, they are going to make a big difference.”

The theme of this year’s AIDS conference (24th International AIDS Conference or AIDS 2022) is “re-engage and follow the science.” Dr Michael Babu Raj said that, “I really feel that re-engaging and following the science is a very apt theme. It was true of COVID-19 also, because there were many scientific evidence-based strategies which we knew that could have prevented or reduced transmission of COVID-19, but still we failed to do that. Many things went wrong. In the context of a country like India, there are still some children who are born HIV positive, despite knowing how to prevent parent to child transmission of HIV. Eliminating parent to child transmission of HIV is still a challenge, even when we know what needs to be done. It is the responsibility of each one of us to achieve zero parent to child transmission of HIV because we know what is the science and we know how the transmission can be stopped. 95 percent of the children are born negative. Then why cannot the remaining 5 percent children also have an HIV-free birth?”

He added: “We have come a long way when it comes to HIV today. People are living healthy lives despite being infected. But one thing we need to build back in each one of us is that we should not stop believing in trust and hope. We should build our lives together and give hope and love to every child who may be infected with HIV or with any other disease. And we can certainly make a difference in their lives. That is what science teaches us- to do things that are simple. You follow the rules, you are safe, and you can move forward with confidence.”

Disclosure that a child is living with HIV is never easy. “There are many children who still do not know about HIV and why have they got this infection as their parents have not disclosed it to them. Every child has the right to know what is the infection he or she has, and the right to take the treatment with knowledge and not with hiddenness. I think that we should take that message very strongly back from the conference that it is the right of everyone, including children, to know about their health status,” said Dr Raj.

Dr Michael Babu Raj’s strategy has been to build on the strength of the community and enable them to become catalysts of social and economic change.

He told CNS that at the centre where he works, out of the 63 children who are on antiretroviral therapy and went for viral load testing, 60 are virally suppressed, as of March 2022. Only three have viral load above 200. “Currently we are not facing any drug shortage. All the children are on antiretroviral therapy. Viral load testing is done at St John's Hospital which is a private facility. But since it is under public-private partnership...the guidelines are as per the government guidelines, and viral load testing is done free of cost.”

This is tremendous achievement indeed. Let us hope that it becomes a reality at national and global levels too so that most of the people who are receiving lifesaving antiretroviral therapy, are virally suppressed.