Move from rhetoric to action on #PutPeopleFirst

Shobha Shukla *

Transformative empowerment is mostly not given by ‘experts from the outside,’ but happens when the most affected people themselves rise to take back power to transform their lives and wellbeing. “When we put people first, then we cannot just address one or two issues they face,” rightly says Amrita Sarkar of India HIV/AIDS Alliance who has worked on a range of issues related to transgender people since last 23 years.

“When I was working in rural Odisha with transgender communities years back on HIV prevention, I remember one of them told me that ‘they do have access to condoms, but can I give them education or help with income'? By giving them support for non-formal education or increasing their income generation options, our healthcare programmes will also become more effective,” said Amrita.

If we want to serve the communities, we need to address their needs that are not being met.

“For communities that are already marginalised (such as, sex workers or LGBTQIAP+ people), HIV adds another layer of stigma and discrimination which people are facing. On one hand we must strengthen community-led monitoring as well as community system strengthening, and on the other hand, continue to build capacity of the marginalised communities so that they can contribute and engage meaningfully,” said Amrita.

Holistic approach holds the key to reach the unreached

“We have to integrate health and development services in existing HIV services for key populations. Non-communicable diseases (NCDs), such as cardiovascular diseases, cancers like cervical or anal cancers, diabetes, chronic respiratory diseases, mental health issues, among others, should be integrated. Holistic approach, along with community leadership, holds the key to reach the unreached,” said Amrita. "Why are other services that transgender people may need, such as hormone replacement therapy or specific surgeries, not yet integrated?"

Put People First was the mantra which brought all of us together this year at the world’s largest AIDS conference (25th International AIDS Conference or AIDS 2024). But are we ready to walk the talk and move from rhetoric to action on the ground?

Cervical cancer is an AIDS-defining illness and the most common cancer among women living with HIV globally. “When I look back at the conference last month, a pre-conference session on cervical cancer was important. We need to pay more attention in integrating cervical cancer in HIV programming which will be important for so many people, including transgender people, female sex workers, among others. Other forms of cancer such as anal cancers must get due attention too, especially for gay men and other men who have sex with men for instance,” said Amrita.

According to the World Health Organization (WHO), if every person living with HIV was on effective and lifesaving antiretroviral therapy, and the level of the virus was undetectable, then not only would they live healthy lives, but there would also be zero risk of any HIV transmission from them. That is why this is often referred to as #UequalsU or undetectable equals untransmittable.

Spotlight on #UequalsU

“UequalsU was in spotlight at AIDS 2024,” said Pooja Mishra, National Youth Coordinator, Youth Lead Voices and General Secretary of National Coalition of People Living with HIV in India (NCPI Plus). “It is important to ensure that all people with HIV regularly adhere to the antiretroviral therapy and stay physically and mentally healthy.”

“Inter-faith pre-conference before AIDS 2024 was also a learning curve for me at AIDS 2024 as I was not aware how some faith leaders have come out to support key populations and HIV initiatives in a rights-based manner. Faith leaders from Christianity, Islam or Buddhism for example were there at AIDS 2024,” said Pooja.

AIDS 2024 was the second such conference for Pooja (first such conference she attended was in 2018 in Amsterdam, Netherlands). She presented at AIDS 2024 on violence faced by young girls and women living with HIV in India – especially in rural areas.

Pooja was 19 years of age when she herself had faced violence – even within healthcare services. Just like in society, patriarchy is also rife in healthcare and social services too – and so are harmful gender-based stereotypes and social norms. HIV adds to the vulnerabilities faced by young girls and women and heightens the risk of facing a range of sexual and other forms of gender-based violence.

“Good touch and bad touch – we can know when people are doing bad touch in the garb of ‘medical examination’ or ‘check-up’. I went through this violence myself but was not able to speak up back then. It is not easy to speak up… after almost 15 years now, I have gathered courage to speak up and address it. Most such stories of violence faced by girls and women are untold,” said Pooja.

Social enterprises give hope for sustaining community-based groups

Among Pooja’s highlights from AIDS 2024 is a session on social entrepreneurship and its role in sustaining community-based groups. Pooja spotlighted TAAL and TAAL+ which were social enterprise models presented at AIDS 2024.

Manoj Pardesi’s team had established world’s first HIV community peer-led pharmacy TAAL (Treatment, Adherence, Advocacy and Literacy) of India in Pune under the aegis of Network of Maharashtra People Living with HIV (NMP+) – a social enterprise that provided quality antiretroviral medicines at affordable rates to those who were accessing treatment in the private sector.

While free HIV treatment is available in India's public health sector, some people living with HIV prefer seeking treatment from the private sector due to fear of stigma, discrimination, loss of confidentiality, or other reasons. There was a need for avenues to provide subsidised, affordable and quality-assured medications to them in a community-friendly and stigma-free environment. Thus, was born TAAL.

Later, Manoj-led team, transitioned TAAL from a community pharmacy to TAAL+, an integrated healthcare centre – TAAL+ also has an online sales platform since February 2023 – and is the first-ever HIV community peer-led ePharmacy platform of India.

TAAL+ is a one stop shop, providing not only accessible and affordable diagnostics, medication and counselling services for HIV, including access to prevention tools like Pre-Exposure Prophylaxis (PrEP) and Post-Exposure Prophylaxis (PEP), but also for HIV-related co-infections like TB, Hepatitis B and Hepatitis-C, and HIV-associated cancers. TAAL+ also provides screening and medication for NCDs like hypertension, diabetes, cardiovascular diseases, cervical cancer, and services for mental health.

Novel demand generation strategies of TAAL+ has helped expand its client-base from 790 in 2022 to 2786 in 2024. Manoj’s efforts have led to a 75% increase in revenue - from US $155,034 in 2022 to US $328,212 in 2023. With around 10% profit generated annually, today, TAAL+ not only addresses the quality-of-care needs of people living with HIV, but also contributes to 16% of the total annual revenue of NMP+.

Lenacapavir – a new HIV prevention medicine but out of reach

Results of scientific studies that were published earlier this year show that Lenacapavir – a medicine that is used for preventing HIV transmission when used as a PrEP (once six-monthly injection) – protected 100% of young girls and women who had received it.

Amit Singh, a capacity building officer at NCPI Plus, learnt about Lenacapavir for the first time in this conference. Pooja too was excited to learn more on Lenacapavir, but was dismayed with the price of this medicine: over US$ 40,000 per person per year (for 2 six-monthly injections).

Amit added that AIDS 2024 majorly focussed on community leadership. Youth leadership is vital as a significant part of new HIV infections are occurring among the young people, especially young key populations.

Years of transgender rights activism has expanded spaces for them

Amrita corrected us when we said that 'pre-conference on key populations was the first of its kind at AIDS 2024.' Amrita believes there is a long history of important transgender community-led work for several years - around these conferences too - that has expanded the spaces and avenues for them to speak and contribute to health and development discourses.

Amrita recollected that "It was at AIDS 2008 in Mexico City where transgender leaders from UCSF (University of California San Francisco) Centre for Excellence for Transgender Health, MPaACT Global Action (formerly called Global Forum on MSM and HIV or MSMGF), and other groups (she was part of the process too) had demanded more space for transgender-specific issues. Then in AIDS 2016 in Durban, South Africa, "I was a part of IRGT: A Global Network of Trans Women and HIV, and we co-hosted the pre-conference for transgender women. We also had organised it at AIDS 2022 in Montreal, Canada."

"Pre-conference on key populations is really important as all of us cannot participate in scientific or technical sessions of world AIDS conferences. Community-led process is vital, as important experience-sharing and learning happens in such spaces," said Amrita.

Amrita reminded us of the important collective work that was done by transgender people collaboratively. Guidelines to improve programmes for the transgender community to address HIV and sexually transmitted infections were developed with such a process in 2016 (formally called TRANSIT: Implementing Comprehensive HIV and STI Programmes with Transgender People: Practical Guidance for Collaborative Interventions). Amrita was part of it - and wished if these were fully implemented to make a difference on the ground.

Another such important work was the "2022-2023 White Paper on Comprehensive Health-Related Services for Transgender Persons" published by Government of India's National AIDS Control Organisation (NACO). Amrita contributed to this paper too.

Virtual approaches to reach people with services

Amrita emphasised on innovations in deploying virtual approaches to reach the unreached people with HIV services. She was referring to those who meet on dating apps or websites or other virtual platforms. HIV self-testing, PrEP as well as full cascade of HIV combination prevention tools, and testing and treatment services should be made available.

Amrita highlights an intervention NETREACH - which is a virtual intervention in India supported by the Global Fund to fight AIDS, TB and Malaria (The Global Fund) and implemented by India HIV/AIDS Alliance and Humsafar Trust. With this initiative, they aim to reach the unreached group on dating apps or dating sites with HIV services as it is very difficult to track their behaviours and do health promotion.