Not defined by HIV: Generation ready to rise
For Mary, 21, (name changed to protect and respect confidentiality), HIV has been part of her life for as long as she can remember. She was about six years old when a nun at the care home for children living with HIV told her that she was HIV positive.
Today Mary lives with her father, sister and her father’s brother’s family. Mary works in a beauty parlour, takes her medication regularly and has an undetectable viral load. Yet she has not disclosed her status to her friends or employer. Achieving and maintaining undetectable viral load is important for Mary because it ensures that she remains healthy and leads a normal life as well as there is zero risk of any further sexual transmission of HIV because undetectable equals untransmittable or U equals U (U=U).
Her story illustrates an important reality of the HIV response: while medical advances have transformed HIV into a manageable condition, stigma, misinformation and gaps in healthcare systems continue to challenge lives of people living with the virus.
This is especially important for children and young people who are growing up with HIV. With undetectable viral load, they should be leading normal lives - just like any other child without the virus, but because of these barriers, it is not so.
For Mary and another young woman, Saraswati, 26, (name changed to protect confidentiality), the next phase of the HIV response must go beyond medicines.
It must rethink stigma, rebuild systems and enable people living with HIV to rise with dignity.
For both women, the first step is education.
Mary says people need to understand what HIV actually is instead of immediately equating it with AIDS. HIV is not a synonym for AIDS.
“When I tell people, 'I have HIV,' they think I have AIDS. They directly jump to AIDS. They think HIV means AIDS. But HIV and AIDS are very different."
Saraswati, who grew up in a hostel and learned she was living with HIV at around 12, has encountered the same misconception.
Both women believe HIV education should begin in school and should go much further than the few basic facts they were taught.
"When I was in school there was a topic on HIV, but it was not explained very properly," Mary says.
She wants HIV education to be accompanied by comprehensive sexuality education so that young people understand combination prevention, infection transmission, treatment and sexual health without shame, misinformation or prejudice.
There also needs to be greater public understanding of U=U or Undetectable equals Untransmittable. A person living with HIV who is on effective treatment and maintains an undetectable viral load cannot sexually transmit HIV.
“This message should go out loud and strong in the public,” Saraswati says.
For young people living with HIV such knowledge can make the difference between being accepted or being isolated. Making accurate information available to all is not merely a public-health issue. It can determine whether a child is accepted at school, whether an adult feels safe in disclosing her/his status, and whether a young woman believes she can have a relationship and marry without being judged.
Mary has experienced both acceptance and discrimination at school.
From Class 1 to Class 10, she did not enjoy school. Some teachers knew which children were living with HIV, and information about their status reached some parents and other students during parent-teacher meetings. The children subsequently faced discrimination.
But when she was in Class 12, Mary confided in her class teacher why she had to take leave once a month to go for a blood test or to collect medicines from the ART (antiretroviral treatment) centre.
The teacher responded with compassion and confidentiality.
“She was a very good teacher. She kept this information to herself and never discriminated.”
The teacher even organised a birthday party for her, which Mary recalls as “the most memorable and enjoyable event for me.”
The teacher’s empathy indeed touched Mary’s heart. One supportive adult made an enormous difference in her life.
But the fear of stigma remains. Mary has not disclosed her status at her workplace for fear of losing her job. Every month, she needs to visit an ART centre to collect her medicines. Rather than risk revealing her HIV status, she sometimes tells her employer that she is unwell or has to take her father to the hospital.
“I have to take leave by telling a lie,” she says.
For Mary, secrecy is not simply a matter of personal choice. It is a response to the fear of stigma and a strategy for protecting her livelihood.
Today Mary lives with her father, sister and her father’s brother’s family. Mary works in a beauty parlour, takes her medication regularly and has an undetectable viral load. Yet she has not disclosed her status to her friends or employer. Achieving and maintaining undetectable viral load is important for Mary because it ensures that she remains healthy and leads a normal life as well as there is zero risk of any further sexual transmission of HIV because undetectable equals untransmittable or U equals U (U=U).
Her story illustrates an important reality of the HIV response: while medical advances have transformed HIV into a manageable condition, stigma, misinformation and gaps in healthcare systems continue to challenge lives of people living with the virus.
This is especially important for children and young people who are growing up with HIV. With undetectable viral load, they should be leading normal lives - just like any other child without the virus, but because of these barriers, it is not so.
For Mary and another young woman, Saraswati, 26, (name changed to protect confidentiality), the next phase of the HIV response must go beyond medicines.
It must rethink stigma, rebuild systems and enable people living with HIV to rise with dignity.
Rethink: Change what people think they know about HIV
For both women, the first step is education.
Mary says people need to understand what HIV actually is instead of immediately equating it with AIDS. HIV is not a synonym for AIDS.
“When I tell people, 'I have HIV,' they think I have AIDS. They directly jump to AIDS. They think HIV means AIDS. But HIV and AIDS are very different."
Saraswati, who grew up in a hostel and learned she was living with HIV at around 12, has encountered the same misconception.
Both women believe HIV education should begin in school and should go much further than the few basic facts they were taught.
"When I was in school there was a topic on HIV, but it was not explained very properly," Mary says.
She wants HIV education to be accompanied by comprehensive sexuality education so that young people understand combination prevention, infection transmission, treatment and sexual health without shame, misinformation or prejudice.
There also needs to be greater public understanding of U=U or Undetectable equals Untransmittable. A person living with HIV who is on effective treatment and maintains an undetectable viral load cannot sexually transmit HIV.
“This message should go out loud and strong in the public,” Saraswati says.
For young people living with HIV such knowledge can make the difference between being accepted or being isolated. Making accurate information available to all is not merely a public-health issue. It can determine whether a child is accepted at school, whether an adult feels safe in disclosing her/his status, and whether a young woman believes she can have a relationship and marry without being judged.
The price of being ‘different’
Mary has experienced both acceptance and discrimination at school.
From Class 1 to Class 10, she did not enjoy school. Some teachers knew which children were living with HIV, and information about their status reached some parents and other students during parent-teacher meetings. The children subsequently faced discrimination.
But when she was in Class 12, Mary confided in her class teacher why she had to take leave once a month to go for a blood test or to collect medicines from the ART (antiretroviral treatment) centre.
The teacher responded with compassion and confidentiality.
“She was a very good teacher. She kept this information to herself and never discriminated.”
The teacher even organised a birthday party for her, which Mary recalls as “the most memorable and enjoyable event for me.”
The teacher’s empathy indeed touched Mary’s heart. One supportive adult made an enormous difference in her life.
But the fear of stigma remains. Mary has not disclosed her status at her workplace for fear of losing her job. Every month, she needs to visit an ART centre to collect her medicines. Rather than risk revealing her HIV status, she sometimes tells her employer that she is unwell or has to take her father to the hospital.
“I have to take leave by telling a lie,” she says.
For Mary, secrecy is not simply a matter of personal choice. It is a response to the fear of stigma and a strategy for protecting her livelihood.
Rebuild: Make healthcare access fit people's lives
Mary wishes that the ART centres’ services are made more convenient for the users.
At the hospital she goes to collect her monthly dose of medicines, the official timings are 9 am to 4 pm. But she says that in actual practice its operations often begin later - staff may arrive late and medicine dispensing begins around 10 am - resulting in an unnecessary long wait for the queueing people.
People then go through several stages. The process entails submitting records, have their weight (and blood) checked, receiving a prescription, collecting medicines and getting counselling.
There is also a common queue for people coming for blood tests and those who only need to collect medication.
“More than half the day is gone, every time,” she rues.
The problem is not limited to her. She says many people at the centre complain that the long wait at the ART centres affects their work schedule for the day.
Her suggestion is simple: open earlier, streamline the process and create separate queues.
“The centre should open at 8 am and the process should be expedited so that people do not have to take leave from office.”
The issue is not just about convenience. Every unnecessary hour spent at an ART centre can mean lost wages, missed classes or uncomfortable questions from employers.
Saraswati has a more manageable situation because luckily her ART centre is close to her workplace and her employer allows her to take time off. But in her previous job where she provided home care to elderly people, collecting medicines was much harder.
Indian government's National AIDS Control Programme (NACP) provides free, lifelong ART and has dedicated services for children and adolescents. It also recognises the need for psychosocial support, education, skill development and social support for children living with HIV.
But Mary's experience highlights an important distinction: having treatment available is not the same as making treatment accessible.
For both Mary and Saraswati, gender adds multiple intersectional layers to the stigma surrounding HIV. For women, this compounded stigma is particularly acute when it comes to relationships and marriage.
Mary says that females living with HIV are judged more than males living with HIV. She describes a double standard: a man living with HIV may face relatively little opposition to marrying a woman who is HIV negative, while a woman with HIV may be rejected by a prospective partner's family.
At the hospital she goes to collect her monthly dose of medicines, the official timings are 9 am to 4 pm. But she says that in actual practice its operations often begin later - staff may arrive late and medicine dispensing begins around 10 am - resulting in an unnecessary long wait for the queueing people.
People then go through several stages. The process entails submitting records, have their weight (and blood) checked, receiving a prescription, collecting medicines and getting counselling.
There is also a common queue for people coming for blood tests and those who only need to collect medication.
“More than half the day is gone, every time,” she rues.
The problem is not limited to her. She says many people at the centre complain that the long wait at the ART centres affects their work schedule for the day.
Her suggestion is simple: open earlier, streamline the process and create separate queues.
“The centre should open at 8 am and the process should be expedited so that people do not have to take leave from office.”
The issue is not just about convenience. Every unnecessary hour spent at an ART centre can mean lost wages, missed classes or uncomfortable questions from employers.
Saraswati has a more manageable situation because luckily her ART centre is close to her workplace and her employer allows her to take time off. But in her previous job where she provided home care to elderly people, collecting medicines was much harder.
Indian government's National AIDS Control Programme (NACP) provides free, lifelong ART and has dedicated services for children and adolescents. It also recognises the need for psychosocial support, education, skill development and social support for children living with HIV.
But Mary's experience highlights an important distinction: having treatment available is not the same as making treatment accessible.
Women face an additional burden
For both Mary and Saraswati, gender adds multiple intersectional layers to the stigma surrounding HIV. For women, this compounded stigma is particularly acute when it comes to relationships and marriage.
Mary says that females living with HIV are judged more than males living with HIV. She describes a double standard: a man living with HIV may face relatively little opposition to marrying a woman who is HIV negative, while a woman with HIV may be rejected by a prospective partner's family.
Families may wrongly fear that a woman living with HIV will 'transmit the virus' to her HIV negative partner and/or give birth to an HIV-positive child. But science and evidence is crystal clear that if a person has undetectable viral load then there is zero risk of sexual transmission of HIV.
These unfounded fears arise out of insufficient understanding and awareness about:
(i) vertical transmission of HIV virus being preventable, and
(ii) zero rate of transmission from a person with HIV who has an undetectable viral load (U=U).
National guidelines of Indian government's NACP clearly outline measures to prevent vertical transmission of HIV (and syphilis) during pregnancy, childbirth or breastfeeding and also emphasise that Undetectable = Untransmittable.
"An HIV positive and HIV negative person can marry without fear of transmitting the virus," says Mary, "when the persons living with HIV are effectively treated and maintain an undetectable viral load."
Her own family understands this. But she still remains vary of entering a relationship.
“That is why I am scared of getting into a relationship,” she says.
Her solution is not only about creating greater public awareness, but also about empowerment: women living with HIV must be economically independent and emotionally strong.
What happens when children living with HIV become adults?
Saraswati's lived experience raises another important question that is often overlooked: what happens to children living with HIV when they grow up?
She lost her parents as a child and grew up in a hostel. She now works in a foster-care home, caring for children with HIV who have lost their parents.
She strongly believes that children who grow up in institutional care need support well beyond their 18th birthday.
“Where do they go?” she asks.
Young adults need help with their education, employment, housing, documentation and career development.
"They should be educated. We should get jobs," she says.
What do the activists say?
Peter Floriano Borges, Assistant Professor of Social Work at Goa University, and Founder of the Human Touch Foundation, argues that government support must go beyond food, clothing and shelter. Children who have lost their parents may need help securing property rights, documentation, education, employment and social protection.
Basic documentation - such as government's Aadhaar cards, bank accounts and proof of residence - can become major barriers to accessing government support.
The challenge, therefore, is not simply keeping children alive and healthy. It is about helping them become economically independent adults.
Rise: Support, do not isolate
Both Mary and Saraswati have seen how devastating disclosure can be when it is followed by rejection.
Saraswati recalls a friend living with HIV who was studying at the university. Someone revealed her status, after which her friends deserted her and warned others to stay away from her because they feared infection.
Such experiences demonstrate why awareness must accompany treatment.
Saraswati tries to educate people she meets without disclosing her own status. She explains that HIV is not transmitted through touch and speaks about U=U.
Mary believes young people living with HIV can help change public attitudes, but they should not be expected to disclose their status to become advocates.
“We can collectively change our thinking and attitude towards a positive person,” she says.
Stigma still lurks within healthcare settings
That change also has to happen inside healthcare settings too. Mary says people living with HIV can sometimes encounter stigmatising behaviour from hospital staff.
If stigma exists at school, at work, in families and even in healthcare facilities, treatment alone cannot deliver a truly successful HIV response.
India has made significant progress in reducing new HIV infections among children by 84% since 2010. But the 57,000 children aged 0 - 14 years already living with HIV in India will eventually grow into adolescents and adults.
Their needs will change as they grow - from paediatric treatment and schooling to employment opportunities, housing, financial independence and mental and social wellbeing. The HIV response must therefore evolve with them.
The experiences of the likes of Mary and Saraswati suggest that achieving that goal will require another ingredient: changing how society treats people living with HIV.
For Mary, the ultimate message is simple: "I want discrimination to end, so that persons with HIV can live a normal life like others, without facing any stigma or discriminatory issues.Yeah, we are normal. We can also live like other people.”
That is the essence of Rethink. Rebuild. Rise.
Rethink the myths that equate HIV with AIDS and the prejudices that make people living with HIV feel they must hide.
Rebuild healthcare and social-protection systems so that treatment is accessible without forcing people to sacrifice school, work, wages or privacy.
And Rise by ensuring that children and young people living with HIV are not defined by their diagnosis, but supported to have the same opportunities as everyone else.
India has made substantial progress in preventing HIV among children. The next measure of success should be whether those children, as they grow up, can live without intersectional stigma and discrimination.
The medicines have changed their lives. Now, society must change its attitude too.
(Citizen News Service)
12 August 2026
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