On a chilly Sunday evening in London’s cozy basement gay bar New Bloomsbury Set, Will Nutland, Richard Kahwagi, Greg Owens, Sadiq Ali and Roy Trevelion are talking about how they leapfrogged over the U.K.’s National Health Service (NHS) and managed to provide PrEP to thousands of Brits, most of them gay men.
They were so effective, in fact, that their efforts could be the main driver behind a stunning 30% drop in HIV infections throughout England, and a 40% drop at London’s largest sex health clinic alone.
“The U.K. gay community has suffered so much from AIDS,” says Greg Owen, a scruffy, blond bartender and club promoter, “so to be able to alter that for the younger generation is huge.”
— GrEG Owen (@Greg0wen) March 2, 2017
In the U.S., PrEP has been FDA-approved under the commercial name Truvada since 2012, and is widely covered by health insurance companies. Particularly among urban gay men, it has sparked a sexual revolution akin to the emergence of the Pill for women in the 1960s. Some municipalities, including San Francisco, are working to offer PrEP at low or no cost to drive down HIV infection rates.
But the NHS government has yet to approve PrEP, insisting on a three-year testing period for safety and efficacy. Nutland, a researcher at London’s School of Hygiene and Tropical Medicine, says the real reason for the trial period is to stall until the two drugs that make up Truvada become generic, making it vastly more affordable for the perpetually underfunded NHS.
— 56 Dean Street (@56deanstreet) April 30, 2016
The clinical trial was only green-lighted after a recent legal scuffle between NHS and PrEP advocates, in which the government claimed it was not obligated to cover PrEP because it was prevention, not treatment. Advocates countered that NHS-approved drugs for diabetes and cholesterol were preventives.
A court agreed in November, ruling that NHS had an obligation to get PrEP to citizens. The clinical trial begins this year.
All that came well after Nutland bought some generic Truvada online in July 2015. Frustrated he couldn’t access PrEP through the NHS, he ordered it from the prominent Indian generic-drug maker Cipla, which has provided low-cost HIV meds to developing countries for nearly 20 years. (Unlike in the U.S., in the U.K. it is legal to order meds online from other countries, so long as they are bought for personal use.) Via Cipla, the drug cost him about $50 a month versus the $1,300-$1,500 it would have cost him out of pocket in England or the States.
Nutland, 49, arranged to have the necessary testing that goes with PrEP—baseline and regular HIV testing, as well as testing for kidney function, which Truvada can interfere with in rare instances—done at a NHS sexual health clinic.
And, voilà, he was on PrEP.
A few months later Nutland, joined by graphic designer Richard Kahwagi and Positively UK’s Marc Thompson, started Prepster, a one-stop shop for buying safe, reliable PrEP online from reputable companies. Prepster also advocates for the NHS to cover the treatment and Gilead to lower the its price.
Since then, they say, the site has onboarded nearly 5,000 Brits (most, though not all, gay men) onto PrEP, operating as a 21st century Dallas Buyer’s Club.
The site directs visitors to an online pharmacy where they can buy generic Truvada from Mylan, another major generic-maker from India. It also guides them through the process of asking their local NHS clinic to run the necessary tests. Some clinics are more receptive than others—the best have been in London, with its large and empowered LGBT community. (And, not surprisingly, a massive drop in new HIV infections.)
At the same time, Owen was launching his own venture: After discovering he was HIV-positive right after trying to get on PrEP, he and friend Alex Craddock started IWantPrEPNow. The two buyers clubs have since joined forces, and HIV/AIDS advocates in the U.S. are very interested.
What about the claim that drugs from overseas aren’t effective or safe? That’s the argument Senator Cory Booker used to vote against allowing Americans to import drugs from Canada. In 2015, Dr. Nneka Nwokolo, whose London clinic diagnoses 1 in 5 HIV cases in the U.K., tested more than 250 samples of imported PrEP and found none of them to be contaminated or fake.
“Cipla and Mylan are manufacturers of generic [HIV meds] used in successful HIV treatment programs worldwide,” Nwokolo told NewNowNext in an email. “Our concerns weren’t that their drugs were not genuine, but that unscrupulous individuals might try to provide counterfeit versions.” She urges customers only order Truvada through the highly vetted companies featured on Prepster and IWantPrEPNow.
The news that HIV rates have fallen so far so fast, in approximately the same time frame that Prepster and IWantPrepBow set up shop, has given Nutland and Owen a sense of vindication.
“It’s been absolutely critical,” Sheena McCormack, one of the U.K.’s top HIV researchers, told Buzzfeed. “As clinicians, I think we realized that it was going to be far too slow even if the NHS had commissioned a PrEP program. And if IWantPrEPNow hadn’t come along, we would not have been able to signpost people [to it], or to very quickly come together with Greg to work up a safety net to make sure the drugs people were accessing were real.”
Sadiq Ali, a Scottish circus performer who made PrEP part of his platform as a Mr. Gay World 2016 contestant, says “PrEP drops into conversations quite naturally now.” But he and other buyer-club advocates know they still have a long way to go to reach everyone at risk in the U.K., not just the plugged-in urban crowds of London and Birmingham. “If I go back to Edinburgh, it’s not quite as talked about there,” he admits.
That’s why it’s still essential for the NHS to approve PrEP: Far more people will go on it when it’s free instead of $50 a month, which is still prohibitive for lower-income Brits.
In the meantime, the PrEP boys should be proud of themselves—they’ve done something remarkable with minimal government help. Owen tells of seeing a tweet from a 22-year-old who had just came out to his family at Sunday dinner.
“His mum said, ’I’m afraid you’ll get AIDS,’ and he explained, ’No, Mum, I’m on PrEP.’ Then his Aunt Peggy said, ’I heard about that on TV!'”
Stories like that keep the guys going: “We were just in a meeting with government bureaucrats,” Nutland recalls, “and they were like, ’We can’t do this!’ While, meanwhile, we just announced a 30% drop in HIV rates from something we started at our kitchen tables.”
“Even in the age of Brexit and Trump,” he beams, “a bunch of random people can still make something happen.”