Latest UK data: HIV transmission rates continuing to fall for queer men
Public Health England has released its annual report on HIV diagnosis, treatment, and testing in the UK. The good news is that the report shows that HIV transmission rates are continuing to fall, and that the combined tools of PrEP and U=U are helping gay and bisexual men effectively tackle the virus.
To put some statistics against it, for gay and bisexual men the rate of new incidences of HIV transmission has fallen by 73% since 2014.
Of the estimated 103,800 people living with HIV in the UK in 2018, 93% have been diagnosed with the virus.
Of these, 97% are receiving treatment.
And of these, 97% are, as a result, undetectable, meaning they cannot transmit the virus.
With the evidence of how effective PrEP can be in preventing the transmission of HIV – which queer men have been proactive about sourcing for themselves if necessary – the UK government is going to come under increased pressure to make PrEP available on the NHS for all who could benefit from it.
“This data show the impact of getting people with HIV to undetectable levels of virus so that they can’t pass it on to sexual partners (aka U=U) whether or not they use condoms…” said Matthew Hodson, executive director of NAM/aidsmap. “Removing barriers to testing, offering PrEP to those who test negative and immediate treatment to those who test positive is crucial. If PrEP were available to all, as has been promised, we might have achieved even more.”
“New diagnoses have not dropped for all communities of gay and bisexual men…” adds Hodson. “We’ve not seen the same declines among Latin American and Caribbean men and it is urgent that these needs are prioritised. Overall though this data contains much to celebrate. The UK is a world leader in getting people with HIV to undetectable levels. If we don’t make it to zero new cases by 2030 we are on the path to getting very close.”
How is London tackling HIV?
The available data indicates that London is performing well against the 90-90-90 targets set by UNAIDS. I caught up with Jake March from Do It London – the London HIV Prevention Programme – to discuss some of the successes and remaining challenges in tackling the virus.
New diagnoses of HIV are dropping in London, and it seems like we’re maintaining the momentum of PrEP and U=U?
Overall, new diagnoses in London have been falling since 2015.
It’s encouraging that we seem to be seeing increased awareness and uptake of PrEP in London, combined with the high percentage of people who are diagnosed taking anti-retroviral treatment and becoming virally supressed.
All of this is underpinned by much greater increases in HIV testing, which we’ve seen for a number of years. Testing is the gateway to other prevention methods. You have to be confirmed HIV negative to take PrEP, or confirmed as HIV positive to receive anti-retroviral treatment so that you can become virally supressed and undetectable.
Of course, momentum is hard to measure, and there is always more work to be done to drive awareness of PrEP and U=U to the wider population.
It is important to note that the decrease in diagnoses actually predates the widespread availability of PrEP. We must always stress that combination prevention – regular testing, condom use, uptake of PrEP, and good care outcomes for people living with HIV – is the most effective way of preventing new transmissions.
The Do It London campaign is funded until 2022 – what happens after that?
The London HIV Prevention Programme – which is the project behind the public campaigning brand Do It London – was initially funded in April 2014, following the shift of public health responsibility from the NHS to local government.
Initial funding was for three years. The programme has since been successfully renewed twice by London Councils, most recently in 2019 until 2022. What’s clear is that there will still be a need beyond 2022 for an organised pan-London HIV prevention programme.
The Mayor of London, Sadiq Khan, has recently committed to maintaining “world-class health promotion across the city” through Do It London.
However, it’s understandably difficult to predict what the social, economic and political landscape will be like in future years. As a publicly funded programme, and especially in the period of unprecedented cuts to our public health budgets, we have to always ensure value for money, a focus on need and evidence-based service delivery.
Self-sampling and self-testing seems to have removed a lot of the known barriers to testing and early treatment. Are gay and bisexual men pretty much on top of things, or are there specific population groups in London that are still coming to grips with how to tackle HIV transmission?
The introduction of self-testing has indeed made getting tested more accessible, however, the accessibility of testing alone is not enough. Our campaign seeks to inform those most at risk, and the wider population, of the importance of regular testing alongside other preventative measures such as regular condom use, PrEP, and U=U. We’ve also been focused on promoting the many different ways to get tested.
Current trends are extremely positive, with overall new diagnoses decreasing 42% in London between 2015 and 2018. When we look at men who have sex with men, we’ve seen a 50% reduction over the same period.
But there are still groups in London who are disproportionately affect by HIV due to a number of factors, not least cultural and socio-economic, and for whom self-testing is not always the easiest option.
Anything that makes it easier and more convenient to test is a positive development, but we think it has to be matched with ongoing education and information about why someone should get tested in the first place – including for people who have never tested before. That’s why Do It London uses targeted channels to increase awareness of combination prevention with the intention of positively affecting behaviour change and ultimately reducing the incidence of HIV in the city. There is no room for complacency if we want to achieve the goal of ending new HIV infections by 2030.
Where are we at with PrEP? In England and Wales, access is still limited, whereas in some parts of the UK, and in other countries, it’s available through the health service. Is there any appetite for PrEP to be made available to everyone in England and Wales who would benefit from it?
PrEP is only available for free in England via the IMPACT Trial, which began two years ago and is set to end in October 2020. PrEP is also available in London for private purchase via the Dean Street PrEP Shop – for around £15 per month – and some people choose to buy it online, either for personal preference or because they don’t have a place on the trial.
Places on the trial were expanded last year. In April 2019, London councils agreed to expand the trial further, adding an extra 4000 places at a cost of £2.6m – at a time when our sexual health budgets are being cut by central government.
There is clearly appetite for PrEP to be made routinely available to everyone who needs it in England and Wales, but this has to be matched by full, long-term funding arrangements and, more broadly, for an increase in the public health grant that funds sexual health services.
Is the U=U message getting through? Are we seeing a decline in HIV stigma?
We added U=U to our prevention campaigns back in summer 2017, and it’s now become a central element of much public discourse around HIV, which is a brilliant and empowering development.
As with all public attitudes, it’s difficult to determine how deeply the message is getting through and how much it might have impacted on HIV-related stigma. It’s arguable that U=U has been better understood in the LGBTQ community than it is in wider society. But thanks to the powerful examples of people like Gareth Thomas and Jonathan Van Ness we have seen an increase in public discussions around what it means to be living with HIV, and about U=U.
Early next year, the People Living with HIV Stigma Survey will be published. This will provide a useful indication of how far we as a society have come from the previous survey, which measured the experience of living with HIV in the UK, in 2015. In addition to this, the National AIDS Trust are soon undertaking their own survey on public attitudes to HIV.
Where are we at with HIV?
Around the world, HIV remains a major health issue. According to UNAIDS – the agency that leads the work of the United Nations in this area – since the first cases of HIV were reported almost 40 years ago, 78 million people have contracted the virus, and 35 million people have died from AIDS-related illnesses.
The UN aims to end AIDS as a public health threat by 2030, but the challenge ahead remains considerable.
In 2013, UNAIDS led a consultation process to set specific goals to help make progress towards ending the public health threat of AIDS. This resulted in the 90-90-90 target, which all member countries of UNAIDS committed to achieving by the year 2020. What these targets mean is that by 2020:
- 90% of all people living with HIV will know their HIV status.
- 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy.
- 90% of all people receiving antiretroviral therapy will have viral suppression.
Despite advances in the effectiveness of prevention strategies, at the global level the rate of new infections has not materially decreased. In 2016, there were 1.8 million new HIV infections around the world. The aim of the UN is to bring that down to an annual level of 500,000 new infections by the year 2020.
UNAIDS has identified three interconnected reasons as to why some countries appear to not be making progress towards the 90-90-90 targets.
- Lack of political commitment and inadequate investment.
- Reluctance to address sensitive issues relating to the sexual needs of young people.
- Lack of systemic prevention implementation.
PrEP is changing the rules for gay men in relationships
A new study has found that the availability of PrEP has led gay couples to embrace a more relaxed approach to the relationship rules about casual sex.
Documenting the behaviour of gay men in Australia, the study found that 40% of PrEP users in relationships had agreements that allowed for bareback sex – sex without condoms – when having sex with casual partners outside of the relationship.
Additionally, the study found that a significant proportion (34%) of gay men who are in relationships that don’t allow for bareback sex are still doing it, confident that PrEP is protecting them against HIV.
Reporting on the study for NAM AIDSMAP, Krishen Samuel writes that ‘negotiated safety’ between HIV-negative men in open long-term relationships is a common practice. Negotiated safety refers to mitigating the risk of HIV and other STIs by the partners agreeing to only have bareback sex with each other but to use condoms when having sex outside the relationship. Research demonstrates that the increased protections offered by PrEP and U=U is leading to a decline in negotiated safety agreements as gay men are no longer solely relying on condoms to prevent the transmission of HIV.
Facebook enables spread of damaging misinformation about PrEP
As an advertising platform, Facebook is one of the world’s biggest players – it’s targeted advertising offers huge reach and highly sophisticated demographic segmentation.
The Guardian reports that one of the advertisers that has been taking advantage of Facebook’s advertising capabilities is a US law firm that is promoting medically incorrect information to LGBTQ people.
The misleading ads – which run on both Facebook and Instagram – focus on Truvada, the branded version of PrEP – an essential tool in preventing the acquisition of HIV.
Analysis by the Guardian reveals that the ads are being paid for by the law firm in what looks to be an attempt to build a product-liability lawsuit against the manufacturer of Truvada. The ads promote false claims regarding potential side-effects from taking Truvada. Further investigation by the Washington Post has confirmed that there are numerous such ads running across Facebook’s platform – targeting gay men who would benefit from taking PrEP.
In response, LGBTQ advocacy organisation GLAAD published an open letter – co-signed by over 50 prominent public health bodies – calling on Facebook to remove the misleading ads and to commit to “a review and potential update of current advertising policies to prevent false or misleading public health statements from reaching users”.
“If they’re going to continue profiting off harming public health, our community is going to call them out…” says Rich Ferraro, GLAAD’s chief communications officer. “As much as they support their LGBT employees, their platforms have become places where anti-LGBTQ organizations can do serious damage. Instead of trying to educate their audience, they are instead helping the spread of HIV by sitting idly by.”
What is PrEP?
PrEP stands for pre-exposure prophylaxis. PrEP is a tool that HIV-negative people can use to avoid acquiring HIV. Essentially, it’s taking medication that acts as a preventative to HIV infection.
It was in 2012 that the World Health Organisation endorsed the use of antiretroviral medication – which is used to treat someone who has HIV – as a pre-exposure prophylaxis to prevent people from acquiring the virus.
In simple terms, PrEP is medication that acts as a preventative to HIV.
Truvada was the brand that was first available for use as PrEP, but there are now generic versions of the medication also available.
”PrEP works for everyone, regardless of sexual or gender identity…” says activist Greg Owen, from #IWantPrEPNow . “Anyone who belongs to a group with high rates of HIV should think about using PrEP. Similarly, anyone who has sex with people who are from groups or countries with high rates of HIV might think about PrEP too. We know that HIV rates are highest among men who have sex with men, trans women, and Black African communities.”
“I started PrEP following an incident where I thought I may have contracted HIV…” explains Domino, of Porn4PrEP – he’s been taking PrEP since 2015. “It was difficult to obtain PrEP to begin with. Initially I was buying PrEP independently online. At that time, some close friends contracted HIV. I had information that could have prevented them contracting HIV, but I chose to keep how I was getting PrEP private out of fear that my own access would be taken away if more people knew. I’ve had to try and deal with that guilt. Since then, I’ve dedicated most of my time to PrEP advocacy and helping as many people as I can find ways to get it.”
When PrEP first became available, it was approved for use on the basis that it should be taken daily to ensure protection. However, the research now indicates that on-demand dosing is just as effective for anal sex.
How do I get PrEP?
The availability of PrEP will vary depending on where you are. Some countries have made PrEP available free-of-charge to people at risk of acquiring HIV, in other countries it is only available if you purchase it privately.
As a first step, speak with your doctor of sexual health service. They will be able to advise whether PrEP is available on prescription. If it’s not available through your health service, there are options available to purchase online.
“Worldwide, more than 400,000 people have started taking the pill via official channels, almost two-thirds of them in the United States…” explains Matthew Hodson of NAM Aidsmap. “It’s estimated that about the same number may have accessed PrEP via unofficial channels, particularly in China and Russia but also in the UK.”
”There are lots of reasons why people might delay taking PrEP or think they don’t need PrEP…” says Greg Owen. “But the biggest barrier to PrEP is always awareness of it, and then access to correct information and supportive friends, lovers, fuck-buddies, and clinic staff. People always worry about side effects, mainly at the beginning or just before they start taking PrEP. Some people might get an upset tummy or headaches or a little tiredness, but there are no ‘serious’ side effects from taking PrEP - either in the short-term and the long-term.”
“It takes a while for some people to see their body as a specialist machine, one that needs a specialist fuel…” adds Jason Domino. “Learning not to be ashamed of pills that you take has an impact on drug adherence. Adherence is also something that can be harder to tackle if taking PrEP is conflated with slut-shaming.”
“Something that would really help remove a barrier is free access to PrEP for all who need it…” suggests Greg Owen. “We need our governments to do that, and it really needs to be a global initiative.”
How effective is PrEP?
One of the news stories that got a fair bit of attention in recent months was the case of Steven Spencer – a 27-year-old man in Sydney who became the seventh person globally to contract HIV while taking PrEP – the pre-exposure medication that is designed to prevent you from acquiring HIV.
Spencer tested positive for HIV in December despite taking PrEP for five years, before and after sexual encounters in line with the guidance accepted by health experts.
Does the case of Steven Spencer mean that we need to question our reliance on PrEP as one of our main tools in the prevention of HIV transmission? The short answer is – no.
The CDC – Centers for Disease Control and Prevention in the US – advises that PrEP reduces the risk of acquiring HIV from a sexual encounter by more than 90%.
A major research project – the iPrEx Study – found that PrEP was up to 99% effective.
The San Francisco AIDS Foundation and the San Francisco Department of Public Health advise that PrEP provides 92%-99% reduction in HIV risk.
If we compare the effectiveness of PrEP versus condoms, research indicates that condoms are somewhere between 70%-92% effective in preventing the transmission of HIV – if they are used correctly and do not break. However, researchers have also found that condom use errors – breakage, slippage, or incomplete use – occur in up to 40% of sexual encounters.
“The reason that any instance of someone acquiring HIV while on PrEP is big news is because it’s so rare…” explains Matthew Hodson of NAM Aidsmap. “When someone who uses condoms acquires HIV it doesn’t make the news – it happens too often to be newsworthy.”
“Out of all of the hundreds of thousands of PrEP users we have only a handful of reports of the drug failing, some of which have more clear evidence than others…” confirms Matthew Hodson. “Cases such as Steven Spencer confirm that PrEP doesn’t provide 100 percent protection against HIV but the more we learn about the pill, the more we observe the impact it has as its use increases, the more confident we become of its effectiveness.”
What is On-Demand Dosing for PrEP?
In relation to PrEP, On-Demand or Event-Based Dosing means that instead of taking PrEP medication on a daily basis, you only need to take the PrEP medication before and after you have sex.
For example, if you’re going away on vacation and planning on having some fun, then you might want to take PrEP before and after the vacation, but then plan to come off the medication when you’re back in your usual routine or when your chances of acquiring HIV are lower.
The directions for on-demand PrEP dosing are:
- 2 pills taken between 2–24 hours before you have sex.
- 1 pill taken 24 hours after the first dose.
- 1 pill taken 48 hours after the first dose.
- If you continue to have sex after that first day, continue to take 1 pill per day until 48 hours after the last sexual event.
The research has shown that if you take PrEP before and after sex in this way, then this gives your body the same level of protection against HIV as if you had been continuously taking PrEP every day.
If you haven’t been able to follow the recommended dosage for the on-demand protocol, then you should seek medical advice and access PEP medication – PEP is post-exposure prophylaxis.
”As we get more data from additional studies, and use of PrEP outside of studies, it’s becoming increasingly clear that people who take PrEP daily are extremely unlikely to acquire HIV…” says Matthew Hodson. “There have only been a couple of cases where this appears to have happened out of hundreds of thousands of people who are using PrEP. We don’t yet have quite the same level of data to have the same confidence for on-demand dosing as we have for daily dosing, because fewer people have used PrEP this way, but the evidence so far suggests that it is effective.”
The research regarding On-Demand Dosing is from a major study in France, the results of which were presented at the International AIDS Conference in July 2018.
Undetectable = Untransmittable
Often referred to in the short-hand as U=U, what this means is that if someone has HIV but their medication has reduced their viral load to ‘undetectable’ levels, then they can’t transmit the virus to anyone else.
This is sometimes referred to as Treatment-as-Prevention, or TasP.
“Most people will become undetectable if they take their HIV treatment daily, as directed…” explains Matthew Hodson. “However it can take some time for people to get the levels of virus down to undetectable. Someone won’t be undetectable when they first begin HIV treatment. It’s also vital that an individual has maintained an undetectable viral load, which requires more than one undetectable result over a period of time for confidence.”
The importance of testing
Regular testing at your local sexual health service is important to ensure that you know your status regarding HIV, and that you’re keeping on top of any other Sexually Transmitted Infections – STIs – that you may be exposed to from time to time.
Testing is quick, easy, painless, and ensures that you’re fully equipped to keep yourself fit and healthy while enjoying an active sex life the way you want it.
How often should I get an STI test?
”If you’re sexually active you should get tested at least once a year, but if you have new sexual partners you should get tested more often than that…” advises sexual health professional Matthew Hodson. “If you’re involved in group or party scenes, it’s very easy to acquire and transmit STIs.”
“If you have condomless sex with multiple partners on a regular basis, you might consider monthly screens…” adds Hodson. “The more frequently you get tested, the faster you’ll be treated if you’ve picked up an STI. Frequent testing and early treatment can help to reduce the number of STIs circulating in our communities.”
Where can I get an STI test?
Here in London, there’s three ways in which you can get an STI test – all covered by the National Health Service, the NHS.
1. Your local doctor – often referred to as your General Practitioner, or your GP – can complete the full range of STI testing for you.
2. Specialist sexual health clinics are a great resource. You can find the full list of sexual health clinics in the area here. A good starting point is 56 Dean Street, in Soho.
3. Home test kits are available free of charge and are an easy way to test yourself. The kit is posted to you, you take the samples required, send it back via the post, then a few days later you get a text with the results.
What happens at an STI test?
Whether you’re being tested by a health professional, or doing the testing yourself, samples from your body need to be collected so that they can be tested for infection.
What you’ll need to provide is:
- a urine sample
- a blood sample
- swabs from the urethra of your penis
- swabs from your anus
You might find this whole process a bit awkward and a bit embarrassing, but it doesn’t hurt and the more frequently you do it the easier it gets.
What happens if I test positive for an STI?
There’s no need to panic. STIs can be easily treated and managed. The health professional who’s testing you will be able to advise about what steps you need to take if you return any positive results.
The earlier that any STIs are detected, the easier it is to treat them, and the easier it is to ensure that you’re not transmitting STIs to anyone else.
The charity leader – Ian Green
You’ve built your career through roles in the community, health, and charity sector. What’s drawn you to these types of roles?
I was drawn to the role at Terrence Higgins Trust because it gave me the chance to have an impact on the lives of others like myself who are living with HIV.
From a very early age, I knew I wanted to do something that was going to ultimately change lives. My passion to help impact the lives of others came from my grandparents who were adamant about giving back to the community you’re a part of, which is ultimately how I ended up developing my career in the charity sector.
In order to progress to leadership roles in these types of organisations, do you need any training or qualifications, or are they the types of roles that you can learn on the job?
Before being appointed to this role at Terrence Higgins Trust, I had 25 years’ experience of high-profile leadership roles in the voluntary, health, local government, housing, and social care sectors. This experience undoubtedly helps me to fulfil my duties as CEO.
I think it depends on the individual and what qualifications the organisation is looking for, as there are specific roles where it really does help for you to have some sort of qualifications.
How did you land your first job in this sector?
I first started my career in the charity sector working for the YMCA. I got offered a part-time role, which then turned into a full-time role after I left university. As a charity, we were responsible — amongst other things — for providing housing for homeless young people. I spent the majority of my career at YMCA, and I wouldn’t have had it any other way.
Now, I’m doing some of the most fulfilling work of my career at Terrence Higgins Trust as we work to end the HIV epidemic in the UK, to promote the message that those on effective HIV treatment can’t pass the virus on, and campaign to ensure access to PrEP for all who need it wherever they are in the UK.
What are some of the skills or attributes that you need to be successful in roles in this sector?
You need to be hard-working, passionate, and able to work efficiently in a team. From my experience, the charity sector in particular is not one for people who prefer working independently. There are lots of opportunities in the charity sector for collaborations and partnership work, which require effective team work. For example, we regularly collaborate with other HIV organisations including National AIDS Trust and NAM-AIDSMap.
In addition to this, you need to have an alignment to the cause. You need to be motivated and passionate about the work of the organisation and the work they deliver to their communities. For example, I have a passion to better the lives of people living with HIV because, as a gay man, I belong to one of the groups that are mostly affected by HIV in the UK with over half of new diagnoses still among gay and bi men. But I’m passionate about ending new HIV transmissions across all groups and improving everyone’s sexual health.
Never underestimate the power of passion to get you up at 5:30 AM to get to work. I have such a strong connection to the work I do at Terrence Higgins Trust because I recognise how important it is.
If someone wanted to explore a career in this sector, what advice or guidance would you give them?
They say the harder you work, the luckier you get — but there definitely is an element of luck to anything that happens and there’s no one way to get to where you want to go. Volunteering and demonstrating your commitment to a cause or range of causes is a good starter, and we have lots of interesting roles at Terrence Higgins Trust – including mentoring on our Work Positive program, which supports people living with HIV who are unemployed back to the workplace through mentoring, training, and supportive placements.
What are some of your goals and aspirations for the months ahead?
Ultimately, our overall goal as a charity is to live in a world where people with HIV live healthy lives free from prejudice and discrimination, and good sexual health is a right and reality for all. We work hard to achieve that goal each and every day.
The health improvement professional – Phil Samba
I caught up with social activist Phil Samba to talk HIV, PrEP, and careers.
When did you start to explore a career in health improvement?
I always had an interest in sexual health, which started from the very first time I got tested for STIs and HIV. I thought that as a gay Black African man who had recently become sexually active, it was incredibly important information for me to know. I became quite knowledgeable about sexual health and my friends would often come to me for advice.
I met my mentor Marc Thompson at Black Pride – he was doing outreach for the independent organisation he co-founded, Prepster, which aims to educate and agitate for PrEP access in England and beyond. Marc was giving out condoms, as I was leaving to see The Weeknd headline at Wireless Festival. He stopped me to talk about PrEP – I’d been following the NHS and the government discussing PrEP from 2016, so I was interested in the work being done. He invited me to a screening and discussion of their film PrEP 17 - The coming of age of PrEP.
I then went with Marc to the very first meeting with GMFA to discuss what became Me.Him.Us. – a campaign specifically targeted at black men to motivate them to regularly get tested for STIs and HIV. I co-developed and appeared in the campaign – we wanted it to represent different Black men.
It was during the development meetings for the Me.Him.Us. campaign that I realised that I was in a very unique position to work in HIV and sexual health. I went to an all-boys Catholic school in East London, where the majority of my friends were Black straight men – guys that I’m still friends with. Plus I now have a group of Black gay friends that I’m very close to, I thought that I could understand how both openly and closeted black gay and bisexual men would think and what would work best for them.
The other benefits I had were that communicate openly, I talk quite candidly about my sex life and my sexual health, and I’m willing to put myself out there – I know the importance of honest, accurate visibility and representation.
Following the Me.Him.Us campaign, I started writing to share my narrative as a gay Black man in London, I started being involved with Prepster’s discussion panels, and I started using my social media to advocate for PrEP.
Within four months of activism and campaigning, I managed to land my first job in the HIV and sexual health sector.
What would success look like in terms of PrEP in the England?
I’ve always wanted PrEP to be available on the NHS in England, especially since Scotland and Wales provide it through the NHS. We’re very lucky to have free healthcare in the UK, but what good is that if it’s not doing everything in its power to protect those who are vulnerable and can benefit by taking PrEP?
The NHS are currently running a trial in England to find out how many people attending sexual health services need PrEP, how many of them will start taking it, and how long they will need it for. We already know which people are disproportionately affected by HIV and need it the most, but there have been limited efforts to engage these populations.
The advocacy around PrEP was always very important to me, but since returning from the International AIDS Conference in Amsterdam it’s now at the very top of my agenda. I saw so many young activists from South Africa, Kenya, Uganda, and other countries around the world where there’s still so much more stigma surrounding homosexuality and with living with HIV then there is here. The NHS should be getting done what needs to be done to set an example for other countries. If a country like England – a country that is accepting, progressive, and has free healthcare - can’t get it together, then how do we expect the poorer countries to have access?
For me, success in terms of PrEP in England would be targeted awareness being raised, and an availability for anyone and everyone who needs it.
With the combined forces of effective HIV treatment and PrEP, has the battle against HIV been won?
Combination prevention – testing, condoms, treatment, and PrEP - have been incredible in reducing new rates of HIV, however according to 2017 UNAIDS data, an estimated 36.7 million people are living with HIV, and approximately 30 percent of these people don’t even know they have the virus.
Survey evidence from academic research that was published recently found that among men who have sex with men in England, HIV prevalence continues to be higher among Black men compared to white British men, with Black men remaining significantly more likely to report diagnosis with HIV in the last 12 months than white British men. There was also a significant year-on-year increase in new UK HIV diagnoses among Black African men for over a decade. Black Africans in the UK are also more likely to be diagnosed late with advanced HIV because either they don’t test regularly enough or at all - this means that by the time that they’re diagnosed, their immune systems are already badly damaged. In 2014, Public Health England reported that Black British MSM are 15-times more likely to be HIV-positive than the general population.
Although we’ve made monumental changes, the battle against HIV is far from being won. People from certain groups such as sex workers, trans men who have sex with men, trans women, Black men who have sex with men, and Black African heterosexual men and women are still disproportionately affected by HIV.
What are some of the other health issues that the LGBTQ community should also be focusing on?
Mental health - it goes hand in hand with sexual health. I can say from my own experiences, that poor mental health can lead to poor sexual health.
Substance abuse should also be focused on. Men who have sex with men are twice as likely to be dependent on alcohol compared with the rest of the male population, and smoking rates are higher. Public Health England’s research on smoking concludes that just 20 percent of heterosexual men smoke, compared to 25 percent of gay men, 26 percent of bisexual men, and 21 percent of other men who have sex with men. Chemsex is on the rise and carries serious physical and mental health risks, including the spread of blood-borne infections and viruses. There needs to be so much more research when it comes to chemsex.
What are some of the skills and attributes that you need to build a successful career in health improvement?
Some of the work that I’m currently doing is brand new. I wouldn’t be able to do a lot of what I do if it wasn’t for my social media for example – it’s an amazing way to interact and engage with men of colour, and get them interested in their sexual health, as well as being good for targeted digital advertising.
I use Twitter and Instagram especially – I post about my discussion panels, getting tested, receiving PrEP, and where to get self-testing HIV kits. I put myself out there in order for others like me to relate to me, and I use what we learn to encourage others to take care of their sexual health. I think that there needs to be more young, gay Black African men who are willing to put themselves out there in order for there to be more honest, accurate visibility and representation, and to get others interested in sexual health.
Phil Wilson, founder and CEO of The Black Aids Institute said: “When you offer PrEP to Black people and the people who are offering the services are Black, the people doing the outreach are Black, and the messages that are being created are created by Black people – Black people are interested.”
The activist – Greg Owen
Although the story of PrEP availability in the UK is still being written, one of the central characters who is driving the narrative is activist Greg Owen.
In October 2015, Greg Owen and Alex Craddock co-founded I Want PrEP Now. Greg is now working with health charity Terrence Higgins Trust to maximise access to the medication that has been demonstrated to prevent the transmission of HIV.
I caught up with Greg to talk about how Terrence Higgins Trust is helping people to access PrEP.
How does THT’s PrEP access program work?
This is something that we’ve been talking about since 2016. We’ve been looking at various ways that THT could consolidate and expand on the work that we’d begun with I Want PrEP Now as well as increase access to PrEP. Additionally, the slow response by the National Health Service in England left everyone feeling that THT had no choice but to step in and help increase access to PrEP for those who needed it most.
THT have allocated a substantial amount of funding to help people access PrEP directly from the supplier.
The way that it works is that anyone in England and Northern Ireland who wants access to PrEP can go to THT’s website, and complete some personal information to determine clinical and financial eligibility. Their application will be assessed, if they’re approved they’ll be given a voucher code that they’ll be able to enter when ordering PrEP from the supplier. People being supported by THT will be able to access PrEP at no cost.
What are the eligibility requirements that people need to meet in order to be approved to be part of the THT program?
The program is open to anyone over the age of 16 who is at risk of contracting HIV. What we want to do is to ensure that PrEP is reaching people who we know would benefit but currently aren’t benefiting from the protection that PrEP offers. In some cases that’s people who are facing a financial barrier, in other cases it’s cultural – quite often it’s both financial and cultural.
What are the current costs of providing PrEP to people?
In the UK, the price when we launched I Want PrEP Now was £150 per person for a three-month supply. That’s been reduced to £60 per person for a three-month supply.
This fund from THT is specifically for people on low-income or who have no income. If your income level means that you won’t be eligible for support from THT, but you feel that you’d benefit from its protection, I’d encourage you to buy it yourself. PrEP is available, we know it works.
How sustainable is the program being funded by THT?
It’s not sustainable – it’s outrageous that a charity has felt compelled to make this kind of intervention, and we expect demand for this program to be very high. Because it’s not sustainable is exactly why we’re continuing to put pressure on NHS England via every available channel to urgently make PrEP available to all who need it.
In order to reach everyone that would benefit from it, PrEP needs to be integrated into other health services and other points of care. We also have a lot of work to do to educate health professionals about PrEP.
What keeps you motivated to campaign about PrEP?
I’m still motivated to keep pushing. It’s like the first day of school for me every day.
I miss the virtual clinic that I was running during the early stages of I Want PrEP Now. It was very emotional, it was very real – you could see the difference you were making.
My role now is very fluid, but I feel as if I’ve found my feet at THT. We speak a lot with other activists and organisations globally. I seem to have been elevated to the position of elder PrEPster.
What’s weird is when people come up to me to say thank you, or send me photos of them watching me on TV. I never know what to say when people say thank you for helping them access PrEP. I need to try and not be so awkward.
Dating has been a bit of a struggle. There’s something about the work that I do, plus my visibility as a PrEP advocate and someone who lives very openly with HIV, that makes things complicated with the internal issues that guys are struggling with – whatever their status.
At the beginning, the only thing that I knew, the only thing I had was myself, my story. Subsequently, I’ve struggled to separate my identity from the PrEP campaign. I got lost a little, I didn’t look after myself so well, but I’ve been working on that.
The researcher – Chase Ledin
I caught up with Chase Ledin to talk about his research into HIV and AIDS.
What drew you to the study of HIV in the UK and US?
I come in contact with HIV every day – when I log onto dating apps, when I talk queer theory with my colleagues, and when I explain the historical trends of sexual health, wellness, and queer culture to my students. Though I am seronegative, I’m asked to negotiate behaviours within the realm of serosorting.
I came out in a time period distinctly after the first-wave HIV epidemic. This period has saturated most spheres of my life with the message that HIV is treatable. This narrative is part of my shared-community history of queer kinship – it’s uniquely removed from the devastation of the ‘lost’ generation.
My inquiries started with undergraduate studies exploring queer literary history, especially invested in MSM socioeconomic histories, their queer community histories, and their sexual encounters before and during the first-wave epidemic. I was drawn into HIV studies when exposed to the works of Sarah Schulman, Tim Dean, Samuel R. Delany, Christopher Castiglia, and Christopher Reed. These scholars expressed concern about an ideological shift of social contact and the subsequent ‘gentrification’ – alteration, forgetting, erasure, departure - of queer history.
Introducing deeply unnerving case studies about perceptions of the HIV epidemic, many of these authors responded to public discourses constructing the AIDS epidemic as an ‘isolating event’ that estranged social practices and altered localities within queer history – such as bathhouses, sex clubs, bars, literary salons, and queer camping. I found myself attracted to the arguments because they pointed at a social juncture and existential dread that many gay men experience even today – the legacy of HIV and its perpetual complication of queer life.
I probed the archive for specific examples of ‘departure’ in queer history during my master’s coursework. I was drawn to the work of Andrew Sullivan – especially his 1996 article in The New York Times, When Plagues End. Sullivan spoke of a rupture within the primary AIDS narrative. He most likely sought to construct a departure of medical categories – HIV/AIDS – providing unique foresight to the ‘end of AIDS’ as a widespread and deadly disease which could be replaced by the chronic wonders of anti-retroviral therapies. Instead, his article was received as a premature and swift departure from the memorialisation that hung over US and UK communities. Sullivan’s proclamation permeated cultural discourses about HIV. His work colluded with larger structural changes, such as international efforts to provide HIV medicine to countries in Africa, and allowed for a larger dismantling of the AIDS=Death narrative.
My professional and doctoral work looks closely at the changes in queer health and period immediately following the epidemic – 1996–2012. Part of contemporary thinking about the epidemic and continued transmission relates to a narrative that says young queers ‘lack’ empathy. Whether or not this is true, this mode of thinking says that the HIV epidemic at large derives its power from insufficient standardised settings – such as education systems, and accessible and appropriate forms of queer consumerism.
The ‘lack’ of queer-initiated and sub-cultural norms - as LGBTQ folk are mainstreamed - is the absence of queer-specific tactics for managing sexual, emotional, and mental health, instead directing individuals to private, corporate, or national entities that manage queer care ‘outside’ of the queer sphere. An important other narrative within this mode of thinking suggests that the ‘lack’ within the ‘post-AIDS period - after 1996 – is an inability to speak candidly about the devastation and the unwillingness to signify sexual practices largely at play during the epidemic period. As this public narrative suggests, HIV and STIs can be managed and suppressed by highly-effective contemporary medicine – the urgency to tackle issues of gonorrhoea, syphilis, and chronic HIV is reserved for specialists, and community members are free to focus on social issues and developing a new status quo.
The ‘lack’ or ‘gap’ in historical empathy is sometimes mistakenly written in popular media as a wilful rejection of queer history and the differentiation of queer generations. The ‘gap’ in empathy for queers who do not have direct access to mentors who maintain oral histories before, during, and after the epidemic is not a fault of their own but a larger systemic ‘lack’ that can’t be solved by establishing a narrative of generational difference. In order to understand how we can resolve the ‘epidemic pain’ endemic to generational difference, and how we can provide a foundation of care within digitally-facilitated sexual interactions, we need to uncover how the epidemic has positively impacted queer contact in the twenty-first century and how queer markets can expand to better educate queer demographics.
My research analyses how this epidemic event, and its subsequent waves in the US and UK, continues to serve as an underlying informant that threads every booming neo-liberal sexual market. Every market item, including PEP, PrEP, and advanced sexual devices, is informed by the ‘epidemic pain’ turned into possibility for an easier sexual, social, romantic, and cultural life for queers. Sexual markets are saturated by viral discourses. Forgetting the pain of the epidemic period is not erasing the agentic and forward-thinking tactics of those brave ACT UP and Queer Nation activists, and does not remove the virus from our queer realities. Instead, these markets integrate the ‘pain’ from lessons learned and enable the proliferation of systemic change, even when such change cannot be reflected in each queer individual.
Is it important that young gay guys, who are beginning to learn about sex in the era of PrEP, have an understanding of what the medical and social history of HIV has been?
Young queers have an obligation to learn about viral history because it pertains to their sexual well-being, and because queer history provides extensive examples and opportunities for developing empathy and experiencing psychological ‘likeness.’ Both sexual well-being and empathy help to build a healthy queer individual.
Learning about the extent of the devastation is not necessary in as much as understanding the social and cultural tactics for confronting a ‘plague’ that was denigrated to gay men. When we learn from positive reactions to negative situations - such as ACT UP’s activism against the CDC ignoring requests for rapid anti-retroviral approval – we inculcate tactics to develop queer community.
Perhaps the number-one reason why generational tensions emerge is failure to engage with others’ life experiences.
When handed an opportunity to reflect upon the past, especially a sexual past arguably all queers share, young queers should, in the least, cultivate a critical awareness of physical, psychological, and ideological barriers rampant during the 1980s and 1990s that, perhaps more covertly, continue to thrive today.
In the least, young queers must learn that HIV doesn’t discriminate based on sexual orientation. Young queers should integrate sexual history into their daily lives especially because serosorting and HIV stigma are common practices within the queer community. Stigma is derived from lack of social and medical contexts in addition to cultural and historical contexts. One systemic solution to HIV stigma emerges from the standardisation of queer life in educational settings, providing plain-fact science in addition to multiple cultural contexts for queer life across human existence.
Even if young queers are to integrate this information from outside of institutions, they must, in the least, learn communication methods for introducing, analysing, and ‘unpacking’ these big ideas with their friends and partners.
Young queers hardly ever have opportunities to critically respond to queer messaging, especially since they’re not taught anything significant about queer life in standardised educational settings – and especially because queer adult life rarely mandates the exchange of ideas between experienced and inexperienced queers.
The myth of the ‘gay disease,’ for example, is substantiated by skewed numbers – queers who align with such a theory must continue to explore the vast archive of HIV and queer history to understand that queer life is not defined by a ‘gay’ disease. Importantly, by accessing these resources, young queers can build safe and respectful communities having learned from those who have come before them.
Is there a unified and consistent queer narrative regarding the experience of gay men with HIV and AIDS, or are there competing narratives?
There are competing narratives and will always be competing narratives regarding HIV. Today’s increasingly popular narrative is U=U, or undetectable equals untransmittable, which emerged in recent years. We also continue to have narratives that find their roots in the first-wave epidemic, such as serosorting. Serosorting is a common practice for many queer men. Many use serosorting to reject seropositive partners as a prevention tactic. Naturally, the problem created by this social narrative of exclusion, in order to prevent, ignores science and begs an updated understanding of HIV transmission and safer-sex tactics.
The community leader – Ian Howley
Ian Howley is the Chief Executive of HERO – Health Equality and Rights Organisation. HERO is the power behind GMFA – the gay men’s health project, FS magazine and OutLife.
When did you start to explore a career in health promotion?
It sort of happened by accident. It was never really my intention – I wanted to become a graphic designer and do creative work.
In 2005, during my first year in Letterkenny IT in Donegal, Ireland, I tried to get involved with the LGBTQ Society. When I asked the Student Union about it, they informed me that there was no LGBTQ Society. I had previous experience being part of a society in my home town of Athlone, and I knew what benefits it could bring to LGBTQ people in the college at the time. I felt that I was the right person to lead on this, and in November of that year we held our first meeting. It was attended by six people and we set out our aims for the society. It was agreed that we should use our presence to try and make people aware of LGBTQ rights in the college.
Within the first month something happened which change the course of my life. In early December of that year, a young man was attacked outside a gay bar in Derry. The local newspaper at the time, the Letterkenny Post, reported about the attack. One of the many issues that was highlighted was the lack of safe spaces for LGBTQ people in Donegal. While reading this I felt that there was something I could do. We were lucky that the college at the time allowed non-students to be involved in clubs and societies, so I contacted the newspaper to see whether they would like to run a piece about the society so that local LGBTQ people would know that we were there.
In December 2005, they ran a full-page spread about the society and had a full image of myself. This was a very brave thing to do in a small town like Letterkenny. The idea of being so open about your sexuality shocked people. However, one person who saw the article was a man called Ruairi McKiernan, the founder of SpunOut – a national youth website that was based in Donegal. Ruairi got in contact with me to see if I’d like to get involved in SpunOut. After doing some research into what SpunOut was all about, I said yes.
In January of 2006, Ruairi asked me if I knew anyone who was willing to talk on camera about their experience with suicide. What no one at the time knew was that I had tried to take my life three times as a teenager because of my battle with my sexuality. I was 16 years old at my last attempt, and five years had passed since then. I felt this was the right opportunity for me to finally talk about it. I told him I’d be interested to talk about my experiences, thinking that it was something only a handful of people would see. About two months after filming, the piece was shown at a national suicide prevention conference, which was attended by the then President of Ireland.
The reception it received opened some doors, and I was asked to speak at a mental health conference in Dublin a few months later. The conference was reported on by RTE at the time, and they interviewed me for the evening news. This was a major thing for anyone at the time to do. To stand in front of the whole nation and be open about something that is still to this day highly stigmatised was unheard of. People who talked about trying to take their lives were seen as crazy or messed up. But here was this 22-year-old man talking about it in a very calm and reasonable way. It broke new ground.
Within a few days, I had enquiries from media outlets looking to interview me, and media companies wanting to involve me in documentaries. Over the following year I probably spoke to the whole nation about what it was like to a teenager looking for a way out.
In late 2006, I got asked if I’d like to be in a TV commercial which was going to be funded by the National Office for Suicide Prevention. At this stage I was full of confidence and agreed. In June 2007, the advert was launched on Irish TV – a first of its kind. During the launch, I became the spokesperson for the campaign. It was estimated that I spoke to over two million people in one day.
Looking back now, this was when I knew that I wanted to get involved in health promotion and not be a graphic designer. I still had to go back to college the following September and finish my final year. During that final year, I took every opportunity to volunteer for SpunOut in every way I could. I attended talks, meetings, conferences, organisation development days. I wanted to gain as much experience as possible in the hope that it would lead to some sort of opportunity. My plan was that if no opportunity arose by the end of my final year in college, I’d see if it was possible to look at health promotion courses.
How did you land your first health promotion job?
SpunOut was awarded a grant to run a six-month outreach programme in the North West of Ireland called Get SpunOut. The job was due to start two weeks after I finished college. I applied for the position and, because of the experience I’d built over the previous three years, I was offered the position. In June 2008, I became a freelance project worker for SpunOut, looking to promote the website to young people in Donegal, Leitrim, and Sligo. The project lasted six months and was – to this day – the most challenging piece of work I’ve ever experienced.
My job was to go into schools and colleges to talk about mental health and suicide from a personal perspective, and about how SpunOut could help people. I wasn’t ready for the emotional roller-coaster it would be. I had one school where a student had died by suicide a few weeks before my presentation, but the school didn’t inform me until that day. As soon as I started talking about my own journey, the whole class started to cry. It was a difficult position to be in, but we got through it and, by the end of the session, I had lots of emotional young people coming up to hug and thank me for being there. At another school I went to, I felt like I was speaking to a wall – the young people showed no emotion at all and I left feeling drained. Later that evening, I received an email from one of the young people who attended to say that I had saved her life – she had been planning on taking her own life but my story inspired her to keep fighting.
At the end of the six months, I’d been emotionally wiped out but it made me realise that my calling in life was to make a difference. SpunOut saw the value in me and decided to keep me on. I made sure that I worked my butt off and made myself indispensable. I took on every role, responsibility, and task I could think of. Even when my manager didn’t ask for projects to be done, I did them. I knew that at any time SpunOut could no longer be in a position to continue on supporting me, and I wanted to gain as much experience as I could. I ended up turning a six-month contract into two years, and helped the organisation go from a regional set-up to a national organisation. We even won a digital media award for a project I ran that was aimed at supporting young LGBTQ people in rural communities. However, in June 2010, after the recession took its toll on the Irish non-profit sector, my time with SpunOut had to come to an end.
I began to look around at other organisations in Ireland, but couldn’t find one that I knew I’d be happy to work for. There was nothing like SpunOut, and I felt that if I was to find something like that I’d have to look elsewhere. At the time, my father was living in London, so I looked at jobs here. The first job I looked at was a position of Associate Editor and Communication Officer for GMFA, a gay men’s health organisation. After looking into what GMFA was trying to do, I felt it was a good step forward for me, and I got to work with LGBTQ people which was a major bonus. In August 2010, I began work with GMFA helping to produce FS magazine and build up GMFA’s social media. My plan was to stay at this for a year and then to try and move back to Ireland. That didn’t happen.
In October of 2011, the then Editor for FS moved on and I was appointed Editor. My main aim with FS was to move forward with the times and I wanted FS to create the news, not just tell it. It took about eight months to get my vision in place, but once I had a plan I was able to create a change in FS that was welcomed in the community. During my time as Editor for FS magazine, I’ve seen it go from being a magazine that people thought was nice, to an internationally recognised publication that’s not afraid to tackle the harder issues on the gay scene.
We broke new ground in 2013 with the sexual racism issue. Our Drug Fucked issue looked at chemsex for the first time. In our Bareback Britain issue we asked gay men why they prefer not to use condoms. These were all pre-PrEP times. We focused on harder issues way before others.
My proudest moment as Editor for FS came with the racism on the gay scene issue in 2015. We surveyed over 850 BME gay and bisexual men and found that that about 70 percent experienced some form of racism from within the gay scene. This may not be shocking to hear this now, but in 2015 we lived in a pre-woke society. Black Lives Matter was still fresh, and topics around BME health and social inequalities weren’t focused on. That issue exploded and gained coverage from around the world. It opened up conversations I’d never seen people talk about before. That’s when I knew that FS had reached its full potential.
Then in 2016, after six years with GMFA, the then-CEO Matthew Hodson decided to move on, and the board of the Health Equality and Rights Organisation - the parent of GMFA and FS – asked me to take over. I won’t lie to you, it came a little early in my career plan. Being a CEO at age 32 wasn’t something that I’d envisioned. But just like with SpunOut, I took the opportunity and went for it. I’ve been CEO of HERO since then, and in my time I’ve overseen some challenging times. I’ve been working to move us forward into a modern world where we work towards tackling health and social inequalities for LGBTQ people.
Throughout its history, GMFA has focused on HIV prevention and tackling HIV stigma. In 1992, people were dying from the virus – today, people can live a near-to-normal life. That’s extraordinary, and we’re really proud of GMFA’s involvement in making that happen. GMFA has saved lives. But we must move forward. It’s not good enough to be at a point where HIV is manageable. It’s time to end it.
It’s also time for us as a community to focus on other inequalities that may have been lost over the decades while we were fighting HIV and AIDS. LGBTQ people are up to seven times more likely to experience suicidal thoughts, with one in four or those people trying to take their own lives. We’re also more likely to drink more, do more drugs and for longer, and have mental illness issues such as anxiety and depression. The list goes on and on. That’s what I want to do with my time here at HERO. I want us to fight all the health and social inequalities that we as a community face - we are not equal until we have equal health.
Was the reality of working in health promotion what you were expecting?
I knew that it would be difficult at times. No one should get into this sector if you’re trying to make money. It’s not for people who have that aim. It’s for people who want to make a difference and to give back. You can make a nice living in this sector, but it’s not where you’d be in the commercial world – that’s something you have to be okay with.
What are some of the challenges of working in the community health sector?
Money. If you ask any health organisation, they’ll say money. There’s never enough, and you’re always fighting for it. It’s wonderful that HERO has a great connection with our community, and the fundraising we do through GMFA – such as World AIDS Day and RVT Sports Day - allows us to continue to support our community. Without that community support we would be dead and buried.
One thing I wasn’t expecting was the competition between organisations for money. You have a lot of organisations bidding for the same pots of money. It brings in a competition level that shouldn’t be there. But it’s the system we all have to deal with. At HERO, we’re part of the LGB&T Partnership, the LGBT Consortium, and we’re part of the Rise Partnership, which is funded from Lambeth, Southwick and Lewisham Councils, and we do great work together. But I often think – What if those barriers of competition for funds didn’t exist? What could we achieve together? Hopefully, some day, we’ll find out.
With the combined forces of U=U and PrEP, has the battle against HIV been won?
Absolutely not. We have come a long way since the early 1980s – a time when HIV was a death sentence. To think that someone who is living with HIV and on effective medication can’t pass on the virus would have been some unicorn fantasy back in the 80s. Now we have a game-changer in PrEP, which is proving to be extremely effective in stopping new HIV infections. But we can’t get complacent. There’s still a long way to go - until we have zero new infections we won’t stop.
One of the areas we need to focus on is the U=U movement. Undetectable = Untransmittable is a term we in the sector have got behind – it means that someone who has an undetectable viral load can’t pass on the virus. There are two issues with this. The first is that there are still a huge amount of people out there who don’t believe this to be true. Even though we have all the evidence to prove it, lots of gay men don’t believe it. How do you overcome that?
The second issue is the term U=U. It’s a medical term that means nothing to the average Joe on the street. You can say what it means and people may nod, but they still don’t get it. In the UK, we have people from all different backgrounds of education levels, demographics, and countries. Try explaining U=U to a Brazilian man, new to London, with poor English. We need to figure a way to simplify it, make it less medical, so gay men from all backgrounds can understand it. As I tell my colleagues, if a 12-year-old can’t understand your health promotion message then you have failed.
When it comes to PrEP, we know it works and there are thousands of gay men on PrEP – whether it’s through the Impact trial or that they’re self-funding it. But in England it’s not free for all - this will mean it will take longer for us to get to zero new infections. Until we have PrEP free for all those who need it, then we still need to fight on.
For decades, gay and bisexual men have lived in a world where there has always been consequences attached to the sex that we have. There’s always a risk. Having that hang over your head brings guilt, shame, and leads to sexual and emotional issues. If someone want to use PrEP to have guilt-free sex, then let them. Don’t guilt them into ‘remembering where they came from.’ We, as a community, must never forget but we must live for a happier future. If PrEP allows gay and bisexual men to experience sex like many heterosexual men do, then that’s something to celebrate.
As for the battle against HIV, we health organisations need to continue to work towards zero new infections, to tackle HIV stigma and its impact on our health, and work towards a happier and healthier LGBTQ community.
What are some of the other health issues that the LGBTQ community should also be focusing on?
Mental health and suicide. There’s a silent epidemic happening in our community and we’re barely touching on it. There are large numbers of LGBTQ people dying by suicide, but it’s rarely in our top three conversations. Why? Because when it comes to mental health issues and suicide, this is something most of us have experienced. It’s common in our community – that’s shocking in itself. It’s come to the point where being a suicide survivor - whether thinking about it or acting on it - is a rite of passage into adult LGBTQ life. When we do have conversations around suicide, it’s likely that someone will say – Me too.
Right now, we live in a system that doesn’t put focus on mental health and suicide in our community. There’s no anger at the fact our LGBTQ brothers and sisters are killing themselves – we need to get angry. If LGBTQ activism has taught us anything, it’s that change for LGBTQ people doesn’t come unless we get angry. As someone who’s gone through that battle and is lucky to be alive today, I’m angry that our community is being left behind when it comes to suicide prevention.
This is why at HERO we’re focusing on mental health and suicide prevention. Our health and life advice site for LGBTQ people is called OutLife. OutLife focuses on creating conversations around mental illness, which de-stigmatises the issues, while developing national suicide prevention campaigns that are by LGBTQ people, for LGBTQ people. We also offer peer-support forums where LGBTQ people from all around the UK can talk to each other about their issues, and seek support when needed. It’s time to end unnecessary deaths in our community – I’m adamant that we can do this through OutLife.
What are some of the skills and attributes that you need to build a successful career in health promotion?
The most important is to care. Don’t come into this sector if you want to make money. Yes you can have a nice comfortable life but if your primary concern is how much you make, then this is not the sector for you. Making a difference, caring about others, and doing thankless work is all part of health promotion.
As for hard skills, the sector needs people who are digital focused, creative, and think outside the box. We’re heading into a difficult era with Brexit. We might see organisations shrink, or even close if the money that we rely on disappears. Being creative and digital-savvy will help any organisation who needs to save money. It may keep you in a job.
If someone was considering a career in health promotion, what advice or guidance would you give them?
This sector is difficult to get into. So, volunteer, volunteer, volunteer - in any way you can. It will help you build up skills and knowledge of the sector so when an opportunity arises, then you have some experience that might help you get you through the door.
If you’re lucky to get into this sector, then make yourself indispensable. When I joined SpunOut, I took on roles and tasks that I wasn’t supposed to. But because I took control, I managed to turn a six-month contract into two years. If you see an opportunity, take it – even if you’re not being paid to do it. Work for the position that you want, not the position you have. It will mean you will build skills, and your organisation will rely on you. If it doesn’t work out then you know that it’s nothing to do with your performance, and you’ve built natural skills that will see you into your next job.
Finally, show that you care. The non-profit sector is tough at times, but the last thing any manager wants to see is someone who’s only there for a pay cheque. Thousands would love to do your job. If you’re lucky enough to get into the sector, make it a success.
One of the most impressive health promotion campaigns in recent years has been GMFA’s HIV testing campaign – Me. Him. Us.
The campaign, which was developed by and for black gay and bisexual men, appeared on billboards and on digital advertising hubs across London.
First launched in March 2018, the Me. Him. Us. campaign focuses on community, representation, and home-testing for HIV.
GMFA brought together 17 young black gay men to lead in the latest iteration of the campaign and to effect a positive change in their community, as well as making sure that black gay men are properly represented in sexual health campaigns.
“The reason I took part in Me. Him. Us. again was to build on last year’s success…” explained Marc Thompson, Co-Editor of BlackoutUK. “The first Me. Him. Us. campaign focused on the role of the individual, but with the new campaign we have a larger group of men, so it was really about stressing the importance of community involvement and how we can all play a part in ending HIV.”
“The day of the photo shoot was powerful and moving…” added Thompson. “We had 17 black gay men who came together to make a difference in their community. They wanted to make sure that their diversity was represented. It highlighted that the needs of black gay men, and the fact we are disproportionally effected by HIV, is still at the forefront of the work we do. Leading these campaigns and being represented is still incredibly important.”
“It’s important for us black men to take care of our sexual health and get tested regularly because sadly we are disproportionately affected by HIV…” said Phil Samba, an activist and writer. “We deserve to have the sex we want, which is right for us, with the least amount of harm. If other queer men are the main source of sexual health information for queer men, it is extremely vital that we all teach ourselves and others about all the preventative tools available today, how they work and how to access them. Black queer men especially need to be able to have open and honest conversations de-stigmatising sexual health among themselves and their friends from different backgrounds.”
“I originally wanted to do the campaign because it’s something fresh and new…” said Gus, one of the participant-leads of the Me. Him. Us. project. “You don’t see it every day. It’s nice to finally be represented in a positive way. Usually you don’t see black men in a photo shoot or a campaign when you’re walking down the street. It’s refreshing to be shown in a positive way too, and not just seen in a negative stereotype. It’s something beautiful to be a part of, knowing that we are helping to effect a change.”
“It was empowering to be surrounded by so many young gay black men who are so passionate about spreading awareness of HIV testing…” added Tre, one of the project’s participant-leads. “Everyone who took part in the shoot came from a variety of different backgrounds and it’s powerful to see the representation of people from the gay black community from all different parts of the country as well. I think it’s really important for young gay black men, especially for people who might be struggling with their own identity, to see people that look like them on billboards and social media, talking about the important of getting tested.”
“When Me. Him. Us. launched, we saw something that I’ve never seen in HIV prevention…” said Ian Howley, Chief Executive of GMFA. “There was a movement behind Me. Him. Us. – black gay men felt emotionally connected to this work and helped us spread the campaign’s important message about looking after your own health, your partner’s health and your community’s health to over five million people. I was delighted that we were able to continue this important work in partnership with black gay and bisexual men. These men deserve more than one-off campaigns or to be involved in a tokenistic way without any say. And they deserve to create work that is by them, for them, and empowers their community.”
The personal is political
The seismic shift that we’ve seen in recent years in the effectiveness of treatment for HIV, as well as the emergence of PrEP, has contributed towards a dramatic change in the attitude of gay men towards HIV, health, and sex.
It’s been difficult for public health policy to keep up, but it’s also difficult for older gay men like me to get our heads around the changing landscape of sex.
In June of 1981, when the beginnings of the HIV pandemic were first being identified, I was approaching my ninth birthday. Lucky, I guess – too young to be impacted by the first devastating waves of the virus that killed so many young gay men.
As I was beginning to discover sex, the public health messages very strongly articulated that sex without a condom equalled death.
It’s a bit hard to describe how that constant fear of infection and death shapes your view and experience of sex. I’ve got no way of knowing what things would have been like without that – I like to think that it might have been something like San Francisco in the 70s, or a long, lust-filled summer on Fire Island.
I survived. I was careful. I was lucky.
It wasn’t until I saw the 2003 documentary The Gift that I became aware of the fetishisation of HIV, and a growing movement of men who embraced the risk and health consequences of fucking without condoms, of letting guys cum in you, the thrill of raw, or ‘bareback’ sex between men. It was an uninhibited hedonism best captured by the porn of Paul Morris and Treasure Island Media.
It’s easy to judge and disapprove of risk-taking behaviour, but there was something incredibly compelling about this type of no-holds-barred sex – no fear, no care for consequences.
The improvements in medication and the emergence of PrEP have now made bareback sex the norm. Not only in porn – where it’s now highly unusual to see anyone using a condom – but also in everyday life.
Health professionals sensibly remind us that condoms are still worth wearing as they protect us from a whole range of sexually transmitted infections, not just HIV, but the reality is that for me – and many men – sex is better when you don’t have to wear a condom.
I find it a bit of a mind-trip that testing positive for HIV is no longer a death-sentence, that you can have sex without a condom and not worry if one of you might have the virus. That you can have no-holds-barred sex, with no fear, and no care for consequences.
It’s fantastic that today’s young gay guys, who are just beginning to discover and explore sex, don’t have to worry about HIV. Obviously they need to learn about it, they need to have access to PrEP, and they need to understand the full gamut of sexual health, but it’s just part of life.
Let’s not forget our history, let’s not forget the people we’ve lost, but let’s be thankful that young guys today are growing up in a world that’s something a bit like San Francisco in the 70s, or a long, lust-filled summer on Fire Island.
The revelation that Gareth Thomas was forced to publicly disclose his HIV status after a media outlet threatened to publish the details without his consent has put HIV stigma on the front page.
Obviously, the story is not whether or not Thomas has acquired HIV, it’s that HIV stigma is still such a powerful force that it can effectively be used to blackmail a high profile sportsperson who has not publicly disclosed that information.
“#HIVSTIGMA is often complicated…” explains Ash Kotak of #AIDSMemoryUK. “Some people’s prejudice is not only HIV related but it is also to do with homophobia, racism, misogyny and a whole catalogue of other predetermined hates.”
“Some people we may wish to educate, and put effort into trying to educate those who are not open to conversation…” continues Kotak. “Some people will never change their point of view, and their prejudice only becomes further embedded the more we try.”
“The ultimate way to deal with stigma is to raise the self-confidence of people living with HIV, so the historical and extreme abuse experienced by so many is superseded with power and inner strength…” says Kotak. “That’s what we at #AIDSMemoryUK aim to do through our many events. That’s also why we campaign for a national tribute to HIV and AIDS in the UK. HIV is different from other medical conditions due to the moralising and the shame that takes control of the whole body of a person living with HIV.”
While it’s been an undeniably horrific experience for Gareth Thomas, his willingness to now talk publicly about his health and the stigma surrounding HIV is having a positive impact.
By covering the story, media outlets that reach audiences that might not otherwise hear much about HIV are educating everyone about the advancements in HIV treatment, the power of Treatment-as-Prevention (or Undetectable = Untransmittable which is how we generally refer to it), and the important role that PrEP can play in preventing the transmission of the virus.
HIV is a virus. It doesn’t make any moral judgements. There are no innocent victims. You’ve either acquired the virus or you haven’t.
The more we can get the message out there that HIV is a manageable condition, that people with HIV can lead long and healthy lives, and that effective treatment of HIV means that you can’t transmit the virus, the more progress we will make to breaking down the stigma that remains associated with the virus.
Life beyond diagnosis
Testing positive for HIV is tough. While advances in medication have meant that it’s no longer necessarily a life-threatening virus, diagnosis can still result in substantial health, financial, and social implications.
According to GMFA, the gay men’s health charity in the UK, taking control of your general day-to-day health will give you the best chance of living healthily with HIV. GMFA’s work with people who are living with HIV has shown that a healthy lifestyle can help to keep your immune system strong, improve your mental health, and enable you to maintain your quality of life.
“If you are living with HIV, participating in sport might be a challenge but it’s one worth tackling and not just for your physical health…” suggests Nicholas Rose, a consultant counsellor and psychotherapist based at The Westover Clinic in West London. “There is a proven physiological link between exercise and psychological well-being. However, a great benefit of sport is its potential for providing something in common with others – in other words, a reason for being with others. We are social beings – opportunities that facilitate the use of our social potential are key to good mental health. One of the problems for someone who tests positive for HIV can be that the persons’ anxiety about finding a way to live with the condition leads them to make incorrect assumptions about what they can and cannot do. I always recommend taking time to identify and challenge these. For example, a popular wrong assumption is that someone who is living with HIV can’t play team sports such as football. In reality, people living with HIV can and do play football.”
“Often people living with HIV are worried about joining a new gym or a sports club, as they don’t want to disclose their status…” explains Garry Brough from Positively UK. “The reality is that there is no obligation to disclose whether you are living with HIV unless this may impact on your exercise or sport. However, if you’re confident that you’re dealing with fitness professionals that can maintain confidentiality, I’d encourage people to share their HIV status so that any exercise or training programme can take into consideration any potential side-effects – such as dizziness or tiredness – from your medication.”
“In 1991, when I was diagnosed, I was 23 and I’d never been to a gym…” remembers Brough. ”My main exercise had been dancing on a night out. At that time, there wasn’t really any medication available and I was told that I had five years to live. I decided to do everything possible to prolong my life, so I stopped drinking, stopped smoking and anything else that might damage my health. In time, as medication became available and my health improved, I joined the Positive Health programme at the Central YMCA in London – this really helped to improve my health and confidence. Since then, I’ve gone on to train as a Pilates instructor and a personal trainer, and I’m in pretty good shape!”
The Positive Health programme is one of the only UK initiatives designed to help people living with HIV to increase healthy activity. Positive Health provides exercise options in a non-clinical setting. The 12-week programme includes an initial fitness assessment and an individual exercise plan which could include anything from gym-based resistance training, swimming, and exercise classes. Importantly, Positive Health’s activities include a strong focus on interaction and social inclusion - helping participants to build support networks and self-confidence.
One of the most successful elements of Positive Health’s programme is the swimming group. Led by coaches Hilary Fassnidge and Martin Purcell, the work of the Positive Health Swim Group has been recognised by the Amateur Swimming Association – the governing body for the sport in England - acknowledging Positive Health’s swim group for inspiring people to use swimming as an effective exercise.
For Fassnidge, who has been working with Positive Health for a number of years, seeing the personal benefits for participants in the programme is the reward.
“We see great changes in our swimmers over the weeks, particularly so with those newly diagnosed, who are not in a very good place. As well as exercise, swimming gives them confidence - this is something they can do, and do well, and learn to do better.”
Fassnidge confirms the importance of the social aspect of the programme.
‘The swim group meets after the sessions for coffee and a chat. As well as giving us the opportunity to talk about swimming, it also give everyone an opportunity to talk freely and safely about problems they have as a result of having HIV – doctors, clinics, medication, and side effects.”
A number of swimmers with the Positive Health programme have progressed to join masters swimming clubs, competing in events and winning medals – a further boost to self-esteem.
Fassnidge believes that, for people living with HIV, participating in sport is not just about improving health and fitness.
“It’s also another step in helping people to take back control of their lives.”
Community groups are also making an important contribution. Gay aquatics club Out To Swim manages the Graham Pearlman bequest, providing financial support for swimmers who are living with HIV. Graham Pearlman died in 2007 but his bequest is helping people to maintain their health by participating in sport – paying the cost of training fees or of being part of competitive events.
“With today’s obsession with body image, somehow HIV has become a little invisible…” says Garry Brough. “It’s off the radar to a certain extent, but we can’t afford to be complacent.”