During another successful National HIV Testing Week I’ve spoken to a lot of different people about my own experiences of testing, and the one test that altered my life forever. I’m now seven years into my journey with HIV and with World AIDS Day 2016 approaching I’ve been thinking about the remarkable changes that have happened during that time.
Seven years ago I was told I would need to start medication immediately, I was diagnosed ‘late’ and even though it was only five or six months after the initial infection my immune system was already compromised, my cd4 count 213 and this could get worse. Nowadays the recommendation is that everyone with HIV should start treatment when they receive their diagnosis, if they are ready to. In practice this still isn’t happening everywhere in the UK, but the majority of consultants are putting the research, and more importantly the people they’re delivering care to first, rather than worrying about the bureaucracy of the NHS.
I still remember queuing at the hospital pharmacy for the first time, at the time I thought – this is it, this is what I have to deal with for the rest of my life. Four pills, each and every day. One of them had to be kept in the fridge; I was going to need to have conversations with people about my status even if I wasn’t necessarily prepared for the situation.
But within months, a new formulation of Ritonavir was available which no longer needed refrigeration. A couple of years later my Darunavir was available in a new preparation which reduced the pill burden from two to one, I was now on three pills a day not four. I stayed on this combination for about five years taking both these pills with Truvada. In January 2015 I decided to make the switch to Eviplera (Complera in the USA) – a single dose pill that contains the two drugs found in Truvada (Tenofovir and FTC) combined with Rilpivirine.
It was now much easier to carry around a spare pill in case my plans changed, there were far less bottles of medication taking up space in the bedroom and the side effects I had been experiencing cleared. In fact the only drawback of the current regime is that I need to eat food when I take it.
There are new formulations of antiretroviral therapy now entering health markets which will reduce the potential harm that some current medication can cause to the kidneys and bone density. Science and technology are changing all the time and there’s investment in looking at different methods of delivering treatment to the body, via an injectable for example.
Our knowledge of what the treatment can do has also moved on leaps and bounds. When I was diagnosed the Swiss Statement had already been released, but was fairly muted and not something I came across until a few years into my diagnosis, and then I was still wary about it as I hadn’t heard professionals talking about it at all. The statement was pretty simple, if you have HIV and are taking effective HIV medication correctly you can’t transmit the virus when having sex with other people, your viral load must be undetectable but there was a notable caveat, you had to be sure you had no other STIs.
Fast forward to summer 2016 and we received the results of the PARTNER study. This study also looked at the effectiveness of treatment and an undetectable viral load between couples, where one has HIV and the other doesn’t – but this time there were no other conditions attached. After 58,000 acts of sex there had been no linked transmissions of HIV in participants. If you have been undetectable for six months or more the virus can’t transmit to anyone else. And this time some organisations and people really began to talk about the results, and how incredible they are and what they mean for people with HIV.
Over the past seven years I’ve benefited from advancements in research and the science behind HIV treatment. These ‘gifts’ have enabled me to better self-manage my HIV and balance my mental wellbeing as well as provide me with an empowered attitude regarding the new meaning of ‘undetectable’. I’m also inspired by the knowledge that I play the key role in maintaining my good health. Scientists, pharma industry, consultants and the health system might concoct, design, manufacture and provide me with the medication, but it’s me who takes the meds every day, it is my will and determination that means my health and mental welfare are managed well.
As the seventh World AIDS Day since my diagnosis draws near it is harder to forget that this condition is still treated with ignorance and fear by so many people around the globe. Access to the medication that keeps me alive, healthy and undetectable isn’t universally available everywhere. There are economic and cultural barriers still hindering people’s abilities to get hold of medication that can not only save their own lives but help protect others.
Criminalisation of HIV is still a huge issue in many countries and it would appear that even the latest research and science there’s little appetite to change the current laws in many regions. Progress is being made to some extent, according to UNAIDS the number of countries or territories with travel restrictions for people with HIV reduced from 59 in 2008 to 35 by September 2015, but there is still a long way to go in to alter attitudes everywhere, especially in large regions of the world such as the Middle East.
And there is still a long way to go within the HIV community and the communities which HIV impacts the most. What it means to be undetectable is not promoted widely by all organisations or health services nor received by everyone who is at risk of HIV.
Different health systems and procedures are often used as an excuse to work in isolation within our borders, but I believe the core needs of the people who want support or assistance are often the same – they want access to medication that will help them live well and they want to be able to connect with other people who understand what they are going through.
World AIDS Day provides a platform to debunk myths and educate people about their misconceptions of the virus. But people with HIV and the organisations that support us should also be using this time to share and learn with each other, around the world. We tell people the virus does not discriminate against people, we need to remind ourselves it doesn’t care about international borders as well. We are all unique and talented in different ways and perhaps the best gift of all would be to share our knowledge and spirit with one another.