Last November, the National Health Executive (NHS) in the UK lost an appeal in the UK Court of Appeal regarding their failure to fund PrEP for individuals at risk of contracting HIV. PrEP, or Pre-Exposure Prophylaxis is a common term for regimes of anti-viral medication taken by individuals to lower their risk of being infected with HIV. Marketed as Truvada, clinical test results published by the National institute of Health in 2010 declared that the treatment could reduce the risk of contracting HIV by up to 90%, a rate that seemed farcical even in a world where information about HIV is more accessible than ever, and medical experimentation with cures has been steadily gaining steam. Based on those results, the U.S. Center for Disease Control issued interim guidelines for using the drug, despite the fact that it was over a year away from FDA approval, aware that doctors had been prescribing it off-label for HIV treatment. The titular quote is from former President Obama, speaking on World AIDS Day in 2011 about the breakthrough that PrEP represented. The story raises some fascinating questions about how doctors interact with experimental medicines when facing down diseases that will otherwise seriously compromise quality of life for patients, and even kill, but nonetheless remain unsanctioned by national healthcare providers and largely available through backchannels.
Facing the exclusion of these drugs from national health providers, the reality of preventative healthcare for many PrEP users in the UK and elsewhere in Europe to this day involves ordering the medicine online from pharmacies in India and Swaziland. Branded Truvada can cost up to £400 (around $540) in the UK per month compared to a fraction of that cost when ordered online. Information is scarce, and the knowledge gap has been filled by activists running information websites which link individuals at risk of contracting HIV to pharmacies in other parts of the world and providing information relating to treatment use. While certain websites work with the NHS to ensure that the pills are safe, others are directly linked through to generic sellers, where there is no real guarantee that the drugs are safe for use. Perhaps the danger here is best summed up in the words of the founder of www.IWantPrEPNow.co.uk (a website he created while homeless and in the immediate aftermath of a HIV diagnosis), speaking on the nature of his online advocacy for PrEP;
“I was thinking, It’s not like I’m selling Viagra that might work or might not work…I’m selling drugs where people might rely on it for their HIV protection”
The dangers are obvious: drugs ordered online may be counterfeit, or may not contain the correct active ingredient. Even in cases where the medicine is genuine, it may be of inconsistent or lower quality than branded drugs, or the drug levels may not be as high as branded alternatives. Beyond this, PrEP carries complications even where the medication used is completely legitimate. Users must take the drug daily and commit to regular checkups with doctors and nurses to ensure continued kidney function, to avoid liver problems and manage changes in immune system. Concerns abound over whether STD rates will increase if PrEP users forgo condoms when relying on the treatment without adequate counselling from medical professionals who can be bypassed when the drugs are accessed online – the president of AIDS Healthcare Foundation, Michael Weinstein, infamously referred to PrEP as a ‘party drug’ when making this critique of the treatment. Where individuals rely on online supply, delays at customs can put their treatment at risk. Even in cases where doctors are involved in treatment, they may understandably be concerned with the ethics of prescribing treatment that is not nationally sanctioned. In response to this, the General Medical Council in the UK has pointed to existing guidelines which state that doctors have a responsibility advocate for the best treatment of their patient, even where that treatment is not commissioned. It’s not clear the extent to which this solves the problems for concerned doctors, who may worry about the effectiveness of the treatment, even aside from the fact that here the medication itself is coming from online providers, potentially untested, and perhaps even fake.
On the other hand, and compellingly, if the drugs are safe, then access to the drugs may outweigh the harms of not involving doctors at all, given that for many individuals, talking to doctors about HIV infection is still taboo, or too costly to contemplate, and the presence of alternative avenues to access potentially life-saving drugs may be the more appealing option, and understandably so.
Against these objections and the murkiness of backchannel access, PrEP has contributed to near-miraculous drops in HIV diagnosis rates in the UK of up to 40% when compared to rates in 2015. A multilayered explanation of this phenomenon places PrEP on the forefront of causal factors for this astonishing decrease, with clinics reporting sharp increases in men requesting therapeutic blood monitoring in UK clinics, upticks in visits to websites like www.iwantprepnow.co.uk (which at its height was receiving 12,000 visits a month) or PrEPster, and outreach by advocacy groups to general practitioners to discuss use of the drug by patients all considered to have contributed to this. Media focus on the NHS litigation likely triggered traffic to websites, contributing to a sense of necessity for NHS funding of the drug that in real time has saved thousands from dangerous exposure to HIV.
The NHS is still determining the criteria by which PrEP will become available to patients in the UK and while this will, in the short term, likely be restricted to groups that are at most risk of contracting HIV, this strict approach should relax when the patent for tenofovir (one of the constituent drugs in Truvada) expires later this year.
If nothing else, and in contemplation of future NHS supply of the medication, the enhanced media attention on a group that is historically underserved by the medical and scientific community will hopefully contribute to a breakdown in the societal taboos that may currently lead individuals at risk of HIV to the internet and away from their doctor’s office.