4 Years After Guidelines, India's HIV Prevention Tool Remains A Privilege

HIV spreads in the human body by targeting and infecting T cells, the critical white blood cells of our immune system. PrEP works by blocking HIV from replicating inside T cells after exposure, stopping infection from taking hold. PrEP has till recently come in the form of an oral pill that can be taken to reduce the chances of contracting HIV through sexual contact or injection drug use.

Studies have shown drastic reduction in HIV incidence among communities where use of PrEP is common. In Australia, for instance, a study among more than 62,000 individuals found that the distribution of government-subsidised oral PrEP contributed to a 78% decline in new HIV cases among men who used it for 60% or more days between 2018 and 2023. The medication is most effective when taken daily, reducing the risk of HIV infection from sex by over 99% and through infected needles by over 74%. It can be discontinued in absence of high risk activity such as frequent sex with multiple partners or injecting drug use.

The National AIDS Control Organisation (NACO) of India published the National Technical Guidelines for PrEP in 2022, terming it as a novel strategy to deal with HIV. But even after four years, there is no public rollout, which means awareness remains low and the cost too high for everyone to afford it. Currently, PrEP is either available at market cost through medical stores and online platforms or at subsidised costs through a couple of non-profits in select cities.

Last year saw a breakthrough in the fight against the Human Immunodeficiency Virus (HIV), with the United States Food and Drug Administration (FDA) approving twice-yearly injectable pre-exposure prophylaxis (PrEP), lenacapavir. The World Health Organization recommended it for a fast rollout, and maker Gilead Sciences signed agreements with generic manufacturers, including Dr Reddy’s Laboratories, to make the jab available in 120 low- and middle-income countries at lower cost.

Experts see the long-acting injectable as a solution for those who find daily pills a bother, but wonder if India is ready for this innovation.

The slowing fight against HIV

Since the first identification of HIV-infected individuals in 1986, India has made progress in controlling the HIV epidemic. HIV prevalence among adults (15-49 years) was 0.20% in 2023, which represents a 44% decline since 2010, said the ‘Sankalak, Status of National AIDS and STD Response Report 2024’ released by NACO last year. The prevalence rate has plateaued over the past few years, underscoring the need for new strategies to end the epidemic in India.

HIV prevalence and incidence remain high in vulnerable populations. Incidence among the general population was 0.05 per 1,000 uninfected persons in 2023. In comparison, men who have sex with men (MSM) see an incidence of 1.55, Hijra/Transgender persons (HTG) 2.76, people who inject drugs (PWID) 34.19 and female sex workers (FSW) 3.33.

A community-led programmatic mapping and population size estimation found nearly 1 million FSWs, 350,000 MSM 288,000 PWIDs, and 96,000 Hijra/Transgender individuals in India. This could be an underestimate—it's not an actual headcount but an estimation provided by informants and most of it is based on frequent visitors to hotspots. It does not take into account infrequent visitors, and many may not be visiting these hotspots.

The HIV prevalence numbers vary from state to state. For instance, West Bengal had the highest prevalence of HIV among transgender/hijra population at 9.15% while Punjab had high prevalence in both PWIDs (19.57%) and MSMs (11.62%).

In Delhi and Karnataka, the HIV prevalence among MSMs was over 10 times higher and among transgender people over 15 times higher than the national adult average, found a 2023 report by the India Health Action Trust, a technical support unit for NACO.

Chemsex and the role of PrEP

Rise in chemsex—taking stimulating drugs such as crystal meth during sex—among MSMs and transgender persons is another trend that deserves attention.

“Chemsex is popular among queer/trans population not only because of enhanced sexual pleasure but also mental health issues,” said Atul Shendge, an independent public health professional. “The substances offer an escape by diffusing thoughts around past trauma, self image and stigma related to queer identity and same sex activity.”

While the HIV/AIDS awareness and prevention programmes cover people who inject drugs through interventions such as the needle syringe exchange programme, there is no such initiative for those using drugs for sex.

There is also a difference in substance. “PWIDs use opioids and hence NACO programmes focus on opioid substitution. Chemsex, on the other hand, involves stimulants. So, the staff and peer educators engaged in intervention programmes are not aware of how to address these,” Lisa, a public health expert who was in the team that prepared the NACO’s technical guidelines for use of PrEP, told IndiaSpend.

Chemsex also differs in the way it travels. “It is a whole different ballgame. Chemsex is episodic and works through hookup apps and private contacts compared to the injecting drug use which is a more regular addiction, and the physical hotspots and networks are known,” said Shendge.

Those engaging in chemsex also tend to avoid health services. “People don’t open up to doctors and counsellors because they face double stigma of drug use and queer sex. It has become a complex issue due to moralistic and biological take on sex,” pointed out Yogi, a Bengaluru-based queer anthropologist researching chemsex.

Chemsex can impair judgment, resulting in inconsistent or improper use of a condom or a fresh needle. In such a scenario, use of PrEP can offer effective protection against HIV.

The NACO 2022 guidelines called for distribution of PrEP through government centres and maximisation of cost-effectiveness through a case-based approach, under which individuals would be assessed for PrEP eligibility using a risk-scoring system. However, it has not implemented even this limited rollout. In a 2020 study by C-Sharp, Humsafar Trust, and University of Toronto, 76% MSMs expressed willingness to use PrEP if it was available at subsidised price through government hospitals.

“Cost can be a prohibitive factor, especially when NACO is not able to supply antiretroviral (ART) drugs to people living with HIV sometimes. But offering PrEP can substantially reduce the number of people contracting HIV and needing ART drugs,” pointed out Lisa. “To deal with the cost factor, PrEP can be introduced in a phased manner, targeting high risk populations in select locations like Punjab, where both MSMs and PWIDs have high HIV prevalence.”

IndiaSpend reached out to the National AIDS Control Organisation for comments on PrEP, chemsex and intervention strategies for high risk groups. We will update this story when we receive a response.

Lack of public intervention programmes for PrEP in India means its awareness and usage is mostly restricted to privileged class and metropolitan cities. “We get 500-600 queries on PrEP every month and most of these come from big cities as awareness level is higher there. Information has just started trickling into tier two cities,” said Ashish Arora, the co-founder of Dr Safehands, an online platform for sexual health, which offers doctor consultation, diagnostic services, counselling and medication.

A protection for the rich

The market cost of a monthly dose of PrEP varies from Rs 2,200 to Rs 3,000 depending on brand and combinations. The additional cost of diagnostic tests further pinches the pocket. Those interested in PrEP need to undergo counselling and screening for HIV, Hepatitis B and C, kidney function and other sexually transmitted infections (STIs).

It is left to a couple of non-profit organisations in select cities who create awareness and offer PrEP on subsidised rates through tie ups with manufacturers. “We offer one month's dose of PrEP for Rs 400 which goes down to Rs 200 for students or transgender persons who come from lower income backgrounds,” says Manoj Benjwal, a programme officer at Humsafar Trust, a community-based organisation for LGBTQ+ people.

“For diagnostics, we refer them to government hospitals which offer some of the PrEP panel tests for free,” he adds. “But often the staff at some of these facilities misguide people by saying there is nothing called PrEP and the only medication for HIV prevention is post-exposure. So, we have to work doubly hard to convince the people that PrEP is real and it prevents HIV. Already, 80% of the people who contact us for PrEP have incorrect information about it.”

Despite low awareness, studies have shown that high risk groups are willing to use PrEP once informed. A 2016-17 multi-city survey by John Hopkins Bloomberg School of Public Health and Y.R. Gaitonde Center for AIDS Research and Education, found that of 10,538 people who inject drugs and 8,621 MSM surveyed, only 6% of PWID and 8% of MSM were aware of PrEP. However, once told, the willingness to use PrEP was substantially high with 52.4% of PWID and 67.6% of MSM wanting to use it.

Adherence, protocol and injectable

Besides issues with access and affordability, PrEP also comes with the challenge of adherence.

WHO recommends two regimens: Regular and event-driven. Regular regimen means taking a pill every day while event-driven, recommended only for MSMs who have infrequent sex and are able to plan sexual activity, requires the person to follow 2-1-1 regimen: Two pills 2-24 hours before sexual activity, one pill 24 hours after the first dose and one pill again 24 hours after the third pill. NACO guidelines, however, only recommend daily, regular PrEP.

It is not a protection against other STIs such as syphilis, gonorrhoea or chlamydia.

“Many PrEP users avoid using a condom, thinking they are already protected. But PrEP only protects from HIV while a condom shields from other STIs as well,” says Shendge. “So, it is essential that PrEP is given only after proper counselling and condom use is stressed.”

Practitioners also flag misuse of the medicine.

“Sometimes people distribute their medication to friends and peers before sex. These friends can be HIV positive but they won’t know without tests and after taking PrEP, they feel confident to go for condom-less sex and hence end up transmitting HIV to others,” says Arora of Dr SafeHands.

Injectable PrEP can thus be a gamechanger. With twice-yearly jabs, one does not need to worry about daily pills or misuse as these will be administered in clinical settings. “But we have to study long term side-effects. And these will be subcutaneous injections which can be painful,” says Arora.

At the estimated cost of $40 (Rs 3,600) for a year, the injection will also be cheaper than the pills. Lack of state support can, however, continue to affect spread and awareness around PrEP, whether injectable or oral.

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