The search for a cure, what you can do.

Much of life I along with many others have wondered about the day a cure for HIV is found, many have said it would be like the end of the war. During my childhood the only real time we heard about HIV in school, or at home, was a Trocaire advert on TV seeking money for children Africa or the priest coming to visit and speaking about this condition in lands far away that had no cure, sometimes I wonder if they were trying to soften the blow, alerting us to the presence of it in society but presenting the situation in a way that would have us believe it was not going to influence or day to day lives in Ireland, maybe I recall incorrectly now or perceived it incorrectly at the time, either way there was no conversation about how we had this condition in Ireland called HIV that people could acquire through blood products, sex and needle sharing, even though the country was gripped in a heroin epidemic. I remember one teacher in particular, a lovely woman, spoke regularly about how badly a cure was needed and how great the day it’s found will be, in doing so she instilled an awe in me from that very young age about a cure for this (at the time) deadly condition, along with how monumental that day will be.
Looking back Im sure it was my belief that on the day a cure is found we will all come out with tables and bunting to have parties like some sort of D-Day celebration, obviously as I grew older my belief of what that day will be like became more realistic, or so I thought until a recent experience brought my hopes to a much more realistic level, that experience was meeting the wonderful Timothy Ray Brown (AKA The Berlin Patient). Over the course of 2/3 years we have spoke online and recently had the coincidence of being in Palm Springs at the same time and so decided to meet up.

During our time of communicating online, I am embarrassed to say, I had built Timothy up to be some form
of invincible super-hero. The reality did not let me down. Here I met a man, the only one in the world to be cured of HIV, who could have easily continued on with his life under anonymity and without the remitting occurrences of stigma associated with the condition but instead chose to champion the advocacy of a cure, using his own experience to lead the way, however the feeling of invincibility I imagined one would have by being cured of this condition was nowhere to be found, in front of me sat a very level headed, educated person with an insightful opinion on the subject he has chose to represent, no super-hero, just a super-man (in my eyes at least).

On the flight home my mind thought on how silly it was of me to fanaticise someone in this way or in fact to fanaticise something in this way, that something being a cure for HIV. For so long I imagined the highest peak of the mountain to be in developing a cure but now believe it is not. It is with fear of being labelled pessimistic instead of realistic that I say the logistics of making a cure for HIV available to everyone, along with the cost pharmaceutical companies could potentially charge, is far greater than I or many others could have imagined. The fight for PrEP should be an example of this if nothing else. Imagine that a cure is found in five years time, at which stage approximately 125,000 PLHIV will be resident in the UK, a major undertaking that would be nearly impossible to complete at once, so how do you decide who goes first? The sickest, the oldest, or just another postcode lottery for health?

My words are not said to disheartening but to rally the heart of anyone who believes in a cure, those who have patiently waited for the scientific side of things to take shape, to begin thinking and talking about this now so some sort of plan is in place, perhaps there is already one, if so let’s get it shared around. There are other things we can think about and do, for example reduce stigma around HIV so people will get tested in the first place and be in the position to receive a cure if/when it becomes available, start volunteering at your local sexual health centre, an already overstretched resource that if/when a cure becomes available will be stretched so much further, but the most thing I feel we could do for those living with HIV or without is champion prevention and the message that undetectable equals untransmittable, it is fact that when someone has an undetectable viral load and they are consistently taking their medication, it is not possible to pass on the virus. If we do not prevent HIV, unless the cure also acts as a vaccine, we can use it on as many people as we want but the chance of them being back in the same position, at square one, needing to be cured again is very realistic. I know if a cure was found in the next couple of years and administered to me, I can’t guarantee during the expected 40 years remaining in my life that I wouldn’t end up in the same position again if not using PrEP along with other levels of protection.