PrEP and HIV: a personal story

There's a pill that can prevent HIV: don't you think it should be available?
21 February 2017




There's a pill that can prevent HIV: don't you think it should be available?

This tag line is from's new poster campaign. It’s a struggle to comprehend why we’re still asking this question in 2017. Truvada (the branded drug from Gilead) was approved for use as HIV prevention pre-exposure prophylaxis (PrEP) in the United States in June 2012. Almost 5 years later, NHS England has still not provided any provision or access to this game changing HIV prevention drug. 

So what is HIV? 
Human Immunodeficiency Virus (HIV) attacks a specific type of immune cell called a CD4 lymphocyte. Untreated, the virus slowly destroys the immune system, eventually leaving the infected person vulnerable to a host of other "opportunistic" infections including bacteria like tuberculosis, other viruses like JC and CMV, and parasites like toxoplasmosis. This happens when the number of CD4 cells in the bloodstream falls below a critical threshold needed to keep the immune system functioning. When this happens, the person is said to have AIDS - Acquired Immune Deficiency Syndrome.

People pick up HIV infection most commonly from sex, but the virus can also be transmitted by sharing needles or from mother to child during pregnancy, birth and breastfeeding. Without testing, diagnosis and treatment most people who contract the virus will die from an AIDS related illness within ten years. But with early diagnosis, and adherence to effective treatment, a person with HIV can go on to have a long and healthy life without progressing to AIDS.

The Public Health England data for 2015 recorded 88,769 people living with HIV in the UK. New diagnoses for 2015 were 6,095 and it's estimated that 13% of people infected with HIV are unaware of their status. I am one of those 6,095 people. I was diagnosed HIV positive on 12th August 2015 (tested negative 12 months before) and started treatment 2 weeks later. I take 1 pill a day, I have no side effects and I have adjusted to my status. But it could have been a very different story for me.

I was aware that my sexual risk taking was elevated throughout 2014-2015. There were a number of contributing factors, primarily the breakdown of a long term relationship in the spring of 2013 and the downward socioeconomic status that resulted. There was substance use too. 2015 brought a sense of acknowledgement of these risks and I wanted to do something proactive. I wanted to try to take back some control. I was however realistic about how successful my attempts at behavioral change would be. Changing my behaviours and patterns would be gradual and occasionally flawed . I might not be able to - or in fact even 'want' - to change my behaviour when it wasn't necessarily doing harm, but I knew I needed some significant risk reduction. The solution presented itself in the form of PrEP.

How does PrEP work?
This blew my mind a little bit! HIV, a pretty if somewhat angry-looking virus, has little spikes (called gp120) which it uses to invade CD4 cells. Once inside the CD4 cell it uses an enzyme that it brings in with it called reverse transcriptase to produce a DNA copy of the viral genetic information that is then inserted into the host cell's own DNA sequence. The instructions in this DNA copy are used as a template to produce hundreds, or even thousands, of new virus particles which then depart to infect other cells and other individuals.

PrEP is actually a combination of two drugs in one tablet which is marketed under the trade name Truvada. One of the drug molecules in Truvada is called tenofovir (TDF) and the other is emtricitabine (FTC). These agents target the HIV reverse transcriptase enzyme, which mistakes the drug molecules for the DNA building blocks it's seeking to use to assemble the DNA copy of the viral genetic sequence. This irreversibly damages the viral genetic code, rendering it useless and prevents the infection from progressing. 

This is quite ingenious, but it's nothing new. In fact this is very similar to the process that we have been using for many years to treat and maintain viral suppression in those people with an established HIV infection. That said, for treatment of established HIV infection we incorporate the use of a 3rd drug, which hits a different component of the virus, to minimise the risks of the virus becoming resistant to the drug therapy. This is less of a risk in someone who has not yet been infected, which is why PrEP works safely with just two agents. As such, PrEP can be taken as a daily regime or intermittently for use around a specific sexual event or risk of exposure to HIV. PrEP is also more than just taking a pill: we recommend that you link into care and have quarterly full STI screenings and access to any other support or service that you might require.

That's kind of where my journey as the poster boy for PrEP in the UK began. I managed to get some Truvada to use as PrEP from a HIV positive friend who had changed his meds and had 2 pots left over. I had announced on my social media to 8000 people that I was going to start taking PrEP and writing my PrEP diaries in an attempt to myth bust. I had no idea that when I went along to Dean Street Express the next day for an HIV test to confirm that I was still HIV negative that I would instead receive a positive diagnosis. I shared my diagnosis on social media the very next day and sufficient interest about PrEP had been generated within my social network to plant the seed for the conception of "iwantPrEPnow".

How did we do it?
We do have PrEP access in the UK – of sorts. In quite an unorthodox series of events and initiatives, some of which are reminiscent of the buyer's club days of the 80's; a group of us decided to take matters into our own hands, circumventing the bureaucratic foot dragging and stalling of our country's National Health Service (NHS). a site that educates and agitates for PrEP, along with our site iwantPrEPnow, which facilitates the safe purchase of genuine generic PrEP from online pharmacies, launched in October of 2015. This is authentic community based, grassroots activism in its truest form.

It is one thing signposting where to buy drugs from online but it is another to campaign for PrEP support offered through our fantastic network of sexual health clinics for a biomedical HIV prevention tool that has not been commissioned. Here's where things got interesting. Instead of a patient, or in this case PrEP-user, presenting at clinic to be assessed, treated or offered other services, self-sourcing PrEP users (predominantly gay and bi-sexual men) started turning up to sexual health clinics clutching their bottle of blue pills and demanding to be supported. Testament to the dedication and passion of our NHS clinicians, that support was made available and clinicians picked up the baton and formed their own network of PrEP "clinician activists". These clinicians not only supported their patients but each other in navigating this uncharted landscape. In effect this movement changed our NHS from the back end and from the inside out.

What changed?
Then something extraordinary happened. A handful of central London clinics began to notice a shift in their monthly HIV diagnoses patterns. Reductions in monthly HIV diagnoses were becoming obvious. Initially clinicians suspected that either their service users were visiting other clinics or perhaps a renewed awareness and dialogue facilitated by the media attention around PrEP and HIV prevention had encouraged more lower risk individuals to test for HIV, skewing the numbers. After conferring with each other, the 4 leading central London sexual health clinic's reported drops of 30%-50% in new diagnoses in 2016. Quite phenomenal.

Consistent rates of other STI's suggests that this drop is not due to a sudden population level behavioral change or increased condom use. The only thing that has changed in HIV prevention in the last 18 months is the introduction of PrEP through the initiatives of iwantPrEPnow and PrEPster. Of course we must credit some of the stemming of new HIV infections to TasP (Treatment as Prevention), when a person diagnosed with HIV begins ART (Anti Retroviral Therapy) and sustains an undetectable viral load for 6 months and becomes uninfectious.

It's not over yet...
Preliminary data from Public Health England, presented at a conference in early February 2017 suggests that HIV diagnoses among gay and bisexual men in England fell by a third in the first three-quarters of 2016.  Full examination of the data is required but there are very strong indications that this is attributable to PrEP. It is certainly exciting and proof that PrEP works incredibly well if targeted at high-risk groups and individuals. This is something that can no longer be ignored nor denied by NHS England. NHS England and Public Health England have committed to a PrEP trial for at least 10,000 people over 3 years.

The trial was due to start recruiting in April/May 2017 but this has been pushed back until July at the earliest. The trial looks to explore some of the currently unanswered questions we have about "how we roll out PrEP", not "does PrEP work". The trial will look at how many sites/clinics will be used, how this will work in a real life setting and what are the real costs. It will explore how people choose to use PrEP and how best to provide a PrEP service for groups of people who weren't included in the PROUD study, for example trans men and heterosexual women. 

While there is cause to celebrate, this sharp downturn in new HIV diagnoses is a much welcome shift in the narrative and indeed reassuring for the future control of the HIV epidemic in this country. Taking a moment to enjoy this news is deserved by all of us. We need to keep our focus and increase our efforts though. It isn't over yet...


Add a comment