We Can Do Better So That All People With HIV Live Healthy Normal Lifespans
People living with HIV must take care of ones mental health and wellbeing, adhere to HIV treatment to stay undetectable and take care of life-style related diseases and ageing-related issues.
Love oneself. Stay healthy. And have a health-seeking behaviour to ensure all of us get to age with rights and remain disease-free.
People living with HIV must take care of one's mental health and wellbeing, adhere to HIV treatment to stay undetectable (because when undetectable equals untransmittable, then they remain healthy and live normal and disease-free lifespans as well as ensure there is zero risk of any further HIV transmission), and take care of life-style related diseases and ageing-related issues, said Daxa Patel, co-founder of National Coalition of People living with HIV in India (NCPI Plus) who has played a key role in founding of Gujarat State Network of People living with HIV too. Everyone has a right to age with rights and human dignity.
Never-ever missed a dose since 2007 onwards
Daxa was diagnosed with HIV in 1998. Indian government's free rollout of lifesaving antiretroviral therapy began in 2004. But her lifesaving HIV treatment began 9 years later (in 2007 onwards), as per then-eligibility criteria of the WHO and Indian government. Recognising the importance of treatment and health literacy and treatment adherence, she has never-ever missed her dose since then.
Daxa advises simple ways like setting up daily mobile reminders to take every dose correctly and at the right time.
Last month, Daxa had recently led the organising of a national dialogue and stakeholder consultation in India's national capital Delhi along with her colleagues like Pooja Mishra (Secretary NCPI Plus) and Manoj Pardeshi (co-founder NCPI Plus and leader of a successful social enterprise Taal+ Pharmacy) and other members of NCPI Plus.
Alongside this meeting, almost 30 eligible women with HIV were also screened for breast cancer onsite (using a point-of-care thermal screening tool of Niramai Health Analytix). NCPI Plus members from across India learnt a lot from experts on human papilloma virus or HPV (a virus which causes around 95% of cervical cancers along with other health issues in all genders), India's first indigenously developed and validated molecular diagnostics for HPV (Truenat HPV-HR Plus developed by Molbio Diagnostics – announced by the Indian government in April 2025), and on ensuring how people with HIV age healthily and with rights.
Daxa was speaking at a special event to mark HIV Long-Term Survivors' Awareness Day 2025 and ahead of 10th Asia Pacific AIDS and Co-Infections Conference (APACC 2025), 2nd Asia Pacific Conference on Point-of-Care Diagnostics for Infectious Diseases (POC 2025) and 13th International AIDS Society Conference on HIV Science (IAS 2025).
Eliminate delays in rolling out scientifically approved and validated health tools
According to WHO: 'People living with HIV who have an undetectable viral load using any WHO-approved test and continue taking medication as prescribed, have zero risk of transmitting HIV to their sexual partner(s).'
Agrees Dr Gilada: 'Science has proven that if people with HIV are on lifesaving antiretroviral therapy and remain virally suppressed, then there is zero risk of any further transmission of HIV from them to anyone else. This is referred to as #UequalsU or undetectable equals untransmittable.' But, in 2023, over 1.3 million people were newly diagnosed with HIV worldwide – despite the science-backed tools to prevent HIV transmission. We can do better to save lives, says Dr Gilada.
We need to bridge the deadly divide between 'what we know works' and 'what we do.'
Dr Ishwar Gilada is part of the International AIDS Society (IAS) Governing Council, serves as President-Emeritus of AIDS Society of India (ASI – India's network of medical doctors and scientists of HIV and co-infections and co-morbidities), and CEO of Unison Medicare and Research Centre (UMRC), India. He is the longest serving HIV medical expert in India who had established India's first HIV clinic in government-run JJ Hospital when first HIV case got confirmed in the country.
Government of India's National AIDS Control Programme began in 1992, seven years after a civil society group (People's Health Organisation – PHO) was consistently raising HIV awareness.
There was a 9-years delay in rolling out government-run programme to prevent HIV transmission from mother to the child in 2001 despite PHO-Wadia safe motherhood model had demonstrated evidence and impact since 1992. Medicines like zidovudine was first used in rich nations over 30 years ago to reduce HIV risk of the unborn child of HIV positive parent(s) – and PHO-Wadia model had rolled these out back then in India too (though government's rollout took another 9 years to do so).
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.
Likewise for the rollout of lifesaving antiretroviral therapy: In private sector it began 9 years before the government's programme in India (from 7 April 2004 onwards). Rollout of Dolutegravir – one of the most promising antiretroviral medicines – began 3-4 years later in government-run programme (2020) than private sector in the country (2017).
Dr Gilada says we have a long journey ahead to pay adequate attention to quality of life too while we test and treat, care and support for people with HIV.
He also points out that new HIV prevention methods that are validated and approved years back have not been rolled out in the country. For example, Pre-Exposure Prophylaxis (PrEP) is a HIV medicine that is for people who are HIV negative to reduce their risk of getting infected with the virus. PrEP is not part of India's HIV programme but available on online shopping websites. Likewise, HIV self-test is not yet rolled out as part of government's programme.
HIV stigma has reduced but still lurks
HIV stigma has reduced considerably over the last 4 decades but still lurks, says Daxa.
'Over the decades, life expectancy of people with HIV has increased due to improved efficacy of the treatment. CDC estimates that around half of all people with HIV are older than 50 years now. By 2030, 70% of all those with HIV would be over 50. With ageing comes new challenges (HIV-associated and non-HIV associated too),' said Dr Gilada. 'Sometimes I believe that people with HIV live better than non-HIV because they are always constantly under health supervision, monitoring and proactively seeking healthcare services which people who do not have HIV may not be getting.'
Dr Gilada's Unison Medicare and Research Centre in Mumbai has several people living with HIV under care for over three decades. 'So, in a way we have provided paediatric to geriatric care for those with HIV.'
Dr Gilada says that HIV stigma still exists but when he looks at socio-economic background of his patients under care, he often finds that those who are more educated and privileged are more likely to stigmatise and discriminate.
'We need to have a non-judgmental approach in all healthcare settings,' said Dr Gilada.
Daxa shared that almost 23 years back, she was asked a whooping INR 16,000 to for pregnancy and child-birth related healthcare services.
Dr Gilada calls upon all healthcare professionals including medical community to not charge extra for providing medical care to those with HIV. 'When #UequalsU and person, then where is the risk of HIV transmission?' Dr Gilada asks medical fraternity to follow the science and evidence and stop discriminating against those with HIV. Dr Gilada asks medical fraternity to think that those people who are not aware of their HIV status and seeking surgery, could be in the 'window period' or have had indulged in high HIV risk behaviours couple of days before too – so, best is to follow infection prevention and control measures universally. Dr Gilada appeals to surgeons, obstetricians and gynaecologists and other medical professionals, to not attend to people with HIV at the very last. 'Why discriminate?'
He calls upon HIV community to leverage upon HIV/AIDS Act, 2017 and help end all forms of HIV related stigma and discrimination. 'But there is not a single case which has been filed under this law since 2017,' said Dr Gilada who had earlier mobilised several associations in the last 30 years to demand such a law.
Dr Gilada cites a Mumbai High Court ruling according to which people living with HIV do not even have to disclose their identity (to maintain confidentiality) while seeking legal recourses for justice.
We can do better!
Managing HIV co-infections and co-morbidities is vital
Dr Gilada reminds that along with lifesaving and effective antiretroviral therapy, healthcare workers need to regularly screen people with HIV for a range of co-infections and co-morbidities. Before beginning treatment for any other illness, drug to drug interaction needs to be considered for example.
People with HIV are at a higher risk of some non-communicable diseases, such as, cardiovascular diseases, cancers, diabetes and related complications, chronic respiratory diseases, mental health issues, and others. For example, Dr Gilada shared that risk of impaired glucose and insulin metabolism is double among those with HIV compared to those without the virus.
TB, despite being preventable and curable, continues to be the biggest cause of deaths for people with HIV. 'No one needs to die from TB or HIV because we have science-based tools and approaches to avert these untimely deaths,' said Dr Gilada.
Dr Gilada and Daxa both advocate for people with HIV to go for adult vaccinations to reduce the risk of or protect themselves from vaccine-preventable diseases.
Dr Gilada points to several other concerns that must be considered while caring for people with HIV – and make all efforts to effectively address them in evidence-based and people-centred manner. For example, substance use (tobacco, alcohol, etc), genetics, menopause for women, hypertension, obesity, physical inactivity, poor engagement in healthcare, poverty, among others.
Find your inner light: Purposeful and peaceful living is key
Daxa Patel shares that we all need to care for our mental wellbeing and try to remain stress-free. Engaging with purposeful and spirited work to help others with HIV since 2002 onwards has helped her remain busy and meaningfully involved. 'It saved my life,' she said. We need to keep ourselves healthy and ensure that we do not let outside stigma and discrimination effect our sensibilities and wellbeing in any way.
Shobha Shukla – CNS (Citizen News Service)
(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) and Chairperson of Global AMR Media Alliance (GAMA received AMR One Health Emerging Leaders and Outstanding Talents Award 2024). She also coordinates SHE & Rights initiative (Sexual health with equity & rights). Follow her on Twitter @shobha1shukla or read her writings here www.bit.ly/ShobhaShukla)
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She rightly called upon the government leaders who had assembled at the UN: "With less than 5 and a half years left to deliver on SDG3, we appeal to governments to step up their actions on gender equality and right to health - where no one is left behind." Shobha Shukla – CNS (Citizen News Service) (Shobha Shukla is a feminist, health and development justice advocate, and an award-winning founding Managing Editor and Executive Director of CNS (Citizen News Service). She was also the Lead Discussant for SDG-3 at United Nations High Level Political Forum (HLPF 2025). She is a former senior Physics faculty of prestigious Loreto Convent College; current President of Asia Pacific Regional Media Alliance for Health and Development (APCAT Media); Chairperson of Global AMR Media Alliance (GAMA received AMR One Health Emerging Leaders and Outstanding Talents Award 2024); and coordinator of SHE & Rights (Sexual Health with Equity & Rights). Follow her on Twitter/X @shobha1shukla or read her writings here
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Tanmay, an energetic leader of Youth Lead Voices, moderated the session. Anurag- another talented leader of Youth Lead Voices, expressed his personal experiences and journeys using poetry and recital medium. Anurag hails from Uttar Pradesh state of India, who was first diagnosed with HIV in 2009 at the age of 9. He shared what he felt back then after getting diagnosed: a feeling of hopelessness and despair. It was only when he connected with peer networks of people living with HIV such as NCPI Plus, his life inched back towards positive and healthy living. He now supports others to stay healthy with a positive outlook towards life – because science has made it possible for every person with HIV to live healthy, normal and meaningful lifespans – just like anyone else (comparable to those with no HIV). Moreover, when viral load is undetectable, then virus stops spreading and person lives healthy. Anurag said that peer support mattered a lot –in getting tested, counselled, and supported in so many ways including for treatment adherence. A lot of leaders of Youth Lead Voices including Gunjan, Prashant and Bhawna shared 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 antiretroviral therapy centres is not satisfactory. Counsellors are too busy to give enough time for young people,' shared another youth. 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But we 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: male and female condoms offer high protection from unplanned pregnancies, as well as a range of sexually transmitted infections including HIV. Seek help with rights, it could be available Government of India's apex programme on HIV (National AIDS Control Organisation – NACO)'s senior official Dr Chinmoyee Das responded that they would consider all input from the young people to the drafting of next phase of national AIDS control programme (NACP-6). 'But we can address a lot of issues without having to wait for NACP-6, right now.' 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 Chinmoyee promised to take this feedback to appropriate review meetings. Dr Chinmoyee Das of the NACO 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 state AIDS control societies, she said. Be the messenger to help #endAIDS Dr Chinmoyee 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 tollfree helpline, HIV/AIDS Act, 2017 (to end stigma and discrimination), among others issues. We also must ensure that confidentiality of young people with HIV is protected all through the care continuum, she said. NACO's Dr Chinmoyee Das complemented NCPI Plus for making treatment literacy workshops successful 'and for being the messenger.' She confirmed that 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 of NACO addressed the issue faced by orphans with HIV that as they can live in care centres till age of 18. She agreed the support should be extended to 5-7 more years – but 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. No child should be born with HIV In Asia Pacific region, there are 120,000 children (aged between 0-14 years) who are living with HIV. Indonesia comprises 26% of the regional total of new HIV infections among children, followed by India (23%) and Papua New Guinea (8%). 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 medicines like zidovudine was first used in rich nations over 30 years ago (in 1994) to reduce HIV risk of the unborn child of 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 complementing 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 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. Shobha Shukla, Bobby Ramakant – CNS (Citizen News Service)
