Men and women across the UK at risk of acquiring HIV were offered hope after a high court ruled that a preventative treatment for HIV – known as PrEP – can be legally funded by the NHS.
Until now, those at risk of HIV transmission have been left with no choice but to obtain the preventative drug using private prescriptions or online pharmacies where the quality of medicine cannot always be assured.
Michael, 39, who lives in Sussex, buys Tenvir-EM – a generic version of Truvada, the drug used for PrEP – from online pharmacies. His partner is HIV positive and he takes PrEP to further reduce the “infinitesimal chances” of infection.
“The NHS is digging its heels on reviewing the drug so I, and many in my position, turn to internet pharmacies. I’d much prefer it to be available on the NHS. I would happily pay the prescription charge several times over, if only for the reassurance that the medicines are genuine. For now, I rely on good faith,” says Michael.
NHS England said earlier this year that it would not routinely fund the drug as it claimed the treatment was preventative and not its responsibility. Instead, local councils were put in charge, which responded by saying they did not have the funds.
Dr Will Nutland, founder of Prepster – a PrEP awareness website – and a public health worker at the London School of Hygiene & Tropical Medicine, began taking the drug this year in part to protect against HIV transmission, but also to test the quality of online purchases.
“I’ve been sexually active for 30 years and I’ve always had the risk that HIV could be transmitted; condoms can break. I bought my first box of PrEP over a year ago as I wanted to demonstrate how easy it is to get hold of. It cost £45 from India. I thought, if I was advocating for it, then I must be prepared to take them myself. I found that, broadly, it was a simple process although I once had to pay 25% import duties,” says Nutland.
About 4,000 people acquire HIV in the UK every year. The average cost of a lifetime of treating each patient at current prices is put at about £360,000. Nutland believes that this cost could be eliminated.
Michael James, 49, from London, buys three months’ supply at a time from an online pharmacy in India at a cost of £150. But he is worried about safety, and angry with the NHS for discriminating against those at risk of HIV transmission.
“Of course it is a risk not knowing the quality and effectiveness of the medication but this is the only option many of us have. It’s a disgrace to be discriminated against in such a way by the government, who continue to handball the responsibility from authority to authority at the risk and expense of the individual,” says James.
Nutland isn’t personally concerned about the safety of PrEP bought over the internet, instead he believes the greatest problem is that those most at risk cannot afford to buy the drugs.
“There’s a Facebook group, where people swap information and batch numbers. There are about 100 of us in the UK, who test at sexual health clinics to measure the amount of the drug in our blood. There hasn’t been one person whose test hasn’t shown the drug, the only issue being when the tests have been taken too soon, too little of the drug shows up.
“The website IwantPrEPnow lists four reputable pharmacies. I don’t personally have any concerns with the drugs coming in. A major problem is affordability. I can afford the £45 a month, but the people who should use it might not be able to,” he says.
Although it is a positive that PrEP is easy to get, Nutland worries that may stop people from having advisable health checks before taking the drug, which is another reason that he is urging the NHS to fund the drug.
“It’s a concern that people using PrEP are doing so without HIV tests and kidney function tests,” he says. “If it was through an NHS commission, through a sex clinic, there would be a full barrage of tests. People are not safeguarding other things. Those who can protect themselves. Buying online is a stopgap until it’s properly available.”
Users of HIV prevention PrEP urge NHS to fund "life-changing" medicine
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