Frustrated by bureaucracy, activists led grassroots effort to get drugs to curb HIV infections

LONDON — Will Nutland, a doctor in public health and research fellow in London, was in Amsterdam earlier this year when he decided to take his first tablet of a generic version of Truvada, the once-a-day pill that can help prevent HIV infection.

Nutland bought the drug online from an Asian manufacturer. He didn’t know whether it would work, or harm him, or whether what he was sold was actually what had been advertised on the internet. But, like many others in the United Kingdom, he also didn’t feel like he had a choice.

Although these pre-exposure prophylaxis (PrEP) drugs could be found elsewhere, in the UK, the brand-name and generic versions of Truvada were not yet available for preventive use. The National Health Service had rejected appeals to pay for the drugs because, it said, there was not enough evidence to roll out the therapy on a large scale.

“My primary reason for taking that PrEP was as a guinea pig,” Nutland recalled.

After a long legal battle over whether the NHS should be responsible for providing PrEP, the agency announced earlier this month that it would finally make PrEP available free of charge for at least 10,000 people. But that decision was preceded by a grassroots effort by Nutland and others who decided to take matters directly into their own hands, importing drugs and testing them on themselves — a testament to what happens when surging demand for protection from HIV outpaces the willingness of government agencies to respond.

Drugs can be legally imported into the UK for personal use. But that doesn’t mean they come without risk. Still, Nutland and others believed those risks were outweighed by the fear of difficulties they would confront if they had contracted HIV.

“People are going to do whatever it takes,” said Dan Glass, an activist with ACT UP, or AIDS Coalition to Unleash Power. “The last thing I want them to do is go through the psychological trauma and the physical manifestations of having HIV.”

There is little doubt that demand for protection from HIV has grown exponentially here. Among men who have sex with men, NHS prescriptions for emergency post-exposure prophylaxis (PEP), a 28-day regimen used as a last resort against HIV, have risen by about 300 percent from 2011 to 2015.

Unlike PEP, PrEP is used before possible exposure to HIV. It’s generally used by people who are HIV-negative but who have an elevated risk of contracting the virus.

Truvada was first approved for preventive use in the United States in 2012, and has been shown to significantly reduce the chance of infection. In the US, PrEP is available through some private insurance plans, and Truvada’s manufacturer provides assistance to individuals with lower incomes.

In addition to raising concerns about the evidence behind PrEP, the NHS resisted making the drug available for cost reasons, arguing that the financial burden should be carried by local authorities.

The NHS is expected to pay up to £10 million pounds (about $12 million) over the next three years to cover the costs in its PrEP trial. But activists argue that providing PrEP is still a cost-effective public health measure when compared with the lifetime cost of care for people with HIV.

Greg Owen, a native of Belfast who lives in London, had been tinkering with the idea of starting to take Truvada for years. In August 2015, after reading about the drug on US-based websites, he decided he would use pills given to him by a friend who was HIV-positive and had to switch medications.

Owen announced to his online friends and followers that he was starting to take Truvada. The following day, he went to get an HIV test, and the “two dots” on the rapid testing kit revealed he was positive. It was too late for prevention.

“Ah, the irony,” Owen recalled thinking. “I finally get the … drug, and I’m presuming I’m still negative, and then I ended up positive.”

It was clear, Owen said, that PrEP should be more readily available to those who needed it in the UK.

He and Nutland went on to cofound iwantprepnow and prepster.info, two websites to raise awareness about PrEP. The sites, which collectively saw nearly 13,000 unique users last month, also provide information to people who wanted to order generic versions of Truvada online, detailing specific manufacturers and online pharmacies whose products were deemed safe and effective after testing.

Health experts say PrEP has proven to be a fundamentally important advance when it comes to HIV prevention.

“People want PrEP because we know whatever prevention strategies we’ve got, they’re either not effective enough or they’re not utilized enough, or they’re not available enough,” said Dr. Laura Waters, a consultant at a sexual health clinic in central London and part of the executive committee at the British HIV Association. “We can preach about condoms all we like, but people don’t use them enough.”

PrEP, experts say, allows individuals at risk to be empowered in the choices they make in their sex lives. Instead of simply relying on condom use and HIV status disclosure, they can be more consciously involved in health choices. And that, some say, could help relieve the burden of HIV, and one day even bring the spread of the pandemic, now in its fourth decade, to a halt.

“I know the analogy with the contraceptive pill is a bit of a tired one, but that’s because it is such a fitting parallel,” Waters said. “For the first time women were given control over whether they experienced a life-changing event. A pregnancy and HIV diagnoses are very different things, but they are both preventable, if you don’t want them.”

Despite the promise of PrEP, many health agencies remain reluctant to embrace it. Across Europe, only France, Norway, the Netherlands, and Belgium are currently conducting large-scale trials or sponsoring national PrEP programs.