Lloyd Russell-Moyle MP talks with Hadley Stewart about his HIV diagnosis, HIV stigma and the global pandemic.

Lloyd Russell-Moyle made history two years ago when he gave a speech in the House of Commons about living with HIV. The Labour MP chose to publicly discuss his HIV status on World AIDS Day 2018, as a means of destigmatising the virus, as well as calling out the Conservative government’s approach to HIV prevention.

He is one of only two members of parliament to publicly discuss their HIV status, which perhaps reflects the ongoing stigma attached to people living with HIV. When we speak on the phone in December, the MP for Brighton Kemptown is immersed in preparations for the second wave of the coronavirus pandemic. He remains, however, just as passionate about spreading a message of hope for people living with HIV.

“I think there are two kinds of stigma,” Lloyd tells me when I ask about today’s societal stigma towards people living with HIV. “There is external stigma, people who don’t know anything about the condition and therefore assume that it is a death sentence.” He thinks that this type stigma is reducing among “the white, gay community”, yet he acknowledges that other communities with higher rates of the virus are still battling stigma. “There are groups of people, for example, people in the black and Asian community, who face greater stigma and so don’t get tested or don’t engage with services and treatment,” says Lloyd.

The internalised stigma of the virus is something that he views as more damaging. “Then there is an internal stigma, which is when people living with HIV have an assumption or worry that they will be looked upon badly,” says Lloyd, who thinks that this can result in people being fearful of talking about their status with friends or family. “That leads to them being in situation that is bad for their health. For instance, they might be scared of people seeing them taking their medications, so they won’t take their medications.”

Lloyd thinks that this internalised stigma can also be felt by friends or family of someone living with HIV. He tells me a story of when he had just arrived in London, before his HIV status was the subject of newspaper headlines, and he asked his father to bring his HIV medications. “He put them in a brown paper bag and gave them to me under the table,” Lloyd recalls. “Now, he doesn’t have any stigma towards me. My dad was one of the first people, when I began telling people about my status, to research online the latest
treatment and find out more about living with the condition. But the stigma was there in the sense that there was a fear that people would see these medications and that would reflect poorly on me.”

It is an experience that has stayed with Lloyd, and helps him to reflect on the experiences of others living with the virus. “I think internal stigma is still quite strong,” he argues. “And that fear can be absolutely paralysing for people living with HIV.”

He seemingly overcame any fears of talking about his HIV status in the House of Commons, but I wonder if he faced any backlash. “I get negative comments all the time, I’m a politician!” he laughs. “Every day on Twitter I get people saying that I’m an “angry, ginger, whatever.” Now, did it increase? Well soon after I gave that speech, we had people ringing up our office and screaming things down the phone. We do get people screaming down the phone at us all the time, but for the few weeks after the announcement, they chose to scream about my HIV status, rather than any other issues they had with me.”

The social media comments and verbal abuse didn’t take away from him a sense of relief. “On a personal level, since I announced my status, I found it was a weight off the shoulders,” he explains. “You don’t feel like you have to second guess to tell someone or not. Before I didn’t talk about it, but if it came up, I would be open about it. If someone asked, or if I was in a situation where I needed to talk about it, then I would. But for the rest of the time, I’d be asking myself if this was a moment I have to disclose, and what would be the ramifications of that.” This period of angst around disclosing his status with others, Lloyd says, brought him “a lot of mental stress at the time.”

Today, his HIV status is readily available to anyone who searches his name on the internet, something which doesn’t seem to bother Lloyd. In fact, he views other people’s negativity about his status as their own issue, rather than his. “I’m on dating apps, and I can put my status on there without there being any fear of it getting back to anybody,” he tells me. “If people don’t like it, that’s their problem, and not mine. It shifts the burden of the problem away from me, onto the people with the problem, and that’s quite relieving.” Lloyd adds, “If people can, and not everyone can, but if you can talk about your status then I would recommend it.”

There have been positive comments too, such as people contacting him to say how his speech helped them talk about their HIV status with loved ones. “I’ve had people who write to me and say that they’ve seen my speech, or their sexual health clinic told them to watch it after being recently diagnosed,” he recalls. “Or another person reached out to me and said they didn’t like my politics, but they’re living with HIV and that my speech really helped them. It’s actually really nice to have people say, politics aside, I really respect you for that or that helped me.”

It can be tough to put “politics aside”, I reply, especially given how political decisions during the Conservative’s tenure have cut funding across the HIV sector. The rolling out of PrEP, the HIV prevention drug, was a lengthy battle that ping-ponged between activists, the courts and NHS commissioners. “I think of the roll out of PrEP and how torturous that was, how slow that was, and how for some people they still can’t have access to it. I think Labour would have been very different, we would have rolled out it once the safety testing had been done,” he argues.

But some may rebut this, stating that the Tories introduced PrEP through a clinical trial. “The current government’s so-called trial was unnecessary,” Lloyd replies. “They did this for a cost cutting reason. We have seen the cuts to public health, not just HIV and sexual health service cuts, and these sectors have really suffered. Now the government has got rid of Public Health England, we’re now in this sort of limbo, where we just don’t know what this new body will be delivering in terms of sexual health services.”

Is he worried, I ask, as someone living with the virus, seeing first-hand these cuts come into force? “It always does concern me, whenever you see any cuts,” he says. “On a very personal level, I remember in 2010 when the Conservatives won with the Liberal
Democrats, I remember thinking I need to take some decisive action to ensure I have enough money in reserve, in case I need to start buying the drugs myself.” Lloyd was so concerned about what a Conservative government could mean for the supply of HIV treatment, that he sold his house at the time to be able to put aside money in the event of funding being withdrawn. “I do worry about these things. I do worry that government can so easily turn their focus to a group of people and so easily make them victim of their cuts.”

He credits the work of third sector organisations focusing on HIV and sexual health, for continuing to hold the government to account when their political decisions start having a real-life impact on those living with the virus. “Groups like the Terrence Higgins Trust, NAM, and National AIDS Trust, are so important in ensuring that sexual health and HIV services continue. It’s another reason why when I spoke in parliament, that I mentioned my concern about the way funding for sexual health services was going, and what that meant for people living with HIV.”

The current focus of government is swayed towards the coronavirus pandemic. Having tested positive for the coronavirus in early March, Lloyd tells me that his sense of smell is slowly coming back. He seems concerned, however, about other important issues falling by the wayside. During his role as Shadow Foreign Minister, Lloyd was on the ground in Liberia during the aftermath of the Ebola outbreak, and saw first-hand the impact that the epidemic had on the country’s broader public health. “There is always a danger with epidemics and pandemics, that the focus on general health reduces,” warns Lloyd. “I remember visiting Liberia after the Ebola epidemic and all the resources had gone into fighting Ebola. What I saw there were people with drug-resistant tuberculosis and people developing drug resistance to HIV medications. That’s because the focus was solely on Ebola.”

Lloyd acknowledges that this is unlikely to happen in the UK, yet his argument does mirror some of what is currently happening in the NHS: access to GP appointments remains a challenge, routine dental check-ups have gone out of the window, and sexual health clinics are running reduced services. On the morning of our interview, for instance, Lloyd got his hepatitis B booster. This being an attempt, he says, at practicing what he preaches about not allowing the pandemic to impact on people’s general health. “It’s really important that we continue to ensure that people continue engaging with broader health services,” he continues. “I do worry that all resources go into the pandemic, and that we do forget about other conditions. And the ones that we do forget, are the ones that are less pressing in the public’s mind, which of course could be HIV and sexual health services.”

The Labour party recently had a change of leadership, with Keir Starmer replacing Jeremy Corbyn at the helm of the opposition. “Keir has been quite right to be forensically taking them to task for their failings and their dodgy dealings,” replies Lloyd when I ask about Labour’s strengths as an opposition to the current government. “The corruption of this government during this pandemic has been breath-taking.”

A self-confessed optimist, I’m hardly surprised that Lloyd can see Labour winning the next general election, when we hypothesise about the government colours turning from blue to red. “I think that Labour must be in the right place for the next general election, otherwise, some of the behaviours that have been reprehensible will be normalised. I am optimistic that there are windows of opportunity and I hope that we will be in the right space for the next election.”