A new generation of drug buyers’ clubs, like those set up at the height of the AIDS epidemic, is seeking to combat a ‘crisis’ in preventing new HIV infections, by providing access to cheap generics of a breakthrough prophylactic.
The original buyers’ groups, made famous in the film, Dallas Buyers Club, were set up in the 1980s, to import experimental drugs not approved by US authorities, when AIDS treatments were in their infancy, and the disease was a death sentence for many.
Treatment rates have risen dramatically since then, but 1.8 million people became infected with HIV in 2017, and the United Nations has warned high infection rates threaten to derail efforts to defeat the disease.
Pre-exposure prophylaxis (PrEP) is a groundbreaking daily pill that can prevent infection, but for many at risk, the cost puts it out of reach – leading to a re-emergence of the buyers’ clubs.
“History may not repeat itself, but it sure rhymes a lot”, said Mitchell Warren of the US-based AIDS Vaccine Advocacy Coalition (AVAC).
“This is a really remarkable example of the rhyming … There is a prevention crisis, we need oral PrEP as part of our prevention programmes”.
The commercially available Truvada brand, produced by Gilead Sciences, can cost more than $1,000 for a three-month supply and access remains patchy.
Last year, fewer than 400,000 people obtained PrEP through mainstream health programmes, pilots, and trials, according to data collected by AVAC.
The unmet demand has led some campaigners to set up clubs, to help those at risk to import generic drugs, produced in developing countries for a fraction of the branded price.
Among them is Alex Smith, who set up the Davie Buyers Club in 2016, while working as a sexual health nurse in Canada, after repeatedly seeing patients infected with HIV.
“These were patients I had talked to about PrEP, but they weren’t able to access it, and within six months or so in some cases they were exposed to HIV”, he told the Thomson Reuters Foundation.
“I found those particularly distressing because it was a very preventable situation.”
The new buyers’ clubs do not sell drugs. Instead they provide details of trusted online pharmacies and manufacturers, based in countries such as India, which sell generic drugs for as little as 19 pounds ($24) per month.
The clubs exploit a loophole in World Trade Organization patent rules, which allows small-scale imports of medicines for personal use.
For users in many countries, the process can be completed legally, and several small-scale trials have found no evidence of fake drugs among the generics.
Experts say the buyers’ clubs appear to be most used in Europe, but can also be found from North America to Australia.
Joshua Edward, 44, who got his PrEP through a Canadian buyers’ club for several years until his province introduced coverage last year, called it a game-changer.
“For a lot of us it felt like a ticking bomb”, he said.
“One of the things that stands out most is how long I can go without even thinking about HIV, which previously, especially when I was single, was something I would think about constantly”.
PrEP buyers’ clubs remain niche in the United States, but their use is growing, said Leslie Hall, a spokesman for the LGBT+ rights group, Human Rights Commission (HRC).
“I’m enthusiastic about any programme that allows folks[to] who live on the margins of society to have access to life-saving drugs”, he said.
“If you don’t have the top-of-the line healthcare plan it can really get expensive for you … For some people a buyers’ club is the only way they will have access to this drug”.
Historian, Lucas Richert, said PrEP clubs had prompted discussions on drug prices and access to healthcare, especially since many of those who struggled to get the medication were from vulnerable groups.
“The buyers’ clubs in the 1980s challenged policy-makers and academics to think about patient autonomy and access to health care, but also the barriers in the medical marketplace across different countries”, said Richert, of the University of Strathclyde in Scotland.
But there was one key difference, he said – many of the experimental drugs the 1980s clubs imported proved to be ineffective, whereas PrEP has been shown to work.
Experts and campaigners said there was no sign that PrEP clubs were dwindling, with many countries still lacking comprehensive access.
“Our community has always [been] good at taking responsibility for themselves, so yes, I think until it’s available people will continue to self-source”, said Marc Thompson, a spokesman for the British HIV/AIDS charity Terrence Higgins Trust.
However, some said they are looking forward to the day when the clubs finally vanish forever.
“I would hope they would be a last resort”, said Smith. “I feel like health care and access to it is a human right and it should be accessible to everyone”.
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-Sonia Elks @soniaelks, Thomson Reuters Foundation