‘We die! You make money!’

‘We die! You make money!’ was one of the slogans that HIV activists chanted at the New York Stock Exchange in 1997 in protest at pharmaceutical companies whose high drug prices had barred millions of people with the virus from accessing life-saving medicines.

When the international Aids conference was held in Durban, South Africa in 2000, as the death toll continued to mount across Asia and Africa, protesters filled the streets, incensed that the life-saving drugs were where the disease was not. More than 2.4 million people died that year of Aids-related illnesses.

But grassroots activists continued to fight and eventually won the struggle to get affordable HIV treatment to those in need around the world. Global HIV infection rates have dramatically declined. As of 2023, of the almost forty million people living with HIV, more than thirty million are on antiretroviral treatment.

Although the quest for a vaccine remains elusive, there has been increased attention on preventing HIV rather than treating it. Oral pre-exposure prophylaxis (PrEP) drugs became available just over a decade ago. At first the pills were too expensive for low-income countries but eventually the prices came down, thanks to generic manufacturers.

But the drugs are not reaching everyone who needs them: 3.5 million people are on oral PrEP; the UN global target for 2025 is 21.2 million. The pill also has disadvantages: it needs to be taken every day and requires frequent trips to a health centre. Stigma and discrimination remain pervasive.

Lenacapavir was approved as an antiretroviral treatment in 2022. It is being investigated as a possible PrEP, delivered by injection twice a year. Andrew Hill, a senior visiting research fellow in the department of pharmacology and therapeutics at the University of Liverpool, has been working on HIV since 1988. He describes lenacapavir as the ‘closest we have ever been to a HIV vaccine’.

In a trial of five thousand women aged 16 to 25 in South Africa and Uganda, lenacapavir offered 100 per cent protection against HIV. In a second trial, it offered almost complete protection to ‘cisgender men, transgender women, transgender men and gender non-binary individuals who have sex with partners assigned male at birth’ in Argentina, Brazil, Mexico, Peru, South Africa, Thailand and the United States.

The drug’s manufacturer, Gilead, sells lenacapavir under the brand name Sunlenca. It costs $42,250 a year in the US for treatment. It is yet to be priced for prevention, as it hasn’t received regulatory approval. Research by Hill and his colleagues found that it could be profitably produced for just $40 a year per patient.

Gilead has done a deal with six manufacturers to produce generic versions of lenacapavir that will be available in 120 low and middle-income countries that are ‘high-incidence, resource-limited’. While Gilead has been praised for moving swiftly and licensing the medicine without waiting for registration, the deal excludes many countries with a high HIV burden, particularly in Latin America.

‘Gilead’s restrictions on access to lenacapavir could allow the HIV epidemic to spread,’ Hill told me. ‘It will be very hard for people at risk of HIV to access lenacapavir at affordable prices in many countries where HIV is spreading the fastest.’ Some of the countries excluded from the deal may decide to issue a compulsory licence to access the medicine, but others may not see the investment as ‘cost-effective’.

The UN wants to end the HIV/Aids epidemic as a public health threat by 2030, but that will require providing everyone, everywhere with access to the latest medicines, as well as addressing the conditions that put certain people at risk of acquiring HIV, such as a lack of economic opportunities for women. Healthcare needs to be seen as a right, not a commodity. As Paul Farmer asked in Pathologies of Power, ‘if access to healthcare is considered a human right, who is considered human enough to have that right?’