Latest AIDS data released in July 2025 show that the number of those newly diagnosed with HIV and those who died of AIDS-related illnesses in 2024 have declined as compared to 2010 levels. But there is hardly any change between 2023 and 2024 data for new HIV infections and AIDS-related illnesses which is worrying indeed. Young people, particularly adolescents, continue to face unique challenges in accessing HIV prevention and treatment services.
Together for change: Youth, Unity and Impact
In lead up to the International Youth Day 2025, around 150 young people living with HIV and in all gender diversities, from across India, came together at the National Youth Conclave 3.0 organised by Youth Lead Voices, National AIDS Control Organisation (NACO) of Ministry of Health and Family Welfare, Government of India, and National Coalition of People Living with HIV in India (NCPI Plus), along with partners, including UNICEF, Plan India, Meeting Targets and Maintaining Epidemic Control (EpiC), among others.
Young leaders shared their journeys on HIV prevention, early testing, mental health and HIV treatment adherence - reminding us that every story deserves to be heard. Unless we listen to youth voices how will we unlearn, learn and better understand issues faced by them? More importantly, unless we listen without judgement or stereotype, how will we engage the young in finding effective solutions to the problems?
Dr Chinmoyee Das, a senior official from the Government of India’s National AIDS Control Organisation patiently and sensitively listened to the voices of the young – and responded to every issue they had collectively raised. A bold and visionary conversation between youth and key policymakers at this National Youth Conclave 3.0 focussed on building safer, healthier, and more inclusive futures.
Make a difference by engaging youth meaningfully, genuinely at all levels of HIV responses
Undetectable viral load means that the person lives healthy, and according to the WHO, there is zero risk of any further HIV transmission – so treatment works as prevention too.
“We have to maintain viral load undetected status for all of them while we expand our network and impact,” said Pooja Mishra.
Young people are essential partners in designing, implementing and monitoring effective solutions to the health and social challenges they face – with support from the government and all other stakeholders.
“We need to explore new entry points for reaching the at-risk youth community for offering voluntary HIV counselling and testing. We also need to strengthen youth-friendly screening strategies among youth including community-based screening for HIV. We should continue providing peer-support and active engagement with them to maintain optimal treatment adherence among young people living with HIV,” added Pooja Mishra.
Young people are essential partners in designing, implementing and monitoring effective solutions to the health and social challenges they face – with support from the government and all other stakeholders.
“We need to explore new entry points for reaching the at-risk youth community for offering voluntary HIV counselling and testing. We also need to strengthen youth-friendly screening strategies among youth including community-based screening for HIV. We should continue providing peer-support and active engagement with them to maintain optimal treatment adherence among young people living with HIV,” added Pooja Mishra.
Anurag said that peer support mattered a lot in getting tested, counselled, and supported in many ways, including for treatment adherence.
Many leaders of Youth Lead Voices, including Gunjan, Prashant and Bhawna, shared the challenges they face and/or recommendations to help improve HIV responses on the ground.
“Educational curriculum must have more on HIV – such as HIV combination prevention options, voluntary HIV counselling and testing, lifesaving antiretroviral therapy, undetectable equals untransmittable or #UequalsU,” said a youth. #UequalsU is when a person living with HIV is on lifesaving antiretroviral treatment and viral load is undetectable so that HIV is untransmittable to anyone else.
“Quality of counselling at some of the antiretroviral therapy centres is not satisfactory. Counsellors are too busy at times to give enough time for young people,” shared another youth.
A female orphan person shared that “she can stay in care homes till the age of 18 years, and after that the only option she knows is the care centre for over 18 years run by Gujarat State Network of People living with HIV (GSNP+). Government needs to support young people with HIV after the age of 18 too so that they can get duly educated and employed with rights and dignity.
A female youth from old Delhi pointed towards low HIV awareness among young people and the struggle they go through for disclosing their status.
Another youth brought forth an important reality check: “Often children and young people get to know of their status when they faced health issues or somehow were offered HIV voluntary, counselling and testing. We can do better in offering HIV test and help people know their status early on so that they can take care of themselves.”
A youth from Uttarakhand state of India highlighted the importance to leverage upon social media platforms for communications as well as engaging with the young people who may need help, support and guidance. There were many other young people in the room who too voiced in support of strengthening social media outreach smartly! Messages need to connect and resonate with the youth.
Another youth brought forth how she misses educational lectures or college because of having to go every month to collect her next month’s stock of lifesaving antiretroviral therapy. She too called for more support for orphan children diagnosed with HIV after they become 18 (till then they can stay at care centre). “We need support to get our right with equity to education, employment.” She pointed out that HIV related stigma and discrimination still lurks as many young people with HIV, are denied jobs upon disclosure of their status.
“We knew about HIV. But often the youth only use (male) condoms for reducing the risk of unplanned pregnancy (not HIV and other STIs),” said another youth bringing home the reality of (mis)communication. Let us all remember and spread the message far and wide: male and female condoms offer high protection from unplanned pregnancies, as well as from a range of sexually transmitted infections, including HIV.
Seek help with rights, it could be available
She emphasised on better utilisation of government of India’s tollfree helpline 1097 phone-in number which provides information on HIV as well as sexually transmitted infections in several Indian languages, nationwide. Government of India is investing in raising awareness, such as via painted messages on public transport buses.
A youth shared his user experience of 1097: he preferred to speak in Bengali language on 1097 tollfree helpline but after 3 unsuccessful attempts, gave up. Dr Das promised to take this feedback to appropriate review meetings.
Dr Das encouraged young people to reach out to official complaints officer appointed in every institution. If there is not an officer like this, then report to the state AIDS control societies, she said.
Be the messenger to help #endAIDS
Dr Das appealed to all young people to be the messenger to help spread and amplify correct messages around HIV combination prevention, HIV voluntary counselling and testing, 1097 toll free helpline, HIV/AIDS Act, 2017 (to end stigma and discrimination), among other issues.
We must also ensure that confidentiality of young people with HIV is protected all through the care continuum, she said.
We must also ensure that confidentiality of young people with HIV is protected all through the care continuum, she said.
Dr Das complimented NCPI Plus for making treatment literacy workshops successful “and for being the messenger.”
She confirmed that from now onwards, for those (young or old) stable on lifesaving antiretroviral therapy, multi-months dispensing (instead of a month’s supply) should be a reality. This should be happening across India.
Dr Chinmoyee Das addressed the issues faced by orphans with HIV as they can live in care centres only till the age of 18. She agreed that support should be extended to them for an additional 5-7 years – this is currently being discussed as NACP-6 is getting shaped. “There are state-specific schemes for livelihood, education, social welfare, etc, as well as through National Health Mission, so those must be fully utilised too,” she said.
Greater involvement of youth in decision-making
“National Coalition of People living with HIV in India (NCPI Plus) is going to consider in its next board meeting if leadership of Youth Lead Voices can be represented on NCPI Plus board,” confirmed Manoj Pardeshi, co-founder of NCPI Plus, TAAL Pharmacy and Network of Maharashtra People living with HIV or NMP Plus.
“I have witnessed Youth Lead Voices (YLD) to grow from 440 young people with HIV (on a WhatsApp group) a year back, to over 1860 young people with HIV across the country” said Sumita Taneja, EpiC, Country Representative at FHI 360 India. “Over 800 of them are from priority states.”
“It gives me hope to see that HIV related public health messaging and communications done by Plan India and NACO is more youth-friendly and designed, conceptualised and implemented in a way which is more likely to resonate with the targeted young people,” said Simran Sheikh of Plan India. Simran is a noted human rights crusader since several years.
“It gives me hope to see that HIV related public health messaging and communications done by Plan India and NACO is more youth-friendly and designed, conceptualised and implemented in a way which is more likely to resonate with the targeted young people,” said Simran Sheikh of Plan India. Simran is a noted human rights crusader since several years.
No child should be born with HIV
All 3 infections of HIV, syphilis and hepatitis-B, can be transmitted from women to their newborns during pregnancy and childbirth. In addition, HIV can be transmitted during breastfeeding too.
Despite knowing how to prevent vertical transmission (from mother to the baby) of HIV, syphilis and hepatitis-B infections, we are failing with every child who is born with either of these preventable infections. We have the science-backed tools to ensure that all children are born free of these three infections. Failing to deploy them with utmost effectiveness is highly unacceptable.
Let us all remind ourselves that a medicine like zidovudine was first used in rich nations over 30 years ago (in 1994) to reduce HIV risk of the child born to HIV positive parent(s). Today we have far more effective treatment regimens available to ensure children are born free of HIV - and both mother and the child live healthy and normal lives.
"Indian government's programme (prevention of mother to child transmission of HIV) has been running since 2003. I think it is high time that no child should be born with HIV," rightly said Dr Asha Hegde, Director South Asia, Family Health, Advisory Director Communicable and Non-Communicable Diseases at PATH. She added that we need to do more for children and young people between 10-18 years age group too.
Despite knowing how to prevent vertical transmission (from mother to the baby) of HIV, syphilis and hepatitis-B infections, we are failing with every child who is born with either of these preventable infections. We have the science-backed tools to ensure that all children are born free of these three infections. Failing to deploy them with utmost effectiveness is highly unacceptable.
Let us all remind ourselves that a medicine like zidovudine was first used in rich nations over 30 years ago (in 1994) to reduce HIV risk of the child born to HIV positive parent(s). Today we have far more effective treatment regimens available to ensure children are born free of HIV - and both mother and the child live healthy and normal lives.
"Indian government's programme (prevention of mother to child transmission of HIV) has been running since 2003. I think it is high time that no child should be born with HIV," rightly said Dr Asha Hegde, Director South Asia, Family Health, Advisory Director Communicable and Non-Communicable Diseases at PATH. She added that we need to do more for children and young people between 10-18 years age group too.
Dr Asha Hegde shared a positive example from Churachandpur, Manipur, India where there is a safe space co-created with local partners for young people. "We have built the agency of the younger population," she said while complimenting Youth Voices Lead too - which resonates with the spirit driving the safe space project in Churachandpur. "Now we are slowly providing and offering services for HIV voluntary counselling and testing, refills of lifesaving antiretroviral therapy, opioid substitution therapy or harm reduction services, among others."
Latest UNAIDS 2025 data shows that key populations have higher HIV risk. Four out of every five (79%) new infections in Asia Pacific region were among key populations and their partners. Criminalisation and marginalisation deepen their vulnerability, making it harder to reach them with services.
Let us hope that National Youth Conclave 3.0 results in stronger and urgent person-centred actions to prevent new HIV infections as well as for better programmes to provide treatment, care and support with rights and dignity to all those in need.
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| Central Chronicle, India (op-ed page, 2 August 2025) |
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