Writing for PinkNews.co.uk Daniel Carter, reflects on being part-way into a month long course of PEP - Post-Exposure Prophylaxis – and expresses concern at the lack of awareness, particularly within the gay community, of PEP as an option for those possibly exposed to HIV.
Back in 1983, HIV was a death sentence and most of those who contracted it would die.
Now in present day, we have fortunately moved on a lot and people are no longer dying from the disease. In 2011 less than 1% of those living with HIV died from HIV/AIDS related complications, the majority of those that did received their HIV diagnosis late.
HIV has become something that for many has lost the fear factor; we have arrived at a point where HIV doesn’t scare people as much as it once did. The drugs allow for people to live as long as a HIV negative person. And in some cases HIV positive people can end up living healthier lives and having a better standard of healthcare than those without HIV. It is absolutely vital to remember that the vast majority of those living with HIV can and do live long and happy lives due to huge leaps forward that we have made. These factors however mitigate what is still a frightening disease that just isn’t talked about enough. Like with anything that pertains to sex, us Brits don’t discuss it, it is something that is brushed under the carpet, it is somebody else’s conversation.
I write this article having recently started a course of PEP (Post-Exposure Prophylaxis – a month-long prescription of antiretroviral drugs) after a hook up went wrong. Blame shouldn’t be a factor but the guy evidently did not care for his health and he certainly didn’t care for mine, I don’t know whether he was positive or not but given what he’d told me about his sexual history it’s a possibility. I don’t wish to go into the graphic detail but we’d discussed using condoms and that was the plan but he discarded them. Even though my unprotected contact time with this person was only a matter of seconds it did seriously scare me and I knew despite the small risk that was posed to me I wanted to get to grips with the issue as soon as possible. I consider myself a rational person but the thought of any sort of exposure to HIV absolutely terrified me. Sleeping really didn’t come easy that night and I knew I needed to do something even if it was only for my peace of mind. Despite the fact I’ve been reassured by a lot of people that my risk of infection is slim to none it has made me think that there is an important message in this.
I went to the GUM clinic the morning after my encounter however by the time that I got there they were busy and I had to go over to A&E who can also prescribe PEP. I saw a healthcare assistant within a few minutes of arriving at the department who took notes on my case. I was surprised to find out though she had never heard of PEP and I was having to explain to her what is was for. After that initial meeting I had a 2 hour wait before I saw an actual doctor. She took a blood test and then talked me through the drugs that I would be taking. We discussed why I wanted the drugs and even though my case is low risk there is still considered a risk and I could be prescribed the drugs if I wanted them. Hospitals only give out a week’s worth of the drugs at a time and I will have to visit a GUM clinic during the duration of taking the drugs. Surprisingly though the GUM doctors may decide to take me off the drugs even though the drugs should be taken for a period of 28 days.
As a subject HIV is not something that we talk about anymore, the last time there was a major government backed health campaign was in 1986. The Department of Health currently funds HIV Prevention England which created the “It starts with me” campaign but in terms of major visibility there isn’t much there for people. This is by no means to dismiss the fantastic work done by different groups, some of the NHS funded groups do a fantastic job of being out in the community pushing the safe sex message but I have to question whether these groups get enough support to continue the work that they do?
Since the major campaigns aimed at prevention have all but disappeared, charities such as the Terrence Higgins Trust have had to pick up the buck and make sure that information gets out to the public. Even then the information isn’t hitting home with over 100,000 people having HIV in the UK, over 25,000 of which have not been diagnosed. Those who remain undiagnosed carry a much greater risk of passing the disease on as well as creating greater risks for their own long term health. There are people across all demographics that contract HIV regardless of age, colour, religion, class, background, sexual orientation or relationship status. The simple fact of the matter is no matter how good the drugs might be if you get diagnosed late that is a major risk factor and potentially life threatening opportunistic infections. Yes, we are living in harder times and there is now less money but that does not mean that money shouldn’t be directed into prevention campaigning, it’s all well and good having a clear message but if it’s not getting out to the public then it becomes pointless.
Discrimination against those who have HIV has not gone away; it really gets to me when people on their Grindr or Fitlad profiles refer to HIV negative or positive people as “clean” or “dirty.” How many of us would refer to a cancer patient as dirty because of their illness? Why on earth should HIV be treated any differently?
The greatest way to prevent HIV or any STI transmission is safe sex, prevention is always better than cure and condoms 98% of the time will prevent STI transmission. If you fear that you have been exposed to HIV there is still time to prevent becoming HIV positive but you have to act quickly. If you start on PEP within 48 hours on potential exposure to HIV there is a very strong chance you will never develop the disease, at a push 72 hours but after that period the drugs become a lot less effective. My course of drugs includes two different types, taking five tablets a day for the PEP itself and then another two drugs to tackle the sickness induced by the PEP. The drugs are the some of those that can be taken by HIV positive patients and can cause nausea and diarrhoea. Fortunately for me, for the most part I’ve had stomach cramps and a slight loss of appetite, I was sick the first day I took them but other than that I’ve been fine.
Of course, the drugs should not be considered a morning after pill alternative for combatting HIV, these drugs have to be taken strictly for 28 days after potential infection and at their worst they can weaken the state of the kidneys and liver. I don’t mind admitting that I dreaded my first dose of taking them but it would seem I’ve had it easy compared to how some people have it.
What I always find shocking about PEP is so few people, especially gay men, know what it is. Surely it should be something that everyone should know about. Surely something like PEP is a lifeline for people, I’ll admit the first time I ever heard of it was in an old old episode of Waterloo Road, I don’t understand how such a thing can be so unheard of.
According to my doctor my risk of exposure to HIV is minimal and I have very little chance of having contracted HIV on the basis that I do not know the status of the person that I slept with and my contact time with this person was incredibly short. But my advice to anyone would be if you’re at all worried about exposure to HIV there is no shame in getting yourself checked out.
The point I really want to get across here is that HIV is still out there and no matter what leaps and bounds we have made it is something that we should continue to tackle. Knowledge is the best key to tackle HIV, we began to tackle it effectively in the 1980s by educating people and the time for education has come again, less money is not an excuse to roll back campaigning, if anything money should just be better directed, after all we are still talking about something that can be a life threatening disease.
As with all comment articles the views expressed may not necessiarly reflect those of PinkNews.co.uk.