Issue 105, Summer 2024

New Year, New Me

For the new year, Poslink+ Quarterly takes a fresh look at the routines and behaviours that make up our daily lives, with an emphasis on antiretroviral treatments.

Mental health clinician Tamera Broughton offers a rethink on setting new year resolutions while David Menadue speaks with community members about adherence and the brave new world of long-term injectables. Professor Jenny Hoy also weighs up the evidence on integrase inhibitors, exercise and diet.

The art featured on the cover of this issue of Poslink+ pays tribute to Peter Maloney, who passed away in September of last year.

Rethinking that New Year's resolution

by Tamera Broughton

So here we are, in January...

For some, the end of the year represents stress and hardship. I see you. Take a deep breath, show yourself some kindness – you got through it.

The new year is also a time when we put a lot of pressure on ourselves to achieve big things.

If you are anything like me, you’ve set yourself dozens of New Year's resolutions over the years. If you’re also like me then you’ve found most of them don’t stick. Or maybe you kept your resolution, and you didn’t experience the big, meaningful change you were hoping for. Why is that?

Today I want to offer you a bit of different way to approach effective goal setting, as well as some tips to help you stay motivated, focused and achieve what’s actually important to you.

Goal setting and behaviour change – understanding what’s involved

When we set New Year's resolutions, what we’re really doing is drawing on two distinct psychological processes – goal setting and behaviour change. There is much literature and many schools of thought and perspectives within psychology and neuroscience in particular, surrounding these processes.

Goal setting and behaviour change aren’t easy. As James Clear says, “goal setting is not only about choosing the rewards you want to enjoy, but also the cost you are willing to pay.” Setting goals means acknowledging and being prepared to put in the work. We often need to change our behaviour, which takes mental and physical effort, dedication, consistency and determination.

In The New Rulebook, Chris Cheers offers us a reframe on the concepts of change and goal setting. He notes that long-term goals sometimes trick us into thinking that we’re in complete control of life, which can set us up for failure. He suggests that we focus more on what we’re in control of – the here and now – and dedicate our energy to changes we can make that will significantly shift our life. “It’s not about a dream that you want your life to take, but an action that takes a big step towards it.” It’s a bold, pragmatic leap – big change. Interesting.

Chris goes on to explain that our brains and nervous systems were shaped a long time ago by our prehistoric ancestors. Those who were more risk adverse and vigilant to danger had a better chance of survival. So, it’s actually a survival legacy that has been passed down to us, that change means uncertainty which creates anxiety and fear, leaving us less likely to action change and more likely to avoid short term discomfort. It’s this anticipation of discomfort that can prevent people from considering the change that will ultimately benefit them and not even set goals or action change in the first place. If this sounds familiar, you’re just very human.

Figuring out what we really want

But how do we know which goals or the big change we should be aiming for? Here is the important part.

There is so much pressure in our society today to BE something. Be skinny, be young, be fit, be rich, be successful, be social, be healthy, be happy. It’s kind of like the message is: be anything except what we already are. It makes complete sense then that we would craft our goals that are more about conformity.

The problem with this is that it rarely speaks to our actual, valid, real-life human needs. Being too focused on the expectations of others rarely helps us to achieve what we all really want – quality of life that feels meaningful to us. Our goals end up feeling empty at best and possibly actively harmful for us at worst. So of course, we don’t stick with them, and that can leave us feeling like a failure or like there is something wrong with us. I want to assure you friends, that there is nothing wrong with you.

There is also nothing wrong with wanting big change for yourself and or wanting to set goals to achieve that change. But I want to give you permission to shut out all the external noise, go inwards and really connect with what the need is that is driving the change you seek.

For example, a common new year’s resolution is to exercise more. Why is that? I think a lot of us feel the pressure to fit a particular body size and shape, so sometimes the drive to exercise is actually more about shame or judgment.

What if, instead, we had a goal of wanting to exercise more but was able to connect with a super valid, and also very human, underlying need? Well then, it might sound something like; I need movement to keep my body healthy and feel better. Or I need movement to have fun. Or I need movement to connect with others. Or I need movement to help me manage and move stress out of my body. Connecting with the underlying need (feeling physically better, connecting with others, having fun, managing stress) then becomes a far more motivating and authentic reason to exercise. You are more likely to stick with it and it becomes an avenue whereby you are living the life that is meaningful to you and meeting your needs.

How to achieve big changes in five steps:

1. Be clear about your needs and values

From an Acceptance and Commitment Therapy (ACT) perspective we talk a lot about values. What is important to you? Who do you want to be? How do you want to show up for friends and family or at work and in your community? In ACT the belief is that our needs and values should guide our behaviour, which helps us to live true to ourselves and our purpose and significantly increases our quality of life. So, I encourage you to reflect on your life right now. Are you able to name your needs and values? Does it feel like your needs are being met? What change is required to start meeting your needs and living your values? This is a really important step. Thinking about big change or setting goals in terms of your needs and values (what’s important to you, who you want to be, what you want to represent) will increase your commitment to behavior change, even when things feel hard. You can try the exercise from ACT Made Simple at the end of this article to get started.

2. Set your intention

Here’s where you get to have some fun. Visualize what you want, go wild – journal, create a vison board, start a Pinterest board, draw or paint your vision – do whatever gets you invested in your goal, excited for the possibilities and clear about what you’d like the end result to be.

3. Get specific in the here and now

What big step towards your goal can you make in the here and now? Here is a tool that may help. In the health field, where I come from, we love an acronym. Working in Mental Health we used the SMART tool to support clients to establish goals and work towards them. SMART stands for goals that are Specific, Measured, Achievable, Realistic and Time-based. Using a tool like this will help you develop a plan about what steps you need to take daily, weekly, monthly to move towards achieving your goal. The tool will also help you to work out ways of measuring your progress, and by setting yourself a timeframe to work within will help you stay focused and not get sidetracked.

4. Review your goal and progress regularly

In therapy, as a form of best practice, we regularly review goals and progress with our clients. This provides the opportunity to honestly reflect on how you are going. Are the things you’re doing actively helping you to achieve the change you really want? You may need to re-evaluate your actions or even the goal itself. This is not a failure. In fact, this is very important information for you to make informed choices which will help you achieve your desired outcome or improve your quality of life in the long run.

To make this step even more powerful, invite a friend or family member to be a part of this process. According to Dr Huberman, a central feature of goal attainment is actually fear of the consequences of not achieving the goal. So, including an element of accountability may provide the drive and determination to stick with your goal – even when that natural inclination to avoid the short-term discomfort kicks in.

5. Celebrate the wins

Life is all about the journey. Take the time to stop and reflect on your progress and celebrate the wins, little or big. Have fun, shower yourself with gratitude and kindness, be your own biggest cheer leader.

Make meaningful change

Setting New Year's resolutions is really about getting clear on what your underlying needs and values are and then understanding the change required to achieve those goals. It takes considerable effort, dedication, consistency and determination. But also, bravery, self-compassion, reflection and honesty. Remember, we’re most in control of the change we can make in the here and now. But getting clear on your values will help you stay committed to behaviour change and your goals in the longer term. Use the SMART tool to help you get specific on your goal and create a plan for monitoring and evaluating progress, review regularity and celebrate your progress.

Need Help?

If you are keen to learn more about goal setting, I would recommend Atomic Habits by James Clear. If you feel stuck, a therapist can help you explore your values and set goals. At Centre Self Collective we have in-person and telehealth appointments available. You can book an appointment or explore some other resources on our website.

Tamera Broughton is a mental health clinician and director of Centre Self Collective.

Get clear on your values; ask yourself these questions – from ACT Made Simple by Dr Russ Harris

  • What makes you feel proud, accomplished or fulfilled?
  • What do you do for fun, leisure, relaxation, entertainment, creativity?
  • When do you experience a sense of belonging, being fully alive, doing something important, connecting deeply with someone or something?
  • When are you at your best in your relationships with family and friends, or at work? What are you like to be around, at those times?
  • How do you treat others? How do you treat yourself?
  • Who do you look up to, or respect or admire? What do you like about their personal qualities, their personality? What are they like as a person? What do they stand for? If you had to choose two or three words to describe their best attributes, what words would you use? Think – are these the qualities you would like to bring into your own life?

The Brave New World of Injectables

by David Menadue

Treatments are one healthy habit that most people living with HIV have been able to incorporate into our daily routines.

Though having little choice in the matter has sometimes overshadowed the ‘everyday’ challenges that we can experience with daily medical adherence. Until recently.

Cabenuva is a relatively new HIV treatment which incorporates Cabotegravir, an integrase inhibitor (similar to dolutegravir) and an NNRTI Rilpivrine, which is often not used as a first line treatment for people with HIV. It is part of the new wave of HIV medicines being made available called long-term injectables. Two injections are given, in each of the right and left hip muscles every two months (initially monthly to see how your body reacts to them).

Injectables are aimed at those who have experienced adherence problems with their daily HIV meds or, because of work or travel issues, do not always find taking medications at regular times easy. As you read below, some people with HIV have found not having to think about taking a pill every day almost allows them to forget they are HIV+, for a few months anyway. There can be costs involved so it is best to ask the clinic upfront about this.

To qualify for Cabenuva you need to find a GP or practice nurse able to give the injection (or one prepared to be trained to do it properly) and assure them that you can commit to the regular two monthly injection routine. (You can't miss an injection for more than seven days or risk developing viral resistance). You must tell them if you had ever had liver problems including Hepatitis B or C infection as this might disqualify you. You have to start on the two ingredient drugs in tablet form daily for 28 days to assess how well you tolerate them before you start the injectable.

The doctors I spoke to about Cabenuva think it's an important development, particularly for people having adherence problems or for people who do a lot of international travel, such as airline stewards. Dr Beng Eu from Prahran Market Clinic told me that he now has about fifty people on the treatment. More people are considering it after favourable reports from friends and a softening of the early opposition from some clinicians.

I spoke to several people with HIV about their feelings toward this new treatment – would they consider it? Would it solve particular adherence issues they might have experienced? Or would they find changing current routines a bit risky?

Matt – the best thing to happen

"It's the best thing to happen to me, treatment-wise," said Matt. "I've been so busy with my work, my family and my social life and I kept forgetting to take my daily pill. I put it in my pocket it the morning. By the time I remember to take it sometimes, it was a soggy thing in my pocket that I’m not sure I should take. That’s if I’d remembered to put it there in the first place.

“I’m in a sero-different relationship and I wanted to make sure I was undetectable the whole time and was protecting my partner. Sometimes in the past I had just forgotten to take my ARVs for up to four days and the injectable has stopped that worry. I’m travelling to South Africa to see family next year and I’m happy I won’t have to worry about travelling with the tablets now.

“I’ve heard people saying that the injections hurt but I’ve had no serious pain issues. For the first two months I had soreness in the upper deltoid muscle where I was injected but my body adjusted to that well.

“I was also relieved when the research scientists said it was not connected to weight gain like some HIV drugs have been. I have experienced heartburn sometimes from one of the pills, but I can take a treatment for that if it occurs.

"There is a bit of preparation required with the treatment. You need to find a doctor willing to prescribe it (usually for a two month period), a chemist willing to stock it and then need to take the medicine chilled from the pharmacy to the doctor. And of course, you have to remember to do all this again in two months' time – unless you have a case worker, maybe from an HIV agency, to remind you to do it. If something happens and you can't have the injections on time, you can supplement them with an oral pill until you're able to get the injection and get back on schedule."

"I just didn't want to have to think about taking pills every morning," said Emil, pictured. Photograph: Sean Barrett

Emil – it almost feels like I've been cured of the virus!

"I wasn't having any issues with adherence," said Emil."I just wanted to not have to think about taking pills every morning – knowing that sometimes I would miss a dose or two down the track. I was also having some liver problems after being on Triumeq and my doctor suggested a shift to injectables might fix that – which it has!

I've been on injectables for eight months now and it almost feels like I've been cured of the virus. All that I have to do is remind myself of when my injections are due and to plan ahead if I have to reschedule because I'm travelling or will be away from my doctor.

"The only small downside is the cost which for me is $40 a month, which I know could be difficult or some people, and the initial soreness in my buttocks after the first round of injections (which doesn't happen now after my fourth round). I know some people have different pain thresholds and I encourage people to talk their clinician into getting training about the most painless way to deliver these injections because they are really worth it!”

Adam – too many unknowns for me

Adam was very keen to try injectables as he travels a lot to countries where his HIV meds might be forbidden. To be covered virologically for a few months at a time would be a blessing. He started the process using Dr B K Tee who works at Access Community & Health in Melbourne. Despite the doctor's skill in giving the injection, he still found the injection a very painful for a day or so.

That however was not the main reason he decided to discontinue the injections. He experienced a range of side effects that may or may not be related to the injection (increasing levels of anxiety and some concerns with his vision). As these side effects could not be ruled out, it was easier for him to return to the ARV Biktarvy and discontinue the injections.

"It's really hard to tease out potential side effects associated with ARVs and medications used to treat other health conditions. I was worried about the higher concentrations of the injectable treatment in my body as I wasn't able to have a pill lead-in to test my tolerance due to having reflux. I believe that this treatment is an incredible advance in the landscape for many PLHIV, but it's not for all members of community. I'd welcome switching to other injectable treatments in future if they were proven safe and effective as I think there are many benefits for treatment such as these, particularly in relation to global travel. "

Bernadette – missing too many doses

"I was missing too many ARV doses a month –on average about four a month," said Bernadette. "While that might not sound that many, with HIV antivirals you have to be extra careful not to miss many doses or you can develop viral resistance.

"My doctor Norm Roth from the Prahran Market Clinic in Melbourne suggested I try the early trial of Cabenuva way back in 2019. There weren't many females on the trial – maybe only two of us in Victoria. I told my doctor about missing doses and being worried about having to hide my drugs from some family members who didn't know my HIV status, so he suggested I go on the trial.

"I used to feel like taking my pills was a constant reminder that I was HIV-positive. Now I don't even really feel like I'm on treatment at all except for the day or so after I have my injection. My hips can feel sore and I take painkillers and feel lethargic for a short while but it's worth it."

Bernadette was one of the first women in Victoria to try long-term injectables. Photograph: Tom Herbert

Cristian – it fixed my tummy problems

Cristian has been on injectables since the beginning of 2023 and is very grateful that they have fixed the stomach inflammation and bloating he was experiencing with the ARV he was on previously. The only issue for him was dealing with the process of getting injected.

“The clinic I go to has had several different nurses doing the injections over that time. Some nurses are brilliant – they find the best spot in your hip area without much fuss; others take a while trying to find the pelvic bone to make sure they don't hit that! It is a complicated area to inject so I have some understanding of their difficulty.

“There is also a cost at my clinic – $90 as the medicine isn't kept in the surgery and you have to pay for the transport fee on the day of you injection plus a fee for the injection. I wasn't paying anything for my ARVs before, but I think the cost is worth it!”

Barry – why change something that's working?

Barry is in his mid 80s and has been taking HIV antivirals since the early nineties. "I've tried some shockers in the nineties that gave me diarrhoea and a big tummy," he said, "which I wasn't happy about but over the years they have largely fixed those side-effects. I'm still on some relatively old drugs, Atazanavir and Ritonavir, but I have been undetectable for more than fifteen years with no side-effects.

"If my doctor suggested I change treatments, including to an injectable, I would think about it, but my general feeling is – why change something that is working? At the moment I get my pills for nothing from the Melbourne Sexual Health Centre which only involves three visits a year so I can't see I'd be any better off with regular injections from my doctor.”

As you can see, there are several factors to weigh up when you consider if a new treatment is right for you, including injectables. Other formulations of long-term injectables are in development which may extend the injection schedule to a twice a year routine. The bottom line is that people living with HIV now have more options which we can consider to improve our experiences of treatment.

You can find out about the full range of side-effects and safety information at cabenuva.com Pictured: Bernadette at Coventry House. Photograph: Tom Herbert.

What do antiretrovirals have to do with my weight?

by Professor Jenny Hoy

As summer approaches, it is easy to become more critical of our bodies.

Think of how common it is to hear about being ‘summer body ready.’ This talk is so normalised that we can lose sight of whether achieving body standards actually contributes to our health and wellbeing.

People living with HIV have the added complication of trying to understand the influence of treatments on body weight – a phenomena that has been widely reported but which there is still much for science to learn about.

So, what does the evidence say?

The use of HIV medications, particularly the integrase inhibitor class (dolutegravir/bictegravir/elvitegravir – known as their trade names of tivicay, triumeq, dovato, biktarvy, genvoya) and the new formulation of tenofovir – tenofovir alafenamide or TAF have been associated with weight gain in many clinical trials and cohort studies. These drugs now make up the majority of HIV regimens used today. This is because they are easy to take (usually 1 or 2 pills once a day), they have very few side effects and are highly effective at keeping the amount of HIV in the blood at extremely low (undetectable) levels.

For people diagnosed with HIV more than 15 years ago, when the treatments involved multiple pills taken several times a day and had major side effects including nausea, diarrhoea and poor appetite, the newer medication is so much better tolerated and a welcome relief.

It is important to understand that the association of weight gain with the use of integrase inhibitors or TAF does not always equal causation – i.e. these drugs are causing the weight gain. Let’s look at a couple of scenarios.

When someone is diagnosed with HIV at an advanced stage their own immune system is trying to control HIV, causing increased inflammation, constitutional symptoms of weight loss and diarrhoea. Starting HIV treatment containing an integrase inhibitor and TAF will control the replication of HIV and allow the immune system to recover. This is called “return to health.” The weight gain back towards that person’s normal weight is not “caused” by the integrase inhibitors/TAF but is associated with their use, as the body is allowed to recover from uncontrolled HIV infection.

Another scenario of weight gain occurs when people switch their HIV treatment to one of the newer regimens containing the integrase inhibitors and TAF. Studies showed that people gained weight when switching from the older formulation of tenofovir – tenofovir disoproxil fumarate (TDF) and efavirenz. We now know that TDF and efavirenz caused appetite suppression. Stopping these drugs allowed people to have a normal appetite and eat more. Again, it is not the TAF or integrase inhibitors “causing” the weight gain – it is likely that stopping TDF and efavirenz allowed weight gain to occur – this is another example of association but not causation.

Some of the original signals of weight gain with integrase inhibitors and TAF came from randomised controlled trials, performed in Africa in people who had not taken HIV treatments before. Everybody gained weight in these trials, but people who were randomised to the integrase inhibitor and TAF gained the greatest amount of weight, with those on an integrase inhibitor plus TDF gaining less, and those on efavirenz and TDF gaining the least amount. And women gained more weight than men in these studies. So clearly weight gain does occur with these drugs.

There are missing pieces of the puzzle of weight gain and HIV treatment. First, usually when a drug causes a side effect, the mechanism for how it causes that side effect in the body can be established – but despite a lot of effort, no such mechanisms have been found to date as to how integrase inhibitors and TAF cause weight gain.

Second, if the drug causes the side effect, stopping the drug should mean the reversal of that side effect. Again, cohort studies and randomised trials of switching the TAF and the integrase inhibitor to an alternative ART regimen have not been associated with loss of the weight gained.

Photo: Adobe Stock - Understanding if your weight goal is motivated by improving your health or achieving body standards may help you to notice self-critical thoughts connected to your appearance.

Weight gain and loss are complex issues for anybody, not just people living with HIV.

Body weight alone does not give a full picture of a person's health. Depending on whether body weight comes from fat and where it is distributed it can increase the risk of heart attacks, high blood pressure, strokes, diabetes, fatty liver, and cancer. Once we gain this kind of weight, especially as we age, it is very difficult to lose. Understanding if your goal is motivated by managing these risks and improving your health or achieving body standards can help you to notice judgment and self-critical thoughts connected to your appearance.

For the overwhelming majority of people starting or switching HIV treatment to an integrase inhibitor and TAF, the weight gain is not excessive and usually amounts up to a couple of kilograms only. For the sake of well tolerated one-pill once-a-day HIV treatments that very effectively control HIV to undetectable levels – I would not be suggesting people worry about weight gain of just a couple of kg when choosing their initial HIV regimen. There are, however, a very small minority of people who gain significant amounts of weight when starting HIV treatment – up to 10 kg in a year, who will need assistance in managing their weight.

There are many other situations where weight gain can occur. We have just come out of significant “lockdowns” with COVID, where people were eating more, drinking significantly more alcohol, and exercising less. Alcohol intake can be a significant cause of weight gain that we sometimes forget. Also, as a health care provider, I have been imploring any of my patients who are still smoking to quit. We know people with HIV have twice the risk of heart attacks compared to the general population, and smoking is contributing to that. When people quit smoking they tend to gain weight. The same applies to cessation of recreational drugs, especially amphetamines.

It is important to be guided by the evidence when tackling weight loss. A nutritious diet combined with a moderate amount of exercise is the best proven method to maintain a healthy weight. The combination of the two is more effective and sustainable than either diet which severely limits calorie intake or extreme exercise. Sometimes we can overestimate the effectiveness of exercise to tackle weight loss alone and then eat excess food. While overly restrictive diets can be tough physically and mentally, leaving us with little energy to do the things we like or motivation to stick with the diet.

It can be better to think of eating and food as ways for us to find nourishment, pleasure and health rather than as a diet calculated to impact body shape and weight. Any movement is good for you and will make you feel better. This includes things that you enjoy doing or can easily fit into your routines.

As we approach the New Year, and our propensity to make New Year's resolutions around healthier lifestyles including better diets, less alcohol, and more exercise to effect weight loss, it is important to remember not to punish ourselves when our resolve falls through. Yo-yoing between strict diets and extreme exercise, and then excess food and alcohol is not good for us. Slow and steady gains in healthier lifestyles, with the occasional treats, are kinder, and will allow you to feel better about yourself, and improve quality of life for the long term.

Photograph: J Davies Studio. J is a multidisciplinary takataapui artist whose work archives contemporary queer life in Naarm. Their photographic book Half of My Whole Life Was Just a Dream is available for purchase now.

Cover: Peter Maloney, Untitled, 1995, mixed media on paper, 73 x 55 cm. Courtesy the estate of the artist and Utopia Art Sydney

Peter Maloney (1953-2023) was a queer artist and activist whose practice drew widely from painting, drawing, printmaking, photography, performance and sound. Peter was diagnosed with HIV in 1984. His work in the following decades reflected his experiences of love, loss and place in the Sydney gay community during the AIDS crisis. Peter is remembered for supporting a broad community of friends and peers through teaching later in his career. He died in September 2023 of late-stage liver disease, however, thanks to the effectiveness of antiretroviral medication he lived a long and full life with an undetectable viral load.

Poslink is the newsletter of Living Positive Victoria and provides readers with the latest HIV treatment and service information, personal stories of living with HIV and helpful advice on maintaining a healthy lifestyle. Click here to subscribe and read previous issues. Poslink is always seeking writers to share their personal stories or expert advice with our readers. If you are interested in becoming a writer please email info@livingpositivevictoria.org.au

ISSN 1448-7764