There are those of us living with HIV, who carry deep emotional scars of rejection in disclosing our status to potential partners. For others, myself included, we either restricted our search for love to our own ‘species’; another person living with HIV, or we just accepted not to go there at all and resigned ourselves to never finding love and having sex again… That was until U=U.
Prevention Access Campaign 2018, IAS Conference, Amsterdam, The Netherlands (https://www.preventionaccess.org/)
The Undetectable equals Untransmittable (U=U) message, endorsed by more than twenty years of scientific evidence, proves that people living with HIV on antiretroviral treatments with an undetectable viral load cannot transmit HIV through sexual contact.
While the evidence has been building for years, the U=U concept was launched in the United States in 2016 by Bruce Richman who helped found the Prevention Access Campaign to spread the word about U=U. It was two years later that the concept gained traction in Australia.
Timothy, 28, who is in a serodiscordant open relationship with his partner of seven years, says U=U was a game-changer for the emotional wellbeing of people living with HIV and ending HIV stigma.
U=U gave us the confidence to enjoy sexual relationships with less of the anxieties that often come with them.
These anxieties include rejection, physical and emotional attack and our personal health information shared with others without our permission.
In 2020, most of the general population still have not heard of U=U, let alone developments in HIV treatments dating back to 1996. So, has U=U made any real difference? Has it helped people living with HIV to find love, or an interlude of sexual pleasure?
Timothy and his partner met via the online dating app Grindr just five months after Timothy was diagnosed when he was very much alone and had little knowledge of U=U.
‘We were both at university. It was 2014 and at the time I wasn’t connected with the HIV community. U=U wasn’t something I was told about,’ he said.
Timothy chose not to disclose to his family or friends and only his HIV doctor and nurses knew of his status.
‘I told my boyfriend two months after we met. He was one of the first people I told and he felt shocked and saddened for me because I’d had no support and had dealt with my diagnosis alone. We always used condoms as this is the norm in the gay community. People don’t always ask about your status.’ Timothy explains that in the gay community, most people know about the reality of HIV. Many of his friends know about U=U and they are often on PrEP as well.
In the past couple of years, because of U=U and PrEP, gay men are more comfortable about having casual sex with positive guys. But even though there is a fair amount of information about HIV, gay guys are still afraid of getting a stigmatised disease and having to deal with it socially.
Timothy said he and his boyfriend continued using condoms for about a year before they had the confidence and trust in U=U.
‘When we stopped using condoms, he also started on PREP, but that was because we were in an open relationship and it was for his protection from his casual partners.’
Timothy says there’s a difference between knowing about U=U and believing in it.
‘These days when I have casual sex with other people, often my HIV status isn’t important. But I know there are still people in the gay community who aren’t ready to trust the science and this is where we are at with U=U.’
Timothy’s advice to others is to have confidence in knowing that it’s your decision to disclose.
‘If you know you are protecting your partner it’s up to you whether you disclose or not, especially if it is casual. Be confident in deciding when, if or how you disclose. It’s your decision. And if someone is afraid of HIV, you can give them the information about U=U, but it’s not a failure on your part if it makes no difference to them.’
Timothy says in the gay community, the newly diagnosed guys are often afraid that the only people they can date again are other positive guys. ‘But this is not true at all. You can date anyone and U=U gives you the confidence to do so without the fear of transmission.’
But this is where it gets very confusing in this new era of U=U. Public health laws in Australia differ from State to State. However, whether or not an undetectable viral load, and the scientific evidence that supports U=U, constitutes reasonable precautions is still undergoing review.
Click the image below to learn about State based Disclosure Laws
Resources from HALC to navigate HIV disclosure laws in your jurisdiction
Sarah, 33, says the public health laws around HIV are outdated and need to come under Federal jurisdiction so there is no confusion across the states. Sarah says U=U is more than a reasonable precaution and it has allowed her the freedom to enjoy fully all the pleasures of sexual relationships unhindered and unimpeded.
‘With U=U, the same rules apply to everyone,’ she says.
‘It’s also about pleasure. I use condoms, but this also depends on the partner and if they initiate it or not. This is a choice and I’m not putting anybody at risk. Of course, if I’m having sex without a condom, I would have regular sexual health checks.’
Sarah’s advice on disclosure is to think about why you’re telling that person.
You need to trust the science. You don’t need to go through the anxiety of rejection and even anger when you do disclose. I’ve had it happen in the past and it has turned to shit.
Sarah adds that mostly when she has disclosed and informs the person about U=U, it’s been a positive experience.
Celebrating love in the U=U era
James*, a 64-year old straight man says U=U helped him find love and he and his partner threw away the condoms about a year ago. But James experienced the highs and lows of online dating before he found ‘the one’.
James was living and working overseas in 2008 when he found himself in a brief relationship with a young woman, but a few months after it ended she phoned him and advised she had HIV and he should get checked. He was diagnosed positive.
‘I was terrified. I knew nothing about HIV other than it was a death sentence, but my doctor reassured me about the treatments and said I was not the only expat with HIV so I was not alone,’ James said.
But due to the expense of buying treatments and unreliable blood tests, James moved back to Australia in 2011.
In the early days, I found it difficult to cope and I had issues readjusting.
Alone and without support, James went on the HIV online dating site, Positive Singles, where he met a woman living with HIV. ‘We were together for four years, but had very different interests and I realised the relationship was never going to work.’ Then by chance he met an old acquaintance, Sally*.
‘We hit it off and I felt I needed to tell her. She had no idea about HIV and I told her about the treatments. Her doctor advised her that provided we used condoms, there was no risk of catching HIV.’ James says the doctor also told her that if his viral load was undetectable, the risk of transmission from him was next to zero.
‘And this was even before U=U.’
But even so, James says, they still only had sex with a condom, but after six months, Sally called off the relationship due to a family crisis.
‘When we split up, I really lost it and started to doubt myself. It was around that time, U=U was announced at a peer-support event. I was aware of U=U but never really thought about it, but it gave me the confidence to get on the online dating site, Plenty Of Fish. The first woman I met, we’d been chatting online for two weeks and on our first date, when we were walking back to her place, I said: “I’ve got something to tell you”. She completely flipped and screamed at me: “What the fuck. You’ve got AIDS. Why didn’t you tell me before?” She then ran off.’
James then met a second woman online and after several dates when he felt they were heading towards having sex, he told her. ‘She was a nurse so I thought she’d be a bit more understanding, but she told me she had enough hang-ups of her own and didn’t want to deal with HIV.’
The third woman James met, was a vibrant 70 year-old lady who didn’t run. ‘I told her about U=U and she just said it was okay as long as I used condoms.’
James said this relationship was working well but he ended it a few months later when he contacted Sally and they immediately resumed their relationship.
‘We realised we loved each other. This was early in 2018 and while James had watched a few U=U videos and had gained more knowledge from attending peer support meetings, it was Sally who suggested they throw away the condoms after doing her own research. ‘I was undetectable and she said she wanted to have sex without a condom. Since then, the majority of times is without a condom. Sally also doesn’t feel it is necessary to have an HIV test.’
James said he felt he needed to contact the women he’d met online and let them know about U=U.
I wanted to educate them about it. All but one, were happy that I’d found love and wished me well. The first woman was still bitter. It was as if I should never have connected with her in the first place knowing I had HIV. I offered to email her a brochure about U=U, but she said she didn’t want to know.
James feels this woman’s reaction was because of the ignorance about HIV and U=U by the public. ‘There’s been no information about U=U so how are they going to know? The Australian government and the media created the stigma around HIV and it is about time that they undo the damage they’ve done,’ he says.
James’ advice to other people living with HIV entering the dating scene is to tell the other person sooner rather than later. ‘If I thought it was going further, I’d say to the woman, before we go anywhere, you need to know I’m living with HIV.’
While U=U is a breakthrough for people living with HIV to find love and enjoy sexual pleasures just like the rest of the population, it is also key to breaking down HIV stigma because it is stigma that is the cause of many of the issues we continue to face.
As the country is in the process of lifting restrictions, there is an increasing vulnerability to outbreaks. We can’t live in lockdown forever – we need an economy – so we must live with increased risk until there is a vaccine. This vulnerability means, I think, that people living with HIV (PLHIV) need to stick to the prevention guidelines more than ever (not less).
My fear is that lifting restrictions will lead to less compliance with physical distancing for many in the broader community – something that has already been observed.
An artistic depiction of SARS- CoV-2
Vulnerability for PLHIV?
Heading into winter may also make PLHIV more vulnerable. It is estimated that winter causes a 20 to 30% increase in the chance of coming into contact with COVID-19, just as it does with flu. When we have reduced the chances of transmission through prevention measures, that 20 to 30% may make a significant difference in infection rates, particularly in states like Victoria and Tasmania where winter weather is cold and closed windows and recycled air conditioning are more necessary. I think this sets up the ideal conditions for COVID-19 spreader events if there are a lot of people inside in spaces like this. (1)
“I am an avid reader of science and participate in a few online COVID-19 information sharing sites. There are a number of repeating questions: about the impact of HIV infection on COVID-19 progression; about prevention such as whether masks work; and about the likely timelines for vaccines and effective treatments.”
There are two recent groups that have looked at the impact of having HIV infection on COVID-19 disease progression – in Germany and in New York. There were people with HIV in these studies and they concluded that having HIV did not lead to a statistically increased chance of disease progression. The New York study did warn about bacterial pneumonia in people with HIV, though – so if you haven’t had the pneumovax, then it might be a good idea to get it (though it has been in short supply here, presumably due to increased demand). (2)
Prevention and wearing masks?
In terms of prevention, the initial standard guidelines from the Federal Government of regular 20-second hand washing, use of hand sanitiser, and physical distancing are still incredibly important – especially as restrictions are lifted by the States.
In Australia, the advice about masks has been widely debated. There is certainly consensus that someone who has COVID-19 (but does not know it) is far less likely to transmit COVID-19 if they are wearing a mask. There is less agreement about how much protection they provide from getting COVID-19. What convinced me was reading about super-spreader events where one person transmitted the virus to many, many people. Most of these events happened inside, behind closed windows and in recycled air. One event happened on a bus in China in winter. People all over the bus – regardless of distance – got infected from one person sitting near the back. There were several people on the bus wearing face masks and none of them got infected.
There are a few documented transmissions in restaurants. The chance of infection seems to relate to where people sit in relation to the airflow and how long they sit there. These observations have led to a difference in some guidelines, such as more people being allowed to sit outside than inside restaurants, and time limits for how long people can stay inside places like restaurants. (3)
“For me, it means I now choose to wear a face mask whenever I’m inside or where there is a large group of people (e.g. supermarkets, public transport) and try to get in and out as fast as possible (i.e. a few smaller shopping trips instead of one big weekly shop).”
Mask usage on public transport
Treatments and vaccines?
A common question is ‘when can I get my life back?’ Can you make an educated guess about COVID-19 treatments and vaccines? When compared to HIV in the 1980s, it is staggering how fast scientific discovery now moves.
We knew the SARS-CoV-2 virus and its genetic pattern in weeks – this took years in HIV. We know most of the targets for drug therapy and vaccines – which again took years in HIV.
There has been an explosion of information and scientific reports – but just like early HIV science – there is a lot of speculation and some not very good science included. (4)
There are already treatments which show some small benefit against a few different targets – something that took a long time in HIV. It is possible that these treatments will show more benefit if they are given early – just like in HIV. But that would mean a lot of early testing in a disease which progresses rapidly.
“With COVID-19 it is much easier to demonstrate benefit quickly – the course of the illness is much faster than HIV. But at the moment, trials are mostly using drugs that have already been tested in humans – which speeds the process. It will take longer to develop drugs that have been specifically developed for COVID-19.”
Even if existing drugs show enough benefit for a mass rollout – depending on the drug – scaling up manufacturing to the huge capacity needed may take up to 12 months. And if production companies think a vaccine could happen soon, then they might be reluctant to fund such capacity.
If you’ve lived in communities affected by HIV and followed vaccine development, you know it is a fraught process. There is no HIV vaccine because HIV has a trick. When it buds from a cell to go off and infect other cells, it coats itself with a common human cellular protein making the immune system ignore it.
SARS-CoV-2 (the virus that causes COVID-19) does not have this trick. Already over 50 antibodies have been identified in immune responses to COVID-19 – and many of these are neutralising.
About 70% of people who get COVID-19 develop a T-cell mediated immune response (5). All of these provide hope for an effective vaccine, and already there are over 120 vaccines in development and at least 10 in human trials. This is happening at a staggering pace.
If you listen to the experts, one will say: “this year” and another will say: “maybe never”. Both are guesses, but I am hopeful for early next year. then there is scale-up and the politics of equitable distribution. The costs involved in global delivery are huge. Scale-up and delivery will take over a year.
For the medium term, COVID-19 being in our communities is something we need to live with. And when a vaccine happens, our communities need to be arguing for equitable distribution.
b. Qantas outlines the new flying rules https://www.airlineratings.com/news/qantas-outlines-new-flying-rules/ The relevant paragraph is:- In addition, the air conditioning systems of all Qantas and Jetstar aircraft are already fitted with hospital-grade HEPA filters, which remove 99.9% of all particles including viruses. The air inside the cabin is refreshed on average every five minutes during flight. The above is a reference to the air standards in respiratory Intensive Care Units where the air must be refreshed 10 times per hour.
2. Covid-19 in people with HIV – Aidsmap article
The article states that there is no increased risk of severe COVID-19 in people living with HIV, but that vigilance over bacterial pneumonia required.
I participate in a few Facebook peer groups for people with HIV, and I’ve noticed a fair bit of talk about side effects – particularly in relation to some of the newer HIV treatments. Often the standard response is ‘talk to your doctor’, which is not always useful for the person asking the question.
One person, for example, was experiencing very annoying muscle pains a week after starting a new drug. They asked about this, wanting to know if it had anything to do with the treatment. Two people told them to ask their doctor. One person said they had muscle pains from the same medicine that got so bad they had to stop the drug. And about ten people said they had muscle pains that resolved after a short period.
The person asking got the information they needed – which was to wait and see if the pain resolved but to go back to the doctor if the pain worsened or did not resolve. They posted weeks later that the muscle pains had stopped.
Interestingly, however, one of the people giving the ‘ask your doctor’ advice challenged the people sharing their experience saying, ‘you are not doctors’. I do not think peers who share their own experience with treatments are under any illusion that they are doctors.
The Value of Peer Knowledge
There is good evidence that peer experience and knowledge about your illness not only leads to better health outcomes but it also saves health care costs. In the above example, the person did not have to make an additional appointment with their doctor, and they were reassured that they should keep taking their medication in the dosage recommended.
There are times when ‘go and see your doctor’ is the correct response. For instance, someone has started a new drug and says they have large body rashes with a temperature. This is an obvious potentially serious side effect. Then the important advice is to go to your doctor as soon as you can.
There is a basic set of knowledge about HIV drugs and side effects that is useful to have. That does not mean you need to know the name of every drug and their common side effects, but it is useful to know the types of side effects and how to get more information. There are three types of side effects I associate with HIV drugs.
Three Main Side Effects of HIV drugs
The first are induction side effects. These are the ones that occur soon after you start a new drug and generally resolve in a few weeks. When you get a new drug you might get a long screed of written information. I’m one of those people who takes in more when I hear things rather than when I read them. So I find it useful to ask the doctor about any induction side effects that I can anticipate.
Then there are persistent side effects that occur while taking a drug. Anyone who has been on treatment for as long as I have (almost 30 years) will know about the persistent side effects of the earlier HIV drugs. For instance, one drug was often associated with diarrhoea; so much so that many people with HIV referred to it as ‘Diareetra’.
The good news is that these persistent side effects are very rare with current HIV drugs. But there are a couple of common issues that constantly pop-up that may or may not be associated with HIV drugs. These include diarrhoea and weight gain. I will discuss diarrhoea separately below.
The final type– which often limits the use of the drug – are cumulative or long-term side effects. That is, they develop slowly (often over years) and when they get serious enough may result in a need to change drugs. An example of a slowly developing side effect would be lower bone mineral density or diminished kidney function associated with Tenofovir. I was on Tenofovir for many years, but like a lot of people with HIV, I swapped when my BMD (bone mineral density) started to get concerning.
“The two most serious side effects I have experienced in 30 years on HIV drugs are these cumulative side effects. As a result, after 5+ years on the same drugs, I am much more open to swapping treatments unless there is good evidence that it is safe to continue. I usually initiate a conversation after several years about swapping and ask for any new information about long-term side effects for the drugs I am on.”
There have been three drugs I have been on where the initial information I was given was that there were no problems with long term use – information that changed as more became known.
It Has All Been A Learning Curve
Because of the way HIV drugs are developed and approved there is usually a lot of knowledge about induction side effects or possible persistent side effects. But because no-one has used these drugs long-term when they are approved there is no knowledge about long-term or cumulative side effects. This knowledge only develops after a lot of people have used the drugs for long periods.
There are a number of conditions people ask about on online sites where they assume it could be a drug side effect. One example is diarrhoea. Diarrhoea certainly was a common side effect of early generations of HIV drugs. But for current drugs, diarrhoea is more likely to be due to other reasons rather than directly due to a drug. Long term HIV infection is often associated with greater susceptibility to diarrhoea. So is just getting older. But the susceptibility is greater in people with long-term HIV.
The gut is loaded with immune system cells that can be affected by HIV. And long-term HIV more often affects the rate at which food passes through the gastrointestinal tract. There are large numbers of people with HIV who tolerate diarrhoea for years when usually it is a treatable condition.
“What works for me is drinking two litres of water a day, eating a high fibre diet with lots of variation including yoghurt and kale, and not drinking coffee. This may not be sufficient for some people but there are other options, including anti-diarrhoeal medications. Remember, diarrhoea is usually a treatable condition, so do not put up with it.”
Some Places You Might Find Useful Advice Are:
1. Peers: HIV positive friends or people with HIV on Facebook groups like TIM (The Institute of Many). They are useful check-in points for things like ‘is muscle pain a side effect?’
2. Dedicated Treatment Officers: Most positive organisations have dedicated Treatment Officers who will find out an answer to your questions
3. Treatment Information Sheets: Produced by organisations like NAPWHA (www.napwha.org.au/resources)
4. Product Information: The written information produced by drug companies is often the first bit of literature you get when starting a new drug. It has to be produced in Australia as a requirement of the regulatory process
5. The Internet: The advice to be wary of medical information on the Internet is good advice. But there are also a number of trusted sites that give good information and have good information resources. These include:
6: Healthcare Professionals: Particularly those with HIV experience (like HIV-trained GPs, nurse practitioners or hospital specialists in infectious diseases or immunology) or GPs who share care of patients with HIV specialists. Remember too, if you are worried about any medical advice or decision, you can always seek a second opinion.
Like the majority of the Australian population at some stage this year, and particularly for us poor folk in Melbourne who are going through a second lockdown, I have felt anxious and uncertain about what COVID-19 could bring into my daily life. For which I mean, how to protect myself against catching it rather than having to actually live with it, something that for someone with a damaged immune system from thirty-five years living with HIV, would likely be a major challenge.
Since the virus reared its ugly head earlier this year, public health restrictions to try to contain it have turned many people’s lives upside down or for those lucky enough to be in employment, has placed them in front of computers doing endless Zoom meetings. Even retirees like me find giving up meeting friends at cafes or the movies a real loss to our quality of life, even if it is nothing compared to those who have lost their job or are unable to connect with loved ones due to travel restrictions.
The missing ingredient in our lives has become human interaction. Just spending time with a couple of close friends can be the greatest mental health stimulus in your daily life — that you don’t really miss until it’s gone.
A hug, a kiss and dare I say it, sexual relations are pretty much off the agenda, unless you are already coupled. It’s no surprise than that our mental health agencies are reporting a great increase in requests for help — living in relative solitude gives us more time to contemplate our navels, big and small issues in our lives and where we’ve gone wrong with that person, job, or direction in life. Forgetting about all the good things we’ve achieved or could achieve.
I say this because a number of my friends with HIV have talked about how the last few months and the spectre of another potentially fatal virus in their lives have brought up flashbacks about their HIV diagnosis, whether they have had it for a short time or for decades.
There are few people who can say that finding out they were HIV-positive didn’t involve a level of trauma, self-reflection and sometimes, depression and self-doubt. Those of us diagnosed in the eighties lived with the knowledge that there was no cure and medical predictions of a high rate of mortality for those who had it. In my case, I didn’t even know that HIV existed when I contracted it. Regardless of your circumstances though, an HIV diagnosis is difficult for many people today, even with effective treatments and U=U. Because you think, rightly or wrongly, that it may have implications for your ability to find a partner or effect the way others think about you. To impact on your interaction with others.
Contemplating how I might survive the six weeks of lockdown in Melbourne, I thought about the counselling session I had earlier this year via Zoom — the counsellor was unhappy about a face-to-face consultation and while she was good at her job, the lack of warmth that comes with the barrier of a screen didn’t quite work for me. I know there are some counsellors who do face-to-face consultations if I want to persevere.
I went through the Netflix possibilities and wrote a list of potential murder mysteries and gay-themed comedies. I accepted a couple of invitations for friends’ weekly Zoom catch-ups, sometimes with friends whom I’m lucky to see every few months and now see once a week. I have participated in peer support group sessions online with my local PLHIV organisation and NAPWHA’s fun Chin wag sessions with the spectacular Vanessa Wagner which have been very reassuring. These digital connections have been a real positive from the time of restrictions, I thought.
Then I remembered something that I have often done in times of stress and uncertainty. I opened Word on my computer and started to write. To put my thoughts down. Not necessarily for anyone else to read but I’ve found that the act of writing can help to crystallise my thoughts, to give some of my thoughts a bit of clear air and sometimes resolve a few issues just from the effort.
When I was a child my mother (well, Santa) gave me a diary for Christmas and I developed a habit of filling one in conscientiously every night for many years, with often very banal and boring detail that wouldn’t interest many others. But it brought a lot back to me when I read those memories later in my life. People I’d forgotten and raw emotions: like the time my parents separated and our family felt torn apart. It’s such a gem to be able to read those entries many years later, whether good or bad memories.
I find writing therapeutic. I know some people think it’s difficult, even impossible as they say they experience “writer’s block”. I get this, particularly for people unaccustomed to putting thoughts on paper. But the way around this, I think, is to just tell yourself you are writing for yourself, for your own pleasure, if you like. Start to enjoy the act of writing without putting any external judgments from others into the mental picture in your head.
When you experience the joy of putting something down that really encompasses how you feel about a subject, a person or an issue you will know the “high” that can come from communicating something important to you – whether to an audience or not.
I think it can also be useful to help you deal with stress, boredom or any kind of uncertainty where you need to get your thoughts together — or plan for the future.
We all hope that COVID-19 won’t be a defining feature of our lives over the next few years and that somehow it will be able to be controlled with public health measures.
I recommend though that people with HIV work through any issues that it has brought up again through the vehicle of writing and if you’re happy, to share it with others (particularly peers), for hopefully constructive feedback. Maybe with a counsellor if you have or can find one.
Long-term HIV survivors will be reminded of the grief and loss of the early days and putting that down on paper, maybe in your own “autobiography of my life”, can be a rewarding thing to do. More recently diagnosed people will have a myriad of issues to “decompress” onto paper, too. Think of your experiences of HIV stigma, partner rejection and acceptance, and conquering mental health issues over the years.
I wish you the best of luck with your writing if you decide to take it on.
We are always interested in quality writing here at Positive Living. We can’t promise to use them all but if you’re interested in submitting your work email your contributions to: firstname.lastname@example.org (Please limit submissions to 1000 words.)
When asked to write about sex and COVID-19, I wasn’t exactly sure where to start. Even though I’m part of multiple COVID-19 taskforces, there are still so many unknowns, with many PLHIV affected in wide a range of ways. The reintroduction of restrictions in Victoria has been particularly difficult for many members of community.
I chose to interview two sexual health professionals, Dr. Wendell Rosevear and Associate Professor Darren Russell, to get their take on sex and mental health at the current time. This interview was conducted on the 19/6/2020.
Dr Wendell Rosevear is the director of Stonewall Medical Centre in Brisbane, a recipient of the Order of Australia, and lobbies nationally to generate understanding about drugs, addiction, recovery, prisons, male sexual assault, sexuality, relationships, suicide and prevention. He believes passionately in the value of each person and in nurturing honesty to deal with life’s issues and has the life motto and aim, “to make Love infectious”.
Dr Darren Russell is a sexual health physician and the Director of Sexual Health at Cairns Hospital. He holds the positions of Clinical Associate Professor in the Department of Population Health at The University of Melbourne and Adjunct Professor in the School of Medicine and Dentistry at James Cook University in Cairns. He was also the Principal Investigator for the Queensland HIV prevention study – ‘QPrEPd’, with interests including Indigenous sexual health, transgender health, and the elimination of Hepatitis C infection and HIV transmissions in Australia.
How has coronavirus affected the sex lives of your patients that are living with HIV?
Wendell: “Gay people are pretty good at connecting with each other. The whole pandemic has actually produced a lot of isolation, where people actually have less access to connect, through venues and internet hook ups. I find that people are having a lot less sexual connections. Interestingly, in preparation for this talk, I contacted both Gladstone Road Medical Centre and Holdsworth House and doctors at Stonewall and surprisingly I found that there were no local transmissions of coronavirus in the Brisbane community via clinics accessed popularly by gay community.”
Darren: “I think initially there was a lot of concern by people living with HIV about the effect that COVID could have on them, given the immune system issues that many people have, especially long-term survivors with HIV. I think there was real fear, which did lead to quite a drop in sex seeking behaviour amongst many of the folk. Many guys who are very sexual reigned it in quite a lot or totally for a bit of time. That may be starting to change a bit now. Clearly some people didn’t, they continued to have a very full ‘social’ life, but there’s certainly a lot of people who toned things down because of fear, and also wanting to help others, not wanting to pass COVID on. So, there was fear for themselves, but also wanting to protect other people, wanting to protect their sex partners.”
Over 40% of people living with HIV that recently responded to a NAPWHA survey about the impacts of COVID-19 on people living with HIV indicated that physical distancing significantly impacted their mental health, and 47% of respondents indicated that their most pressing needs relate to mental health support. Do these percentages surprise you?
Darren: “I think a lot of this is personality driven. Many people in the world are extroverts, love company, love going out, love socialising, love hugging, and being around others. For those individuals, it’s been an extremely difficult time. That lack of physical touch, intimacy, that lack of closeness, not being able to kiss a friend, or hug a friend or family has been very difficult and mentally challenging for people. There are other individuals out there who are more introverted, and were never particularly social butterflies, and for them it’s been less challenging.”
Wendell: “The biggest problem I’ve seen is the angst that’s come in parallel with COVID; people losing their jobs, losing their security, having their rent or their mortgage in jeopardy, and also the loneliness. Some of my patients say ‘ah this is normal for me, I’m pretty alone anyway’, but people really are starved for connection, starved for that opportunity to have social contact. Some people will see going out to a venue like a weekly charging the batteries or keeping the motivation up. Interestingly I run GLADS, the Gay and Lesbian Alcohol and Drug Support Group. I’ve kept it going right through the pandemic. We’ve offered social distancing, masks, and hand sanitisers as options for people coming to the meeting, and our numbers have gone up.”
What should people be doing to look after their mental health at the current time?
Darren: “Trying to maintain social contact in some way or another is vital; with family, with friends, with other people. I found it challenging. I’m a member of some sporting clubs and I enjoy that, and we haven’t been able to do that sport. Part of my life that was quite important, my socialising disappeared. I think we have to be a bit creative. We have to find other ways that we can meaningfully engage, even if we can’t be as close to each other physically as we would like to be. Keeping in touch by email, text, phone call, having Zoom meetings. It gives a real sense of community and keeps people in touch. As we are coming out of isolation and out of restrictions now, hopefully some of the difficulties people have had will reduce, but the issues of employment are huge. A lot of people gain satisfaction from their job, or money of course, but there is a ‘family’ or a social group at work. That’s been missing also and may not start up again. So, these are very uncertain times.”
Wendell: “The analogy that I find helpful is … if you can see big waves, and you’re out at sea, and you’re just on your own, and all the things seem to pile up on you, of course you think that you will sink. You can’t stop the waves, but what you can do is build a life raft and connect with people in whatever way is possible; either by phone, by texting, or by internet communication – to build the life raft so that even though you can’t see over the waves, you can stay afloat and float through the crises. Closer to the beach, the smaller the waves. Otherwise you get a sense of loneliness or overwhelming, the tidal waves swamped feeling. I say to people ‘if you’re in a rip, float, don’t try to swim against it, otherwise you’ll drown, because you’ll get exhausted or you’ll feel no hope or you’ll panic’. I like the life raft analogy as a coping strategy.”
Darren: “I think something that’s already been alluded to is taking solace in alcohol and substances, which we’ve probably all done to a certain extent during this time but it’s not a good long-term coping strategy. We’ve certainly seen a lot of people have increased drug and alcohol usage, sometimes at quite a harmful level, when they’ve managed not to do that for a long time. There are good ways of coping, and there are perhaps not such good ways of coping.”
Wendell: “That’s very valid Darren because one of the alcohol and drug research institutes found that alcohol use has gone up 70%, and people’s concern about it has gone up 40% through the pandemic. I’m on the state domestic violence council, and certainly domestic violence has been raised through this time due to isolation and increased substance use.”
As restrictions are lifted across the country, many individuals will be wondering how they navigate casual sex off hook up apps. What are your thoughts?
Wendell: “I think that the ASHM and New York Guidelines are very helpful and also George Forgan-Smith with his thehealthybear.com.au, translating them into local, user- friendly language. They’re really helpful resources for people. I’ve been through HIV pandemic and now COVID pandemic, and I’ve got two basic guidelines; i) I treat everyone as valuable, and ii) I treat everyone as potentially infectious. I don’t get safety out of prejudice, out of assumption, out of guessing, any form of labelling people. I get safety out of safe practice and promoting safe practices as the strategy. It’s pretty hard to use distance when it comes to sex. I think the leather scene is quite clever, that they wear doggy masks and things like that. Even in ASHM, they talk about maybe looking at sexual interaction that doesn’t involve too much direct face-to-face breath exchange. The other thing is that hygiene is important, like washing before and after sex, and limiting the number of partners, and considering old fashioned ways like condoms, and there is flavoured lube and flavoured condoms. It doesn’t mean we have to think that sex is impossible. We need to be quite creative and innovative. Most people actually like the body and the intimacy of sex more than just the turn on or cumming, so we need to look at maybe concepts like massage or sex that doesn’t involve too much breath exchange. If you’re symptomatic, with fever or current respiratory symptoms, look after yourself and look after the people you care about, because that’s the highest risk for transmission.”
Darren: “Any sexual contact, any contact between two humans, is going to involve a risk for COVID-19. We can’t get rid of that totally. We can reduce the number of sexual partners, we can reduce the amount of time we spend with a person, with a casual contact, we can have sex that doesn’t involve face-to-face contact. There have been two studies in semen; one found that they could find COVID-19 in the semen of some people with COVID (Li, Meiling & Pengtao, 2020), the other study found that they could not find any (Song et al., 2020). One study of vaginal secretions also found no COVID in the vaginas of 10 women with COVID-19 infection (Lin et al., 2020). Rectal swabs are a good way of finding COVID-19, but we don’t know if the virus is actually capable of transmitting or whether it’s just remnants of the virus. There have been no cases of sexual or faecal transmission, as far as we’re aware. So, if it does happen it’s much less common than breath, exhaled air, or what’s called fomites, which is virus being on surfaces. Attention to hygiene, not being face-to-face, and reducing the number of sexual contacts and the time you spend with them are going to be the best ways to reduce risk if you’re wanting to continue to have sex of some sort.”
Do you anticipate many changes to sexual health services across Australia post-pandemic?
Wendell: “I think we’ve got a renewed awareness of the need for accessibility. People have got a renewed sense in the value of their health and that our life is actually quite precarious, that the whole world can shut down and our life could be at risk. I would really welcome people reclaiming ‘my life is valuable’, ‘my health is valuable’. Who could ever believe there would be such awareness of social distancing or hygiene? I was at the Black Lives Matter rally and most of the people actually had masks on. I’ve never seen such radical social awareness and public awareness about health and prevention before.”
Darren: “I don’t think we know yet. It’s only been three months when you think about it. We normally see around 300 people a week through our service, and that dropped to about 150 in the middle of this. It’s now climbing up again so things can change very quickly, for better or for worse. I hope we keep a bit of a reliance on Telehealth, if that suits the patient or the client. It’s not always easy for people to get to a doctor, take time off work, wait in that waiting room for forever. Being able to do it from your mobile phone on your lunch break would be much better. There’re many consultations that can be had that way. Not all of them, clearly, but I’d like to see that continue if it’s what the patient wants.” Wendell: “I’ve got a personal life motto ‘to make love infectious’ and if love could spread as quickly as COVID, I think we’d have a new world. If we each love within our reach then we are part of a revolution, so I think we need to use love to prevent COVID.”
Please refer to local information within your state regarding restrictions currently in place. This will continue to be an extremely challenging time for many members of HIV community. Please look after yourselves and those that you love and care for, stay connected to others, maintain routine appointments, and seek support if you require it.