Love, Health, and the Right to Age with Dignity
- Treatment Adherence and the Power of U=U
- Living Testimony: Daxa Patel’s Journey of Resilience
- Bridging the Gap: Science vs. Public Health Rollout
Spotlight on Innovation: HPV and Breast Cancer Screening for Women with HIV
- Global and National Events Championing Long-Term HIV Survivors
- Stigma Still Exists: A Call for a Non-Judgmental Healthcare Approach
- Ending HIV Discrimination in Medical Settings: Time to Follow the Science
Managing HIV and Ageing: From Paediatric to Geriatric Care
- The Silent Epidemic: Co-Infections, NCDs, and Mental Health
- A Purposeful Life: Mental Wellness and Self-Care Matter
- From Laws to Action: Enforce the HIV/AIDS Act 2017 and End Stigma Now
People living with HIV can live healthy and normal lives with proper care, treatment adherence, and zero stigma. Experts like Daxa Patel and Dr Ishwar Gilada emphasise mental wellbeing, U=U, early access to health innovations, and the right to age with dignity. Here's how we can close the gap between science and action.
We can do better so that all people with HIV live healthy, normal lifespans
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| We can do better so that all people with HIV live healthy normal lifespans |
Love oneself. Stay healthy. And adopt a health-seeking behaviour to ensure that all of us can age with dignity 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 the right to age with dignity and respect.
Never ever missed a dose since 2007 onwards
Daxa was diagnosed with HIV in 1998. The 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 the 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 the 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 established India’s first HIV clinic in the government-run JJ Hospital when the first HIV case was confirmed in the country.
The
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-year delay in rolling out the government-run programme to prevent HIV transmission from mother to child in 2001, despite the PHO-Wadia safe motherhood model having demonstrated evidence and impact since 1992. Medicines like zidovudine were first used in rich nations over 30 years ago to reduce HIV risk of the unborn child of HIV positive parent(s) – and the PHO-Wadia model had rolled these out back then in India too (though the 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 the mother and the child live healthy and normal lives.
Likewise, for the rollout of lifesaving antiretroviral therapy, in the 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 the 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 the quality of life too, while we test and treat, care and support people with HIV.
He also points out that new HIV prevention methods that were validated and approved years ago have not been rolled out in the country. For example, Pre-Exposure Prophylaxis (PrEP) is an 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 is available on online shopping websites. Likewise, the HIV self-test is not yet rolled out as part of the 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, the 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 the 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 whopping INR 16,000 to for pregnancy and childbirth-related healthcare services.
Dr Gilada calls upon all healthcare professionals, including the 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 the medical fraternity to follow the science and evidence and stop discriminating against those with HIV. Dr Gilada asks the 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 a 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 the 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 recourse 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 the 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 death 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 makes all efforts to effectively address them in an 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 well-being and try to remain stress-free. Engaging with purposeful and spirited work to help others with HIV since 2002 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 affect our sensibilities and well-being in any way.
(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 the SHE & Rights initiative (Sexual health with equity & rights).
