It’s not long before Christmas Day 2016, but Greg Owen has other things on his mind. Somebody’s just phoned him up – Professor Sheena McCormack, an acclaimed doctor and expert on disease. And she’s calling Owen to let him know that his recent actions have altered the course of medical history.
Not long before this phone call, things hadn’t exactly been running smoothly for Owen. Indeed, he was a former sex worker, and he didn’t presently have a permanent job. Nonetheless, he’d done things which had potentially saved thousands of lives – and Professor McCormack was recognizing that.
Before this point, though, Owen had experienced his fair share of pain and heartbreak. For instance, he had a history of substance abuse and homelessness, and he’d even once tried to take his own life. On top of everything else, somebody close to Owen had previously suffered greatly following a HIV-positive diagnosis.
Watching this person’s life disintegrate in the wake of their diagnosis was difficult for Owen. Yes, his loved one had slipped into a dangerous place, using drugs as a means of coping with this new reality. In fact, this man’s drug-taking was so intense that he even later experienced a heart attack.
Yes, Owen had done what he could to try and help this person – yet they’d nonetheless almost died. This hit Owen very hard, but instead of wallowing he instead decided to act. So he opted to ensure that HIV didn’t ruin his own life. And furthermore, he went about trying to help those already facing up to it.
So HIV, which stands for “human immunodeficiency virus”, damages the immune system, weakening a person’s capacity to fight everyday illness . Left untreated, this can bring about “acquired immune deficiency syndrome” – more commonly known as AIDS. And those stricken with AIDS have a badly compromised immune system, becoming vulnerable to illness then death. For instance, after an AIDS diagnosis, death can occur in six months or even three years, and there is no cure.
After someone is infected with HIV, the symptoms might not be obvious – though they might appear to have the flu. After this, though, there can follow a stretch of time in which nothing seems abnormal But then, the immune system can begin to fail, and individuals start to pick up more infections. Therefore, early diagnosis is key in avoiding such difficulties, and preventing AIDS from developing.
In the majority of instances, HIV is passed from person to person during unprotected sex. However, if the blood of an infected carrier gets into another person’s system – say from a blood transfusion or sharing needles – this can also lead to the spread of the virus. Furthermore, infants can also contract HIV if their mother has it.
So far, no cure has been found for HIV. However, there are preventative measures, such as the use of condoms during sex. And although the virus cannot be eradicated, antiretroviral drugs can control it. Indeed, these ultimately hinder the progression of the illness and enable people to lead regular lives, with an almost normal life expectancy. So where did it all start?
Well, the illness was initially recognized in America back in 1981, but it hadn’t yet picked up its moniker by this point. At first, it was referred to as GRID, which was an abbreviation of “gay-related immune deficiency.” This was mainly down to the cases discovered being centered around the gay community. However, it was soon noted that the illness was not unique to gay people. Consequently, the term AIDS had taken over by 1982.
Chillingly, since the start of the epidemic, around 32 million people have died as a result of HIV/AIDS. And given that sufferers might not be capable of working – coupled with the fact that they require medical assistance – it can have a negative effect on the worldwide economy, too. So, as you can imagine, the start of the outbreak caused widespread panic – with little information in the public domain.
Over the decades, numerous celebrities have spoken out about matters relating to HIV and AIDS. For example, in November 1991 the basketball player Magic Johnson publicly stated that he had contracted HIV. And Princess Diana became known for raising awareness of the virus/disease, to dispel harmful myths surrounding it.
But, of course, less famous people have also focused their attention toward fighting AIDS and helping those suffering with it. And over the last few years, Greg Owen was one of these people, working tirelessly under the radar. Indeed, this was a regular man who ultimately went on to change the course of medical history.
Now, Owen is originally from Northern Ireland, a working class man with five siblings. With initial aspirations to be an actor, though, he eventually moved to London, England. After a time, sadly, he ended up as a barman in a nightclub. And furthermore, by 2015 he was 35 and having to take an important decision.
For you see, Owen’s life was rather fraught with risks. And so he was forced to consider a wider course of action to protect himself from the dangers of HIV. At some point, he’d heard about a medication regime which had recently emerged to prevent people from catching HIV. This involved a branded drug called Truvada, which would be taken as part of a regimen known as “pre-exposure prophylaxis” – or PrEP.
Now, PrEP could not be accessed through the U.K.’s National Health Service (NHS). And this meant the regimen would cost the equivalent of roughly $650 each month through private channels. However, there was research taking place in the U.K., seeking to determine how good PrEP really was. This project was known as PROUD, and it was being led by Professor Sheena McCormack.
Unfortunately for Owen, however, he’d missed his opportunity to sign up to the research. But he nonetheless persisted in his attempts to protect himself from HIV. This was around the time that his loved one had been stricken by a heart attack following his own HIV diagnosis. And Owen’s lifestyle meant he himself was at risk.
So, by August 2015 Owen had decided that he wanted to start PrEP. And he uploaded a Facebook post explaining himself, which was then seen by a friend who’d already been taking the drugs. Interestingly, this person got in touch to offer Owen some of the leftover pills from his own treatment. Owen accepted and planned to set up a blog to discuss his experiences as he took the medication.
Yet one day on from making his social media post, Owen received some devastating news. For he had gone to a medical center to make sure that he wasn’t already HIV-positive. Once he’d received this confirmation, he thought, he would then proceed with PrEP. But things didn’t pan out this way. Indeed, after being tested, he was told something dreadful. He was already HIV-positive.
Naturally, Owen was taken aback. As he told Buzzfeed in February 2017, “I felt sick.” But the next day, as he worked his job in a gay bar, he decided to post about his diagnosis on Facebook. From here, there was no going back. His news reached lots of people, many of whom offered him their support. But then, a huge amount of people started questioning him about PrEP, something he actually had limited knowledge of.
As you can imagine, the constant barrage of questions about PrEP became overwhelming, as Owen confided to his pal Alex. But around the same time, Owen recalled a nugget of information he had once come across. As he told Buzzfeed, “I was like, ‘I’m sure I was at a meeting somewhere and heard you can import generic hepatitis C drugs for a tenth of the price’.”
With this in mind, Owen set about researching cheaper PrEP drugs. Then, he uploaded the facts he came across onto a website he’d established. This, he thought, would free him up from all the messages regarding PrEP that he was receiving. But in addition to acting as an information resource, Owen’s site also directed users towards obtaining inexpensive, unbranded drugs which could also act as PrEP. These so-called “generics” would have to be brought in from abroad.
However, the logistics of actually doing this had to be worked out. So Owen got in touch with someone who worked at a sexual health center. This person explained that importing the drugs could be done – but that it should be undertaken with discretion. Moreover, this individual told Owen that health professionals at his center had been keeping an eye on patients using these imports. As you can imagine, this information was hugely significant.
Firstly, it told Owen that PrEP could be obtained for around 10 percent of the cost of getting it from private channels. Secondly, it suggested that these cheaper drugs could actually work. Furthermore, because of the monitoring work undertaken at the health center, it was known which drugs were effective.
Recalling his hush-hush conversation with the medical professional, Owen told Buzzfeed, “I said, ‘So this is legit – legit but dodgy. Can we do this?’ And he said, ‘Not only can you do this; you must do this. We’ve been waiting for someone to do this. We’re diagnosing people every day and do you know how heart-breaking it is to know that PrEP would stop it, and not be able to do something?’”
And so with that, Owen was sufficiently driven to get to work. With the help of his pal Alex, he developed a website filled with useful information. And crucially, it provided links to Asian companies which could provide generic PrEP medication. Appropriately, this website that the pair had designed was called IwantPrEPNow.co.uk.
Of course, Owen had his concerns at this time. Put simply, he was worried that these drugs he was directing people towards might not actually work. But by September 2015, the PROUD research led by Prof. Sheena McCormack had concluded. And it had extremely encouraging findings. PrEP, it appeared, was a powerful means of stopping people from contracting HIV.
So one month later, IwantPrEPNow.co.uk was launched. But for some time after this, Owen was unsure of himself. Yes, he tried to act the part, putting on a confident persona. But underneath this, he was financially broke and couch surfing – and he feared that the generics would fail people. As you appreciate, he was no medical expert despite his fact-finding mission. But he was nonetheless driven by his own HIV diagnosis and by his loved one who’d suffered the heart attack.
Speaking to Buzzfeed, Owen tried to express his motivation – particularly in relation to this loved one. “All I was out to do was to even out the score for him and me,” he said. “My whole goal was that if I helped keep one person negative then my HIV status is equal, and then one more person means that I won. I don’t deal in shame or guilt or regret but [the thought was], ‘I’m going to make my situation count’.”
In the wake of its launch, Owen’s website started to attract a massive stream of visitors. And eventually, he even received an invite to speak on British radio, in Bristol. Still struggling financially, Owen borrowed some money and made the journey to Bristol to undertake a 20-minute broadcast. From this point on, as Owen later put it, “It all started going crazy.” His website now had more visitors than ever.
With the site up and running, a medical professional named Dr. Mags Portman had taken note. A HIV specialist, she got in touch with Owen to ask him for a drink and to offer some help. As Owen recalled to Buzzfeed, “She said, ‘What can I do? What are you struggling with?’ And I said, ‘I’m learning as I go but I need credibility and visibility.’ And she said, ‘Leave it with me’.”
So Dr. Portman made contact with the General Medical Council (GMC) to ask how medical professionals could help patients to obtain PrEP, without the help of the NHS. As Owen explained, “The GMC directed her to something that was already established and given as guidelines. It basically says it is your responsibility as a doctor to advocate for the best treatment for your patient, even if it’s not commissioned. In other words, the GMC gave the green light to initiate the conversation around PrEP.”
From this point on, more and more homosexual men reportedly visited sexual health centers to request checkups. And they claimed to be on the generic PrEP medication and wanted to know if it was working. As for Owen’s website, it continued to attract significant numbers, always seemingly on the rise. For instance, it started out with 2,500 unique visitors per month. Considering the number of people diagnosed per year is around 6,000 in the U.K., that was some result.
But in March 2016 Owen and his supporters were faced with a new challenge. At this time, England’s NHS brought an end to the process which might have led to PrEP becoming widely available. And while this was undoubtedly a blow, it conversely brought more public awareness of the issue. Furthermore, that wasn’t the end of the matter.
No, because after the NHS had announced its stance, a number of HIV charities decided to unify in their opposition. Subsequently, legal action was taken. But as all this was going on, Owen’s website continued to grow, with more and more people ordering foreign generics. It meant one thing though – he couldn’t keep up both the website and his job.
So astonishingly, Owen gave up the part-time employment keeping him afloat so that he could work solely on his site. This, however, was a huge commitment which didn’t provide him with any income. But he credits his mother for supporting him during this time. And touchingly, there was a donation from a doctor which helped him maintain the website.
Towards the end of 2016, some good news finally emerged. Perhaps you’ve guessed it, NHS England had been defeated in the courts. So now it would begin funding PrEP medication. At this point, Owen was back in his native city of Belfast for a brief period. And he was working in a bar when he heard the news. As he recalled, “Every time I turned round from the bar I’d be sobbing and have to dry my eyes and carry on serving pints.”
Soon after the court decision, Prof. McCormack phoned Owen to praise his efforts. As he recalled to Buzzfeed, “She said, ‘It’s all very well us doing this – professors, doctors, researchers – but you did something that none of us could have done. You convinced people that they would want to use PrEP because you showed them how easy it was. And then you implemented support for them and then made it easy for them to buy it. None of us could have done that because none of us are you’.” And with that came further good news.
Apparently, in McCormack’s own medical center, 300 fewer individuals had received a HIV diagnosis in 2016. And that was to say nothing of the statistics for other clinics. For the true number of people that Owen’s efforts really helped will likely never be established. But it’s undoubtedly substantial. As McCormack herself put it to Buzzfeed, Owen’s impact has been “indescribable.”
As for Owen himself, he’s apparently relieved that he was able to have a positive impact. “It’s amazing,” he told Buzzfeed. “To make my HIV status count, and to fight back. It was really taxing and it cost me a lot personally – I don’t know how I didn’t break. I look back, the past 18 months, and think, ‘Wow. I did the best I could do’.”