To mark World Homeless Day, Greg Owen shares his experience of homelessness & HIV.10 October 2017 is World Homeless Day, we spoke to formerly homeless activist, Grey Owen who is one of the leading HIV/AIDs & PrEP activists in the UK and founder of website I Want PrEP Now. Taking a trip down memory lane, we discussed how he dealt with a HIV+ diagnosis while homeless and how this paved the way for his activism.
Ony: What was your life like before you were HIV-positive? How if it all has it changed since you were diagnosed?
Greg: My life now is totally different but not for the reasons you might think. Preceding my own diagnosis, HIV was already part of the fabric of my life. Some of my best friends have been living with HIV for many years.
In January 2013 my fiancé who I had been with for 7 years was diagnosed HIV positive. His diagnosis ruined and ended our relationship. When I was diagnosed in August 2015, I’d been to hell and back and HIV had already robbed me of enough: my wedding, my home, my cat and the future I had planned and invested in. I felt spurred on to post that fatalistic social media update outlining my status the very next day. The ironic thing was, I’d just managed to get hold of some Truvada to use as PrEP. That was the reason why I had an HIV test. The post mentioned this and it kind of went viral, resulting in a huge amount of awareness of PrEP.
Fast forward 2 years and PrEP has pretty much become my life. I’m both a very visible person openly living with HIV and one of the world’s most prominent PrEP advocates. So that is quite a difference from my previous life where I was widely considered a party boy of little substance. In more general terms nothing has really changed. I’m still the same person. I’m fit and healthy. I fell in love again after my diagnosis. I had sex again after my diagnosis. I retained my self-worth and my ‘sexy’.
Ony: Do you think people who are homeless are at greater risk of being exposed to the HIV virus and why?
Greg: I don’t “think” this we KNOW this. We know from study data that there is a direct link between socioeconomic hardship and increased sexual risk taking. In the UK, we have free health care from the NHS; anyone diagnosed with HIV has the option to access free medication and care but this still requires some negotiation, ability and means to engage with services. The greatest challenge I faced when I found myself with no fixed abode a few months after my diagnosis was keeping clinic appointments, because I never knew where I’d be sleeping or which friends (if any) I could stay with. I felt frustrated, resentful, powerless and trapped. It was probably the first and only time I felt like an “ill person”.
I can’t speak for all people living with HIV but certainly for me, being in control and self-managing my condition was important and it had afforded me comfort and defused those negative feelings. It’s not difficult to see how when faced with these situations some of us struggle with adherence to treatment or drop out of care all together. These stresses and emotional flare ups can also lead to substance or alcohol use and potential misuse. There’s an underlying current of stress and anxiety that comes with being homeless that I doubt most people will understand unless they have been homeless themselves.
During the periods when I was homeless I found myself confronted with a whole new landscape to navigate. There were times when I sold sex for cash and a place to stay overnight or for a few hours. There were other times when I traded sex for drugs and a place to hang out. The risk of exposure to HIV and sexual assault in these situations is incredibly high. It can also make negotiating consent and safer sex options more difficult. I personally managed this pretty well most of the time, even with paying clients but I would see some guys involving themselves in high risk activities that they otherwise (sober and off the clock) wouldn’t engage in.
These scenarios are not just limited to the gay chemsex and sex work scenes. I know many, many people (not just gay men) who are in ‘transactional relationships’. When we look particularly at migrant women and HIV we see elements of my own experience mirrored. This is for several reasons – mainly because some depend on trading sex for somewhere to live and to gain income. They may not identify as sex workers as such, they are just vulnerable when first in a new country. Often within the dynamic of that kind of relationship the vulnerable person is disempowered and dependant financially and domestically, which can make personal boundaries, consent or leaving difficult to establish or maintain.
Ony: What inspired you to set up iwantPrEPnow.co.uk?
Greg: It was very much by accident, I had been thinking about starting PrEP in 2013/2014 after my engagement ended. I was aware that my sexual behaviour was putting me at an elevated risk of contracting HIV. As it happened, one of my friends had just changed his HIV medication and had two pots of Truvada left over that he offered to me for use as PrEP. So I went to Dean Street Express for an HIV test (I had tested HIV negative the summer before). My test result came back positive. I was too late to start PrEP. Ironic right!? I finally decide to start PrEP. I finally manage to get hold of PrEP and I’m just a few months too late. The very next day I announced my HIV status on stage to 150, after the event I posted it on social media and mentioned that I couldn’t start PrEP. People started asking me “What is this PrEP stuff? And why would it have kept you HIV negative”. Instantly I could see that there was interest and demand but no access. I saw a problem and I saw the solution. Earlier that year, I had heard at a meeting that you could import three months worth of certain pharmaceutical drugs for personal use. PrEP was one of those drugs. Myself and iwantPrEPnow co-founder Alex Craddock set about doing some research. Six or seven weeks later we launched iwantPrEPnow.co.uk. The site currently sees 20,000 unique visitors per month and almost a quarter of a million people have visited the site with three quarters of a million page views.
Ony: What should we as a society be doing to support to HIV-positive people who are homeless?
Greg: I think it starts with kindness. That’s a great start for everything right!
Access to treatment and linking into care is important. Perhaps we need to look at creating safe and welcoming spaces where people can meet and share experiences and generate some much needed peer support. It’s not always easy to find this when living with a very heavily stigmatised health condition.
It would be incredible if we could establish a model that provides homeless people with some assistance in managing their own health. Basic things like access to a phone and internet time to assist engagement with their care provider. Providing free bus passes would help. Some ART regimes require medication to be taken with a meal so providing this would be useful too. Access to wrap around services and vaccines for hep A, hep B, HCV and the flu vaccine needs to be considered.These things don’t need to be conducted in a clinic setting. Community spaces can facilitate this. Wouldn’t it be great if we could offer these things under one roof? In a building that is specifically for homeless people living with HIV.
Homelessness and unemployment are difficult traps to be stuck in; even more so if we struggle with our HIV status. I think as a society we need to look at the wider picture. We need to start seeing people as people. Not as patients or a burden.
Ony: What is the biggest misconception that people have about homelessness and HIV?
Greg: The blame game needs to be addressed. It sickens me. The notion some people have that an HIV infection or homelessness is someone’s own fault and or comeuppance for poor choices or “bad” behaviour. That’s demoralising and it’s cruel and it benefits no one. Very few people actively choose to be in either situation. Life just happens. We all need to reserve our judgements and focus our energies on helping people live the best lives they can in their current situations and support each other to live the lives we want in the future.
Homeless people are not lazy. Homeless people are not ‘broken’. Homeless people can be anyone.
So I guess the biggest misconception people have about homelessness is that it’s “other’, something that doesn’t concern them. We all need to care about homelessness and HIV.
Greg Owen is co-founder of iwantPrEPnow.co.uk a website that facilitates the safe purchase of genuine generic PrEP (the HIV prevention drug). Author of gregowenblog.wordpress.com which discusses and tackles the realities of HIV, chemsex, gay community, sexual well-being, London life and PrEP. Follow him on twitter @greg0wen #GregChats
Watch PrEP17: the coming of age of PrEP at http://prepster.info/prep17/