Latest news with #NCIRS
West Australian
13-07-2025
- Health
- West Australian
How a common childhood illness became a death sentence
When Cecily Johnson took her then seven-and-a-half-year-old daughter Laine to hospital with symptoms of confusion and forgetfulness, she didn't expect to be told a common childhood illness had now become a death sentence. Laine had caught — and recovered from — measles as a baby, when she was too young to be vaccinated amid an outbreak of the disease in the 1980s. Seven years later, Laine was diagnosed with subacute sclerosing panencephalitis — a rare, progressive brain disorder that would rob her of her ability to walk, talk and even to see. Despite doctors saying she had just weeks to live, Laine survived — and was cared for by her mother — for another five years. Cecily is one of two mothers who spoke to about the devastating aftermath of their children catching a simple dose of measles. In 1982, Geraldton-based nurse and mother Cecily Johnson was temporarily living in Sydney with her 10-month-old daughter, Laine — her second child, after earlier losing another daughter during birth. 'She was beautiful and, of course, people at the hospital were really excited because they knew what I'd gone through, losing my other daughter,' Cecily tells of Laine's birth. When they needed to temporarily relocate to Sydney, Cecily was not aware there was a measles outbreak sweeping NSW. Measles is one of the world's most contagious diseases. It is airborne and can spread by simply breathing the same air in which an infected person has sneezed or coughed — even up to two hours later. By 1982, the single-dose measles vaccine had been around for little more than a decade and the vaccination rate was still low, only about 70 per cent. Outbreaks — such as the one in NSW at the time which was reported to have hospitalised more than 2000 people — were still common. Measles is so contagious it has one of the highest herd immunity thresholds, National Centre for Immunisation Research and Surveillance (NCIRS) associate director Frank Beard says. 'A herd immunity threshold is the proportion of the population that needs to be immune to a particular disease to reduce the chance of ongoing spread,' Beard explains. 'In Australia we have a target for childhood immunisation coverage of 95 per cent. Assuming that if we get to that level or above that level, then there'll be very little chance of bad outbreaks.' Beard says measles can lead to serious complications including pneumonia and, more rarely, encephalitis — which is 'inflammation of the lining of the brain and can be quite serious and cause death'. 'If you're not immune, then there's definitely a very high risk,' he says. The vaccine is given to babies at 12 months of age and, since 1992, a second dose at 18 months. In high-risk cases it can be given as early as six months old. Laine, who was only 10 months old, contracted the virus while staying in Sydney. 'I was a nurse so I would have had her immunised early but I was not aware of an outbreak,' Cecily says. 'And it wasn't till we got back to Perth that she came out in the rash and straight away I knew it was measles.' But even without being vaccinated, Laine recovered without any problems, Cecily says. 'She wasn't overly sick. She was just a bit miserable, wanting more fluids, wanting to be with mum all the time,' she says. By 1990 Laine's measles infection was long behind her, or so Cecily thought. But at age seven-and-a-half, Laine suddenly forgot how to shower or get into a car. 'She just said, 'I feel dumb. Send me back to preschool',' Cecily said. 'And my friend and I were like, 'Yeah, there's something wrong'.' That kicked off a long and frustrating search for answers during which doctors, who at the time could find nothing wrong with Laine, accused Cecily of lying about her daughter's symptoms — and even of being on drugs. Cecily thought her luck had changed when she ran into a senior specialist, whom she knew, who took her concerns seriously. 'He said, 'One question. Did she have measles as a baby?' And I said, 'Oh yes',' Cecily says. 'And straight away I knew what it was because I had nursed children with this. And I said, 'SSPE?' And he goes, 'That's what I'd be thinking'.' And that is where Cecily's luck ran out. Cecily Johnson and Diane Cowan's stories are available on iHeart and Spotify . After some to-and-from, the specialist was able to see Laine and confirmed a diagnosis of SSPE, or subacute sclerosing panencephalitis — a rare disease that can develop years after someone has had a measles infection. 'He actually said to me, 'She's probably only got two weeks to live at this stage',' Cecily says. Beard says SSPE can be very hard to diagnose because of its general symptoms. 'The measles virus can lie dormant in the brain and then, several years after the infection, it can reactivate,' Beard explains. 'And then that steadily causes deterioration and mental function and physical function, and almost always results in death in due course.' And while, in the very short timeframe in which the specialist had expected Laine to die, she had lost her ability to see, speak and walk, she lived with the condition for another five years. 'When she went blind, she said to me, 'Mum, mum, just let me see your face one more time'. I think that was the hardest thing I've ever, ever heard in my life,' Cecily says, describing her daughter's years battling SSPE as like watching her die a little more each day. The Australian Government's Department of Health, Disability and Ageing says there is no antiviral treatment — drugs which can ease symptoms and slow a disease but are not a cure — for SSPE. But in 1990, Cecily was told about a possible antiviral which was only available in the US. While Cecily tracked it down herself, Laine suffered severe side effects and the treatment had to stop. Caring for Laine alone for five years, Cecily also struggled to get the equipment she needed. As a nurse, she managed to source some outdated hospital gear — but it wasn't easy. And as she cared for Laine, she spoke openly and publicly about SSPE and measles vaccination, which made her a target for anti-vaxxers — both before and after Laine's death. In 1995, Laine passed away, aged 12, in her mother's arms. At her memorial service in Western Australia, anti-vaccine protesters showed up after reading about her death in the local paper. In 1981 — a year before Laine had measles — Diane Cowan's baby son Matthew had also caught and recovered from the illness. He was just six weeks old — like Laine, too young to have been vaccinated — when he contracted measles while in a NSW hospital. And like Laine he had seemed to recover fully and was a happy, at times boisterous, little boy when, soon before his sixth birthday, he began to show symptoms that something else was wrong. Diane says it seemed like any other day when she got a call from Matthew's school saying he was being disruptive in class. 'I went to the school and what I saw was just out of the ordinary,' Diane recalls. 'I could tell that this just wasn't normal.' She rushed him to a doctor but was told she was just being paranoid — especially because her younger son had suffered a stroke. 'He said, 'You can't have two children with an affliction',' Diane says, adding she refused to accept that response and took Matthew to a children's hospital in Sydney. 'I thought it might be epilepsy,' she recalls. 'Not the devastating diagnosis we received.' Tests were done and Matthew was diagnosed, on his sixth birthday — June 15, 1987 — with SSPE. He was given just up to six weeks to live. 'I remember cuddling Matthew in the car all the way home,' Diane says. 'It was pretty horrific.' Just a week after celebrating his birthday, Diane asked her son what he wished for. 'He said, 'All the kids at my school to come to my party',' Diane recalls. 'So all the kids in his school came to his party.' By then the once boisterous little boy who would gleefully push his grandmother off his toy bike was struggling to walk, and soon after developed pneumonia and lost the ability to speak. But, like Laine, Matthew would defy the doctors who said he was likely to be dead within six weeks — except in his case he would survive, unable to walk or talk, for more than three decades. He died in 2022. Diane cared for Matthew mostly on her own, with nurses visiting the house a few times a week, and like Cecily she also struggled to access essential equipment. However, a doctor helped her access an antiviral medication, called isoprinosine and which helped alleviate Matthew's symptoms, until he turned 16. 'We used this medication and I saw a big improvement in Matthew, but it was really hard to convince other people,' Diane recalls. 'I had to run around with the video camera on my hip most of the time, trying to capture all these moments so that I could take it to the doctors and say, 'Hey, this is what Matthew did', because they didn't believe me.' Diane says the medication helped Matthew go from being stiff and expressionless to a little boy who could sit up and smile. Eventually, his condition did deteriorate and 'he ended up with a feeding tube and then he slowly lost control of his bladder'. 'And then he just maintained that. He didn't get any worse. He didn't get any better. He just was Matthew right to the end.' Matthew passed away three years ago, but Diane prefers to remember him as a cheeky little boy. 'Probably three weeks before he passed away, he used to look at me, and I couldn't work out what it was but I think he was telling me it was time. It was time to go,' Diane says. 'I went out for dinner the night before and came home. I kissed him goodnight and everything. And he just went to sleep and didn't wake up.' Over the 42 years Diane dedicated her life to caring for Matthew, she left her job and says she became increasingly isolated — and remains so. 'I still say that I'm socially isolated because trying to get back out in society now is … I just don't fit in, you know, I don't fit into society because I've been out of it for 42 years,' she says. Both Cecily and Diane now share their stories to advocate for vaccinations, and to warn people about the possible later effects of contracting measles — especially now, with vaccination rates slipping and a rise in measles cases coming into Australia. After its introduction to Australia in 1969, the measles vaccine was eventually combined with the rubella and mumps vaccines, creating the MMR vaccine which is now given to children in two doses, usually at 12 months of age and a second dose at 18 months — with the low vaccination rates of the 1980s steadily climbing over the decades since to reach even surpass the herd immunity threshold. But in April this year, NSW Chief Medical Officer Dr Kerry Chant and Paediatric Infectious Diseases specialist Dr Philip Britton issued a public warning as measles cases began to rise. What's troubling medical experts is the combination of global outbreaks and declining vaccination rates here in Australia. While childhood vaccination rates had steadily improved to the point many childhood illnesses — included measles — were declared no longer endemic in Australia, that trend has recently reversed with data now showing a consistent year-on-year decline since the outbreak of COVID-19. However, NCIRS professor Beard stresses this drop isn't necessarily due to vaccine hesitancy, instead it's often a matter of access — although acceptance does also play a part. 'Looking at access barriers, they are practical barriers. So, parents reporting difficulty prioritising vaccination and having difficulties getting to an appointment for vaccination and associated costs,' he explains. 'Then, in terms of acceptance, that's people's concerns about vaccination, about safety and effectiveness. And so, parents are certainly reporting those concerns, those concerns have been around for a long time, to some degree.' But he adds access is very much a key issue today. 'We know that GPs are the main immunisers of young children and we know that GPs are under considerable pressure since the pandemic. It's difficult to get appointments with GPS. It's difficult to find bulk-billing GPs,' he said. MMR vaccines are provided free under the National Immunisation Program, but they are not equally readily available across the country. In NSW, MMR vaccines are available from about 4,000 general practice clinics and community pharmacies, as well as through Aboriginal Medical Services. That's 3,212 more providers than Western Australia, which has just 544 providers in Perth's metropolitan area and only 244 across the state's vast regional areas. In 2014 the World Health Organisation declared Australia had eliminated the endemic spread of measles — meaning the disease was no longer spreading locally. But could that possibly change? 'Measles becoming endemic again is always a concern,' Beard says. 'However, unless we had a substantial and sustained decrease in vaccination further from where we are, that would likely be ... only a risk over a period of decades. 'Obviously, (the declining vaccination rate) is not good and we want to reverse that, rather than just letting it slide. 'But important to note is that the increase in cases of measles in Australia is so low that decreasing vaccination coverage rates in young children is only a very small contributor to that. 'So, most of the cases are due to increasing travel and outbreaks overseas and returning travellers who may not have been fully vaccinated.' If you have concerns regarding measles or SSPE, contact your local General Practitioner. For an emergency, call triple zero (000).
Perth Now
13-07-2025
- Health
- Perth Now
How a common childhood illness became a death sentence
When Cecily Johnson took her then seven-and-a-half-year-old daughter Laine to hospital with symptoms of confusion and forgetfulness, she didn't expect to be told a common childhood illness had now become a death sentence. Laine had caught — and recovered from — measles as a baby, when she was too young to be vaccinated amid an outbreak of the disease in the 1980s. Seven years later, Laine was diagnosed with subacute sclerosing panencephalitis — a rare, progressive brain disorder that would rob her of her ability to walk, talk and even to see. Despite doctors saying she had just weeks to live, Laine survived — and was cared for by her mother — for another five years. Cecily is one of two mothers who spoke to about the devastating aftermath of their children catching a simple dose of measles. In 1982, Geraldton-based nurse and mother Cecily Johnson was temporarily living in Sydney with her 10-month-old daughter, Laine — her second child, after earlier losing another daughter during birth. 'She was beautiful and, of course, people at the hospital were really excited because they knew what I'd gone through, losing my other daughter,' Cecily tells of Laine's birth. Laine was born in 1982. Credit: Cecily Johnson When they needed to temporarily relocate to Sydney, Cecily was not aware there was a measles outbreak sweeping NSW. Measles is one of the world's most contagious diseases. It is airborne and can spread by simply breathing the same air in which an infected person has sneezed or coughed — even up to two hours later. By 1982, the single-dose measles vaccine had been around for little more than a decade and the vaccination rate was still low, only about 70 per cent. Outbreaks — such as the one in NSW at the time which was reported to have hospitalised more than 2000 people — were still common. Measles is so contagious it has one of the highest herd immunity thresholds, National Centre for Immunisation Research and Surveillance (NCIRS) associate director Frank Beard says. 'A herd immunity threshold is the proportion of the population that needs to be immune to a particular disease to reduce the chance of ongoing spread,' Beard explains. 'In Australia we have a target for childhood immunisation coverage of 95 per cent. Assuming that if we get to that level or above that level, then there'll be very little chance of bad outbreaks.' Beard says measles can lead to serious complications including pneumonia and, more rarely, encephalitis — which is 'inflammation of the lining of the brain and can be quite serious and cause death'. 'If you're not immune, then there's definitely a very high risk,' he says. The vaccine is given to babies at 12 months of age and, since 1992, a second dose at 18 months. In high-risk cases it can be given as early as six months old. Laine was just 10 months old when she contracted the measles virus. Credit: Cecily Johnson Laine, who was only 10 months old, contracted the virus while staying in Sydney. 'I was a nurse so I would have had her immunised early but I was not aware of an outbreak,' Cecily says. 'And it wasn't till we got back to Perth that she came out in the rash and straight away I knew it was measles.' But even without being vaccinated, Laine recovered without any problems, Cecily says. 'She wasn't overly sick. She was just a bit miserable, wanting more fluids, wanting to be with mum all the time,' she says. By 1990 Laine's measles infection was long behind her, or so Cecily thought. But at age seven-and-a-half, Laine suddenly forgot how to shower or get into a car. 'She just said, 'I feel dumb. Send me back to preschool',' Cecily said. 'And my friend and I were like, 'Yeah, there's something wrong'.' That kicked off a long and frustrating search for answers during which doctors, who at the time could find nothing wrong with Laine, accused Cecily of lying about her daughter's symptoms — and even of being on drugs. Cecily thought her luck had changed when she ran into a senior specialist, whom she knew, who took her concerns seriously. 'He said, 'One question. Did she have measles as a baby?' And I said, 'Oh yes',' Cecily says. 'And straight away I knew what it was because I had nursed children with this. And I said, 'SSPE?' And he goes, 'That's what I'd be thinking'.' And that is where Cecily's luck ran out. Cecily Johnson and Diane Cowan's stories are available on iHeart and Spotify. After some to-and-from, the specialist was able to see Laine and confirmed a diagnosis of SSPE, or subacute sclerosing panencephalitis — a rare disease that can develop years after someone has had a measles infection. 'He actually said to me, 'She's probably only got two weeks to live at this stage',' Cecily says. Before being diagnosed with SSPE, Laine was inseparable from her younger brother. Credit: Cecily Johnson Beard says SSPE can be very hard to diagnose because of its general symptoms. 'The measles virus can lie dormant in the brain and then, several years after the infection, it can reactivate,' Beard explains. 'And then that steadily causes deterioration and mental function and physical function, and almost always results in death in due course.' And while, in the very short timeframe in which the specialist had expected Laine to die, she had lost her ability to see, speak and walk, she lived with the condition for another five years. 'When she went blind, she said to me, 'Mum, mum, just let me see your face one more time'. I think that was the hardest thing I've ever, ever heard in my life,' Cecily says, describing her daughter's years battling SSPE as like watching her die a little more each day. Cecily with Laine in Bali, five months before she was diagnosed with SSPE. Credit: Cecily Johnson The Australian Government's Department of Health, Disability and Ageing says there is no antiviral treatment — drugs which can ease symptoms and slow a disease but are not a cure — for SSPE. But in 1990, Cecily was told about a possible antiviral which was only available in the US. While Cecily tracked it down herself, Laine suffered severe side effects and the treatment had to stop. Caring for Laine alone for five years, Cecily also struggled to get the equipment she needed. As a nurse, she managed to source some outdated hospital gear — but it wasn't easy. And as she cared for Laine, she spoke openly and publicly about SSPE and measles vaccination, which made her a target for anti-vaxxers — both before and after Laine's death. In 1995, Laine passed away, aged 12, in her mother's arms. At her memorial service in Western Australia, anti-vaccine protesters showed up after reading about her death in the local paper. Cecily says Laine and her brother would never leave home without each other. Credit: Cecily Johnson In 1981 — a year before Laine had measles — Diane Cowan's baby son Matthew had also caught and recovered from the illness. He was just six weeks old — like Laine, too young to have been vaccinated — when he contracted measles while in a NSW hospital. And like Laine he had seemed to recover fully and was a happy, at times boisterous, little boy when, soon before his sixth birthday, he began to show symptoms that something else was wrong. Matthew as a toddler with his brother. Credit: Diane Cowan Diane says it seemed like any other day when she got a call from Matthew's school saying he was being disruptive in class. 'I went to the school and what I saw was just out of the ordinary,' Diane recalls. 'I could tell that this just wasn't normal.' She rushed him to a doctor but was told she was just being paranoid — especially because her younger son had suffered a stroke. 'He said, 'You can't have two children with an affliction',' Diane says, adding she refused to accept that response and took Matthew to a children's hospital in Sydney. 'I thought it might be epilepsy,' she recalls. 'Not the devastating diagnosis we received.' Matthew was a cheeky little boy, according to his mother. Credit: Diane Cowan Tests were done and Matthew was diagnosed, on his sixth birthday — June 15, 1987 — with SSPE. He was given just up to six weeks to live. 'I remember cuddling Matthew in the car all the way home,' Diane says. 'It was pretty horrific.' Just a week after celebrating his birthday, Diane asked her son what he wished for. 'He said, 'All the kids at my school to come to my party',' Diane recalls. 'So all the kids in his school came to his party.' By then the once boisterous little boy who would gleefully push his grandmother off his toy bike was struggling to walk, and soon after developed pneumonia and lost the ability to speak. But, like Laine, Matthew would defy the doctors who said he was likely to be dead within six weeks — except in his case he would survive, unable to walk or talk, for more than three decades. He died in 2022. Diane cared for Matthew mostly on her own, with nurses visiting the house a few times a week, and like Cecily she also struggled to access essential equipment. However, a doctor helped her access an antiviral medication, called isoprinosine and which helped alleviate Matthew's symptoms, until he turned 16. 'We used this medication and I saw a big improvement in Matthew, but it was really hard to convince other people,' Diane recalls. 'I had to run around with the video camera on my hip most of the time, trying to capture all these moments so that I could take it to the doctors and say, 'Hey, this is what Matthew did', because they didn't believe me.' Diane says the medication helped Matthew go from being stiff and expressionless to a little boy who could sit up and smile. Matthew was diagnosed with SSPE at age six, and Diane cared for him at home until he died at age 48. Credit: Diane Cowan Eventually, his condition did deteriorate and 'he ended up with a feeding tube and then he slowly lost control of his bladder'. 'And then he just maintained that. He didn't get any worse. He didn't get any better. He just was Matthew right to the end.' Matthew passed away three years ago, but Diane prefers to remember him as a cheeky little boy. 'Probably three weeks before he passed away, he used to look at me, and I couldn't work out what it was but I think he was telling me it was time. It was time to go,' Diane says. 'I went out for dinner the night before and came home. I kissed him goodnight and everything. And he just went to sleep and didn't wake up.' Diane prefers to remember Matthew as a little boy, before his SSPE diagnosis. Credit: Diane Cowan Over the 42 years Diane dedicated her life to caring for Matthew, she left her job and says she became increasingly isolated — and remains so. 'I still say that I'm socially isolated because trying to get back out in society now is … I just don't fit in, you know, I don't fit into society because I've been out of it for 42 years,' she says. Both Cecily and Diane now share their stories to advocate for vaccinations, and to warn people about the possible later effects of contracting measles — especially now, with vaccination rates slipping and a rise in measles cases coming into Australia. After its introduction to Australia in 1969, the measles vaccine was eventually combined with the rubella and mumps vaccines, creating the MMR vaccine which is now given to children in two doses, usually at 12 months of age and a second dose at 18 months — with the low vaccination rates of the 1980s steadily climbing over the decades since to reach even surpass the herd immunity threshold. But in April this year, NSW Chief Medical Officer Dr Kerry Chant and Paediatric Infectious Diseases specialist Dr Philip Britton issued a public warning as measles cases began to rise. What's troubling medical experts is the combination of global outbreaks and declining vaccination rates here in Australia. While childhood vaccination rates had steadily improved to the point many childhood illnesses — included measles — were declared no longer endemic in Australia, that trend has recently reversed with data now showing a consistent year-on-year decline since the outbreak of COVID-19. However, NCIRS professor Beard stresses this drop isn't necessarily due to vaccine hesitancy, instead it's often a matter of access — although acceptance does also play a part. 'Looking at access barriers, they are practical barriers. So, parents reporting difficulty prioritising vaccination and having difficulties getting to an appointment for vaccination and associated costs,' he explains. 'Then, in terms of acceptance, that's people's concerns about vaccination, about safety and effectiveness. And so, parents are certainly reporting those concerns, those concerns have been around for a long time, to some degree.' But he adds access is very much a key issue today. 'We know that GPs are the main immunisers of young children and we know that GPs are under considerable pressure since the pandemic. It's difficult to get appointments with GPS. It's difficult to find bulk-billing GPs,' he said. MMR vaccines are provided free under the National Immunisation Program, but they are not equally readily available across the country. In NSW, MMR vaccines are available from about 4,000 general practice clinics and community pharmacies, as well as through Aboriginal Medical Services. That's 3,212 more providers than Western Australia, which has just 544 providers in Perth's metropolitan area and only 244 across the state's vast regional areas. In 2014 the World Health Organisation declared Australia had eliminated the endemic spread of measles — meaning the disease was no longer spreading locally. But could that possibly change? 'Measles becoming endemic again is always a concern,' Beard says. 'However, unless we had a substantial and sustained decrease in vaccination further from where we are, that would likely be ... only a risk over a period of decades. 'Obviously, (the declining vaccination rate) is not good and we want to reverse that, rather than just letting it slide. 'But important to note is that the increase in cases of measles in Australia is so low that decreasing vaccination coverage rates in young children is only a very small contributor to that. 'So, most of the cases are due to increasing travel and outbreaks overseas and returning travellers who may not have been fully vaccinated.' If you have concerns regarding measles or SSPE, contact your local General Practitioner. For an emergency, call triple zero (000).
7NEWS
13-07-2025
- Health
- 7NEWS
How a common childhood illness became a death sentence
When Cecily Johnson took her then seven-and-a-half-year-old daughter Laine to hospital with symptoms of confusion and forgetfulness, she didn't expect to be told a common childhood illness had now become a death sentence. Laine had caught — and recovered from — measles as a baby, when she was too young to be vaccinated amid an outbreak of the disease in the 1980s. Seven years later, Laine was diagnosed with subacute sclerosing panencephalitis — a rare, progressive brain disorder that would rob her of her ability to walk, talk and even to see. Despite doctors saying she had just weeks to live, Laine survived — and was cared for by her mother — for another five years. Cecily is one of two mothers who spoke to about the devastating aftermath of their children catching a simple dose of measles. Laine's story In 1982, Geraldton-based nurse and mother Cecily Johnson was temporarily living in Sydney with her 10-month-old daughter, Laine — her second child, after earlier losing another daughter during birth. 'She was beautiful and, of course, people at the hospital were really excited because they knew what I'd gone through, losing my other daughter,' Cecily tells of Laine's birth. When they needed to temporarily relocate to Sydney, Cecily was not aware there was a measles outbreak sweeping NSW. Measles is one of the world's most contagious diseases. It is airborne and can spread by simply breathing the same air in which an infected person has sneezed or coughed — even up to two hours later. By 1982, the single-dose measles vaccine had been around for little more than a decade and the vaccination rate was still low, only about 70 per cent. Outbreaks — such as the one in NSW at the time which was reported to have hospitalised more than 2000 people — were still common. Measles is so contagious it has one of the highest herd immunity thresholds, National Centre for Immunisation Research and Surveillance (NCIRS) associate director Frank Beard says. 'A herd immunity threshold is the proportion of the population that needs to be immune to a particular disease to reduce the chance of ongoing spread,' Beard explains. 'In Australia we have a target for childhood immunisation coverage of 95 per cent. Assuming that if we get to that level or above that level, then there'll be very little chance of bad outbreaks.' Beard says measles can lead to serious complications including pneumonia and, more rarely, encephalitis — which is 'inflammation of the lining of the brain and can be quite serious and cause death'. 'If you're not immune, then there's definitely a very high risk,' he says. The vaccine is given to babies at 12 months of age and, since 1992, a second dose at 18 months. In high-risk cases it can be given as early as six months old. Laine, who was only 10 months old, contracted the virus while staying in Sydney. 'I was a nurse so I would have had her immunised early but I was not aware of an outbreak,' Cecily says. 'And it wasn't till we got back to Perth that she came out in the rash and straight away I knew it was measles.' But even without being vaccinated, Laine recovered without any problems, Cecily says. 'She wasn't overly sick. She was just a bit miserable, wanting more fluids, wanting to be with mum all the time,' she says. A deadly diagnosis By 1990 Laine's measles infection was long behind her, or so Cecily thought. But at age seven-and-a-half, Laine suddenly forgot how to shower or get into a car. 'She just said, 'I feel dumb. Send me back to preschool',' Cecily said. 'And my friend and I were like, 'Yeah, there's something wrong'.' That kicked off a long and frustrating search for answers during which doctors, who at the time could find nothing wrong with Laine, accused Cecily of lying about her daughter's symptoms — and even of being on drugs. Cecily thought her luck had changed when she ran into a senior specialist, whom she knew, who took her concerns seriously. 'He said, 'One question. Did she have measles as a baby?' And I said, 'Oh yes',' Cecily says. 'And straight away I knew what it was because I had nursed children with this. And I said, 'SSPE?' And he goes, 'That's what I'd be thinking'.' And that is where Cecily's luck ran out. Cecily Johnson and Diane Cowan's stories are available on iHeart and Spotify. After some to-and-from, the specialist was able to see Laine and confirmed a diagnosis of SSPE, or subacute sclerosing panencephalitis — a rare disease that can develop years after someone has had a measles infection. 'He actually said to me, 'She's probably only got two weeks to live at this stage',' Cecily says. Beard says SSPE can be very hard to diagnose because of its general symptoms. 'The measles virus can lie dormant in the brain and then, several years after the infection, it can reactivate,' Beard explains. 'And then that steadily causes deterioration and mental function and physical function, and almost always results in death in due course.' And while, in the very short timeframe in which the specialist had expected Laine to die, she had lost her ability to see, speak and walk, she lived with the condition for another five years. 'When she went blind, she said to me, 'Mum, mum, just let me see your face one more time'. I think that was the hardest thing I've ever, ever heard in my life,' Cecily says, describing her daughter's years battling SSPE as like watching her die a little more each day. The Australian Government's Department of Health, Disability and Ageing says there is no antiviral treatment — drugs which can ease symptoms and slow a disease but are not a cure — for SSPE. But in 1990, Cecily was told about a possible antiviral which was only available in the US. While Cecily tracked it down herself, Laine suffered severe side effects and the treatment had to stop. Caring for Laine alone for five years, Cecily also struggled to get the equipment she needed. As a nurse, she managed to source some outdated hospital gear — but it wasn't easy. And as she cared for Laine, she spoke openly and publicly about SSPE and measles vaccination, which made her a target for anti-vaxxers — both before and after Laine's death. In 1995, Laine passed away, aged 12, in her mother's arms. At her memorial service in Western Australia, anti-vaccine protesters showed up after reading about her death in the local paper. Matthew's story In 1981 — a year before Laine had measles — Diane Cowan's baby son Matthew had also caught and recovered from the illness. He was just six weeks old — like Laine, too young to have been vaccinated — when he contracted measles while in a NSW hospital. And like Laine he had seemed to recover fully and was a happy, at times boisterous, little boy when, soon before his sixth birthday, he began to show symptoms that something else was wrong. Diane says it seemed like any other day when she got a call from Matthew's school saying he was being disruptive in class. 'I went to the school and what I saw was just out of the ordinary,' Diane recalls. 'I could tell that this just wasn't normal.' She rushed him to a doctor but was told she was just being paranoid — especially because her younger son had suffered a stroke. 'He said, 'You can't have two children with an affliction',' Diane says, adding she refused to accept that response and took Matthew to a children's hospital in Sydney. 'I thought it might be epilepsy,' she recalls. 'Not the devastating diagnosis we received.' Tests were done and Matthew was diagnosed, on his sixth birthday — June 15, 1987 — with SSPE. He was given just up to six weeks to live. 'I remember cuddling Matthew in the car all the way home,' Diane says. 'It was pretty horrific.' Just a week after celebrating his birthday, Diane asked her son what he wished for. 'He said, 'All the kids at my school to come to my party',' Diane recalls. 'So all the kids in his school came to his party.' By then the once boisterous little boy who would gleefully push his grandmother off his toy bike was struggling to walk, and soon after developed pneumonia and lost the ability to speak. But, like Laine, Matthew would defy the doctors who said he was likely to be dead within six weeks — except in his case he would survive, unable to walk or talk, for more than three decades. He died in 2022. Diane cared for Matthew mostly on her own, with nurses visiting the house a few times a week, and like Cecily she also struggled to access essential equipment. However, a doctor helped her access an antiviral medication, called isoprinosine and which helped alleviate Matthew's symptoms, until he turned 16. 'We used this medication and I saw a big improvement in Matthew, but it was really hard to convince other people,' Diane recalls. 'I had to run around with the video camera on my hip most of the time, trying to capture all these moments so that I could take it to the doctors and say, 'Hey, this is what Matthew did', because they didn't believe me.' Diane says the medication helped Matthew go from being stiff and expressionless to a little boy who could sit up and smile. Eventually, his condition did deteriorate and 'he ended up with a feeding tube and then he slowly lost control of his bladder'. 'And then he just maintained that. He didn't get any worse. He didn't get any better. He just was Matthew right to the end.' Matthew passed away three years ago, but Diane prefers to remember him as a cheeky little boy. 'Probably three weeks before he passed away, he used to look at me, and I couldn't work out what it was but I think he was telling me it was time. It was time to go,' Diane says. 'I went out for dinner the night before and came home. I kissed him goodnight and everything. And he just went to sleep and didn't wake up.' Over the 42 years Diane dedicated her life to caring for Matthew, she left her job and says she became increasingly isolated — and remains so. 'I still say that I'm socially isolated because trying to get back out in society now is … I just don't fit in, you know, I don't fit into society because I've been out of it for 42 years,' she says. Both Cecily and Diane now share their stories to advocate for vaccinations, and to warn people about the possible later effects of contracting measles — especially now, with vaccination rates slipping and a rise in measles cases coming into Australia. Barriers to vaccination After its introduction to Australia in 1969, the measles vaccine was eventually combined with the rubella and mumps vaccines, creating the MMR vaccine which is now given to children in two doses, usually at 12 months of age and a second dose at 18 months — with the low vaccination rates of the 1980s steadily climbing over the decades since to reach even surpass the herd immunity threshold. But in April this year, NSW Chief Medical Officer Dr Kerry Chant and Paediatric Infectious Diseases specialist Dr Philip Britton issued a public warning as measles cases began to rise. What's troubling medical experts is the combination of global outbreaks and declining vaccination rates here in Australia. While childhood vaccination rates had steadily improved to the point many childhood illnesses — included measles — were declared no longer endemic in Australia, that trend has recently reversed with data now showing a consistent year-on-year decline since the outbreak of COVID-19. However, NCIRS professor Beard stresses this drop isn't necessarily due to vaccine hesitancy, instead it's often a matter of access — although acceptance does also play a part. 'Looking at access barriers, they are practical barriers. So, parents reporting difficulty prioritising vaccination and having difficulties getting to an appointment for vaccination and associated costs,' he explains. 'Then, in terms of acceptance, that's people's concerns about vaccination, about safety and effectiveness. And so, parents are certainly reporting those concerns, those concerns have been around for a long time, to some degree.' But he adds access is very much a key issue today. 'We know that GPs are the main immunisers of young children and we know that GPs are under considerable pressure since the pandemic. It's difficult to get appointments with GPS. It's difficult to find bulk-billing GPs,' he said. MMR vaccines are provided free under the National Immunisation Program, but they are not equally readily available across the country. In NSW, MMR vaccines are available from about 4,000 general practice clinics and community pharmacies, as well as through Aboriginal Medical Services. That's 3,212 more providers than Western Australia, which has just 544 providers in Perth's metropolitan area and only 244 across the state's vast regional areas. Is measles still a concern today? In 2014 the World Health Organisation declared Australia had eliminated the endemic spread of measles — meaning the disease was no longer spreading locally. But could that possibly change? 'Measles becoming endemic again is always a concern,' Beard says. 'However, unless we had a substantial and sustained decrease in vaccination further from where we are, that would likely be ... only a risk over a period of decades. 'Obviously, (the declining vaccination rate) is not good and we want to reverse that, rather than just letting it slide. 'But important to note is that the increase in cases of measles in Australia is so low that decreasing vaccination coverage rates in young children is only a very small contributor to that. 'So, most of the cases are due to increasing travel and outbreaks overseas and returning travellers who may not have been fully vaccinated.'
ABC News
05-07-2025
- Health
- ABC News
Influenza cases nearly 20 per cent higher than 2024 as Queensland faces one of its worst flu seasons in years
Queensland is looking at one of its worst flu seasons in years, at a time when government incentives appear to have failed to improve vaccination rates. So far this year, influenza cases are nearly 20 per cent higher than they were last year, and 2,800 cases were recorded in the last week alone — the highest weekly total of 2025. The volume of virus within the community is of real concern to experts, who forecast a potential "surge" in cases after the school holidays. "Kids are all heading back to school in a couple of weeks, which will give them the opportunity to spread [influenza]," Dr Stephen Lambert, a senior medical officer with the National Centre for Immunisation Research and Surveillance (NCIRS) said. "This time last year, we probably only had a third to a half of our cases. "So, there's the real chance we'll be getting a surge of cases later in winter that people still have the opportunity to protect themselves against." So far this year, 80 Queenslanders have died from influenza. According to Queensland Health, 300 beds are being taken up each day across the state for people with the flu. Of the 3,000 people who have been hospitalised as a result of influenza in 2025, 92 per cent have not been vaccinated. Since 2022, the Queensland government has funded free flu vaccinations, yet the state continues to have some of the lowest vaccination rates in the country, particularly amongst children. According to data provided by NCIRS, just 16 per cent of children under five have had a flu jab so far this year in Queensland — the lowest in the country. At 11.5 per cent, the rate of children aged between 5 to 15 who have been vaccinated is second only to the Northern Territory as the lowest in the country. Queensland's vaccination rates for those aged between 15 to 50 is also the second lowest nationally. "I think so many people think these viruses only affect the old and heavily co-morbid, so if you're young and fit and well, you don't need to worry about them," said Dr Paul Griffin, director of infectious diseases at the Mater Hospital. "That's certainly not the case. Unfortunately, every year we see young people without traditional risk factors end up unwell in hospital." While those aged over 65 are at particular risk from flu, Queensland Health warned children are some of the most effective spreaders of the virus in the community, and young children are a very vulnerable cohort. So far this year, 450 children aged between six months and 17 years old have been hospitalised with influenza. Free flu vaccinations were introduced to address a decline in the number of people getting one post-pandemic. In 2022, 36 per cent of Queenslanders got vaccinated, declining to just 29 per cent by 2024. This year the government extended the program, allocating $25 million towards it. However, Dr Lambert said vaccination rates remained stubbornly low in 2025. "I'm not sure the message is really getting out there, despite our efforts," he said. "I've spoken to friends who aren't involved in health who haven't been aware that they can get a free flu vaccine this year." Dr Lambert said he suspected there was an element of "vaccine fatigue" in the community post-pandemic, and some complacency about the potential seriousness of influenza. He said a small number of people with a strong anti-vaccination stance were also more active and effective at getting their message out there. "They're very energised, they're very vitriolic … and perhaps some of that messaging leaks out into other people who were perhaps sitting on the fence," Dr Lambert said. "It's a shame that's potentially resulted in people having some hesitancy or scepticism about receiving vaccination, because they're one of the best public health interventions we've had in the past 100 years." Dr Griffin said the amount of misinformation about vaccines was very prevalent online. "If people get their information from social media and other outlets that are just full of misinformation, then they'll be misled to a degree that actually creates a very significant amount of harm. "So, get your information from reputable sources."
ABC News
26-06-2025
- Health
- ABC News
Could a combined flu and COVID vaccine lift immunisation rates?
On a Tuesday in Sydney's south-west, Kenneth McCroary's clinic was full, as it often is. The Campbelltown-based GP sees everyone in his local area — newborns, pregnant women, and patients nearing 100 years old. The hours often stretch long, especially so at this time of year. Flu season in Australia typically hits between April and October, and this year is no exception. For Dr McCroary, the crunch of these cases has been compounded by a simultaneous uptick in COVID-19 infections. As of Thursday, there had been 102,817 confirmed COVID and more than 138,000 flu cases nationally this year. These viruses are the leading causes of death via acute respiratory infections — 514 and 102 deaths, respectively, between January and April. "I've had eight-weekers this week with COVID; I've had a six-month-old baby with COVID. We've had influenza A in kids and older adults as well," Dr McCroary said when the ABC visited. But despite the spread, less than 19 per cent of Australians aged 15 to 50 have received a flu shot this year, as of June 22, according to the National Centre for Immunisation Research and Surveillance (NCIRS). That is well below the 55 per cent target for those under 65 years old. For COVID, about 771,000 vaccine doses were administered in NSW in the 12 months to June 11 and 2.6 million nationwide, according to government data. Dr McCroary blames a mix of COVID fatigue and vaccine hesitancy for vaccination rates falling behind. A survey by NCIRS also found time constraints, access, and cost-of-living pressures are contributing factors. The immediate solution to this shortfall is not clear, but Dr McCroary said one measure that may help is a combined COVID-flu vaccine. "Having a combined vaccine is hopefully going to make it a little bit easier, a little more convenient for people to take that step, particularly in the one shot." The concept of a combination vaccine is straightforward — one shot to cover multiple threats. It's also not without precedent. The measles, mumps, rubella, and varicella (MMRV) vaccine has long been an effective standard in childhood scheduling, while modern flu doses are designed to protect against multiple strains. But this technology's promise and potential are increasingly drawing more attention. In its latest vaccination strategy, the federal government flagged combination vaccines for respiratory diseases as one possible pathway to increasing immunisation rates. No dual vaccine for COVID and influenza has been approved for use across the world, but developers and researchers are in pursuit of a combination shot. In phase 3 human trials, both Moderna and Pfizer's mRNA iterations have reported positive results. "There's a lot of secondary benefits that the majority of people don't need to be concerned about — in terms of things like consumables and clinic time and medical waste, for example — that could all be benefited by having combination vaccines," Professor Griffin said. "We just hope by making it simpler, easier, potentially cheaper, then that might have a positive impact on uptake, which is certainly nowhere near where it needs to be for either of these pathogens at the moment." There currently is no clear date for rollout, with Moderna last month withdrawing its regulation submission to the Food and Drug Administration (FDA), citing pending efficacy data of a separate flu vaccine as the reason. But even when these vaccines do become available, one difficulty on the horizon could be administration. While flu immunisation tends to follow a predicted rise of infections, COVID waves are far less predictable. "The downside is that COVID doesn't yet obey the same rules flu does. It doesn't exclusively occur in winter," said Tony Cunningham, director of the Centre for Virus Research at The Westmead Institute for Medical Research. Research published in the Medical Journal of Australia earlier this month found administering influenza and COVID vaccines together could reduce hospitalisations in the latter. But COVID's erratic nature alongside vaccine antibodies waning after six months means the risk of infection and transmission are heightened if cases spike beyond that window. "If that occurs, it can affect the unimmunised or poorly immunised people who might then get very sick and go to hospital, particularly those in aged care," Professor Cunningham said. Still, he said, the upside of a future combined vaccine lies in its ability to improve coverage. A persistent issue that health workers like Dr McCroary are dealing with now. "With your health, talk to health practitioners, talk to your GP," he said. "I'm still writing death certificates for COVID and influenza during this season because we expect that [infection] numbers will be going up again now."
