YOUR HOST
STEPHANIE O’CONNELL
I’m a health advocate and health communicator with a career in public health and public affairs and worked alongside global leaders and some of the most prominent advocates for health and social change.
I’ve been a cardiac patient most of my life. I became a vocal vaccination advocate when my daughter narrowly survived meningococcal disease which resulted in a kidney transplant, courtesy of her sister.
And now, amidst the COVID-19 pandemic, in a new podcast series I explore all things vaccination, from the latest in COVID-19 to global immunisation issues affecting every community in the world.
MatterofVax episodes
MatterOfVax explores the issues surrounding patients, caregivers and community on the topic of vaccination, COVID-19 risks and staying safe.
We all need to vaccinate, but for patients and caregivers particularly, the matter of vaccination can be a little more complex.
How can you navigate the maze of messaging around vaccination?
In this series, you will hear from the people walking the walk; patients, caregivers and community members and get answers from medical experts.
We will explore some of the myths and go beyond the current pandemic to explore more vaccinations. Some, we are familiar with and others we need to keep up to date with for our own health and that of global public health security.
Join GHLF Australia as we ask why vaccination is a matter for all of us to understand now.
Let’s talk; long COVID, flu and what’s next.
Dr Anthony Byrne
In this episode we meet Associate Professor Dr Anthony Byrne, a thoracic physician at St Vincent’s Hospital in Sydney and a researcher at the University of New South Wales.
Two years and three variants of concern into the pandemic, I asked Dr Byrne, what is long COVID, who are the most vulnerable and with surging cases of Omicron, what’s next?
Finally, we find out what people with chronic diseases should be doing to manage their health and their risks right now.
Dr Sacha Richardson
Host: Steph O’Connell
Guest: Dr Anthony Byrne
This show is introduced to you by Global Healthy Living Foundation.
The Global Healthy Living Foundation is a non-profit working to improve the quality of life for people living with chronic conditions through advocacy, education and patient-centred research.
We wish to acknowledge the Darkinjung people as traditional custodians of the land on which I live and work. I pay respects to the elders past, present and future.
Steph:
Welcome to a MatterofVax. This episode, we meet Associate Professor Dr Anthony Byrne, a thoracic physician at St Vincent’s Hospital in Sydney, and a researcher at the University of New South Wales. Two years and three variants of concern into the pandemic. I asked Dr Byrne, what is long COVID? Who are the most vulnerable? And with surging cases of Omicron, what’s next? Finally, we find out what people with chronic diseases should be doing to manage their health and their risks right now.
Associate Professor Dr Anthony Byrne is a thoracic physician with a global reputation for treatment of tuberculosis or TB. That is until now. Two years on and Anthony has spent most of that time managing COVID-19 cases and is becoming an authority on patients with long COVID. Dr Byrne told The Guardian in December that he was comfortable treating drug-resistant TB, but felt scared at the outset of COVID-19. So little was known about the disease. He’s learned a lot since then. We ask him all the right questions to help you manage in this health crisis.
Welcome, Dr Anthony Byrne. A lot has happened in the last two years. What was it like at the hospital before the pandemic?
Anthony:
Thank you. If I cast my mind back to two years ago, I was working (and still am working) as a respiratory Physician at St Vincent’s Hospital in Sydney. It’s a busy tertiary hospital. It’s a referral centre for heart and lung transplantation. And I was working on the on-call roster for thoracic medicine. We would get patients that were unwell with respiratory problems such as pneumonia, pulmonary fibrosis and tuberculosis.
I run the tuberculosis service at St Vincent’s. I did two outpatient clinics per week with patients with infection and disease related to tuberculosis — also other mycobacterial diseases. Lots of teaching of medical students and junior medical officers, registrars… [I was] involved very much with the University of New South Wales and supervising both medical students and also honour students and research year students.
So that was a busy part of what I was doing as a clinician-researcher. Treating patients in hospital and out of hospital. Private consulting rooms as well. 2019 was a particularly busy year for me travelling overseas. One of those overseas trips was to an inaugural symposium that I was invited to in Stellenbosch in South Africa — looking at post tuberculosis lung disease, which is a particular interest of mine.
I also spent time in the Solomon Islands. One of the other particular passions of mine is resource-limited settings and integrated care and improving lung health. We spent time there looking at the resources that were available in the western province of the Solomon Islands — looking at lung health.
St Vincent’s actually had a long relationship with Gizo, in the Solomon Islands, and sent a junior medical officer there for many years to help staff their emergency department. I was also collaborating, and still am, with researchers in the United States and in India. We were about to start a study looking at giving treatment for asthma and COPD in the southern part of India.
Steph:
I can’t imagine managing all of that when the pandemic began. Anthony, you said in The Guardian in December that a whopping 50 per cent of those hospitalised and 30 per cent of those not hospitalised were experiencing long COVID. What is long COVID? And how has that changed your career?
Anthony:
It’s a great question. Long COVID has now a formal definition from the World Health Organization. But it’s something, like a lot of things in medicine, that starts out with a recognition from patients and clinicians and then researchers before it’s recognised. And that’s what happened with long COVID.
Many of your listeners will probably remember that early on in the pandemic — the start of 2020, there were these reports that were initially on social media, of people that had COVID. They were unwell with their COVID and they just took a long time to recover and they seemed as though they weren’t recovering. I remember seeing posts of people with their hair falling out and having fatigue. That was termed long COVID. Largely, I think, by patients that just recognise this as obviously a new disease.
It’s not very often in a career as a doctor that you actually come across a completely new disease. And that’s what happened at the end of 2019 and, for us, the start of 2020.
It was then recognised in research. I was leading one of the researchers on the Adapt study, which is an observational cohort study at St Vincent’s. In that study — very much on the fly — we set up that study to characterise what was happening with these patients that were both admitted to hospital, but largely not admitted to a hospital that suffered from acute COVID and followed them up over 12 months afterwards.
It was recognised that a percentage of those patients had ongoing symptoms. Now, we used a definition in that study of any one of three symptoms that were ongoing beyond three months. And those symptoms that we chose were shortness of breath, chest pain and fatigue. And they were the main three symptoms that we were seeing in that population. And so, if you had one of those three, then we classified you as having long COVID.
We now have a formal definition from the World Health Organization that actually only came about in October of last year by something called a Delphi consensus — which is basically just a group of experts deciding on how to define this.
What we do know about long COVID is it’s very heterogeneous. It’s quite variable. There’s a bunch of different symptoms that people can suffer from. Common ones are fatigue, breathlessness, pains, chest pain but also some curious ones like anosmia (which is when you can’t smell), higher centre functioning (so cognitive disorders, problems of processing thoughts, thinking of words), sleep disturbance, depression, headaches, brain fog, concentration, muscle aches — there’s just a bunch of them. So basically, the World Health Organisation said, if you’ve had either probable or confirmed SARS-CoV-2 with ongoing symptoms that last at least two months — and these symptoms can’t be explained by some alternative diagnosis — then they call that long COVID.
That’s the definition that’s now formalised, and, as you said, it’s very common. In our population in the Adapt study, 90 per cent of them were not admitted to hospital. We found that 40 per cent of our patients had these ongoing symptoms that were still present at eight months. So [those that] were present at four months, about 40 per cent. Then by eight months, 32 per cent of them were still symptomatic.
In earlier studies, 50 per cent — in fact, one study from Italy, of hospitalised patients found that about 55 per cent of patients were still symptomatic after a couple of months post-discharge. Patients that we’re talking about here in our study were in their sort of mid to late 40s, on average. In the Italian study, sort of late 50s. And that’s very representative of the cohort of patients that we saw with the earlier variants of the virus. Another important point was that, obviously, this was all pre-vaccination.
So that’s a little bit about long COVID and — who are vulnerable to long COVID? Well, we know from our study that it was almost three times more likely for someone to have long COVID If they were female. So that’s quite an interesting finding. We also found that those small number of our patients that were hospitalised were much more likely, nearly four times more likely to have long COVID.
This is borne out in some of the other studies that have been published — one in Nature last year from Sudre and colleagues. They found, in their population of patients, that those that had more symptoms at the start of their illness were three and a half times more likely to have long COVID.
Increasing age was also a risk factor. They also found female sex was a risk factor, which is curious, and increased body mass index over 30. So, if you’re obese, female, increasing age, hospitalised [with] lots of symptoms, then they’re all risk factors.
Steph:
Some of those statistics are really surprising to me. I’m wondering — with Omicron, we hear the majority of the cases are mild — but are we really burying the long COVID risk in that generalisation?
Anthony:
I think there is a risk of long COVID. There are two reasons to be optimistic. One is that most of the data that I’ve just been talking to you about is in a virgin population — if you like — that are unvaccinated. And we know now that 94 per cent of our New South Wales population is double vaxxed and 92 per cent over 16 years in Australia. So, that’s going to give you protection — I’m very sure — because it protects against infection and against disease.
There are some studies that have shown that there is a reduction in long COVID — there’s a little bit of controversy about this — but a bit of reduction in long COVID in those people that are vaccinated, that are unlucky enough to get the infection.
We certainly know that if you get the infection with Omicron, Omicron has this ability to evade the vaccine and immune response, more so than delta and other variants. But, you still have this protection from hospitalisation and death. And, as we’ve just talked about, risk factors for long COVID or hospitalisation. So, if you can prevent hospitalisation, then you should be less likely to get long COVID.
The problem, I guess, is there are a couple of unknowns. One is that we don’t yet know what the long-term effects of Omicron are because it’s only been around for a bit over a month — two months — in fact. So, using the WHO definition, we don’t know anything about long COVID in anyone with Omicron. It’s a milder illness, it seems. So that’s reassuring. But, those with mild COVID can still end up with long COVID. So, there are no guarantees there at all. And more people have got Omicron.
That becomes a greater problem for public health, and a greater problem for service delivery assessments, because you’ve got a greater proportion of the population that has an infection and disease with Omicron. So even if a less percentage of people are infected, it could still be a problem.
Another big concern for parents — I’m a parent. I’ve got three children. And our concern is what happens with younger children that get COVID. We are in a situation now where pretty much no one under 12 is vaccinated. And there is some preliminary data on long COVID in kids. It does seem to be, at least with previous versions of the virus, it does seem to be much less common than adults. So, we do know that kids seem to be less severely affected in the acute stage with COVID. And it also seems as though they’re less likely to be affected by long COVID.
I think we can be optimistic, but there are still some unanswered questions that require thought and research.
Steph:
I’m wondering, what happens as we progress towards winter? We’re already hearing about flurona and the “twindemics” with flu and COVID being diagnosed together. That’s a frightening idea. What are our chances here of encountering the same thing as winter comes along?
Anthony:
If you look at the number of influenza cases historically — around the world, it’s about three to five million cases of severe cases of influenza each year — about 300,000 people die from influenza each year. But if you looked at that last year, at least in New South Wales, there was hardly any cases of influenza last year. Now, I suspect that’s going to change this year. There are more people moving from the northern hemisphere winters to our summer. And that’s going to sort of reverse mid-year.
So, there has been this case of flurona —reported in the literature of someone that was unlucky enough to get both SARS-CoV-2 and influenza virus detected at the same time. I would say that’s incredibly uncommon.
We have a test called a multiplex PCR that we do on patients that come into St Vincent’s with symptoms of respiratory viruses. We really want to know what virus it is and we test for about 20 different viruses at the same time. And I can tell you that in the last few years, the number of patients that have had two viruses detected at the same time, I could count on one hand. So it almost never happens.
I think it’s very unlikely that you’re going to get too many people getting influenza and COVID at the same time. But, within six to 12 months, I think yeah, it’s entirely possible that people can get the flu and COVID. And it’s another point about vaccination.
We all have been told about vaccination for COVID — and that’s incredibly important. But, it’s also important to vaccinate against flu. Flu is another preventable illness. Historically, a lot of people that were being vaccinated for flu were people over the age of 65 or those with chronic respiratory conditions.
Interestingly, when you look at the literature on flu vaccination and prevention of mortality in over 65s, it’s actually not as strong as what you think it would be. The interesting thing about that is there’s some unpublished data that I’ve just finished some research on, and it appears as though there’s a long-term mortality risk in people that have had influenza. And a lot of those people are young people.
So even if you don’t end up in hospital with the flu, you probably actually have an increased mortality. I think it’d be really interesting to do a study looking at influenza vaccination to prevent mortality. There’s a really strong case for getting everyone vaccinated against the flu this year, in particular, given the twin insults of COVID and influenza that are upon us.
I would also like to mention tuberculosis. When we talk about global pandemics, COVID is a really important global pandemic that’s killed millions of people. But, tuberculosis is actually also a global pandemic. And up until COVID came along, it was the number one cause of death from an infectious disease with 1.5 million people dying from TB.
Last year was the first time that TB deaths actually increased for the first time in 20 years. TB is the second most common cause of death behind COVID. So globally, TB is actually the second most important pandemic. It’s a lot harder to diagnose, it’s a lot harder to treat — takes months of treatment. In a lot of the countries that are terribly affected by COVID — in Africa, Latin America and Asia — they have this twin burden of disease, in fact, with tuberculosis.
You can imagine what would have happened to their health systems in the last two years. If you’ve got TB, and you’re sitting at home, being infectious to others and your lung function is deteriorating, then finally, you get a diagnosis if you’re lucky. That’s happening a lot around the world.
Steph:
I think tuberculosis is one of those diseases that we think of as being in medically underserved environments and in developing communities and we don’t think of it as being in our backyard. But it most certainly is. Australia has TB cases every year.
Anthony:
It absolutely is. I think what COVID does for us — there’s a bit of talk about this recently — the reason we have these variants, the reason that Omicron came along. If we have these infectious diseases, until we eradicate them everywhere, they’re going to be a problem for us for years to come. We have to really be coordinated and have access to healthcare and access to vaccines in lots of settings.
It’s been really amazing to me, in the last 18 months to two years, that we’ve been able to get these amazing treatments, these amazing vaccines for COVID. It’s really amazing that this has happened. We’ve been trying to do this for TB for a long time. And unfortunately, it speaks to the fact that COVID affects Europe and North America and TB largely doesn’t so much, at least not in the way that people see. I think that gives me hope that we — if humanity comes together — we can actually solve a lot of problems really quickly, in fact. That makes me optimistic, I think, for the future.
Steph:
When I think about Omicron I think about the chronic disease folks out there and how they’re preparing for Omicron, how they’re coping if they’ve already got a positive. What’s your advice to them now?
Anthony:
So that’s a really great question. What I’d say to people is that you need a plan. Everyone needs a plan, you know, [we] talk about a fire plan, if you live in a fire-prone area. You need a chronic disease management plan. So, I would say if you’ve got a chronic disease, you’re immunocompromised or you know, you’re elderly, you need to be; number one vaccinated, three times if you can. You need to have a chronic disease management plan with your GP, and your specialist. If you don’t have a specialist, and you’ve got a number of complex conditions, get one!
You need to know when and how you should seek care. We’re lucky now that we’ve got telephone consultations. You can get on the phone to your GP or specialist — some of them will bulk bill that, so there’s really no excuse. But, it’s not a replacement for potentially getting in and being evaluated. Because it’s really hard to listen to someone’s chest or measure their lung function over the phone. You obviously can’t do that.
I would just urge people not to delay really important stuff. That’s a really big problem. If you do get COVID despite doing all the right things and being vaccinated, then, you know, you need to have some sort of a plan.
I was listening to Claire Skinner, who’s president of the Australasian Society of Emergency Medicine, and she was talking about having a COVID management plan for people at home. So, what I would say is, if you’ve got symptoms or you are a close contact — if you’ve got a diagnosis you’ve got to self isolate for seven days.
f you’re over 55 years, or if you’ve got some complex chronic respiratory or chronic medical problems, we can actually — if we get you early enough — we can give you an injection of a medication to keep you out of hospital. A monoclonal called sotrovimab. It’s a bit hard to get and give, but we can certainly do it.
So, if you’re partially vaccinated, and you’ve got those things, get in touch with a hospital so that we can do that for you. And — a lot of GPs and other people don’t actually know — you can actually give inhaled steroids via a prescription medication called budesonide with another medication called symbicort.
That was actually given as part of a clinical trial for people over the age of 18 that had symptoms, within the first week of those symptoms coming on, and it was shown to reduce the rate of hospitalisation. And that’s just taking a puffer two times a day. So it’s really simple. And I haven’t heard anyone talking about that. But you know, that’s something that a GP could potentially prescribe to someone with respiratory symptoms that had a positive diagnosis of COVID.
These are some simple things that could be done to treat COVID at home and it’s important to have a plan. You know, you got to be prepared.
Steph:
I think there’s an opportunity here for us to all redouble our efforts in prevention. So all of the usual hand sanitising and distancing. But, most importantly, if you’ve got a chronic condition at the moment, you need to take care.
Anthony:
I think that’s really good advice. And what I try and say to a lot of the patients that are healthcare workers that I have is, you know, get a GP, get your own GP. I mean, a lot of the things that a GP can do really well is preventative medicine. And in order to do that, you’ve got to have one.
A lot of healthcare professionals are guilty of not having their own GP. I think a good message to get one and then you do have that — you know where to go and how to contact them.
Steph:
Anthony, thanks for joining us today and for all of your time.
Anthony:
You’re most welcome. Thanks to you for inviting me and, hopefully, it was useful for you and your listeners.
Talking about vaccination and your health can be a difficult conversation. Our hope is to make it easier for you to understand and communicate these important subjects to your community.
Please share this podcast with friends and family and subscribe wherever you listen to your podcasts to hear more of MatterofVax.
To learn more, please visit our website ghlf.org.au for vaccination facts, video explainers and patient stories from all over Australia. And be sure to subscribe to our news and community support from GHLF Australia.
I’m Steph O’Connell from Global Healthy Living Foundation and this is MatterofVax.
ICU during COVID-19
Dr Sacha Richardson
In this podcast, we hear from Dr Sacha Richardson, an ICU intensivist at Alfred Hospital in Melbourne.
In recent weeks, Dr Sacha has seen it all, including desperately hard-working healthcare workers coping with the relentless demand for ICU beds. We hear what it’s like for them — and what it’s like for patients admitted to the hospital with COVID-19. And We also learn about the difference between last year’s wave of COVID-19 and this year’s wave, as well as why vaccination is our best defense.
Dr Sacha Richardson
Host: Steph O’Connell
Guest: Dr Sacha Richardson
This show is introduced to you by Global Healthy Living Foundation.
The Global Healthy Living Foundation is a non-profit working to improve the quality of life for people living with chronic conditions through advocacy, education and patient-centred research.
We wish to acknowledge the Darkinjung people as Traditional Custodians of the land on which I live and work. I pay respects to all the Elders, past, present and future.
Steph:
Welcome to MatterofVax. I’m your host, Steph O’Connell.
I’m a health advocate and health communicator with a career in public health and public affairs.
In this podcast, we hear from Dr Sacha Richardson, an ICU intensivist at Alfred Hospital in Melbourne. In recent weeks, Sacha has seen at al. Desperately hard-working healthcare workers coping with the relentless demand for beds in ICU thanks to COVID-19.
I’ve got a very important question for you to start with to help us paint the picture. What was it like working at the Alfred before the pandemic?
Sacha:
Gosh, it seems a little while ago now. The Alfred’s a busy Metropolitan referral intensive care unit. We’ve got 55 beds and, to staff those 55 beds, we’ve got about 400 ICU trained nurses and 60 critical care doctors.
About a third of our caseload would be trauma from around the state. It would be car accidents and farm accidents, people falling off ladders, severe head injuries, this kind of thing. People who need critical care. And about a third would be cardiac surgical cases or complex surgical cases. These would be heart bypass surgeries, valve replacements — we do heart and lung transplant surgery as well. And then the final third would be our medical ICU. So, those would be people with pneumonias or leukemias, bone marrow transplants, severe diabetes (when it’s gone out of control) and that would fill up all of our 55 beds. We would be running at more or less 100 per cent capacity all the time.
Steph:
Can you step us through what it’s like now? The process — a patient coming in with COVID-19. They come to hospital, they’re admitted and they’re imagining that they’re transferred to ICU. What’s that process like?
Sacha:
Interesting to see the stepwise progression that occurs with COVID-19. And it should be said that the majority of people who contract COVID-19 can be managed at home and have symptoms that are a little bit like the flu. I think this is where the misnomer comes, that it’s just like the flu. But I’d say about 90 per cent of people will get flu-like symptoms and can be managed at home with panadol and nurofen and bed rest.
The problem with COVID-19 is that around five to 10 per cent of people will get more severe symptoms. And, usually, they start to struggle with their breathing and become very short of breath or minimal exertion. And that’s because of inflammation that’s occurring within the lungs. Their oxygen levels start to drop, and they need supplemental oxygen to maintain the safe level of blood oxygenation. And for them, they will come to the hospital, there’ll be found to have low oxygen saturations. And they will get admitted for supplemental oxygen therapy.
This usually occurs around about day five to seven of symptoms. And again, the majority of them will gradually get better over time. They’ll wean off oxygen and be able to go back home and will do fine.
Unfortunately, around half of them — so that’s now two and a half to five per cent of the original cohort will get worse. And despite supplemental oxygen, the lungs get more inflamed, their oxygen levels dip lower and lower and, despite really quite a lot of supplemental oxygen via nasal problems, they are unable to maintain safe oxygen levels. It’s at that point that we would consider sending them down to the intensive care and under our care, where we have more advanced forms of ventilatory support.
Steph:
Last year, Victoria went through a critical phase with COVID. And of course at that stage we’re talking about the alpha variant. This year, the wave is different. What is the difference between the two waves?
Sacha:
The alpha wave last year — you have to remember we knew much less about the disease. We had less treatments. We had no vaccinations and, really, our best line of defense was supportive care, as I’ve described before, and lockdowns as s a way of minimising social interaction and, therefore, transmission.
The last wave, particularly in Victoria, has led to over 800 deaths. It really came down to the population that it got into, so it found its way to our most vulnerable residents and it got into the nursing homes. It’s particularly lethal to people with underlying medical conditions. And as you get older, as well, with underlying medical conditions, the case fatality rate goes right up.
What’s different this year is, despite the fact that delta is actually more transmissible and it appears to actually be more lethal — it’s actually more of a dangerous virus than the alpha variants — we have protected those higher risk members of our society by vaccinating them.
We’ve vaccinated our healthcare workers who are looking after them. So that’s reducing the risk of transmission into those settings. And we’ve also developed some therapies — as well as the vaccinations, which are probably the single most important thing — we’ve discovered therapies that reduce the risk of dying from COVID.
Steph:
Hospital staff, GPs, healthcare workers across the board, we’re hearing stories about them reaching a breaking point. How are you coping? And is that what you’re seeing?
Sacha:
There’s no doubt that the system is under increased strain at the moment. And that’s all the way through the healthcare system. It should be noted that the healthcare system doesn’t have a lot of spare capacity when it’s running normally. It’s designed to run at maximum efficiency. All the beds are being used. All the staff are busy with their jobs. And so then, when you add in an extra whole load of work — COVID pandemic pneumonias — then there’s got to be some give in the system.
You may remember at the beginning of the pandemic, there was a lot of talk about ventilators. We just need more ventilators and that’ll solve the problem. What we’ve realised now is, we’ve got enough ventilators. We’ve got enough physical beds. But it isn’t just those two things that you need in order to look after somebody with COVID pneumonia. You’ve got to staff that bed with an appropriately trained nurse and a medical team.
Steph:
How has COVID-19 changed the hospital? Change you? Has it?
Sacha:
From a personal perspective, I’ve been very fortunate to work in a role where we can assist the community during a pandemic. I get to go to work. I get to earn a living. I can interact with my work colleagues in a relatively “normal” environment. I’m very aware of people who’ve had their livelihoods decimated by the pandemic. They’ve been socially isolated, staying at home, unable to see friends and family. And you know, that’s really tough. And it’s been a huge ask of the community in order to do that.
I am certain that by doing that we have saved thousands of Australian lives. And so, when this is all said and done, I think we will look back at it and be grateful for the sacrifices that have been made by the community, particularly Melbourne, but also many people in New South Wales and around the country.
Steph:
What would you say to the community?
Sacha:
I’d say that we’re all living this experience together. And the healthcare community wants to support the general community as much as they possibly can. We know — as has been proven by the numbers and the science — that vaccinations are the best way to protect yourself. It’s the best way to protect your friends and family, by minimising the chance of you getting infected, and then minimising the chance of transmission. But then, if you do get sick, the hospital system is there to protect you and to help you.
Steph:
Is there light at the end of this COVID tunnel, Sacha?
Sacha:
Well, yes, of course. It’s been a remarkable 18 months — from science and human endeavor — I would say they’ve probably been the single greatest things of the last 18 months. And that, in itself, has been pretty illuminating. In my opinion, it’s been a great moment that humans have responded to. An event like this.
So whilst COVID, I believe, will continue to circulate — and it’s possible that it will circulate in reasonably high numbers over the next couple of winters — I think it’ll then follow a similar pattern to influenza. Which is that it’ll always be there sort of percolating in the community and sort of low numbers. Occasionally, it will bubble up, typically during a winter time, and then sort of petered out. But as more and more people have got protection through vaccination and then antibodies, if they do get exposed, it’ll become less and less of a serial disease like influenza.
Talking about vaccination and your health can be a difficult conversation. Our hope is to make it easier for you to understand and communicate these important subjects to your community.
Please share this podcast with friends and family and subscribe wherever you listen to your podcasts to hear more of MatterofVax.
To learn more, please visit our website ghlf.org.au for vaccination facts, video explainers and patient stories from all over Australia. And be sure to subscribe to our news and community support from GHLF Australia.
You can also find us on Facebook and Twitter @GHLFAustralia.
I’m Steph O’Connell from Global Healthy Living Foundation and this is MatterofVax.
How do communities manage risk of a pandemic?
Professor Greg Dore
It’s easy enough to find yourself at risk in a pandemic. With more than 50 per cent of the population with one or more chronic conditions, chances are you or someone close is affected by a condition.
Managing health risks took on a whole new meaning last year. COVID-19 put many of us into lockdown or on notice. But in one of the most remarkable moments in modern medicine, vaccines were developed to speed immunity. The world began to chase COVID 19 vaccination rates of 80 per cent and above.
Daily, the Premiers, the Chief Health Officers, the Prime Minister and the Chief Medical Officer are telling us, imploring us, to vaccinate. Not just to protect ourselves but to protect “the most vulnerable”. For people living with a chronic condition, or caring for someone with a chronic condition, what will the future look like when Australia opens to the rest of the world?
Professor Greg Dore
Host: Steph O’Connell
Guest: Professor Greg Dore
This show is introduced to you by Global Healthy Living Foundation.
The Global Healthy Living Foundation is a non-profit working to improve the quality of life for people living with chronic conditions through advocacy, education and patient-centred research.
We wish to acknowledge the Darkinjung people as Traditional Custodians of the land on which I live and work. I pay respects to all the Elders, past, present and future.
Welcome to #MatterOfVax. I’m your host, Steph O’Connell.
I’m a health advocate and health communicator with a career in public health and public affairs.
I’ve been a cardiac patient my whole life. But became a vocal vaccination advocate when my daughter narrowly survived meningococcal disease which resulted in a kidney transplant, courtesy of her sister.
And now, amidst the COVID-19 pandemic, in a podcast series, I want to explore vaccination, from the latest in COVID-19 to global immunisation issues and everything in between affecting you and our communities. What is a Matter of Vax?
Not many people can say they’ve won a Eureka prize, but our guest today can. In 2020 he won a Eureka for his infectious disease research. Professor Dore is an infectious diseases physician at St Vincent’s Hospital in Sydney, Australia. He’s been involved in viral hepatitis and HIV research, care and public health policy for 20 years. We could go on about Professor Dore’s accomplishments but you need to know that last year he’s been notable for his vocal opinions in covid-19 vaccines. And I’m fortunate to have him with me here today.
Steph:
Hi, Greg. How are you doing?
Greg:
Hi Steph. I’m very happy to be here.
Steph:
You made a comment about Denmark’s COVID-19 strategies for population risk management. And you compare it to Australia and chasing doughnut dates. And you classically said, you thought Australia’s path out needed Danish, not doughnuts? What is Denmark doing right?
Greg:
Look, I think Australia was incredibly successful during 2020. We had a major second wave in Melbourne, and several hundred deaths from that second wave, but still, in the context of the global pandemic and other countries, Australia did incredibly well. And if we’d had the same population death rate as the United Kingdom, we would have had, by now 50,000 deaths. We’ve had 1000 deaths. So that gives you an idea of the scale of the benefit that public health response in Australia has brought.
But the problem with that, and the problem with achieving zero COVID across the country for a long time, and still in place in many jurisdictions in Australia, it absolutely led to a degree of complacency. It led to the notion that we’ll be able to continue to eliminate the virus, roll out the vaccine.
The famous words of our Prime Minister, who said it wasn’t a race, had come back to haunt him many, many times in recent weeks and months. I recall writing a piece in January this year and trying to get people to have a sense of urgency and trying to make the point that we needed to vaccinate the country by winter, because I was concerned about a major outbreak during winter, as we’d seen in Melbourne last year.
But we undermined AstraZeneca, a highly effective and safe vaccine that was being produced locally, by CSL. And now we’re in a situation where we’re trying to play catch up. And we’re several months behind many countries in the Northern Hemisphere. We at least have some urgency now. And I think the Delta variant has clearly changed the game and our very successful “test, trace, isolate” public health systems that could control the previous variants are unable to do that with Delta.
Steph:
So we should be confident in the vaccines for COVID-19 now and in future?
Greg:
Well, if you look at the real-world evidence, it’s been absolutely remarkable. In fact, I think some of the vaccines have proven to be more effective than they looked like in the clinical trial. So, if you think of Oxford AstraZeneca, some people were saying that it had modest efficacy based on a reduction in symptomatic illness. It didn’t look as impressive as the Pfizer vaccine. But, when it’s been rolled out in the real world, it looks like it’s going to stack up absolutely as good as the Pfizer vaccine.
I’ve been incredibly encouraged by the real-world evidence. Often you see, with a therapeutic or a prevention intervention, impressive clinical trials outcomes, and then it’s rolled out in the so-called real world and you’re a little bit disappointed about the impact that it has for various reasons. But I think the COVID-19 vaccines have been amazingly impressive in what impact they’ve had.
I’m very, very optimistic. I’m also optimistic that there will be modifications to the vaccines. There’ll be new versions that will be developed to respond to the variants that are currently circulating.
Steph:
We’re being told right now to run, don’t walk to get a vaccine. But for some people living with chronic conditions dependent on medication that might need to see some restart around vaccinations — and particularly for those who are immunocompromised — it’s been a pretty scary world. It’s easy for them to feel that they are the most vulnerable, the words we hear so often from our politicians, and chief medical officers. But is it necessary, and who really is at risk?
Greg:
I think if you look at vaccine responsiveness, and as you mentioned, some concerns around whether people who have some immune compromise might have a sort of poorer response to the vaccine and less protection. Broadly, the biggest group with some immune-compromised are the very elderly. People’s immune systems do decline as you age. But if you look at the vaccine effectiveness, it’s remarkable how effective these vaccines are, at age groups above 80, for example, absolutely remarkable. In fact, that looks very similar to younger age groups.
That tells you that these vaccines have an amazing capacity to stimulate the immune system to provide that sort of protection that’s required against severe disease. Now, there will be some groups that are more immune-compromised —and you’d think about groups post-transplant, who are on fairly heavy-duty immune-suppressive agents — and there’s evidence that those people have a less responsive neutralising antibody response following vaccination.
So that’s a group that may require third doses (booster doses) to try and optimise their protection. So if I was going to utilise any booster doses, I’d use it for those that had really quite significant immune compromise.
Steph:
And it’s a goal for us to reach 80 per cent vaccine coverage by the end of the year. And at that point, even in states where there’s been little virus, Australia will be in the endemic phase and then there’ll be breakthrough infections. Tell us about what that’s going to look like and is there light at the end of the COVID-19 tunnel?
Greg:
Oh, absolutely. And I think it’s interesting to look at Australia as a bit of a test case because you’ve got jurisdictions at very different stages of living with the virus.
I’d like to get to above 90 per cent of the eligible population, I like to get to 80 per cent of the total population. But I think we need to be aspirational. I think we need to sort of shoot beyond the 80 per cent mark and just keep going as far as we can go.
I think towards the back end of this year, we may need to provide incentives — because there will be a small minority that will be very hesitant. And I think that monetary incentives can go part of the way. I’m not in favour of mandating vaccines except in settings where there’s a real risk to people. So healthcare settings, residential aged care settings. Clearly, workers in those environments should be vaccinated, and it’s appropriate that there’s mandatory vaccination, but I’m not broadly in favour of mandatory vaccination.
Steph:
Just to explain what is a pandemic? And what is an epidemic? What’s the difference?
Greg:
An epidemic is where you get an outbreak of infection, for example, or disease in a particular sort of setting or a country. That might be just within one sort of locality within a country. A pandemic is where it has multiple countries across the globe involved. I think there is a strict epidemiological definition in terms of the sort of breadth of that, outbreak situation that defines a pandemic. It basically means that sort of broadly spread around the world in a number of countries, in different sort of regions to make it a pandemic.
The issues around elimination and eradication of infectious diseases are interesting. And again, there’s some misunderstanding of that. Elimination is the reduction of either infection or disease in a defined geographical area to zero. We do have several major infectious diseases that have been eliminated by many countries. I think of polio as a classic example. Many countries have eliminated polio. Measles is an infectious disease that has been eliminated from many countries.
Eradication is a much tougher task. So, eradication is global elimination, so no longer any infections circulating globally. There’s only one human infectious disease that fits that bill, and that smallpox. A highly effective vaccine that provided sterilising immunity. The major global initiative to eliminate then eradicate smallpox.
We’ve had these global initiatives around measles, polio and various other infectious diseases, and we have made enormous progress. But we haven’t added to that one infectious disease on the list of eradication. So look, COVID-19 is not going to be on either of those lists.
Talking about vaccination and your health can be a difficult conversation. Our hope is to make it easier for you to understand and communicate these important subjects to your community.
Please share this podcast with friends and family and subscribe wherever you listen to your podcasts to hear more of #MatterOf Vax.
To learn more, please visit our website ghlf.org.au for vaccination facts, video explainers and patient stories from all over Australia. And be sure to subscribe to our news and community support from GHLF Australia.
You can also find us on Facebook and Twitter @GHLFAustralia.
I’m Steph O’Connell from GHLF Australia and this is #MatterOfVax.
Getting vaccinated and staying safe for life
Professor Robert Booy
We are going to take you beyond COVID-19 to vaccinations more broadly; touching on the powerful history that led us to this point where vaccines are preventing death and hospitalisation a year after the virus began its march across the world.
Vaccinations happen throughout a lifetime. It keeps me awake at night wondering how we are going with our community immunity when we are so focused on COVID-19 vaccinations. If we can’t afford to have reduced levels of immunity across a variety of vaccine-preventable diseases, are we keeping up now? We unpack that question by discussing our reliance on continuity of immunity levels and the critical role immunisation plays in Australia’s health.
Professor Robert Booy
Host: Steph O’Connell
Guest: Professor Robert Booy
This show is introduced to you by Global Healthy Living Foundation.
The Global Healthy Living Foundation is a non-profit working to improve the quality of life for people living with chronic conditions through advocacy, education and patient-centred research.
We wish to acknowledge the Darkinjung people as Traditional Custodians of the land on which I live and work. I pay respects to all the Elders, past, present and future.
Welcome to MatterofVax. I’m your host, Steph O’Connell.
I’m a health advocate and a health communicator with a career in public health and public affairs.
Professor Robert Booy is an infectious diseases paediatrician. Since 2005, he has worked at the University of Sydney in the fields of vaccinology, epidemiology and infectious diseases. He is a Professor of Paediatrics and Child Health and a Senior Professorial Fellow at the National Centre for Immunisation, Research and Surveillance at Westmead Children’s Hospital.
Steph:
Robert, when I think about how extraordinary our times are right now, I look at the big picture and I kind of wonder how important have the last two years been to our public health history?
Robert:
Well, that will only be certain in the course of time where we’ll understand that. I think right now it’s very clear that people suddenly realise that public health is important. They understand concepts that they’d never even heard of before. And they understand that vaccines are highly preventative but not perfect. They understand that there are other measures of controlling health and preventing disease. Masks, handwashing, things that we weren’t used to doing as a routine — of course, we do handwashing when we go to the bathroom or before we prepare a meal — but hand washing on a more regular basis.
The whole idea of checking in so that we can do contact tracing is something we weren’t familiar with before. So, there’s so much that’s changed and I see change as the norm. What we have now is just another state of flux and other movement towards a different state of being.
We have learned so much about how to protect ourselves and particularly how to protect our loved ones. But we are going to go on learning and we are going to go on improving. And we’re going to go on taking into account other social, domestic, political and environmental measures. I think we have got to a point where people are thinking much more deeply about life in general.
Steph:
It seems to me listening to you that everything old is new again. The images of people running indoors, away from plagues and pandemics of the past. That is a legitimate tool that we’re all now very familiar with. Do you think it’s going to change the way that we are in the future and the way that we, as a community, approach disease?
Robert:
There’s no doubt that things have changed dramatically. And then again, 100 years ago, we did all sorts of things that we’re doing right now. We had a great influenza pandemic that killed 50 million people worldwide. So far COVID has killed 5 million, but the true number is nearer 15 million. We have changed we know how to wear a mask now. We wore one 100 years ago and it worked moderately well.
Now we know that there’s N95, and then N99 or 100. What does that mean? 100 per cent perfect filtration. So a virus can’t get to you. And 99 means 99 times out of 100 can’t get to you so to speak.
So, we’ve learned how to use a mask. We’ve learned how to interact socially. We limit the number of people coming to our home. We look at our own homes, individually, and inside the home and say, “If you are infectious, you use this part of the home, this bathroom, this food preparation area”.
We’re just so much more nuanced. We’re so much more thoughtful. We’re so much more informed by science and, practical notions that people now — were they to catch COVID — are very unlikely to die from it unless they’re an at-risk person. So, those at-risk people are the ones we’ve been desperately trying to vaccinate as quickly as possible. People over 65. People with chronic medical conditions. The heart, the lungs, the liver, the kidneys.
COVID has taught us so very much it remains a major threat. It could even be a further threat in 2022 — what with further mutation. It’s an RNA virus, it knows how to change its spots. It knows how to mutate. It knows how to become more transmissible. Whether, in changing and evolving and becoming a more transmissible virus, it will become more deadly, well that’s a big question and probably unlikely. But there you go. There’s so much that’s happening. There’s so much we’re doing and there are so many challenges ahead of us with COVID.
Steph:
You’ve been a strong and passionate advocate for vaccination for 30 years — and incredibly well qualified on the subject — and now a national voice. You’re offering us hope, not just the facts. What’s it been like for you as a professional?
Robert:
Well, for me, it’s actually been very tiring because I hardly take a day off. On a daily basis, new information is coming through and I have a phone which feeds me emails and text messages and news reports and all sorts of different quality information. So for me, it’s been hard work. Work that I’ve been really glad to. Work that I’ve had more than 30 years preparation for by way of studying infectious diseases since the eighties. Indeed, I studied HIV AIDS 40 years ago when it first came out and I was worried and intrigued by it. I thought, “I need to do something about this”.
One of my best teachers, Professor Richard Kemp, was an infectious disease specialist and he later offered me a job at the Royal Brisbane Hospital. He really researched and he really understood the problem and he could teach it. He made infectious diseases into something that was important and something that I really wanted to investigate and dedicate my life to. So, in the 1980s, working under a teacher like that, I got inspired. One of the sad things was that he himself ended up dying of AIDS so that inspired me more.
For a long time now I’ve seen deadly life-threatening infectious diseases. I’ve seen paths to their better treatment, to their prevention. But we still don’t have a vaccine for HIV aids after 40 years. So there are so many challenges ahead of us. We’ve done incredibly well to develop vaccines within months against COVID and so many different types of safe and effective vaccines.
Steph:
We’ve had real success with the National Immunisation Program, haven’t we? HPV, chickenpox, hepatitis A and B, have all seen a reduction because of it. I wonder if you could tell us a little bit about the National Immunisation Program, its importance and why every Australian needs to be more aware of it.
Robert:
Well, the national plan, the National Immunisation Program (NIP) came into being at the end of the 90s under the seven-point plan introduced by the Health Minister, Michael Wooldridge.
It was a prophetic, almost, approach. It was practical. It was effective. It said, “Let’s get a national centre going where we can coordinate the understanding and the support of vaccination. And, let’s really put time and effort into helping GPs and nurses to deliver appropriate vaccines and let’s deliver more and better vaccines as time goes on.
We introduced vaccines against chickenpox and on it went. So many new or old diseases had a vaccine introduced, which was safe and effective. The National Immunisation Program has, during the last 10 years, achieved at least 95 per cent vaccination uptake rates of children of almost all vaccines available. An enormous achievement and equivalent to the best in the world. It means that these diseases are gone and some of them are forgotten.
Steph:
Robert, three years ago, in the National Immunisation Strategy for Australia 2019 to 2024, the authors wrote that because some diseases are no longer visible, our communities face a risk of complacency. That could have an impact on Australia’s vaccination coverage. Is that still true? And has COVID-19 eased or confirmed those predictions?
Robert:
I just like to simply say that, if you don’t have experience in your life course of seeing nasty diseases, they do get forgotten. And you need to speak to your parents, your uncle and aunt or your grandparents to say, “Well, what was this? What did it do? How was it stopped?”
And, of course, people will get complacent, and think, “Well, what do I need this for?” The ultimate complacency occurs when we eradicate a disease. So, for example, smallpox was eradicated way back in the 1970s. And therefore, for 40 years, we haven’t vaccinated against smallpox. So the complacency is deserved because we have eradicated — meaning there is no virus on the face of the earth.
Then there’s elimination, which we’re very close to with polio. Just a handful of cases on the border of Afghanistan and Pakistan. And that elimination means that we may, in time, be able to stop vaccinating for polio, too. But, not yet. Polio is still a real threat, even though the numbers are tiny. We’ve got just one final push to achieve to control polio.
Measles is very well controlled too. But we have to continue vaccination, that final push for measles too, to get to a point where the disease is not only unseen and eliminated — and it’s eliminated in Australia, by the way. I’m on the verification committee that’s been saying for the last five years Australia maintains its elimination of measles. But, worldwide elimination becomes eradication. And that’s what we’re working towards with diseases like measles and polio.
Steph:
On that very point, Professor, you are an advocate for health equity. And of course, when it comes to COVID-19 vaccination, we’re looking at devastating levels of vaccination rates in low-income countries. What is the way ahead? How do we improve those numbers and still maintain a vaccination rate in other countries that will keep some control over the disease?
Robert:
In most rich countries, the rate of double uptake to vaccines against COVID is more than 60 per cent. And, in most poor countries, it’s less than 6 per cent. We have a desperate need to supply vaccines for the people who are actually catching and dying from COVID in low-income countries.
It’s being done through the COVAX facility. There is a process where a combination of the WHO, Gavi – the Vaccine Alliance, the Melinda and Bill Gates Foundation and others have got together with UNICEF to procure and to implement, to deliver vaccination. The aim is to get to 5 to 10 per cent but really the aim is to get to 50 or 60 per cent just as the rich countries are.
So the COVAX facility is a means by which that vaccine can be procured and delivered to the people who need it. The way that can be done is through governments donating. And there are more than a billion doses that have been donated by rich countries, especially the US, the UK, Europe, and to a lesser extent, Australia.
And there’s individual giving that can make a difference too. People can give to UNICEF Australia simply by going to an online site and say, “I want to give 50 bucks”. With $50, you can save 10 people from getting COVID. 10 vaccines with two doses of each. 20 vaccines for $50 to a poor country. That’s incredible! That’s amazing! And if you get a free vaccine in Australia against COVID — which you do — two doses are worth 50 bucks. You can protect 10 other people. It’s extraordinary. So individually you can make a difference. Think globally, act locally.
So, I see the glass as half full. I can see ways forward where we can just do better — what we’re doing already — and improve through what we’ve learned from COVID. We’ve got out into communities, particularly in rich countries, very well.
We’re still failing our disability sector. There’s not nearly enough people with disabilities getting vaccinated in Australia. That’s been a real blind spot and it needs to be addressed rapidly and urgently. In the third world, we’ve had a huge blind spot where so many countries have one, two, three per cent uptake. That’s appalling. That’s unacceptable. We’re humans. We’re a species we should be looking after each other much better. And I think the urgent way forward is to address that and to say, “We may be safe in Australia, but how can we be protecting other people’s safety at the same time?”
Steph:
I love a great optimist and you’ve always been an optimist, Professor.
I have a question for you about vaccination targets’ When we achieved vaccination targets in Australia — and I’m sure we will very, very shortly — what advice do you have for managing health risks for those with chronic conditions and the immunocompromised? We touched on that a moment ago. They’re very vulnerable. I’m worried that, in the future, we will have third doses for immunocompromised people and then eventually boosters, but they still have to venture out where — perhaps for the last 18 months — they’ve lived a very restricted life. How did they now go into the public?
Robert:
Well, you start by dipping your toes in the water. You start by being prepared and having your bathing suit, your towel and your sunscreen with you. You’re vaccinated. You don’t mix with people who have got symptoms. You don’t mix in big crowds. You start by mixing in a small crowd, a picnic in an outdoor setting with ventilation is good. And then you build up gradually. It’s all doable. It just takes time. It takes thoughtfulness. It takes preparation. Look after yourself. Make sure that those around you are looking after you, too.
Steph:
It sounds like we need a mini roadmap for immunocompromised people and people who are most vulnerable. What would you say to them, Professor, if you could?
Robert:
Well, I talk to disabled people. One of my best friends that I grew up with has been in young care for 10 years. And what I would say is, “How are you? What do you need? Can I listen? Can I help you get access to the medical and preventive care you need? What I’d like to do is take you to a football match and so we can both enjoy that together.” But I’ve not been very good at that so far. And that’s a goal of mine to do with my friends.
Steph:
You’ve always been really, really practical and think that’s a sensational idea. Reach out to someone you know. Sounds like the world is going to be a better place if we take some of your recommendations.
Professor, I want to thank you for joining me today. As ever, it’s been an absolute joy and I hope you stay safe, too.
Talking about vaccination and your health can be a difficult conversation. Our hope is to make it easier for you to understand and communicate these important subjects to your community.
Please share this podcast with friends and family and subscribe wherever you listen to your podcasts to hear more of MatterofVax.
To learn more, please visit our website ghlf.org.au for vaccination facts, video explainers and patient stories from all over Australia. And be sure to subscribe to our news and community support from GHLF Australia.
You can also find us on Facebook and Twitter @GHLFAustralia.
I’m Steph O’Connell from Global Healthy Living Foundation and this is MatterofVax.
Heads up. Our language matters.
Renza Scibilia, Advocate for Diabetes
In this episode, we meet a powerful advocate and international spokesperson for type 1 diabetes who says words matter.
Recently, Renza Scibilia has been speaking about the language we’ve been using to describe those who are vulnerable to COVID-19, words that have some people with chronic conditions feeling increasingly frustrated, angry, upset or uncomfortable and afraid.
Let’s face it, with more than 50 per cent of Australians living with a chronic condition, it’s important to help all people feel safe, in control of their health and encourage actions that lead to a sense of wellbeing — no matter what’s going on in your local area. So, how do we negotiate the times in which we live while staying well and in control of our own health? We hear Renza’s story and find out why having an underlying condition is not a sentence.
Renza Scibilia
Host: Steph O’Connell
Guest: Renza Scibilia
This show is introduced to you by Global Healthy Living Foundation.
The Global Healthy Living Foundation is a non-profit working to improve the quality of life for people living with chronic conditions through advocacy, education and patient-centred research.
We wish to acknowledge the Darkinjung people as Traditional Custodians of the land on which I live and work. I pay respects to all the Elders, past, present and future.
Steph:
Welcome to MatterofVax. I’m your host, Steph O’Connell.
I’m a health advocate and health communicator with a career in public health and public affairs.
Renza Scibilia is a woman who’s used to being heard. She has a love of language and words — which we share. But she chooses hers really well and she really connects with people that she’s communicating with. It’s been her trademark.
She’s a diabetes advocate, an international speaker, a media spokesperson for most of her life, and she’s the owner and writer of a blog called diabetogenic. Renza is currently a Manager for Type 1 Diabetes and Communities at Diabetes Australia. She holds several community advisory board posts. She’s my guest today. Please welcome Renza.
Renza:
I’m so thrilled to be here. Thank you for inviting me to have a chat with you.
Steph:
You were a spokesperson for people around the world with diabetes. How did that affect you?
Renza:
We had to spring into action as a diabetes organisation because we needed to reassure people or explain to people this is how diabetes and COVID coexist. What is the interrelation between the two?
And of course, at that time, there was so little data and there was so little known. So, all we could really keep reminding people was, “Look, what we know is, at this stage, it doesn’t look like if you have diabetes, you are more at risk of getting the virus. But certainly, just as with any infection, if you do get it, it’s going to be harder to deal with.” That’s what diabetes does.
So we ran a number of different campaigns that were just really, “Stay connected”. We kept talking about physical distancing and we really wanted to change — or, “social distancing” is the language that we were using — and we really want to change it to “physical distancing”, because staying connected was really important.
Also, putting out lots of messages around, “Please don’t stockpile diabetes supplies and medications. There’s lots out there. You only need usual supplies. You will not run out Australia. Will not run out of insulin”. So there was a lot of that messaging.
I was taking the advice that we as a diabetes organisation, were giving. I was staying home. My husband is a teacher. So, at that stage, he wasn’t able to stay home and my daughter is in year 11 so she was still going to school. But we were very, very cautious. We started limiting who we’re seeing certainly weren’t going out for coffee and for lunches anymore. And we were just really, really starting to steer clear of people because we just didn’t know what we were dealing with.
I think that, from the beginning, the messaging that we had was that it was only people who were older, or living with a chronic health condition who needed to worry about it. And we’re like, “Well, that’s us, that’s us”. And so, the way that it was spoken about was in such a dismissive way — these people are expendable, we have one foot in the grave already.
We were trying to really deal with the concerns and the fears that people were having. And to position it in a way so that people could understand what it all meant. You know, we just wanted to make sense of it. Like when you say, “I’m an increased risk”, what does that mean?
So we spent quite a lot of time — certainly not sugar-coating it and telling everyone, “You’re going to be fine”. That’s, certainly, not what the role of any health organisation is. But we were really trying to be very careful with dealing with the media and the way the politicians were talking about it, which was that, “We don’t really care about these people. They’re the ones that risk, everyone else will be fine”. And we know now that’s not the case anyway — although that language has continued to date, unfortunately. But, we knew that there were people who were very, very scared.
Steph:
I was, last week, speaking to Professor Greg Dore from Kirby Institute and St Vincent’s Hospital, and we spoke about vulnerable and most vulnerable. And then, of course, in the interim, #UnderlyingConditions made the front page. I think there’s a set of language rules that we could be living by.
Renza:
I was tuning into the 11 am New South Wales press conferences every morning, and I can still remember the first time that the Premier said, “This person died, but they DID have underlying health conditions”, and it jarred. I remember, I actually gasped. It was presented in a way that sounded like the person was to blame.
Now, I live with type 1 diabetes. We love to point fingers at people with diabetes. “You brought it on yourself. If you had exercised a bit more and stopped eating McDonald’s you’d be fine.” So I live with a health condition that I’m always on heightened alert around this blaming and shaming and stigma. And I thought, “Wow, this is now making its way even more into COVID”.
We’d already had it at the beginning, but this suddenly now was people who were dying from COVID. And I watched every single one of the big pressers last year, and I’m pretty sure that not once did the underlying health condition status of any of the people who tragically died get a mention. Their ages were mentioned. But, whether or not they had underlying health conditions just didn’t get mentioned. And I just thought, “Wow, that’s … wow, that’s awful”.
Steph:
How does someone with a chronic condition navigate and survive that kind of language?
Renza:
You build a bunker where there’s no Wi-Fi, and then you just tune out from every single media source possible. But the reality is, of course, we don’t do that. We turn to our peers — because that’s where I know I get so much strength. There was that incredible thread that started on Twitter last week #UnderlyingCondition, and just seeing the voices and seeing the faces — I love that we were putting faces to the conditions because we are real people.
Steph:
Do you think people with chronic conditions have a loud enough voice in Australia?
Renza:
I think that there are too many examples of where we’re not given a seat at the table. And when we are we have no ability to influence. That’s the bit that’s key here. It’s not just enough to be heard, we have to then be in positions where we’re actually able to make a difference. So the simple answer is no, I don’t think we do. I absolutely don’t think we do.
Steph:
And what’s the answer to that?
Renza:
Look, in a perfect world, I would say that the incredibly powerful phrase, “Nothing about us without us”, actually, we start living it.
Steph:
I’m wondering what the future looks like. I can hear the voices of people with chronic conditions Hear their hesitancy about flinging open that door. Hear the fear that they’ve grown accustomed to. Worrying if they are the most vulnerable. If their underlying condition is something that will put them in hospital. Those people. What does the future look like for them?
Renza:
This is the big opening. It is a different situation now, as we’re saying higher vax rates in the community. But I also think there is an issue with the way that we’re presenting it, because I feel like it’s too much that people are just thinking, “Oh well, we’ll all be fine”. And clearly, we’re not going to be fine. And you just need to take a look at what’s going on in the UK to see that — I mean, you just need to look at that, right now, today — to see that it isn’t back to, “Business as usual, everything’s gonna be fine. We can start jumping on airplanes. We’ve got nothing to worry about”. There will always be vulnerable groups within that. There will be unvaccinated groups.
Steph:
When vaccinations were announced, and 1B — most chronic conditions and vulnerable people fell into that category — there was language around getting vaccinated at the time that told us to speak to our GP, if we had concerns. Do you think there was enough information about that for most people with a chronic condition?
Renza:
No, I don’t, because every condition is going to have different risks and considerations. And I don’t think that the information was being individualised enough. So, the risk for somebody with condition A is going to be very different for somebody with condition B. I think that was not particularly well communicated at all.
And then for people actually going and speaking with their health professionals about their own individual experience and what they should be thinking about, I don’t think that there was that information available.
Often it was just simply, “Get vaccinated”, which isn’t addressing the concerns that some people might have. If you’re being told to speak to your GP if you have concerns, well, then it should be a dialogue not, “Just go and get it done”. I believe that the overarching message actually should be “Just go and get it done”, but there has to be an opportunity for there to be a dialogue around that about why it’s safe.
We’ve seen some really great examples of people talking about how they’ve had conversations with people who have been a little bit unsure about it. And because — once they’ve down the science, or cast aside the science and talked more about the experience of it and concerns — that people have gone, “Yep. Okay, I’m going to go and get it done”. And they have quite happily done that. I don’t think necessarily, though, that that was happening, by and large, or routinely for a lot of people who were having those concerns.
You know, for a lot of people, sometimes those concerns are absolutely that. You know, “How is my chronic health condition going to interact with this vaccine and what’s it going to look like?” And I should just point out that, from a diabetes organisation point of view, we were really clear about that. Because absolutely, your diabetes, your blood sugar levels can definitely be affected if you have a vaccine.
So from a diabetes organisation perspective, we were making that really clear to people. That, “It’s absolutely recommended and safe for people with diabetes. But what you got to remember is, it might affect your glucose levels. It could make you go high a little bit so you might need a bit of extra insulin. It could make you go low. Just keep an eye on it. The way you deal with this is to check your glucose levels more frequently and talk to your diabetes healthcare team if you’ve got any questions”.
So that was addressing the diabetes-specific bit. But I don’t think that there was enough of that out there so that people could feel that reassurance. And, in a lot of cases, I guess people felt that they were being dismissed or belittled for daring to have those questions, but there just didn’t seem to be a routine and decent way, I guess, of having those conversations.
Steph:
It did put pressure on healthcare organisations.
Renza:
Yes. And I think that’s what we’re there, though, to do. To communicate these sorts of things en mass, because — we know that for a lot of people, that would have been the first thing that came into their mind. “How’s it going to affect my diabetes management?”
If we can answer that — and of course, we can’t say it is going to do this, because diabetes doesn’t have a rulebook. So you can’t say, “This is exactly what’s going to happen, it’s going to last for this many minutes, and then you’re going to be fine. And then you’ll be fabulous again,” because that’s not how diabetes, or any other health condition, works.
So, putting across the different scenarios to, I guess, alleviate some of those concerns, or address some of those concerns that people have. Well, hopefully, that could have been perhaps taking a bit of the pressure off GPs or healthcare professionals who are probably going to be asked the same questions over and over again, whatever the health condition was. But in diabetes, it probably would have been, “What’s going to do to my diabetes management Do I need to think about the medication, my medication and the choices that I’m taking? Do I need to think about X, Y and Z? What should I be worried about? At what point should I go, yep, this is a problem?”
We were trying to pre-empt what those concerns would be and to answer them as best that we could. And I know that other organizations are in the same boat, they were trying to do the same thing. And we’re still trying to do that. Now. We’re still trying to do that.
Steph:
It sounds like there’s a role going forward to ensure that communities are getting the tailored communication that they need around vaccination.
It’s been great talking to you.
Talking about vaccination and your health can be a difficult conversation. Our hope is to make it easier for you to understand and communicate these important subjects to your community.
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I’m Steph O’Connell from Global Healthy Living Foundation and this is MatterofVax.
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