Grassroots Activists Provide Thousands of At-Risk Individuals in the UK with Lifesaving HIV Drugs

*Updated on 1/18/2016 at 9:39 AM EST

With 36.7 million individuals living with HIV, worldwide, preventive measures are imperative, particularly for those who are at increased risk of infection. Unfortunately, many individuals cannot afford pre-exposure prophylaxis (PrEP) that have been proven particularly successful in reducing HIV risk, such as Truvada. In some instances, such as in the United Kingdom, Truvada isn’t even available for public use.

However, some activists have dedicated their efforts to making generic forms of Truvada more easily accessible to at-risk citizens in the United Kingdom, and at a significantly cheaper price. Increased access to preventive drugs is thought to have contributed to a 40% reduction in HIV infections last year, according to a number of sexual health clinics in London.

A concept made famous by the film “Dallas Buyers Club,” these drug “buyers clubs,” are normally run by activists who set out to make generic HIV drugs accessible and affordable. In countries like the United Kingdom, where the National Health Service (NHS) has, in the past, refused to pay for the drugs to make them more widely available, websites such as PrEPster are the only avenue that individuals have to get access to PrEP as a means to protect themselves from infection.

PrEP can be lifesaving for individuals who are at increased risk of HIV infection. On a PrEP regimen, these individuals will take medications, such as Truvada, on a daily basis as a way of reducing their chances of contracting the infection. According to the Centers for Disease Control and Prevention (CDC), when taken consistently and on a daily basis, PrEP can reduce HIV risk by a whopping 90%. In the United Kingdom, HIV medicine has been approved for use, but it is not widely accessible.

In response to NHS inaction, Will Nutland, PhD, research fellow in the Faculty of Public Health and Policy at the London School of Hygiene and Tropical Medicine, created PrEPster, a website that provides details for online pharmacies that are based in India and Swaziland, and through these pharmacies, individuals are able to obtain these drugs, according to a press release. PrEPster has partnered with clinics to ensure that the drugs are both safe and effective. In addition to increasing accessibility, these generic drugs are also much cheaper, with “a difference of £360 ($439) each month.” Though it may seem too good to be true, the whole thing is “completely legal as long as the drugs are bought for a personal supply for up to three months at a time," and individuals are not purchasing the drugs directly through the website.

These efforts to increase the accessibility of PrEP are thought to have been a large contributing factor in the 40% decrease in HIV infections that were reported by the 56 Dean Street clinic, as well as a number of other sexual health clinics in London. This decrease has highlighted the importance of PrEP and has been used as evidence of the treatment’s effectiveness by the National AIDS Trust as they challenged a previous decision that had been made by NHS “to drop plans of a national [PrEP] rollout.”

According to Deborah Gold, chief executive of NAT, “The dramatic drop in new HIV cases at Dean St. shows the power and potential of PrEP to stop HIV in its tracks. It also shows that the people who could benefit the most from PrEP are aware of their HIV risk and are tacking active steps to prevent transmission—even if it means accessing and paying for the medication themselves.”

PrEPster is not the only big website providing at-risk individuals with information on where they can access these lifesaving drugs; another site has helped around 2,000 individuals. Its name? I Want PrEP Now. The website provides not only an avenue to obtain these drugs, but also a wealth of educational materials on PrEP. I Want PrEP’s homepage boasts that it has “all the information you need to understand and start taking PrEP in one place.”

These grassroots activities have increased awareness pertaining to the safety and effectiveness of PrEP, and the NHS is finally paying attention. In December, NHS England announced its plans to conduct a 10,000-person trial over the course of three years which they hope will help inform them on the best way to bring these needed drugs to those who need them in the United Kingdom.

In the NHS press release, Kevin Fenton, director of Health and Wellbeing at Public Health England said, “Currently 13,500 people are living in the UK with undiagnosed HIV and we are still seeing around 5,000 new infections each year. Given we are in the fourth decade of this epidemic there are too many new infections occurring, and we need to use all tools available to save lives and money.”

With activists working on the ground floor, and the NHS working with Public Health England up top, perhaps those who are at increased risk in the United Kingdom will finally have a number of preventive options available to them so that they can adequately protect themselves and their partners from a virus that has already claimed countless lives.

Editor’s Note: The initial version of this article gave the impression that the websites, PrEPster and I Want PrEP Now, directly supply generic PrEP drugs. This is not true. The websites provide details about online pharmacies that sell PrEP.