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30 November 2018updated 09 Sep 2021 4:58pm

Why I decided to go public about being HIV positive

Labour MP Lloyd Russell-Moyle revealed he was HIV positive in a speech to the House of Commons. This is what he said. 

By Lloyd Russell-Moyle

On 1 December 1988, we observed the first World Aids Day. It was created as an international day to raise awareness of the Aids pandemic caused by the spread of HIV and to mourn those who had died from the disease. In two days’ time, we mark its 30th anniversary, and this event gives us pause to reflect on how far we have come and to remember those we have lost.

Such events are also deeply personal to me, because next year I will be marking an anniversary of my own – 10 years since I became HIV-positive. It has been a long journey from the fear of acceptance to today and, hopefully, advocacy, knowing that my treatment keeps me healthy and protects any partner that I may have.

When you are first diagnosed, you get that call from the clinic and they just say, “You need to come in.” They do not tell you the details, and you know immediately that something is wrong. All the different worst-case scenarios flash through your mind, and of course, being a sexually active young man, HIV is one of them. Going in, you kind of know that something is wrong and it might well be serious, but at the same time you are working out all the ways that this is just some joke, some technical error, some tiny thing they are going to tell you that you will be laughing about later. You try to imagine the ways you are going to get out of this, and then in that NHS room, with those cream carpets and the plastic seating we all know, they tell you, and it hits you like a wall. Although you have prepared yourself for it in your mind, nothing quite prepares you for when they say those words. I remember looking up at that ceiling – those false ceilings you get – and wishing that one of the tiles would rip away and it would suck me up, and that I would wake up and it would all be a dream and all be over.

But, of course, the reality is that that is not what happens. Instead, you walk out of that room and, even with all the greatest support and advice that they offer, you feel totally numb. You have a million things running through your mind and, at the same time, a sense of absolute nothingness.

I have decided to make this announcement and speech today, because earlier this year I was at an awards ceremony in Brighton. I had nominated Gary Pargeter, who for a number of years has been running a local club for people living with HIV called Lunch Positive. He had won the award and people were coming up to talk about how important the project was and how brave he had been to talk about his HIV status, and I felt like, “I am watching someone who has done inspiring work, and I am proud to have nominated him, but I have not told anyone else in this room that I am HIV positive, too.” Just like so many who attend Lunch Positive, I am lucky because the medication means I will not get sick and I cannot transmit HIV. I felt that if Gary and so many others can talk openly about it, then so should I.

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The second reason I wanted to have this debate today is because we are genuinely on the cusp of eradicating new HIV transmissions in this country. Figures today show that we are already, in parts of this country, halting the rates of HIV diagnosis, but we are at a fork in the road and I worry that we might be starting to head in the wrong direction, with £700m of cuts to public health having been made between 2014 and 2017. We are not investing in the universal roll-out of PrEP – Pre-exposure prophylaxis – the pill that prevents HIV. So it is important for me politically to speak out.

Finally, I wanted to be able to stand here in this place and say to those who are living with HIV that their status does not define them and we can be whoever we want to be, and to say to those who have not been tested, perhaps out of fear, that it is better to live in knowledge than to die in fear. HIV in this country is no longer the death sentence it once was. A recent study led by the University of Bristol found that due to the advances in HIV treatment, people living with HIV can expect to live a near normal life. The improvement in survival rates for people with HIV is one of the greatest success stories of recent times. What was once considered a terminal disease is now seen as a manageable condition. Yet this information has not changed the narrative, which is still, sadly, framed in those scare campaigns of the tombstones of the 1980s. So much of LGBT culture also is marked by this spectre of HIV, which has led to an incredible sense of fear about the disease.

In that hospital room, and in the days and weeks that followed, I had to come to terms with that fear myself. I am a HIV-positive man, but because I have been taking the right medication for several years I am what the NHS calls “HIV-positive undetectable”. That means not only can HIV not be detected in my system and so I do not get sick, but I cannot transmit HIV to someone else. As the virus lie undetectable and dormant in my body, my medication ensures that the virus does not reactivate, does not progress and cannot be passed on. That is why the NHS says “undetectable equals untransmittable”. UNAIDS highlights three large studies conducted between 2007 and 2016 of HIV transmissions among thousands of couples where one partner was positive and the other was negative. In those studies there was not a single case of sexual transmission of HIV from a positive undetectable person to a HIV-negative partner. It is safer to have sex with someone who is HIV-positive undetectable than with someone who does not know their status, because undetectable equals untransmittable.

Understanding that I was unable to transmit HIV sexually has been life-changing, too. I went from thinking that I would never have a HIV-negative partner, or that if I had sex with someone, I could pass this on, to knowing that I can live a normal life and that any partner I have is totally protected. I cannot transmit HIV to my sexual partner, I have a perfectly healthy life, so my announcement here today should go totally unnoticed… [but my name] might appear in tomorrow’s newspapers as a result of my being the first MP to declare themselves HIV-positive in this Chamber and the second, after only Chris Smith, to openly live with HIV as an MP.

Perhaps foolishly, to gauge what the public reaction might be like, I went on social media to read some of the comments on recent HIV news stories. One does not have to scroll down far to find comments like: “Anyone with HIV who has sex should be tried for murder”, or “fags getting what they deserve”, or “disgusting lifestyle choice”. Now, most of the people behind such comments will be homophobes who are weaponising HIV to attack LGBT people. If it was not HIV, they would find something else, because they are haters and they are not pleasant people.

But HIV stigma is not just a symptom of homophobes. Even the most well-meaning people can perpetuate HIV stigma. It takes many shapes. It can be believing that HIV and AIDS are always associated with a death sentence. It can be thinking that HIV is transmitted only through sex. It is thinking that HIV infections are the result of some personal or moral fault. It can be believing inaccurate information about how HIV is transmitted, which in turn creates irrational behaviour and misconceptions about personal risk.

Before I was diagnosed, I myself perpetuated some of those stigmas, so it is not without judgment that I ask people to reflect; it is a genuine ask that we begin to think, talk and act differently when it comes to HIV. That is even harder when there is a taboo about talking about sex, which means that stigma is often compounded, thereby creating a more risky environment because people do not seek the treatment that they need.

The Sussex Beacon in my constituency is one of only two residential care facilities in the country for people living with HIV. It originally started as a hospice in the 1990s, when three to four people died there each week. Fortunately, end-of-life care is now a rare occurrence at the Beacon, and today most of its support services are utilised by people with HIV from marginalised groups who face a big stigma. Older people diagnosed late, women, black and ethnic minorities – all these groups are disproportionately affected by stigma and rely on the good work of the Sussex Beacon and other charities like it. But their funding is being reduced.

Yesterday, I was lucky enough to get a photo with Stiggy the Stigmasaurus at the Martin Fisher Foundation, as part of the foundation’s campaign to make HIV stigma history. I hope that Members who could not be there yesterday will be able to join me in that pledge going forward. Stigma causes a treatable disease to become life-threatening, because of the impact on an individual’s mental health and their access to medication. No person diagnosed with HIV today should feel any less able than anyone else to thrive and enjoy life because of their status.

Stigma is not just a UK problem; it is a global one. Fifteen years ago, 200,000 people around the world were receiving treatment for HIV. Today, the number is 22 million, but we still have 15 million more who need access to regular medicine.

We are making progress on treatment, but when it comes to stigma we still have so much further to go. Last week, I was in Kenya with the International Development Committee and met a HIV-positive mother of eight children from the Democratic Republic of the Congo. Although she was on medication, she had suffered such abuse that she was forced to flee the DRC and now lives in a refugee camp. Because of the prejudice and violence that she faced as a result of her status, she was forced to leave without her children, and she knows not of their future.

Turning back to the UK, it is the case not just that HIV is treatable, but that it is preventable with one tablet a day. A person can prevent themselves from contracting HIV with pre-exposure prophylaxis. PrEP is revolutionising the fight against HIV transmissions. It has an almost 100 per cent success rate, a higher rate than condoms, in the prevention of HIV, and it is just one pill. We expect this pill to be soon available as a generic drug and, according to the NHS’s own analysis, it could save the health service £1bn in preventing HIV transmissions for future generations. Astoundingly, however, the only way to access PrEP in England is through a limited trial. This is not a medical trial—those have been done and approved. This is not about financing—we know the cost. This trial, as far as I can see, is about delaying the roll-out of PrEP in England because someone meddling in the Ministry thinks that they know better than doctors when it comes to people’s health. It seems to me that this trial is more concerned about what a person does between the sheets than the health of the nation. Despite being just one year into this three-year trial, 3,000 additional places have already had to be added, and it looks like the 13,000 places will run out early next year. England now lags behind all the other nations in the UK as the only country with capped PrEP access on the NHS. There are two years to go until this trial ends, yet people cannot get immediate access to PrEP, with many clinics now having long waiting lists, and some completely full.

We know that there are cases of young men who have sought out this prevention pill and have been turned away because the clinics cannot accommodate them, and they have subsequently become HIV-positive. Those men now have to live with HIV and everything associated with it because of the misguided morality of this decision. Let us make no mistake: these are not isolated cases. The longer this government wait to roll out PrEP properly, the more people will be diagnosed.

Will the Minister intervene to ensure that PrEP is made routinely available on the NHS in England – just like his government has already done with Northern Ireland with direct rule, just like the Scottish government has done, and just like a Labour Government has done in Wales? Failing that, will he at least uncap the trial to ensure that those trying to access the drug can do so? Will he reverse public health cuts, including those in sexual health, so that the government meet demand, including that of people affected by HIV, otherwise we seriously risk undoing the really good progress that we have all made?

Just today, the latest Public Health England statistics show that the UK has met its UN AIDS target of 90-90-90, ahead of 2020, which was the date. This is amazing progress, with 92 per cent of people living with HIV diagnosed, 98 per cent on treatment and 97] with undetectable viral load, meaning that they cannot pass it on.

At the Terrence Higgins Trust World AIDS Day reception earlier this week, I am told that the Minister hinted that the government was considering bolstering their ambition on HIV to committing to reaching zero new HIV transmissions by 2030. In the light of today’s statistics, now is the time to seize that opportunity of reaching zero new HIV infections and be a true global leader. Can the Minister provide details of how the UK government plans to end HIV infections and what timescale it will commit to?

At present, one young person every day is still diagnosed with HIV and young people continue to suffer some of the worst sexual health outcomes. We cannot be complicit on this. Will the Minister agree to work with the Department for Education to ensure that relationship and sex education guidance has a strong focus on not only HIV prevention, but anti-HIV stigma? Will the Minister also liaise with Department for International Development colleagues to ensure that research funding is increased so that we can make huge gains in scientific breakthroughs to eradicate this disease globally?

In two days’ time, on World Aids Day, I will stand with my community to mourn the losses of those who have died of Aids. I will do so at the Brighton Aids memorial – the only such dedicated public memorial in the country. I will stand there in the knowledge that I will live a life that so many could not. I am able to do that because of the people who have come before me: the people who have fought and lost their lives, and the people who stood up and had their lives changed. We owe it to these people to beat the disease – something we have the power to do. I hope that future generations will look at HIV in the same way that we look at smallpox and polio, as diseases that were once killers but can now be eradicated.

LGBT people often talk about coming out as something that you constantly have to do to new neighbours, friends and work colleagues. You could say the same about your HIV status. I have spent many nervous moments deciding whether to tell new friends and acquaintances about my status. The lump forms in your throat and your heart flutters, and you finally kind of blurt it out and hopefully move on. Well, Mr Deputy Speaker, I would like to thank you for giving me this platform to do just that. I thank my friends, family and colleagues for supporting me. I also thank the Terrence Higgins Trust for all its work and the support it has given me in preparing for this debate.

We have the ability to end new HIV transmissions, as well as to end stigma and discrimination – not only here, but globally. I hope we can all make that our mission. 

This is an edited version of the speech Lloyd Russell-Moyle made about HIV and World Aids Day on 29 November 2018. The original can be viewed on Hansard here

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