When I was a child, in the space of a few years, each of my grandparents died, all in their seventies. So, I assumed that all people lived until their seventies. Then, over thirty years ago, I was diagnosed as HIV-positive and the expectation of my longevity was shattered. I was a single mum with a toddler, and I was told that I would probably have five to eight years to live.
And here I am. In my seventies, still here!
After my diagnosis, I never imagined I would grow old with HIV. I am certainly luckier than those who were diagnosed only a few years prior to me. Before antiretrovirals (ARVs), I lost over 100 friends and colleagues. When ARVs first became available, I was sceptical because I saw many of my gay brothers experiencing side effects of projectile vomiting and diarrhea. And then non-nucleoside reverse-transcriptase inhibitors became part of the HIV drug cocktail. By then, at the end of the nineties, I had 40 CD4 cells, and my viral load was over four million. I started ARVs, and I have never looked back. My immune system is now robust and my viral load is undetectable.
In 2000, within a few months of starting my HIV meds, I ran with the Olympic torch. This was despite being unable to run 400 metres six months prior. I completed my doctorate in public health and I began a new career as a public health consultant working in Southeast Asia and the Pacific. I conducted training in advocacy, carried out research on HIV-related discrimination—particularly as it affected women—and helped to reform health policy in Indonesia, which had recommended abortion and/or sterilisation for HIV-positive women.
Before the Covid-19 epidemic, I retired. I am now relishing my old age. I went to a painting class over a decade ago, and I now spend time oil painting as well as smashing and tumbling glass and using it with resin to create art pieces on glass. I volunteer with a women and justice organisation and I am asked to run occasional workshops for my peers. I am joyous that I actually reached my three score and ten, and am still going strong. I have some side effects from the earliest meds I was on—in particular osteoporosis for which I have six-monthly injections—but on the whole, I am as well as most women of my age. My heart has a weak left ventricle, so I become breathless easier than I used to, and that could be HIV-related, due to my genes, or heartbreak!
Susan Paxton, self portrait
Yes, I have a few scars having lived with HIV for 35 years. The biggest has been the loss of so many people I got to know and love. However, having faced the possibility that my life may be curtailed, I was given a gift: I realised life is very precious, so I made decisions not to do what other people thought I should or ought to do, but only those things that I wanted or needed to do for my son or myself.
I knew I had to take ARVs, and I am so grateful for my medication, perhaps much more than healthy people who start ARVs, because I saw that they gave me a second life. Obviously, guys who were diagnosed before me and have survived with long-term ill health, have had a more challenging journey.
Stigma continues to be a significant issue for many people living with HIV, however in my experience I found that the majority of us experience self-stigma. Yes, some people, particularly within the health industry, where we are more likely to disclose our HIV status than in other sectors, treat us differently, but they are such a tiny minority, and insignificant to our lives. HIV-related stigma has reduced enormously since HIV was first recognised and labelled.
People diagnosed today do not need to worry that HIV will impact on your capacity to live your life as fully as you did before your diagnosis. Today, growing old with HIV, isn’t the end of anything. Personally, I am simply grateful that I am still here.
One of the assets that has got me through over 40 years of living with HIV (and several AIDS-defining illnesses) has been my optimistic view of life. This has relied on numerous things: supportive family and friends who didn’t turn their back on me once they found out my diagnosis; a strong group of HIV-positive peers who shared the highs and lows of my journey; and good, empathetic doctors.
It’s been challenging to balance this with the negatives: the fears about your mortality and the loss of so many good friends along the way. No one really knew the answer to survival in the early days. While many of us ate a good diet and exercised regularly, some of the physically strongest among us were struck down by the virus, sometimes in a matter of months.
So, it was about surviving until decent HIV antiretrovirals came along in 1996. Protease Inhibitors at first, followed by the NNRTIs and the Integrases have saved the lives of us long-term survivors. But as the first generation to have aged with this difficult virus, we are now in tricky territory.
Many long-term survivors are experiencing age-related conditions ten to fifteen years sooner than the average person. This is due in part to the lack of treatments early, but also on the underlying inflammation we know the virus is capable of.
My own experience suggests that this is what is happening to me. Many different parts of my body show signs of wear and tear. As I write this, I am struggling to type because of osteoarthritis in my wrists. Some days, walking is a challenge because of the same problem in both my knees. I have five different specialists: heart, gastro, diabetes, renal, and of course infectious disease. It’s clear I live a very medicalised existence.
I was charged with writing this to provide some wisdom and encouragement to younger HIV-positive readers as they face their elder years. I fear I may not have done the greatest job. But most of you will not have had the same exposure to the virus as I and hopefully will have started your treatments after the mid-90s. If so, you have a good chance at longevity and quality of life.
You need to monitor your health with regular blood tests and at least six-monthly HIV-specialist doctor visits. Read up on the medications you are prescribed, develop a good relationship with your pharmacist, prepare for some side-effects (weight gain might be one of these), and keep as fit and active as you can.
Get the help of a counsellor to deal with your mental health. And mix with other HIV-positive people. For me, this is the most valuable thing I have learnt about dealing with the stigma of HIV.
As much as you can, think positive about being HIV-positive.
Just as protease inhibitors were the groundbreaking science presented at AIDS1996, a ‘functional cure’ for HIV in the form of long-acting injectable antiretroviral therapy (ART) paired with broadly neutralizing antibodies (bnABs) may be long remembered as the big news from July’s IAS HIV Science Conference in Brisbane.
Statins as prevention for cardiovascular disease; and breastfeeding moving closer to U=U were other exciting announcements.
IAS2023 was attended by over 5000 delegates. The conference brought together the world’s leading scientists, researchers, clinicians, community advocates, government policy makers and pharmaceutical companies in the HIV response.
Heather Ellis presented the welcome from community speech at the HIV Cure & Immunotherapy Forum, which was a pre-meeting at IAS2023
A functional cure
Long-term injectable ART paired with bnABs was touted by some of the more optimistic HIV scientists at IAS2023 as a ‘functional cure’ for HIV.
Broadly neutralising antibodies bind to immune cells to neutralise the ability of HIV to embed itself and are made naturally in the bodies of some people after years of HIV infection. Over the last decade, scientists have figured out how to make these bnABs from proteins in the lab. They have made them even more potent, longer-lasting and effective on the many different strains of HIV in circulation. These lab-produced bnABs are non-toxic, have the potential to be produced in low-income countries, and may be self-administered. However, they are eventually washed out of the body and repeated infusions are needed.
Researchers see people with HIV receiving an infusion of bnABs paired with long-term injectable ART once or twice a year for a few years until the person’s own immune system learns how to stop HIV rebound as it emerges from the HIV reservoir, which would ultimately be cleared.
Research presented touted that this combo was highly possible as a functional cure, with the promise of finding a pathway to a cure and a vaccine in future years. But there was also hesitation. This is partly, because bnABs don’t work for everyone, especially those with well-established HIV reservoirs. More research is needed to have the therapy individualised. For those people diagnosed very close to HIV transmission, using bnAB infusions with long-term injectables, prior to the HIV reservoir being established was discussed as a promising strategy.
This groundbreaking science is still very much experimental with major clinical trials continuing globally, including in Melbourne. If you are interested in being part of a trial visit the Victorian HIV Cure Database . For the latest on HIV cure science visit HIV Cure.
The future of HIV treatment
This combo of long-acting injectable ART paired with an infusion of bnABs had many scientists excited about it as the future of HIV treatment. Researchers presented findings from recent clinical trials that show HIV suppression can last 12 months on average, and up to 18 months in a few cases. And for the lucky few, viral rebound did not occur. However, these people referred to as post-treatment controllers (PTC), may have achieved their PTC status regardless. The reported rates of PTC ranged from 10 to 30 per cent from those who took part in clinical trials. The next step for researchers is to look deeper into the mechanisms behind PTCs and their innate ability to clear the HIV reservoir including how they produce their own highly effective bnABs.
This combo of bnABs and ART injectables, as the future of HIV treatment, will be life changing for people with HIV, especially for those who fear disclosure as they no longer need to hide pills. For others, who may struggle to remember to take daily pills, there would be no more adherence worries. Adherence leading to drug resistance is a growing problem in many low-income countries – a fact that was often mentioned by researchers in their presentations on long-acting injectables. For those people with HIV who travel regularly or for months at a time, it will mean no more carrying bottles of pills and hiding medications from border authorities. However, while the long-term injectables paired with bNABs breakthrough is very promising, it is still only available in clinical trials which are continuing globally, including in Australia Talk to your HIV doctor if you are interested in being involved in a clinical trial of long-acting medication.
In Australia, people with HIV have access to injectable ART in the form of cabrotegravir paired with rilpivirine, which is a two monthly injection. It is only suitable for those people without drug resistant HIV—often those diagnosed in recent years. However, the long-acting injectable ART, lenacapavir, administered twice-yearly, suppresses HIV even for those with multi-drug resistant HIV, and is scheduled to be available in Australia in early 2024.
Insights into the HIV reservoir
There were many presentations on research that dived deep into the immune cells where latent HIV persists as the HIV reservoir. Findings presented showed just how smart HIV was at hiding inside the DNA of immune cells to avoid detection. While the outlook is decidedly pessimistic, scientists have gained a deeper understanding of the mechanisms used by HIV. Some researchers also presented findings on lessons learned from the science behind medicines and therapies used to treat other diseases and how this science can be applied to HIV. The blood cancer medication venetoclax and the use of liposomes as an immunotherapy to reduce inflammation in rheumatoid arthritis, which is still in experimental stages, were presented by researchers.
Statins to protect cardiovascular health
Another breakthrough at IAS2023 was the findings from the global seven-year REPRIEVE trial on the use of statins as prevention of cardiovascular disease for people with HIV at low to moderate risk. Not only do statins reduce cholesterol, but also low-level inflammation which occurs even when viral load is undetectable.
This research is a huge break-through for people with HIV, especially as we age as it is well known we have a higher risk of cardiovascular disease as a result of this inflammation. And this is especially true for women with HIV and the additional inflammation that comes with menopause. Women made up 35 per cent of the REPRIEVE trial, which enrolled 7769 people with HIV aged 40 years to 75 years. Findings presented showed the important benefit of statins for women and men with HIV. The trial, which closed early as there were no safety issues and the benefits outweighed any risk of prescribing statins, used pitavastatin, which is a moderate intensity statin and is suitable to use with ART. Some of the side effects of statin use is muscle-related aches and weakness, but in the study these side effects were mostly mild and only one per cent of participants withdrew due to these side effects. While pitavastatin is not yet available in Australia (release is due in early 2024), other statins that can be used with ART and give the same cardiovascular protection are available. Talk to your HIV doctor about whether or not statins should be part of your HIV treatment. Scientists at IAS2023 also presented emerging research that showed the potential of statins to help support ART in controlling HIV. But this science is still emerging.
Breastfeeding moves closer to U=U
Breastfeeding also moved a step closer to U=U (undetectable equals untransmissible) with the presentation of the updated WHO policy brief, which is key to supporting those countries where mothers with HIV are not supported to breastfeed and their only infant feeding option is formula. Formula is often expensive with supply issues in many low-income as well as high income countries. The term used in this presentation was ‘negligible’ risk of HIV transmission when the mother is on ART with a sustained undetectable viral load and is supported by healthcare providers.
However, in many low-income countries, viral load testing is not widely available as it is in countries like Australia so there are limitations in knowing if the mother has an undetectable viral load. Researchers, clinicians and community all called for this lack of viral load testing to be urgently addressed not only for breastfeeding mothers and their babies but all people living with HIV to identify viral load rebound from drug resistance, which is often related to adherence issues. WHO researchers also presented findings that showed limited mixed feeding did not present any increased transmission risk. However, scientists called for more research into the impact of ART consumed by the baby via breastmilk over six months and 12 months of exposure.
Based on strong evidence from trials, researchers also announced that when a mother has an undetectable viral load and is on ART then PEP for newborns may not provide any additional benefit and is likely to be no longer necessary. They called for present guidelines globally to be changed. WHO are now updating their guidelines on breastfeeding for mothers with HIV, which are due to be released in early 2024. Talk to your HIV specialist who can advise you on these new findings with regards to PEP for newborns and the safety of breastfeeding.
HIV Community Collaborations:
A key theme in many of the sessions presented at IAS2023 was the importance of collaboration between community, scientists, clinicians, business and government in HIV science research design and implementation to end the HIV epidemic and eliminate AIDS by 2030.
A number of pre-conference sessions highlighted these community collaborations with several key events held:
Positive people have a long history of involvement in research. Indeed, we wouldn’t be where we are today without the positive people that came before us, who participated in research even though they were sick, even though they often knew that research would not benefit them personally. Because of them, we are in a position where the end of HIV transmissions is a possibility, and I can’t think of a better example of the power of involving communities in research about them, than our research into HIV.
What seems obvious to us today is that people with HIV have directly experienced the factors that make individuals and communities vulnerable to HIV infection. They have first- hand experience of HIV, of HIV stigma, of HIV related illnesses, of the reasons why the HIV prevention message doesn’t always work, and they’ve developed strategies for managing these things.
So now it almost goes without saying that our involvement as equal partners in programme development and implementation has improved research outcomes, and indeed, improved our response.
They have first- hand experience of HIV, of HIV stigma, of HIV related illnesses, of the reasons why the HIV prevention message doesn’t always work, and they’ve developed strategies for managing these things.
But it wasn’t always this way. There was a time when scientists, researchers and doctors consulting with non-clinical people on the process of a clinical trial, for example, was seen as hugely radical.
This idea, of involving people with HIV in the response, is a concept that dates back to foundational documents like the Denver Principles and the Ottawa Charter. It’s modern incarnation is MIPA – the meaningful involvement of people with HIV.
These documents can be summarised as calling for four things:
A recognition of the important contribution that people with HIV make to the HIV
A space to be created for that
That positive people are supported to fill that space by building their capacity so they can fully participate.
And the creation of HIV-supportive political legal and social
But it wasn’t always this way. There was a time when scientists, researchers and doctors consulting with non-clinical people on the process of a clinical trial, for example, was seen as hugely radical.
In a research context, what this requires is involving positive people at the earliest opportunity and sharing power and control of the study with them – all the way through – to the finish.
By working with communities, to set the research agenda we ensure that what is researched is relevant, and so has the greatest chance of success.
By involving the community in the design and implementation of research projects we ensure that research is safe and respectful of their needs. We also maximise the potential for positive involvement.
And by involving people with HIV in the interpretation of research findings we help ensure that data is not misunderstood in ways that obscure the truth and stigmatise HIV.
There remain a number of areas that we are yet to fully understand where the knowledge of people with HIV will be crucial to our success if we are to end HIV in Australia
In a research context, what this requires is involving positive people at the earliest opportunity and sharing power and control of the study with them – all the way through – to the finish.
Firstly, adhering to treatments over an entire life with HIV is not just something that ‘happens’. It’s a struggle. It’s a daily challenge. It’s a thing that positive people have worked incredibly hard to achieve. There’s an enormous amount of work behind that 95% indicator that says merely ‘more people with HIV are taking treatments’. By bringing an understanding of this mountain of invisible work that positive people do every day to keep Australia’s HIV response on track – we will reinforce our response, reinforce our communities and take us all closer to our common goal.
Secondly, the perspective of the HIV positive community is vital to understanding what the end of HIV actually looks like. There is a risk that once we hit the elimination target we think we’ve won, that the job is done and we can all go home. But ‘virtual elimination’ is in-fact just the start of the long-end of HIV in Australia. Once transmissions are eliminated we have 30, or 40 years of work to do.
To maintain community viral suppression for all of that time we must understand how to maintain good quality of life for people with HIV in a world where we may only have only 91 transmissions or less per year, nationally. And the community that has the knowledge we need is, again, the positive community.
Lastly, in a pandemic where patterns of new transmissions are changing – the perspectives of migrant communities, of young people, of women and of Aboriginal people will be vital.
So we must embed MIPA deeply within the fabric of HIV related research. Engagement with affected communities must happen automatically at the earliest opportunity. We must increase the opportunity for people with HIV to influence the setting of the research agenda, to help plan and implement research design and to interpret research.
And we must preserve, at all costs, our world-leading and uniquely Australian partnership approach in which the four pillars of government, research, clinical and community come together as equal partners in the response, all with their specific role to play.
This article starts on a hopeful note, however, even when we consider that only 75% of this subsample report that they are daily smokers, this still places people with HIV at a considerably higher rate than everyone else (an estimated 10.7% of the Australian population over 18 are daily smokers).
Living with HIV can lead to ways of managing stress and we all know that tobacco smoking is one of them. We also know how difficult it can be for some people to give up cigarettes and we have known for many years the links between cardiovascular disease, smoking and HIV (read more). Both Living Positive Victoria and Queensland Positive People have run support programs for just this reason.
An innovative study conducted in Queensland viewed success as not smoking tobacco but taking up vaping. The study was called (THRiVe) Tobacco Harm Reduction with Vaporised Nicotine: A Feasibility Trial of Nicotine Vaping Products for Smoking Cessation Among People Living with HIV.
I spoke to one trial participant who told me their story:
“I’ve been smoking since I was 15. I did it to socially integrate. When I moved to a capital city from a regional city you could smoke in clubs and cafes and a lot of my friends from the queer community were smokers. There was a social acceptance and I enjoyed doing it for stress relief and to concentrate and it was easy to have a social interaction when you did not know people.
By the time I hit 30, I had been smoking for half my life. I started getting bad asthma and chest infections in the winter. One year it was so bad I started looking into vaping. I investigated the evidence because I was interested in what was going on.
There was easy access through the black market, but I really got introduced into vaping through a cross-over trial called CARP
The two arms were a range of nicotine replacement therapies. Participants were randomised to either an intervention arm—vaping plus patches plus Quitline—or a non-intervention arm– patches, gum, mouth sprays and Quitline. After three months or six months, if people in the non-vaping arm were able to quit tobacco they were switched to the vaping arm.
What I liked about this trial was how transitioning to vaping was regarded as success. I did relapse once but resolved that by getting patches (on prescription at the time – three months for the costs of one month) and then using vapes from the local tobacco shop because it was convenient at that time.”
Earlier this year, I ran into Dr Alex Wodak at a social event. Many of you will know Alex as a long-term ally and progressive thinker in the AoD space. Alex told me how he has been advocating for vaping as a safer alternative to smoking. He explained that among advanced democracies, Australia is the most hostile to vaping.
Politics and the machinations of big business aside, he made the point that people taking medication for HIV are at greater risk of premature death from heart disease. And having compromised lungs does not help anyone.
I asked Alex if he would be prepared to answer questions from our community on vaping. He agreed and so I reached out to you.
Dr Alex Wodak, Dr Colin Mendelson and Dr David Bradford compiled the following answers to your questions.
What are the potential harms of vaping and how do they differ from the specific known harms of cigarette smoking?
Cigarette smoke contains about 7,000 chemicals in high concentrations including 70 carcinogens (cancer causing chemicals). It also contains tars and carbon monoxide.
Vaping aerosol contains 100 to 200 chemicals, and those present are mostly at less than 1% of the concentration in cigarette smoke. There are no tars and little if any carbon monoxide.
The blood or urine of smokers has higher levels of biomarkers (like the chemicals found in cigarette smoke) than the blood or urine of people who vape but no longer smoke.
21,000 Australians die prematurely from smoking every year, mainly from cancer or heart and lung disease. Up to two of every three long-term smokers will die from a smoking related condition, losing on average 10 years of life. Vaping took off in about 2010 and there are now about 82 million people vaping nicotine in dozens of countries.
So far there has not been one scientifically reported death from vaping nicotine.
Are the harms different if someone has reduced lung capacity or a pre-existing lung function issue?
The harms are no different if someone has reduced lung capacity or pre-existing lung function issues. In fact, they have more to gain. People with respiratory symptoms often report less severe symptoms or even disappearance of symptoms after switching from smoking to vaping. Measurements of lung function often improve. Studies have shown improvements in asthma and COPD (emphysema) after switching from smoking to vaping and fewer chest infections.
Why is it important for me to engage with my GP about vaping as an option when other attempts to quit have not been successful?
To start vaping legally in Australia you must ask your General Practitioner to write a prescription for nicotine. Only 8% of Australia’s 1.3 million vapers have a prescription and 92% purchase and use vaping products illegally without one, mostly online from overseas or from the black market.
Only 2% purchase nicotine liquid with a prescription from a pharmacy, the government’s preferred method.
Should I just buy any vape device and cartridges at the local tobacconist?
The best place to buy a vape device is from a vape shop. Vape shops have a wider range of products and can give expert advice on what to buy and how to use it safely. However, vape shops cannot sell nicotine, and most people purchase nicotine from overseas websites, mainly in New Zealand. The most popular starting devices are prefilled pod devices or disposables.
Experts agree vaping is substantially less harmful than smoking, but it is not risk-free. If vaping exposes users to fewer toxins and at lower levels than smoking cigarettes what are the risks, then?
In the short term, some people develop a cough, sore throat, nausea, or headache. These symptoms usually disappear in a week or so. It is most unlikely that serious risks will ultimately emerge because of the dramatic reduction of chemicals in vapour compared to smoke.
Vaping has now been around for over a decade and so many people are now vaping and serious harms from vaping are extremely rare. That’s not what you read in the newspapers or hear on radio or television, but Australia’s media is very partisan and hostile to vaping.
It is true that we cannot say what the precise long-term effects of vaping are. What is clear is the long-term harm from vaping is only going to be a tiny fraction of the harm from smoking.
What is safe to use? There are lots of black market vapes out there. Money will be a deciding factor for some when deciding to switch.
As you would expect, black market products are not tested for quality or safety and are not recommended. However, the ones tested so far are still far safer than smoking. Many people start with black market brands such as iGet, HQD and Gunpod and then switch to regulated brands once they have successfully quit or cut down.
I am someone who has never tried to give up smoking cigarettes. I have smoked for 30 years. The only times I stopped was when I was in hospital for lung cancer.
I have tried vaping. It is very strong stuff. To draw from a cigarette is easy and something I enjoy. But vapor is much stronger on my throat, and I do not like that feeling and in fact I cannot do it.
I am not convinced because I don’t think we know the actual content in the vape and so therefore I question the effectiveness on people and vulnerable communities of moving towards the use of vapes.
Black market vapes are very strong and often quite harsh. You should consider trying a regulated vaping product at a lower nicotine concentration, perhaps at 2-3% nicotine. Most vapers say they enjoy vaping as much or more than smoking once they find the right device, flavour and nicotine concentration for them.
Many regulated vaping products have had their emissions tested and we do know what they release. Toxic chemicals are mostly in extremely small doses. The evidence is now clear that vaping is an effective way to quit. It doesn’t work for everyone but is more effective than any other quitting aid. Smokers from vulnerable communities have more to gain from quitting and many have succeeded with vaping.
I am worried that the availability of vapes is too wide, particularly to children, teenagers, and young people. I feel they encourage young people to take up vaping. I’m a mother, that’s why I’m asking this question.
No one wants young people to vape, even if the risks are small. Breathing fresh mountain air is always going to be safer than vaping. Vaping should only be for adult smokers who want to continue enjoying nicotine or the smoking ritual but at a fraction of the risk, or smokers who want to quit smoking. Australia’s problem with so many young people vaping is a product of our large and rapidly growing vaping black market and the black market is a product of a ridiculously restrictive policy on nicotine vaping.
Most vaping by young non-smokers is experimental and short-term and causes little harm. Regular vaping is largely confined to current or former smokers.
Very few doctors are prepared to prescribe nicotine, very few pharmacies are prepared to dispense nicotine for vaping and very few smokers want to go to doctors and chemists for nicotine for vaping. The idiocy of Australia’s policy is that the availability of vaping, at least 95% safer than smoking, is highly restricted while deadly smoking is readily available.
Does the cancer council support vaping?
Most health charities in Australia, including the Cancer Council, believe that smokers should just quit smoking and nicotine completely and vigorously oppose vaping. However, their counterparts in the UK and New Zealand strongly support vaping nicotine for smokers who can’t otherwise quit. This makes no sense as the cancer risk from vaping is less than 0.5% of the risk from smoking.
Vaping rates are lower in Australia than many other western countries. A decade ago, Australia’s smoking rate was lower than in the UK, US or NZ, but now it’s higher. It’s likely that the difference in vaping rates has played a substantial role in the greater decline in smoking rates in UK, US and NZ compared to Australia. Other countries use different forms of tobacco harm reduction, with Sweden and Norway using snus, and Japan using heated tobacco products.
I have heard that vaping will only be available by prescription soon does this mean that it will become cheaper if I have a concession card?
In Australia, a prescription is currently required to vape legally. It is very unlikely that vaping products will ever go on the Pharmaceutical Benefits Scheme and be subsidised by the government. However, vaping is around 10-15% of the cost of smoking and there is a huge financial benefit in switching for people on low incomes.
Could you explain what harm reduction means in this context?
Tobacco harm reduction means we concentrate on trying to reduce deaths and disease from tobacco by encouraging smokers to switch to less dangerous ways of using nicotine. Almost half a century ago, Professor Michael Russell in the UK said, ‘people smoke for the nicotine but die from the tar’. Vaping enables people to use nicotine without tar.
Harm reduction has been used extensively to slow the spread of HIV. Condoms enable people to continue enjoying sex but with a much lower risk of contracting HIV. Providing sterile needles and syringes while collecting used injection equipment enables people who want to continue injecting drugs to do so but with minimal risk of blood borne viral infections including HIV.
Does vaping have any other consequences in terms of oral health? Are there associated mouth or throat cancer risks that we need to be aware of?
Vaping has been associated with harmful effects on oral health, but much less than from smoking. Numerous studies have found that oral health improves when smokers switch to vaping. There are no reports of mouth or throat cancer risks caused by vaping nicotine. A real problem in this field is disentangling the possible complications of vaping from the common and severe complications of smoking, as most vapers have previously smoked.
This article also ends on a hopeful note. My personal observation, backed up by data from Futures is that fewer and fewer people with HIV are smoking tobacco. I have noticed, at our national forums for example, that fewer people are going out for cigarette breaks.
Clearly, from the responses above there is a pathway for us to reduce the harms from tobacco inhalation while still enjoying the benefits of nicotine and associated rituals. We can talk further with our doctors and health care providers and with the information provided from the experts above make our own decisions about the best ways forward.
Dr David Bradford has added his additional and very personal comments as an addendum to this article. We thank him for his personal honesty, and we thank Dr Alex Wodak and Dr Colin Mendelson for sharing their experience and perspectives.
Additional Comments on Vaping vs Smoking Cigarettes
– Dr David Bradford, retired Sexual Health Physician
I am no expert on vaping. However, I once was a smoker myself for about fifteen years throughout the HIV/AIDS years, It helped me cope with what was then a very difficult time for all health workers, and especially gay ones like myself. I know how extraordinarily difficult it is to give up smoking cigarettes, even when very strongly motivated as I was (because I was a doctor and knew how stupid it was and what damage it was doing me).
I eventually only stopped smoking around about 2000 by using alternative sources of nicotine: patches and gum.
I am strongly in favour of ANY harm reduction methods. I have seen them work not just in theory, but in everyday practice. I think of the effectiveness of condoms and safe sex; I think of the effectiveness of needle and syringe programs; I think now of the enormous effectiveness of PrEP and PEP. I am utterly convinced that harm reduction works.
We are not looking for PERFECTION; we are looking for what effectively reduces risk in the real world of real, live, everyday people.
From the current evidence, it seems crystal clear that vaping, while providing a comparable nicotine experience, is less harmful than smoking cigarettes by a great level of magnitude. In fact, as yet the evidence that vaping harms your health in any significant way, is not substantiated. Of course, doctors would rather people not smoke and not vape. But if stopping cigarette smoking is difficult (as it clearly is), and vaping is an effective and much less risky substitute (as all the evidence to date indicates that it is), then any sensible doctor would prefer that people vape instead of smoke.
That is my position, and I hope that this recommendation is endorsed and made clear to all smokers in the HIV positive community. Because cigarette smoking substantially ruins health and leads to an earlier death for everybody, but in HIV positive people that risk is greatly enhanced.
Thanks again for the information from:
Dr. Alex Wodak AM, Emeritus Consultant, Alcohol and Drug Service, St Vincent’s Hospital, Sydney, Darlinghurst, NSW, 2010, Australia. Chair, Australia 21. Director, Australian Tobacco Harm Reduction Association. Ambassador, Harm Reduction Australia.
Dr Colin Mendelsohn MB BS (Hons) who graduated as a doctor from the University of Sydney in 1976 with honours. He worked as a general practitioner for nearly 30 years, with a special interest in smoking cessation. Colin is a member of the Smoking Cessation Guideline Expert Advisory Group that develops the RACGP Australian national smoking cessation guidelines.
Dr David Bradford who graduated as a doctor in 1965, he has led a remarkable life. As a gay man and sexual health physician when HIV first arrived in Australia, he cared for hundreds of patients. In his biography’, Tell Me I’m OK, he recounts a poignant memoir of care during that crisis.
In 2021, NAPWHA held consultation activities to give us a clearer picture of what drives good and bad quality of life for people with HIV. A surprising picture emerged. It seemed there might be a connection between meaning and belonging — a relationship between the stories people feel able to tell, and their sense of being connected and supported in their social world.
Greg Kelly at his book launch for “Start With Your Own Onion” in Sydney Nov 2022.
Before each workshop I would call participants to ask some preliminary questions. This gave me a sense of what stories participants can share — and what topics might be too painful to cover. Some participants who ended up having the most powerful stories found this process surprisingly difficult.
One participant, Greg Kelly, interrogated me at length on why I thought he might have something to share. Yet, on the day, Greg spoke powerfully about living with accumulated trauma, grief and loss from the early days of HIV. I felt bad having to move on to the next speaker when it was clear there was so much more to say. (Greg later spoke at our AGM, and copies of his autobiography, Start with Your Own Onion, are available to purchase from QPP.)
In the second decade of the epidemic, HIV organisations offered grief and loss workshops for people living and dying with HIV and people who cared for them. But trauma is a different substance from grief and loss. Trauma is experience that stubbornly refuses to become a memory, insisting instead on being relived. This can happen through flashbacks — re-experiencing the event in a way that intrudes on the present — or less obvious symptoms like dissociation, anxiety, nightmares, and persistent changes in worldview.
“Trauma is experience that stubbornly refuses to become a memory, insisting instead on being relived.”
People with post-traumatic stress disorder (PTSD) often go to great lengths to avoid any reminder of traumatic experiences. For people living long-term with HIV this can include telling stories of the early days of the HIV epidemic. But many who lived through those years feel a profound obligation, as ‘the last of their number,’ to remember the dead and to recall both the dark times and the community response to the crisis. Many are feeling the loneliness of having stories that cannot be told and will not be heard.
This points to the importance — but also the difficulty — of creating opportunities for ‘HIV elders’ to share their stories while being supported in grappling with the symptoms this can trigger for them. In the long run, turning traumatic experience into a story can be therapeutic — it can mean you remember the story rather than having to relive the experience. But if the initial story-making process goes badly, it can be re-traumatising instead. This is complicated terrain and HIV organisations need to tread lightly. It is vital that our activities are culturally safe and trauma informed.
Feeling able to tell your story is only the first part of the equation — the second is feeling sure you can be and will be heard. HIV organisations have a crucial role to play in curating cultural events that allow diverse people and groups to develop the skills they need to hear and engage with HIV histories. We train people with HIV in public speaking, but I don’t think we recognise that every presentation by a positive speaker is training an audience in public listening. Public listening skills are necessary to make it safe for HIV elders to tell stories of traumatic experience, stories which rarely fit into a neat, linear timeline, often involve tangents, and stop and start as emotion momentarily takes over.
Greg’s story illustrates this. You can watch Greg’s contribution to the 2022 Beyond Resilience virtual congress on Youtube.
I started our interview with an easy question — why did you write your book? Almost as soon as he’s begun talking, Greg interrupts himself, to acknowledge the hundred-plus friends and lovers who died horrific deaths from AIDS. ‘They tried every experimental treatment possible, and the resulting knowledge gained by science is the reason I and we are here today.’ He changes the topic again: ‘one of the things I’ve noticed on social media, which I find of dubious merit, is the rewriting of history. I’ve been called by gay men a liar, for some reason lived experience isn’t validated, from my observations…’ Regarding the book, Greg says ‘It was very important for me to connect my story, essentially it was going to be for my 12 nieces and nephews, but it did have a broader approach, essentially, as a long-term person with HIV whose career was taken away from me — nobody ever wanted a vomiting diarrhea chef! So, my recipes were connected to my beautiful friends who have gone away so it was very important for me to capture what I had, because many of those people didn’t have families — their family was their small network of friends who organised their last wishes, their funerals and all of that sort of stuff…’
This isn’t easy to follow but we should not expect these stories to be easy. Greg is telling two stories simultaneously — the top layer is about how and why he wrote the book, but a second layer of narrative keeps bubbling up through it: the story of the friends he lost, their desperate fight for survival, and the debt he feels to them, as well as the career he gave up and his uncertainty about being heard and valued in the present.
“This isn’t easy to follow but we should not expect these stories to be easy.”
My sense is that young queer people today have a hunger to learn about HIV histories. That comes from my engagement with young queer people through my social media presence, my activism on PrEP and HIV stigma, and the PhD I am completing on the U=U movement. Everything is relative, of course. I’m comparing the young people I meet today with my own generation, which came out in the 2000s, when the public considered HIV a problem ‘solved’ by combination therapies.
The only time we saw HIV in the news was when AIDS councils were being castigated for rising diagnosis rates, or worse, when people with HIV were under prosecution for wrongful transmission. That generation could not have been less interested in hearing about the ‘bad old days.’ So, if HIV elders think young people are uninterested in their stories, that’s not ungrounded.
But I suspect that times have changed. While writing this article I asked around for impressions of young people’s interest in HIV. More than one person told me young people today are influenced by memories of the Grim Reaper campaign. That campaign aired in 1987. I saw it live in my living room, aged six years old, and I am now 42! Gen Z and most of Gen Y never saw it. There is an opportunity to engage young people in the history of the epidemic and this is, equally, an opportunity for HIV elders to feel heard and included. This is an opportunity we should seize before we lose more of ‘the last of their number.’
Beau Newham leads the Viral Stories project for LPV, a HIV positive storytelling night that aims to promote wider community engagement with the full diversity of experiences of people with HIV in 2023
Recent initiatives give me cause for hope. One is the Viral Stories project convened by Living Positive Victoria and led by my colleague Beau Newham. This initiative offers training to people with HIV of all ages to tell their stories — not just about HIV but about any aspect of their lives. The end product will be a story-telling night open to the public. It will challenge audience members to overcome their own fixed and frozen stereotypes of positive people and HIV lived experience. The initiative builds on smaller public story-telling circles, also facilitated by Living Positive Victoria, that allowed people with HIV to share their experiences with a diverse and supportive audience composed of other PLHIV. I have also been heartened by the strong audience response to events like Beyond Resilience and Finding Joy — webinars that emphasised personal interviews and story-telling as a way to connect with others around diverse lived experiences.
For years we have done a great job telling the story of HIV through Positive Speakers Bureaus to the general public. The time has come to build that connection between meaning and belonging — telling our own stories to our own communities of people living with and affected by HIV.
June 5th, 2023, is HIV Long Term Survivors’ Awareness Day.
Daniel Reeders is a writer, researcher, and positive health promotion practitioner. They have written for Meanjin, Overland, and Inside Story.