July 3, 2025 • 37 mins
When two mothers’ babies - too young for vaccination - caught measles in the early 1980s, they never imagined it would lead, years later, to a fatal diagnosis that would cut their lives short.
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Speaker 1 (00:03):
Today, New South walest Health has taken the opportunity to
remind the community about the importance of measles protection.
Speaker 2 (00:09):
Look, I really do worry about measles. It's one of
those diseases that in the first say ten years of
working in pediatrics in Australia, I didn't really come across,
but have increasingly come across over the last few years.
And people in Australia I think, have become complacent about measles.
Speaker 3 (00:29):
But measles is.
Speaker 2 (00:30):
A terrible disease.
Speaker 4 (00:35):
That's New South Wales Chief Medical Officer, Doctor Kerry Chant
and Pediatric Infectious Diseases physician and researcher Doctor Philip Britton
in April this year, issuing a health warning about measles
cases rising across Australia. This comes alongside a three year
decline in vaccination rates, raising concerns in the local medical
(01:00):
unity amid global outbreaks. Why are Australians vaccinating less considering
past the experiences with outbreaks and more importantly, how can
this impact our most vulnerable people in our community, our children.
Speaker 1 (01:18):
When Lane have measles, I was back in Perth. She
wasn't overly sick, she was just a bit miserable, more
and more fluids, wanting to be with mum all the time.
Speaker 5 (01:27):
We were aware of measles, but it wasn't it wasn't
sort of something that was We didn't know the harsh
side effects of it.
Speaker 4 (01:37):
In the early nineteen eighties, two babies contract the measles
virus during an outbreak of the disease spreading across New
South Wales, Australia. One is ten months old and the
other is just six weeks, Both who are too young
to have received their measles vaccination, will later learn the
(01:58):
devastating effects of a measles infection when out of nowhere
years later, they start showing signs of confusion and forgetfulness,
and a doctor diagnoses a fatal disease called the sub
acute sclerosing pancephalitis or SSPE.
Speaker 1 (02:19):
Okay, one question, one question only, Did you have measles
as a baby? And I went, oh, yes, and I
said sespa, And he goes, That's what I'd be thinking.
And he actually said to me, she's probably only got
two weeks to live at this stage.
Speaker 5 (02:35):
He couldn't walk, He could click his fingers. That was
probably he used to just sit and click his fingers
for hours. Yeah, he just couldn't walk, and then he
slowly started to lose his voice to.
Speaker 6 (02:49):
The measle as far as can lie dormant in the brain,
and then several years after the infection it can reactivate,
and then that steadily causes deterioration and mental function and
physical function and almost always results in death and due course.
Speaker 1 (03:15):
She was born at King Edward Hospital in Perth in
November eighty two. Sadly, I lost my first baby at birth,
so yeah, Lane was my second, and yeah, I sure
to remember her birth because I rang her father he
was at a France and said, you know, my waters
have busted, Please come and take me to hospital. And
(03:37):
he'd went, oh, yeah, sure, You've got plenty of time.
And he came home, had a shower, and then I
was saying, quick, I need to go to hospital. And
then he took me to a tour of King's Park
in Perth and I'm going hospital and I was kind
of making faces to people next, you know, at the stoplights,
making faces and going my you know, I want to
(03:57):
have this baby. We got to the hospital and so
I'll come back tomorrow. It won't be till seven thirty
and they went, no, that's like now, like in twenty minutes,
and then she just had her and that was it
beautiful And of course people at the hospital were really
excited because I knew what I'd gone through losing my
other daughter, and so yeah, she become a bit of
(04:18):
a cellob there.
Speaker 4 (04:20):
It's nineteen eighty two and a nurse and a new mom.
Cecily Johnson is temporarily staying in Sydney with her now
ten month old daughter Lane Old. Though they usually reside
in Geraldton in Western Australia, they relocated for a time
due to threats related to her partner's work as a
(04:42):
police officer.
Speaker 1 (04:44):
So for Laine and my safety, we went to Sydney
to stay to further notice. I didn't know there was
an outbreak of measles at the time. In Sydney. I
was a nurse, so I would have had her immunized early,
but I was not aware of an outbreak. It wasn't
till we got back to Perth that she came out
in the rash and straightaway I knew it was measles.
Speaker 4 (05:10):
Frank Beard, Associate director at the National Center for Immunization
Research and Surveillance, has twenty years experience in communicable diseases
and immunization. He explains that to be fully protected against measles,
children needed two doses, the first at twelve months and
(05:32):
the second at eighteen months. In the cases of high risk,
it can be given to children as young as six
months old.
Speaker 6 (05:43):
So measles is a viral illness caused by the measles virus,
and so people with measles usually start with a fever
and running nose, red eyes, and cough, and then they
developed this typical rash that spreads all over the body.
So people with measles are usually quite unwell and miserable,
(06:05):
and it's quite common to be hospitalized for complications like
pneumonia and more rarely enkephylitis swich is inflammation of the
lining of the brain and can be quite serious and
caused death.
Speaker 4 (06:23):
But in nineteen eighty two, the measles vaccine had only
been around for a little over ten years, and the
vaccination rate was still low, only about seventy percent, despite
assurances of its effectiveness. As seven News reported, do.
Speaker 3 (06:41):
You believe there's something inherently wrong with the vaccine itself?
Speaker 4 (06:43):
No, I don't think there's anything wrong with the vaccine,
and in fact, investigations have shown that there is nothing
wrong with the vaccine when it's tested as it reaches
the shores of Australia. Nevertheless, given the low vaccination rate
at the time, about the two thousand people hospitalized during
that outbreak in the early nineteen eighties and children born
(07:05):
then were more at risk of one of the world's
most contagious diseases. It's only after returning to Western Australia
that Cecily's daughter Lane starts showing signs of the measles.
Speaker 1 (07:22):
She wasn't overly sick. She was just a bit miserable,
wanting more fluids, wanting to be with mum all the time.
I didn't need any medical intervention then. I just thought, okay,
we darkened the rooms, which back then you were told
to put paper up on the windows to make the
rooms dark. So I did that. She got through it
(07:43):
no problem, never thought any more about it.
Speaker 4 (07:57):
Lane recovered and by nineteen ninety Cecily and her partner
had split up, and Lane, now seven and a half
years old and a big sister, started primary school. After
spending some time with her dad, Lane returns home to
her mom, but Cecily notices something unusual, Lane seems confused.
Speaker 1 (08:20):
I'd say to her like, okay, pop in the shower,
Oh where's the shower? And I'd say, oh, come, are
we going in the car? Of how do I get
in the car? And then I was going, hey, this
isn't all making sense. So they were only small things,
but enough to go there's something wrong. I took it
to a doctor. I ended up taking her to six
(08:41):
doctors because I knew there was something wrong. I had
no idea what it was, but I just knew this
wasn't the same child. There's something going on. But she
couldn't explain. And then she said to me, I feel dumb.
One day she just said, I feel dumb. Send me
back to preschool. And my friend and I were like, yeah,
there's something wrong, Like I said, six doctors. So I
(09:04):
flew down to the Children's Hospital in Perth and I
thought I'll take her there. So I went to ed.
They couldn't find anything wrong with her. They actually questioned
my girlfriend, could this mother be on drugs? And she said,
no way, you know, and she knows.
Speaker 4 (09:19):
A child refusing to leave the hospital. Sasily says security
is cold. Then their police, and eventually Family and Children's Services,
who she says a threatened to take Lean away from her.
Speaker 1 (09:34):
They ended up admitting as with me having munch house
since by proxy, where I supposedly thought my child was ill.
And then I bumped into a doctor that I knew
really well in the hospital, senior specialist, and I said
to him, like, my daughter's really ill. Could you see her?
And he said, well, and I need a referral and
(09:55):
I said please, I'm bigging And then he said, okay,
tell me, just what are you finding? What's wrong? I
told you, mum, we've been admitted with me so called
munch Housen's by proxy. And he said, well, what do
you think's wrong with her? And he said tell me
and I went okay, and I did, and he said, okay,
one question, one question only. Did she have measles as
(10:17):
a baby? And I went, oh, yes, and straight away
I knew what it was because I've nursed children with this.
And I said sspa, and he goes, That's what I'd
be thinking. But I can't see her, So I begged
him and he went down to EG spoke with the doctors.
They went off about me talking to a specialist. You know, well,
(10:38):
I couldn't, and they did tests and within days were
it was diagnosed that she had SSPA, and he actually
said to me, she's probably only got two weeks to
live at this stage.
Speaker 4 (10:54):
Within the next two weeks, Lane will have lost her
ability to see, speak, and walk.
Speaker 1 (11:01):
When she went blind, she said to me, Mommum, just
let me see your face one more time. I think
that was the hardest thing I've ever ever heard in
my life. That was pretty tough that I couldn't sort
that out for her. So it was very hard to
watch a very active child, very gifted child, go blind.
(11:24):
To watch her who was so active, unable to walk anymore.
And then when her voice went that was in for me.
Not to hear a talk at all was just all
too much, and we all told she'd pass away. I
nursed her for five years at home, but it was
a tough five years for her. It was like she
(11:47):
had no quality of love. Just in the bed, shower,
bed feed That was it. I've nursed a lot of children,
but I know this was my child, so it's always tougher,
but it's one of the toughest.
Speaker 6 (12:10):
Can be very difficult to diagnose because the symptoms are
quite general, so deteriorating mental function and then physical function,
so it often does take a while for it to
be diagnosed. SSP, or subacute sclerosing pin and kephalitis, which
(12:31):
is a bit of a mouthful.
Speaker 3 (12:33):
Is a very rare.
Speaker 6 (12:37):
But extremely devastating disease which comes after several developed several
years after somebody has had measles, so the measle as
far as can lie dormant in the brain and then
several years after the infection it can reactivate, and then
that steadily causes deterioration and mental function and physical function
(13:03):
and almost always results in death and due course.
Speaker 4 (13:09):
According to the Australian government's Department of Health, this stability
and aging, there are no anti viral treatments available for SSPE.
Speaker 1 (13:19):
Today.
Speaker 4 (13:20):
Anti viral medication can slow down a disease and reduce
its symptoms to hopefully allow a person to live longer
and more comfortably. But back in nineteen ninety when Lane
was diagnosed, Cecily says that she was told of an
anti viral type medication which might help her if they
(13:42):
could get access to it. This is an interview Cecily
did with the Midday show with Ray Martin in nineteen.
Speaker 3 (13:50):
Ninety A.
Speaker 1 (13:58):
Treatment for the key.
Speaker 7 (14:00):
A terrible irony this is you said, Let me just
read quickly from your lever again the lett he wrote
to me. You said that I could just sit back
and feel sorry for myself and family, but I won't.
I want I went public because I don't want others
to suffer what we are suffering.
Speaker 1 (14:13):
The doctor told me there was a medication that could
stop the progress of the illness. Doesn't work with all children,
but it you know, it's a chance to have. So
of course I was right for all that if we
get that right now, if we get that into her,
that means she might keep a vision. So I thought, yeah,
(14:33):
we'll have it, get give it. And they said, well,
we haven't got it here. It's only in America. So
I thought, when you mean America, like, you must have
this this children in Australia with this illness, and they go, now,
it's only made in America. We can only get it
from America. It's going to take quite a while to
get it, and so I was pretty desperate. And then
I did a bit of research and I found out
(14:54):
that the medication was actually made in Epping, in New
South Wales, and then a mother seen us on TV
and in the newspapers, and she came in and she
had that medication that she'd had for her boy, and
so they started her on that medication, but she had
every side effect there was to have. It really didn't
suit her. So sadly, after all the problems of getting
(15:18):
that medication, it didn't work for Lane.
Speaker 4 (15:22):
For the next five years, Cecily cared for Lane alone
while advocating for immunization and raising awareness about SSPE. This
made her a target for some people opposed to vaccinations.
Speaker 1 (15:38):
I knew i'd get backlash. I knew that because we're
always aware of that. When I received death threats and
death threats on my boy, that was probably one of
the hardest things. Couldn't believe that people could do such
a thing. Messages were coming to the hospital, which they
didn't even give me in the end, but I had
(16:00):
a few visitors come with. I said, I don't know them,
they are anti vaxus. It came to the hospital, they
knew where we were. It was pretty tough, but I
knew I had to fight for this and I knew
I needed to get that word out.
Speaker 7 (16:14):
When you first spoke to me. The reason you contacted
us was that you said that you really wanted to
learn other mothers and other parents to the fact that
he was a case of your daughter didn't even get
a chance to get him in as she got the
meedles from someone else who didn't had me in Imina.
You were working as a school nurses. Well, what did
parents say to you when you were suggested to them
that they should imnize their children?
Speaker 1 (16:32):
Many had lots of different excuses. A lot were into
herbal immunization, which is just pure shit.
Speaker 7 (16:37):
I mean, there's just no other word for it, you know,
there's just no such thing as it.
Speaker 1 (16:41):
And others just couldn't be bothered going down and didn't
have time to go down. Said I'd hurt the baby
and it hurts them to go down and get it done.
Speaker 4 (16:49):
But man, this hurts more.
Speaker 1 (16:50):
Just look at my child, who was a healthy, normal child.
Speaker 4 (16:57):
Us A nurse, Cecily knew exactly what equip mean she
needed for Lane, but getting it was a battle. The
Children's Hospital in Perth had all the unused equipment, but
even that Cecily had to fight to get her hands on.
She eventually moved to Perth, hoping for better medical treatment.
Speaker 1 (17:20):
Laine started getting very very ill. She was twelve then,
and I thought this is going to be the end
of this illness. I think it's just really taken over.
Speaker 4 (17:33):
Laine passed away at the age of twelve at home
in Cecily's arms in nineteen ninety five. For five years,
from the age of seven to twelve, she had lived
with SSPE. Cecily says it was like watching her daughter
die every day. During her memorial service, Cecily says anti
(17:55):
vaxxers showed up causing a scene after learning about Laine's
passing in the local paper. In another corner of New
South Wales was Diane Cohen, whose son Matthew's story was
far too similar to that of Cecily's daughter Lane. At
(18:18):
the age of just six weeks old in nineteen eighty one,
Baby Matthew contracted the Missiles virus. Six years later, on
his sixth birthday, he was diagnosed with SSPE. Matthew's story, however,
would be a much longer one.
Speaker 5 (18:36):
When he was born, he was a perfect baby, beautiful
blonde hair.
Speaker 3 (18:42):
He was just a sheeky, boisterous little boy. You know.
Speaker 5 (18:45):
I used to You'd tell him not to roll in
the sand, and he'd go and roll in the sand
or first in the water or yeah.
Speaker 3 (18:53):
But he was just a beautiful little boy.
Speaker 4 (18:57):
This is a recording of Matthew when he was younger.
Speaker 3 (19:00):
How are you good?
Speaker 1 (19:02):
How are y?
Speaker 8 (19:05):
How?
Speaker 3 (19:05):
Whi yah?
Speaker 1 (19:06):
How are you going?
Speaker 8 (19:09):
Hi go?
Speaker 5 (19:10):
What?
Speaker 3 (19:11):
What?
Speaker 1 (19:12):
Hell?
Speaker 5 (19:14):
My mom come to visit when he was only tiny
riding one of those little plastic bikes and Mum sat
on it, you know, and of course it was his bike,
so he pushed mam off and Mum ended up on
the ground and it was like my bike Nana.
Speaker 4 (19:34):
Like Cecily's daughter Lane, Matthew, who had contracted missiles when
he was too young to have received the missile's vaccine,
began showing symptoms of SSPE out of nowhere. It was
just like any other day. Matthew was in kindergarten when
Diana got a call from the school saying Matthew was
(19:55):
being disruptive in class.
Speaker 3 (19:57):
And I thought, that's not Matthew. Use this.
Speaker 5 (20:00):
You know, he's boisterous at home, but he know he
respects people, so he's not going to be naughty. So
I went to the school and what I saw was
just out of the ordinary.
Speaker 3 (20:12):
It was. I knew straight away.
Speaker 5 (20:14):
That there was something wrong with him. I could tell
that this just wasn't normal. So I raced him off
to the doctors and the doctor told me I was
paranoid that because I'd had a younger son that had
a stroke at sixteen months.
Speaker 3 (20:33):
He said, you're just paranoid.
Speaker 1 (20:34):
You know.
Speaker 5 (20:35):
You can't have two children with an affliction, you know,
And yeah, So I just took him to Children's Hospital
and that's where it all started. I just went in
there thinking that he had epilepsy or something like that,
you know, not to be given the sentence that he got.
Speaker 4 (20:56):
You know, on Matthew's sixth birthday, on the fifteenth of
June in nineteen eighty seven, he got the diagnosis that
was to change his life forever. Within the next week,
he would start to lose his ability to walk, and
in the week after that get pneumonia and lose his
(21:16):
ability to talk.
Speaker 5 (21:17):
I remember cuddling Matthew in the car all the way home.
It was pretty pretty horrific. We give him a birthday
party the week after that and all of the children
from school come. We just put it out there and said,
you know Matthew would We said to Matthew, what would
you like for your birthday? And he said, all the
kids at my school to come to my party. So
(21:39):
all the kids said his school come to his party.
Speaker 4 (21:44):
A professor at a children's hospital in Sydney said Matthew
might not even have more than six weeks to live.
But he also told Diane about an anti viral medication
called isoprenissen that could help treat his symptoms. To access
the drug, she would need TGA approval, which the professor
(22:05):
agreed to obtain until Matthew turned sixteen.
Speaker 5 (22:09):
So we used this medication and like I saw a
big improvement in Matthew.
Speaker 3 (22:17):
But it was really hard to convince other people.
Speaker 5 (22:20):
I used to take video recordings of him doing things.
Speaker 3 (22:25):
Like he would.
Speaker 5 (22:26):
He went from being a little boy that was very
rigid and expressionless, had no expressions, to a little boy that.
Speaker 3 (22:36):
You could sit up and.
Speaker 5 (22:39):
He'd smile when you you know, especially with his brother,
because they were the best of buddies. His brother would
tell him a joke and he'd think it was funny,
so he'd smile. So I had to run around with
a video came 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
(23:00):
what Matthew did.
Speaker 3 (23:01):
Because they didn't believe me. I'd take Matthew to the
hospital or to a doctors and he'd go to sleep,
you know. So he just didn't want to know about it.
Speaker 5 (23:10):
He couldn't walk. He could click his fingers. That was
probably he used to just sit and click his fingers
for hours. Yeah, he just couldn't walk, and then he
slowly started to lose his voice. He ended up having
a perforated esophagures from having a tubes.
Speaker 3 (23:30):
Put down to see what was wrong. So he ended
up with a feeding tube.
Speaker 5 (23:34):
And then he slowly lost control of his bladder.
Speaker 3 (23:39):
That was probably five years.
Speaker 5 (23:42):
And then he just maintained that he didn't get any worse,
he didn't get any better.
Speaker 3 (23:49):
He just was Matthew right to the end.
Speaker 4 (23:54):
For the next forty two years, Diane's focus was on
Matthew her job and applied for a career's pension to
care for him at home, with professional cares coming in
to help out a few days a week. But similarly
to Cecily, Diane says it was hard to get hold
(24:15):
of the equipment or even to provide proof as to
why she needed it for Matthew. While some of his
treatment was funded through the hospital, a lot was from
her own pockets or through the kindness of an occupational
therapist who wanted to help out.
Speaker 3 (24:33):
You know, he was my son. I wanted to look
after him, and I achieved. I achieved that like I did.
Don't want pets on the back or nothing like that.
He was my son.
Speaker 5 (24:45):
You know, It's the same as having a baby. You
look after your baby, and that's the way I looked
at it.
Speaker 4 (24:51):
Throughout the years of caring for Matthew, Diane says she
became socially isolated. While there might have been support group
of a parents going through the same thing, she felt
like there wasn't time for that in her day. One
day in the early two thousands, out of nowhere, she
was contacted by a woman whose child had died from
(25:14):
the same disease her son was living with.
Speaker 5 (25:17):
It was Cecily, there was somebody that knew what we
were going through. Well, I don't think the doctors have
enough understanding or expertise in SSPE so that they can
do anything, but us parents just want some compassion. We
(25:39):
want a friend at that time, and we certainly don't
have it, didn't.
Speaker 3 (25:44):
Have any like you know.
Speaker 5 (25:46):
It even impacts families, and families don't understand it, so
they back away.
Speaker 3 (25:51):
Friends back away, you know, so you become well.
Speaker 5 (25:57):
I still say that I'm socially isolated because trying to
get back out in society now is I just don't
feed in, you know, I don't feed into society because
I've been out of it for forty two years.
Speaker 4 (26:23):
The measles vaccine was introduced to Australia in nineteen sixty
nine and over the next two decades was combined with
the REBELLA and mumps vaccines, creating the MMR vaccine. In
a twenty fourteen the World Health Organization declared Australia had
eliminated the endemic transmission of measles, meaning the disease was
(26:47):
no longer spreading locally within the country. This was a
status the country reached with the help of the federal
Government's Immunise Australia Seven Point Plan in used in nineteen
ninety seven to try to improve vaccination coverage.
Speaker 6 (27:05):
So vaccination coverage increase substantially after that and measles cases
reduce substantially and we really haven't had any large outbreak
since then. So we have a lot of cases that
are imported from overseas and sometimes they have a little
bit of spread to our contacts in Australia, but no
(27:29):
ongoing spread.
Speaker 4 (27:32):
One way Australia reduces the risk of a vaccine preventable
diseases spreading is by trying to stay above something called
the herd immunity threshold. This is the percentage of the
population that needs to be immune to a disease to
stop it from spreading. The threshold for childhood immunization in
(27:53):
Australia is ninety five percent and is set to cover
several diseases including missiles. To reach that level, it requires
children to have received all the vaccines recommended for their
age under the National Immunization Program. However, right now, fully
(28:14):
vaccinated coverage in the country has fallen to about ninety percent,
and according to Frank, it's been gradually declining over the
past four years and looking at the MMR coverage specifically
between twenty twenty two and twenty twenty three, the first
dose of the MMR vaccine in children at twenty four
(28:38):
months of age dropped just slightly below the national targets,
and while it's not a major cause for concern at
this stage, an increase in measles cases this year is
well short of an outbreak. Frank says the declining vaccination
rate does need to be addressed.
Speaker 6 (28:56):
Measles becoming and demic again is always concern. However, unless
we had a substantial and sustain decrease in vaccination further
from where we are, they were likely to be over
only a risk over a period of decades.
Speaker 3 (29:14):
So obviously it's.
Speaker 6 (29:16):
Not good and we want to reverse that rather than
just letting them slide. And that does increase the amount
of work that public health units have to do. But
important to note that the increase in cases of measles
in Australia is the decreasing vaccination coverage rates in young
(29:40):
children is only a very small contributor to that, so
most of the cases are due to increasing travel and
outbreaks overseas and returning travelers who may not have been
fully vaccinated.
Speaker 4 (29:56):
In twenty twenty three, the National Center for Immunization Research
and Surveillance Australia published its annual Immunization Coverage Report. The
report includes a map showing the coverage rates of the
first and second doses of the MMR vaccine across Australia
(30:17):
and its major capital cities. Overall, the first dose coverage
is strong, staying well above ninety percent, but then there's
a drop when it comes to the second dose, especially
in rural and remote parts of the Western Australia, the
Northern Territory and South Australia, where coverage has fallen behind
(30:39):
a lot. Some experts have suggested that the fall in
vaccinations across the country is partly due to people's attitudes
towards vaccinations shifting after the COVID nineteen pandemic. While Frank,
who was involved in compiling the report, believes that polarized
debates around COVID vaccine are to blame for the increased
(31:02):
concerns surrounding vaccinations, it's not the sole reason nor barrier.
Speaker 6 (31:10):
So we've at our center has been reporting annual imminization
coverage for almost twenty years. So before the pandemic, our
vaccination coverage and children had been steadily increasing for about
seven or eight years. However, our latest report, recently released
(31:31):
on twenty twenty four, data showed that there's been a
steady year on year decrease since the pandemic at all
the ages where we measure a vaccination coverage, so one,
two and five years. And so last year we did
a large national survey of parents of young children and
(31:54):
we found that they reported a range of barriers to vaccination,
which we broadly grew into two areas, access barriers and
acceptance barriers. So looking at access barriers, they are practical barriers.
So parents were reporting difficulty prioritizing vaccination, difficulty getting an
(32:17):
appointment vaccination, and associated costs. So we know that GPS
are the main eminizers 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
billing GPS. Then, in terms of acceptance barriers, that's people's
(32:43):
concerns about vaccination, about safety and effectiveness, and so parents
are certainly reporting those concerns.
Speaker 3 (32:53):
Those concerns are being around for a long time. To
some degree.
Speaker 4 (32:58):
MMR vaccines are provided free under the National Immunization Program,
but they're not equally readily available across the country. In
New South Wales, MMR vaccines are available at around four
thousand general practice clinics and community pharmacies, as well as
through aboriginal medical services. That three thousand, two hundred and
(33:22):
twelve more providers than in Western Australia, which has just
five hundred and forty four providers in Perths metropolitan area
and only two hundred and forty four across the state's
vast regional areas. Today, both Cecily and Diane carry the
(33:45):
memory of their children with them every day and everywhere
they go. Last year, Cecily went to Bali, which she
had visited with Lane five months before her diagnosis, and
as someone who has been so outspoken in embracing awareness
about misul's vaccination and SSPE, her daughter comes to mind
(34:07):
anytime she is contacted for a comment or runs into
someone who has come across her story.
Speaker 1 (34:13):
And I've diagnosed three children with SESP since Laine have it,
so people tell me that it's a very rare disease.
It isn't as rare as people try to say it is,
because it's just not. I know too many cases myself.
Sure I know them because of my daughter having it,
but I have also loves children with it and I
(34:34):
know it isn't as rare as what it.
Speaker 4 (34:36):
Is for Diane, who lost Matthew three years ago. She
likes to remember him as a cheeky little boy. This
is the song she wrote about him.
Speaker 8 (35:00):
Outside, and the story was everybody he knows it's a
special alone. He was right. So he was six, and
of ours, he was a certain one, as he could.
Speaker 5 (35:24):
Probably three weeks before he passed away.
Speaker 8 (35:32):
I'm sorry.
Speaker 3 (35:36):
He used to just look at me.
Speaker 5 (35:39):
He would just look at me and stare at me,
and I couldn't work out what it was, but I
think he was telling.
Speaker 3 (35:46):
Me it was time, it was time to go.
Speaker 5 (35:49):
And I went out for dinner the night before and
come home and kissed him good night and everything, and
he just went to sleep.
Speaker 8 (36:00):
It didn't make up.
Speaker 4 (36:04):
She thinks there needs to be more emotional as well
as financial support to families going through what they did
after Matthew's diagnosis.
Speaker 5 (36:13):
The kids missed out on the hell of a lot
normal things that people have in their lives.
Speaker 3 (36:18):
We couldn't have because we couldn't afford it.
Speaker 5 (36:21):
My eldest son, he went off to Kara's camp a
couple of times, but he felt lost because nobody at
Care's camp was dealing with the same things that he
was dealing with, so he felt lost and wouldn't go
because no one understood.
Speaker 3 (36:37):
No one understood what he was going through.
Speaker 4 (36:41):
And as for what Diane would say to anyone going
through the same thing.
Speaker 5 (36:46):
Never give up, Never give up hope, because hope's the
only thing you've got.
Speaker 8 (36:51):
Agree, he's a g Anyone shows you love, got a smile,
but bray you a bit more. You'll never be.
Speaker 6 (37:27):
Hi.
Speaker 1 (37:27):
I'm Aline and I'm Lucy.
Speaker 4 (37:29):
Thanks for watching and listening to seven New Spectrum.
Speaker 2 (37:32):
If you have a story that you think when make
a good episode, let us know at seven News Podcast
at gmail dot com.
Speaker 1 (37:38):
Thanks
Today, New South walest Health has taken the opportunity to
remind the community about the importance of measles protection.
Speaker 2 (00:09):
Look, I really do worry about measles. It's one of
those diseases that in the first say ten years of
working in pediatrics in Australia, I didn't really come across,
but have increasingly come across over the last few years.
And people in Australia I think, have become complacent about measles.
Speaker 3 (00:29):
But measles is.
Speaker 2 (00:30):
A terrible disease.
Speaker 4 (00:35):
That's New South Wales Chief Medical Officer, Doctor Kerry Chant
and Pediatric Infectious Diseases physician and researcher Doctor Philip Britton
in April this year, issuing a health warning about measles
cases rising across Australia. This comes alongside a three year
decline in vaccination rates, raising concerns in the local medical
(01:00):
unity amid global outbreaks. Why are Australians vaccinating less considering
past the experiences with outbreaks and more importantly, how can
this impact our most vulnerable people in our community, our children.
Speaker 1 (01:18):
When Lane have measles, I was back in Perth. She
wasn't overly sick, she was just a bit miserable, more
and more fluids, wanting to be with mum all the time.
Speaker 5 (01:27):
We were aware of measles, but it wasn't it wasn't
sort of something that was We didn't know the harsh
side effects of it.
Speaker 4 (01:37):
In the early nineteen eighties, two babies contract the measles
virus during an outbreak of the disease spreading across New
South Wales, Australia. One is ten months old and the
other is just six weeks, Both who are too young
to have received their measles vaccination, will later learn the
(01:58):
devastating effects of a measles infection when out of nowhere
years later, they start showing signs of confusion and forgetfulness,
and a doctor diagnoses a fatal disease called the sub
acute sclerosing pancephalitis or SSPE.
Speaker 1 (02:19):
Okay, one question, one question only, Did you have measles
as a baby? And I went, oh, yes, and I
said sespa, And he goes, That's what I'd be thinking.
And he actually said to me, she's probably only got
two weeks to live at this stage.
Speaker 5 (02:35):
He couldn't walk, He could click his fingers. That was
probably he used to just sit and click his fingers
for hours. Yeah, he just couldn't walk, and then he
slowly started to lose his voice to.
Speaker 6 (02:49):
The measle as far as can lie dormant in the brain,
and then several years after the infection it can reactivate,
and then that steadily causes deterioration and mental function and
physical function and almost always results in death and due course.
Speaker 1 (03:15):
She was born at King Edward Hospital in Perth in
November eighty two. Sadly, I lost my first baby at birth,
so yeah, Lane was my second, and yeah, I sure
to remember her birth because I rang her father he
was at a France and said, you know, my waters
have busted, Please come and take me to hospital. And
(03:37):
he'd went, oh, yeah, sure, You've got plenty of time.
And he came home, had a shower, and then I
was saying, quick, I need to go to hospital. And
then he took me to a tour of King's Park
in Perth and I'm going hospital and I was kind
of making faces to people next, you know, at the stoplights,
making faces and going my you know, I want to
(03:57):
have this baby. We got to the hospital and so
I'll come back tomorrow. It won't be till seven thirty
and they went, no, that's like now, like in twenty minutes,
and then she just had her and that was it
beautiful And of course people at the hospital were really
excited because I knew what I'd gone through losing my
other daughter, and so yeah, she become a bit of
(04:18):
a cellob there.
Speaker 4 (04:20):
It's nineteen eighty two and a nurse and a new mom.
Cecily Johnson is temporarily staying in Sydney with her now
ten month old daughter Lane Old. Though they usually reside
in Geraldton in Western Australia, they relocated for a time
due to threats related to her partner's work as a
(04:42):
police officer.
Speaker 1 (04:44):
So for Laine and my safety, we went to Sydney
to stay to further notice. I didn't know there was
an outbreak of measles at the time. In Sydney. I
was a nurse, so I would have had her immunized early,
but I was not aware of an outbreak. It wasn't
till we got back to Perth that she came out
in the rash and straightaway I knew it was measles.
Speaker 4 (05:10):
Frank Beard, Associate director at the National Center for Immunization
Research and Surveillance, has twenty years experience in communicable diseases
and immunization. He explains that to be fully protected against measles,
children needed two doses, the first at twelve months and
(05:32):
the second at eighteen months. In the cases of high risk,
it can be given to children as young as six
months old.
Speaker 6 (05:43):
So measles is a viral illness caused by the measles virus,
and so people with measles usually start with a fever
and running nose, red eyes, and cough, and then they
developed this typical rash that spreads all over the body.
So people with measles are usually quite unwell and miserable,
(06:05):
and it's quite common to be hospitalized for complications like
pneumonia and more rarely enkephylitis swich is inflammation of the
lining of the brain and can be quite serious and
caused death.
Speaker 4 (06:23):
But in nineteen eighty two, the measles vaccine had only
been around for a little over ten years, and the
vaccination rate was still low, only about seventy percent, despite
assurances of its effectiveness. As seven News reported, do.
Speaker 3 (06:41):
You believe there's something inherently wrong with the vaccine itself?
Speaker 4 (06:43):
No, I don't think there's anything wrong with the vaccine,
and in fact, investigations have shown that there is nothing
wrong with the vaccine when it's tested as it reaches
the shores of Australia. Nevertheless, given the low vaccination rate
at the time, about the two thousand people hospitalized during
that outbreak in the early nineteen eighties and children born
(07:05):
then were more at risk of one of the world's
most contagious diseases. It's only after returning to Western Australia
that Cecily's daughter Lane starts showing signs of the measles.
Speaker 1 (07:22):
She wasn't overly sick. She was just a bit miserable,
wanting more fluids, wanting to be with mum all the time.
I didn't need any medical intervention then. I just thought, okay,
we darkened the rooms, which back then you were told
to put paper up on the windows to make the
rooms dark. So I did that. She got through it
(07:43):
no problem, never thought any more about it.
Speaker 4 (07:57):
Lane recovered and by nineteen ninety Cecily and her partner
had split up, and Lane, now seven and a half
years old and a big sister, started primary school. After
spending some time with her dad, Lane returns home to
her mom, but Cecily notices something unusual, Lane seems confused.
Speaker 1 (08:20):
I'd say to her like, okay, pop in the shower,
Oh where's the shower? And I'd say, oh, come, are
we going in the car? Of how do I get
in the car? And then I was going, hey, this
isn't all making sense. So they were only small things,
but enough to go there's something wrong. I took it
to a doctor. I ended up taking her to six
(08:41):
doctors because I knew there was something wrong. I had
no idea what it was, but I just knew this
wasn't the same child. There's something going on. But she
couldn't explain. And then she said to me, I feel dumb.
One day she just said, I feel dumb. Send me
back to preschool. And my friend and I were like, yeah,
there's something wrong, Like I said, six doctors. So I
(09:04):
flew down to the Children's Hospital in Perth and I
thought I'll take her there. So I went to ed.
They couldn't find anything wrong with her. They actually questioned
my girlfriend, could this mother be on drugs? And she said,
no way, you know, and she knows.
Speaker 4 (09:19):
A child refusing to leave the hospital. Sasily says security
is cold. Then their police, and eventually Family and Children's Services,
who she says a threatened to take Lean away from her.
Speaker 1 (09:34):
They ended up admitting as with me having munch house
since by proxy, where I supposedly thought my child was ill.
And then I bumped into a doctor that I knew
really well in the hospital, senior specialist, and I said
to him, like, my daughter's really ill. Could you see her?
And he said, well, and I need a referral and
(09:55):
I said please, I'm bigging And then he said, okay,
tell me, just what are you finding? What's wrong? I
told you, mum, we've been admitted with me so called
munch Housen's by proxy. And he said, well, what do
you think's wrong with her? And he said tell me
and I went okay, and I did, and he said, okay,
one question, one question only. Did she have measles as
(10:17):
a baby? And I went, oh, yes, and straight away
I knew what it was because I've nursed children with this.
And I said sspa, and he goes, That's what I'd
be thinking. But I can't see her, So I begged
him and he went down to EG spoke with the doctors.
They went off about me talking to a specialist. You know, well,
(10:38):
I couldn't, and they did tests and within days were
it was diagnosed that she had SSPA, and he actually
said to me, she's probably only got two weeks to
live at this stage.
Speaker 4 (10:54):
Within the next two weeks, Lane will have lost her
ability to see, speak, and walk.
Speaker 1 (11:01):
When she went blind, she said to me, Mommum, just
let me see your face one more time. I think
that was the hardest thing I've ever ever heard in
my life. That was pretty tough that I couldn't sort
that out for her. So it was very hard to
watch a very active child, very gifted child, go blind.
(11:24):
To watch her who was so active, unable to walk anymore.
And then when her voice went that was in for me.
Not to hear a talk at all was just all
too much, and we all told she'd pass away. I
nursed her for five years at home, but it was
a tough five years for her. It was like she
(11:47):
had no quality of love. Just in the bed, shower,
bed feed That was it. I've nursed a lot of children,
but I know this was my child, so it's always tougher,
but it's one of the toughest.
Speaker 6 (12:10):
Can be very difficult to diagnose because the symptoms are
quite general, so deteriorating mental function and then physical function,
so it often does take a while for it to
be diagnosed. SSP, or subacute sclerosing pin and kephalitis, which
(12:31):
is a bit of a mouthful.
Speaker 3 (12:33):
Is a very rare.
Speaker 6 (12:37):
But extremely devastating disease which comes after several developed several
years after somebody has had measles, so the measle as
far as can lie dormant in the brain and then
several years after the infection it can reactivate, and then
that steadily causes deterioration and mental function and physical function
(13:03):
and almost always results in death and due course.
Speaker 4 (13:09):
According to the Australian government's Department of Health, this stability
and aging, there are no anti viral treatments available for SSPE.
Speaker 1 (13:19):
Today.
Speaker 4 (13:20):
Anti viral medication can slow down a disease and reduce
its symptoms to hopefully allow a person to live longer
and more comfortably. But back in nineteen ninety when Lane
was diagnosed, Cecily says that she was told of an
anti viral type medication which might help her if they
(13:42):
could get access to it. This is an interview Cecily
did with the Midday show with Ray Martin in nineteen.
Speaker 3 (13:50):
Ninety A.
Speaker 1 (13:58):
Treatment for the key.
Speaker 7 (14:00):
A terrible irony this is you said, Let me just
read quickly from your lever again the lett he wrote
to me. You said that I could just sit back
and feel sorry for myself and family, but I won't.
I want I went public because I don't want others
to suffer what we are suffering.
Speaker 1 (14:13):
The doctor told me there was a medication that could
stop the progress of the illness. Doesn't work with all children,
but it you know, it's a chance to have. So
of course I was right for all that if we
get that right now, if we get that into her,
that means she might keep a vision. So I thought, yeah,
(14:33):
we'll have it, get give it. And they said, well,
we haven't got it here. It's only in America. So
I thought, when you mean America, like, you must have
this this children in Australia with this illness, and they go, now,
it's only made in America. We can only get it
from America. It's going to take quite a while to
get it, and so I was pretty desperate. And then
I did a bit of research and I found out
(14:54):
that the medication was actually made in Epping, in New
South Wales, and then a mother seen us on TV
and in the newspapers, and she came in and she
had that medication that she'd had for her boy, and
so they started her on that medication, but she had
every side effect there was to have. It really didn't
suit her. So sadly, after all the problems of getting
(15:18):
that medication, it didn't work for Lane.
Speaker 4 (15:22):
For the next five years, Cecily cared for Lane alone
while advocating for immunization and raising awareness about SSPE. This
made her a target for some people opposed to vaccinations.
Speaker 1 (15:38):
I knew i'd get backlash. I knew that because we're
always aware of that. When I received death threats and
death threats on my boy, that was probably one of
the hardest things. Couldn't believe that people could do such
a thing. Messages were coming to the hospital, which they
didn't even give me in the end, but I had
(16:00):
a few visitors come with. I said, I don't know them,
they are anti vaxus. It came to the hospital, they
knew where we were. It was pretty tough, but I
knew I had to fight for this and I knew
I needed to get that word out.
Speaker 7 (16:14):
When you first spoke to me. The reason you contacted
us was that you said that you really wanted to
learn other mothers and other parents to the fact that
he was a case of your daughter didn't even get
a chance to get him in as she got the
meedles from someone else who didn't had me in Imina.
You were working as a school nurses. Well, what did
parents say to you when you were suggested to them
that they should imnize their children?
Speaker 1 (16:32):
Many had lots of different excuses. A lot were into
herbal immunization, which is just pure shit.
Speaker 7 (16:37):
I mean, there's just no other word for it, you know,
there's just no such thing as it.
Speaker 1 (16:41):
And others just couldn't be bothered going down and didn't
have time to go down. Said I'd hurt the baby
and it hurts them to go down and get it done.
Speaker 4 (16:49):
But man, this hurts more.
Speaker 1 (16:50):
Just look at my child, who was a healthy, normal child.
Speaker 4 (16:57):
Us A nurse, Cecily knew exactly what equip mean she
needed for Lane, but getting it was a battle. The
Children's Hospital in Perth had all the unused equipment, but
even that Cecily had to fight to get her hands on.
She eventually moved to Perth, hoping for better medical treatment.
Speaker 1 (17:20):
Laine started getting very very ill. She was twelve then,
and I thought this is going to be the end
of this illness. I think it's just really taken over.
Speaker 4 (17:33):
Laine passed away at the age of twelve at home
in Cecily's arms in nineteen ninety five. For five years,
from the age of seven to twelve, she had lived
with SSPE. Cecily says it was like watching her daughter
die every day. During her memorial service, Cecily says anti
(17:55):
vaxxers showed up causing a scene after learning about Laine's
passing in the local paper. In another corner of New
South Wales was Diane Cohen, whose son Matthew's story was
far too similar to that of Cecily's daughter Lane. At
(18:18):
the age of just six weeks old in nineteen eighty one,
Baby Matthew contracted the Missiles virus. Six years later, on
his sixth birthday, he was diagnosed with SSPE. Matthew's story, however,
would be a much longer one.
Speaker 5 (18:36):
When he was born, he was a perfect baby, beautiful
blonde hair.
Speaker 3 (18:42):
He was just a sheeky, boisterous little boy. You know.
Speaker 5 (18:45):
I used to You'd tell him not to roll in
the sand, and he'd go and roll in the sand
or first in the water or yeah.
Speaker 3 (18:53):
But he was just a beautiful little boy.
Speaker 4 (18:57):
This is a recording of Matthew when he was younger.
Speaker 3 (19:00):
How are you good?
Speaker 1 (19:02):
How are y?
Speaker 8 (19:05):
How?
Speaker 3 (19:05):
Whi yah?
Speaker 1 (19:06):
How are you going?
Speaker 8 (19:09):
Hi go?
Speaker 5 (19:10):
What?
Speaker 3 (19:11):
What?
Speaker 1 (19:12):
Hell?
Speaker 5 (19:14):
My mom come to visit when he was only tiny
riding one of those little plastic bikes and Mum sat
on it, you know, and of course it was his bike,
so he pushed mam off and Mum ended up on
the ground and it was like my bike Nana.
Speaker 4 (19:34):
Like Cecily's daughter Lane, Matthew, who had contracted missiles when
he was too young to have received the missile's vaccine,
began showing symptoms of SSPE out of nowhere. It was
just like any other day. Matthew was in kindergarten when
Diana got a call from the school saying Matthew was
(19:55):
being disruptive in class.
Speaker 3 (19:57):
And I thought, that's not Matthew. Use this.
Speaker 5 (20:00):
You know, he's boisterous at home, but he know he
respects people, so he's not going to be naughty. So
I went to the school and what I saw was
just out of the ordinary.
Speaker 3 (20:12):
It was. I knew straight away.
Speaker 5 (20:14):
That there was something wrong with him. I could tell
that this just wasn't normal. So I raced him off
to the doctors and the doctor told me I was
paranoid that because I'd had a younger son that had
a stroke at sixteen months.
Speaker 3 (20:33):
He said, you're just paranoid.
Speaker 1 (20:34):
You know.
Speaker 5 (20:35):
You can't have two children with an affliction, you know,
And yeah, So I just took him to Children's Hospital
and that's where it all started. I just went in
there thinking that he had epilepsy or something like that,
you know, not to be given the sentence that he got.
Speaker 4 (20:56):
You know, on Matthew's sixth birthday, on the fifteenth of
June in nineteen eighty seven, he got the diagnosis that
was to change his life forever. Within the next week,
he would start to lose his ability to walk, and
in the week after that get pneumonia and lose his
(21:16):
ability to talk.
Speaker 5 (21:17):
I remember cuddling Matthew in the car all the way home.
It was pretty pretty horrific. We give him a birthday
party the week after that and all of the children
from school come. We just put it out there and said,
you know Matthew would We said to Matthew, what would
you like for your birthday? And he said, all the
kids at my school to come to my party. So
(21:39):
all the kids said his school come to his party.
Speaker 4 (21:44):
A professor at a children's hospital in Sydney said Matthew
might not even have more than six weeks to live.
But he also told Diane about an anti viral medication
called isoprenissen that could help treat his symptoms. To access
the drug, she would need TGA approval, which the professor
(22:05):
agreed to obtain until Matthew turned sixteen.
Speaker 5 (22:09):
So we used this medication and like I saw a
big improvement in Matthew.
Speaker 3 (22:17):
But it was really hard to convince other people.
Speaker 5 (22:20):
I used to take video recordings of him doing things.
Speaker 3 (22:25):
Like he would.
Speaker 5 (22:26):
He went from being a little boy that was very
rigid and expressionless, had no expressions, to a little boy that.
Speaker 3 (22:36):
You could sit up and.
Speaker 5 (22:39):
He'd smile when you you know, especially with his brother,
because they were the best of buddies. His brother would
tell him a joke and he'd think it was funny,
so he'd smile. So I had to run around with
a video came 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
(23:00):
what Matthew did.
Speaker 3 (23:01):
Because they didn't believe me. I'd take Matthew to the
hospital or to a doctors and he'd go to sleep,
you know. So he just didn't want to know about it.
Speaker 5 (23:10):
He couldn't walk. He could click his fingers. That was
probably he used to just sit and click his fingers
for hours. Yeah, he just couldn't walk, and then he
slowly started to lose his voice. He ended up having
a perforated esophagures from having a tubes.
Speaker 3 (23:30):
Put down to see what was wrong. So he ended
up with a feeding tube.
Speaker 5 (23:34):
And then he slowly lost control of his bladder.
Speaker 3 (23:39):
That was probably five years.
Speaker 5 (23:42):
And then he just maintained that he didn't get any worse,
he didn't get any better.
Speaker 3 (23:49):
He just was Matthew right to the end.
Speaker 4 (23:54):
For the next forty two years, Diane's focus was on
Matthew her job and applied for a career's pension to
care for him at home, with professional cares coming in
to help out a few days a week. But similarly
to Cecily, Diane says it was hard to get hold
(24:15):
of the equipment or even to provide proof as to
why she needed it for Matthew. While some of his
treatment was funded through the hospital, a lot was from
her own pockets or through the kindness of an occupational
therapist who wanted to help out.
Speaker 3 (24:33):
You know, he was my son. I wanted to look
after him, and I achieved. I achieved that like I did.
Don't want pets on the back or nothing like that.
He was my son.
Speaker 5 (24:45):
You know, It's the same as having a baby. You
look after your baby, and that's the way I looked
at it.
Speaker 4 (24:51):
Throughout the years of caring for Matthew, Diane says she
became socially isolated. While there might have been support group
of a parents going through the same thing, she felt
like there wasn't time for that in her day. One
day in the early two thousands, out of nowhere, she
was contacted by a woman whose child had died from
(25:14):
the same disease her son was living with.
Speaker 5 (25:17):
It was Cecily, there was somebody that knew what we
were going through. Well, I don't think the doctors have
enough understanding or expertise in SSPE so that they can
do anything, but us parents just want some compassion. We
(25:39):
want a friend at that time, and we certainly don't
have it, didn't.
Speaker 3 (25:44):
Have any like you know.
Speaker 5 (25:46):
It even impacts families, and families don't understand it, so
they back away.
Speaker 3 (25:51):
Friends back away, you know, so you become well.
Speaker 5 (25:57):
I still say that I'm socially isolated because trying to
get back out in society now is I just don't
feed in, you know, I don't feed into society because
I've been out of it for forty two years.
Speaker 4 (26:23):
The measles vaccine was introduced to Australia in nineteen sixty
nine and over the next two decades was combined with
the REBELLA and mumps vaccines, creating the MMR vaccine. In
a twenty fourteen the World Health Organization declared Australia had
eliminated the endemic transmission of measles, meaning the disease was
(26:47):
no longer spreading locally within the country. This was a
status the country reached with the help of the federal
Government's Immunise Australia Seven Point Plan in used in nineteen
ninety seven to try to improve vaccination coverage.
Speaker 6 (27:05):
So vaccination coverage increase substantially after that and measles cases
reduce substantially and we really haven't had any large outbreak
since then. So we have a lot of cases that
are imported from overseas and sometimes they have a little
bit of spread to our contacts in Australia, but no
(27:29):
ongoing spread.
Speaker 4 (27:32):
One way Australia reduces the risk of a vaccine preventable
diseases spreading is by trying to stay above something called
the herd immunity threshold. This is the percentage of the
population that needs to be immune to a disease to
stop it from spreading. The threshold for childhood immunization in
(27:53):
Australia is ninety five percent and is set to cover
several diseases including missiles. To reach that level, it requires
children to have received all the vaccines recommended for their
age under the National Immunization Program. However, right now, fully
(28:14):
vaccinated coverage in the country has fallen to about ninety percent,
and according to Frank, it's been gradually declining over the
past four years and looking at the MMR coverage specifically
between twenty twenty two and twenty twenty three, the first
dose of the MMR vaccine in children at twenty four
(28:38):
months of age dropped just slightly below the national targets,
and while it's not a major cause for concern at
this stage, an increase in measles cases this year is
well short of an outbreak. Frank says the declining vaccination
rate does need to be addressed.
Speaker 6 (28:56):
Measles becoming and demic again is always concern. However, unless
we had a substantial and sustain decrease in vaccination further
from where we are, they were likely to be over
only a risk over a period of decades.
Speaker 3 (29:14):
So obviously it's.
Speaker 6 (29:16):
Not good and we want to reverse that rather than
just letting them slide. And that does increase the amount
of work that public health units have to do. But
important to note that the increase in cases of measles
in Australia is the decreasing vaccination coverage rates in young
(29:40):
children is only a very small contributor to that, so
most of the cases are due to increasing travel and
outbreaks overseas and returning travelers who may not have been
fully vaccinated.
Speaker 4 (29:56):
In twenty twenty three, the National Center for Immunization Research
and Surveillance Australia published its annual Immunization Coverage Report. The
report includes a map showing the coverage rates of the
first and second doses of the MMR vaccine across Australia
(30:17):
and its major capital cities. Overall, the first dose coverage
is strong, staying well above ninety percent, but then there's
a drop when it comes to the second dose, especially
in rural and remote parts of the Western Australia, the
Northern Territory and South Australia, where coverage has fallen behind
(30:39):
a lot. Some experts have suggested that the fall in
vaccinations across the country is partly due to people's attitudes
towards vaccinations shifting after the COVID nineteen pandemic. While Frank,
who was involved in compiling the report, believes that polarized
debates around COVID vaccine are to blame for the increased
(31:02):
concerns surrounding vaccinations, it's not the sole reason nor barrier.
Speaker 6 (31:10):
So we've at our center has been reporting annual imminization
coverage for almost twenty years. So before the pandemic, our
vaccination coverage and children had been steadily increasing for about
seven or eight years. However, our latest report, recently released
(31:31):
on twenty twenty four, data showed that there's been a
steady year on year decrease since the pandemic at all
the ages where we measure a vaccination coverage, so one,
two and five years. And so last year we did
a large national survey of parents of young children and
(31:54):
we found that they reported a range of barriers to vaccination,
which we broadly grew into two areas, access barriers and
acceptance barriers. So looking at access barriers, they are practical barriers.
So parents were reporting difficulty prioritizing vaccination, difficulty getting an
(32:17):
appointment vaccination, and associated costs. So we know that GPS
are the main eminizers 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
billing GPS. Then, in terms of acceptance barriers, that's people's
(32:43):
concerns about vaccination, about safety and effectiveness, and so parents
are certainly reporting those concerns.
Speaker 3 (32:53):
Those concerns are being around for a long time. To
some degree.
Speaker 4 (32:58):
MMR vaccines are provided free under the National Immunization Program,
but they're not equally readily available across the country. In
New South Wales, MMR vaccines are available at around four
thousand general practice clinics and community pharmacies, as well as
through aboriginal medical services. That three thousand, two hundred and
(33:22):
twelve more providers than in Western Australia, which has just
five hundred and forty four providers in Perths metropolitan area
and only two hundred and forty four across the state's
vast regional areas. Today, both Cecily and Diane carry the
(33:45):
memory of their children with them every day and everywhere
they go. Last year, Cecily went to Bali, which she
had visited with Lane five months before her diagnosis, and
as someone who has been so outspoken in embracing awareness
about misul's vaccination and SSPE, her daughter comes to mind
(34:07):
anytime she is contacted for a comment or runs into
someone who has come across her story.
Speaker 1 (34:13):
And I've diagnosed three children with SESP since Laine have it,
so people tell me that it's a very rare disease.
It isn't as rare as people try to say it is,
because it's just not. I know too many cases myself.
Sure I know them because of my daughter having it,
but I have also loves children with it and I
(34:34):
know it isn't as rare as what it.
Speaker 4 (34:36):
Is for Diane, who lost Matthew three years ago. She
likes to remember him as a cheeky little boy. This
is the song she wrote about him.
Speaker 8 (35:00):
Outside, and the story was everybody he knows it's a
special alone. He was right. So he was six, and
of ours, he was a certain one, as he could.
Speaker 5 (35:24):
Probably three weeks before he passed away.
Speaker 8 (35:32):
I'm sorry.
Speaker 3 (35:36):
He used to just look at me.
Speaker 5 (35:39):
He would just look at me and stare at me,
and I couldn't work out what it was, but I
think he was telling.
Speaker 3 (35:46):
Me it was time, it was time to go.
Speaker 5 (35:49):
And I went out for dinner the night before and
come home and kissed him good night and everything, and
he just went to sleep.
Speaker 8 (36:00):
It didn't make up.
Speaker 4 (36:04):
She thinks there needs to be more emotional as well
as financial support to families going through what they did
after Matthew's diagnosis.
Speaker 5 (36:13):
The kids missed out on the hell of a lot
normal things that people have in their lives.
Speaker 3 (36:18):
We couldn't have because we couldn't afford it.
Speaker 5 (36:21):
My eldest son, he went off to Kara's camp a
couple of times, but he felt lost because nobody at
Care's camp was dealing with the same things that he
was dealing with, so he felt lost and wouldn't go
because no one understood.
Speaker 3 (36:37):
No one understood what he was going through.
Speaker 4 (36:41):
And as for what Diane would say to anyone going
through the same thing.
Speaker 5 (36:46):
Never give up, Never give up hope, because hope's the
only thing you've got.
Speaker 8 (36:51):
Agree, he's a g Anyone shows you love, got a smile,
but bray you a bit more. You'll never be.
Speaker 6 (37:27):
Hi.
Speaker 1 (37:27):
I'm Aline and I'm Lucy.
Speaker 4 (37:29):
Thanks for watching and listening to seven New Spectrum.
Speaker 2 (37:32):
If you have a story that you think when make
a good episode, let us know at seven News Podcast
at gmail dot com.
Speaker 1 (37:38):
Thanks
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