As an HIV+ activist, I know drug companies aren't doing enough to end AIDS

• Dan Glass is an AIDS Coalition to Unleash Power (ACT UP) healthcare and human rights award-winning activist, performer, presenter and writer. His book Queer Footprints - a Guide to Uncovering London’s Fierce History and ‘ACT UP PIN UP 2025 Calendar’ that shares the incredible history of HIV and AIDS - is out now.

• Lencapavir has been described as a game changer in preventing HIV. However, its high price point has led to concerns about equitable access to the drug. Activists and doctors are calling for Gilead Sciences, which manufactures the drug, to commit to lowering the price.

Living with HIV+ for nearly 20 years now, I am proud to stand on the shoulders of legends in the HIV activist movement. Diagnosed in 2005, I am lucky to have witnessed huge advances in access to medication and education for many, but not all.

AIDS Coalition to Unleash Power (ACT UP) has been fighting tooth and nail for the lowering of the price of lifesaving antiretrovirals, PrEP, and access to medication for all since the beginning of the HIV pandemic.

Recently, I stood alongside this brilliant group of HIV activists, doctors and healthcare advocates outside pharmaceutical giant Gilead’s London HQ. We were there bright and bushy-tailed first thing in the morning to demand the company allow generic manufacturers the ability to make cheap and available 'lenacapavir' in order to ensure global equitable access to it.

Lencapavir is a new and effective long-acting HIV prevention injection that shows a 96% reduction in the acquisition of HIV, according to the World Health Organization. It has been branded a game-changer for the HIV response, particularly for marginalised communities including women and girls, sex workers, people who use drugs, and the LGBTQ+ community. It can be produced for $40 per person, per year including a 30% profit margin.

Instead, Gilead has chosen to price this ‘miracle’ drug at upwards of $40,000 a year in the US – a price unaffordable for those who need it most.

A Gilead spokesperson told Yahoo News the UK price had not yet been announced.

Our protest took place amid global calls for Gilead to ensure affordable, global access to the drug to end the HIV epidemic for good. We handed a letter to reception demanding they make the drug available and affordable to low and middle-income countries where people are most at risk of acquiring HIV.

Unveiling a banner urging ‘Gilead Stop Your Delay: Generic Lenacapavir Now!’ along with a giant PrEP syringe, we rang a bell every 24 seconds to symbolise that someone newly acquires HIV every 24 seconds (that's 1.3 million people per year).

It’s incredible to think how far the AIDS activist movement has come since the beginning of the crisis in 1981. Quantum leaps have taken place in access to medication, healthcare and support for millions brought about by relentless and visionary activism.

Trailblazing TV shows like ‘It’s A Sin’ and portrayals of HIV lives such as Zac in Eastenders have captured the public imagination, but some people still have the impression that HIV stigma and inequitable access to support is over. So we continue to be angry and refuse to be silent until we have achieved our goal of access to healthcare for all.

To help ensure fair access to lencapavir, Gilead could have followed precedent with other HIV drugs by agreeing to a voluntary licence to the UN-backed Medicines Patent Pool that includes all low- and middle-income countries, allowing other manufacturers to produce the drug, helping bring the price down through generic competition while also enabling greater supply to meet demand and ultimately help to end new HIV transmissions.

Instead, they’ve chosen to negotiate six voluntary licences to generic manufacturers who will be allowed to supply 120 countries with generic versions of the prevention drug.

It’s exasperating they have chosen to take this flawed approach, delaying access to other countries until three years’ time.

They have shut out many middle-income countries globally, particularly in Latin America, where HIV rates are rising. Those excluded from the agreements include Peru, Argentina, Brazil, and Mexico, where half of their trial participants live.

These trial sites were chosen in part because of how serious HIV epidemics are in those locations and individuals, and their communities are part of these trials. This goes against the Helsinki Declaration, which sets out ethical principles for medical research involving human participants.

One of its conditions is that the population of the countries, not just study participants, need to be able to benefit from any new treatments that are subsequently approved from a trial held in the country - this is designed to protect low-income countries from being exploited for cheaper research.

Furthermore, the agreements prevent manufacturers from supplying countries outside of the agreements with any generic lenacapavir - tightening Gilead’s monopoly over the rest of the world and allowing the epidemic to grow.

This drug can only transform the end of HIV transmissions if people everywhere can access it; last year, 41% of new HIV infections were in upper-middle-income countries. The potential of this drug is being limited by this exclusion.

Only including all low and middle-income countries will ensure the price is brought down through generic competition, enabling greater supply to meet demand and ultimately help to end new HIV transmissions. International health agencies and funders need to commit now to ambitious access to lenacapavir PrEP. This is essential in order to get low generic pricing.

In 1996 after immense pressure, pharmaceutical companies released the antiretrovirals that keep people like me alive today. I hope our recent actions go some way to convince Gilead to release the drugs that will keep people HIV-negative tomorrow.

Join me for World AIDS Day at HIV Blind Date @danglassmincer /alright@theglassishalffull.co.uk