We can do better so that all people with HIV live healthy normal lifespans

Shobha Shukla *

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.