January 23, 2025 • 39 mins
In our first Hot Take of 2025, Sonya and Jo share updates from Australia's Pharmaceutical Benefits Advisory Committee and how consumer advocacy was pivotal in the PBAC's decision to recommend Estrogel, Prometrium and Estrogel Pro for the Pharmaceutical Benefits Scheme.
With a personal milestone, Sonya shares her new role as the ambassador for Menopause and Cancer in Australia and New Zealand. This initiative seeks to fill the glaring void in post-cancer menopause care, echoing alarming statistics from the UK where the majority of women receive no support.
Johanna highlighted actionable insights in "A Citizen's Guide to Menopause Advocacy: Simple Steps for Transformative Change. " Discover how this free-to-download guide, featuring a foreword by Maria Shriver, empowers individuals to drive change.
Explore how you can advocatefor change during this pivotal period, despite the delayed government response to the Australian Senate Inquiry into Perimenopause and Menopause.
We also touch on the recent paper published showing the interindividual variations of the absorption of estrogen in the real world. Results of the study showed that 1 in 4 women using the highest licensed dose showed levels considered subtherapeutic as a result of poor absorption.
So much to unpack this week!! Enjoy.
Links:
A Citizen's Guide to Menopause Advocacy download
Estrogen Absorption paper published 17 December 2024
Menopause and Cancer
Thank you for listening to my show!
Join the conversation on Instagram
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Sonya (00:01):
Welcome to the Dear Menopause podcast.
I'm Sonya Lovell, your host Now.
I've been bringing youconversations with amazing
menopause experts for over twoyears now.
If you have missed any of thoseconversations, now's the time
to go back and listen, and youcan always share them with
anyone you think needs to hearthem.
This way, more people can findthese amazing conversations,
(00:24):
needs to hear them.
This way, more people can findthese amazing conversations.
Welcome to Dear Menopause andthis week we have a hot take
episode.
Joining me is my Johanna Wicks.
Hey, jo, so good to be hereagain.
Are you excited?
I'm very excited.
As a refresher for anyonethat's forgotten because it was
a month ago, or for anyone thathasn't listened to a hot take
(00:45):
episode previously, joe and Iare going to talk about kind of
the what's hot in the menopausespace in australia right now and
globally as well.
But really focusing onaustralia, break down what that
means for you as a consumer,which is just an awful term you
as a woman in australian societythat is likely to be impacted
by perimenopause and menopause.
So last episode we finished offtalking about the PBS and
(01:07):
different HRTs, why they were onthe PBS, why they weren't, and
we were waiting for anannouncement from PBAC, which is
the advisory committee decidingwhich meds do go onto PBS about
Prometrium yes and Estrogel Yepand Estrogel Pro yes, which is
the two combined as oneprescription.
(01:28):
Okay, jo, tell us what happened.
Johanna (01:31):
So it was very exciting .
I think the results came out onthe 20th of December, so right
before Christmas, and obviouslythere's lots of women, I think,
that have been waiting on thisoutcome because none of these
products have been listed on thePBS.
They're available in theprivate market but that does
mean that they're a bit out ofreach for a percentage of the
(01:51):
population, which really playsinto inequity of healthcare.
So the Pharmaceutical BenefitsAdvisory Committee published
their results from theirNovember meeting on the 20th of
December and the PBAC outcomeI'll actually read it out
because it's so exciting was thePBAC recommended the listing of
Estrogel Metrium and EstrogelPro as general schedule
(02:13):
unrestricted benefit listings.
The main thing they said thisbit really resonated with me was
that the PBAC noted consumercomments stating it was
important to have a range of MHToptions available on the PBS
and that these products wereeffective in managing symptoms
of menopause and providedbenefits compared to other PBS
listed MHT products.
(02:35):
In the context of limitedclinical evidence, the PBAC
found the consumer commentsparticularly useful in
articulating patient-relevantoutcomes, especially from those
people currently supplied theseproducts on the private market.
This is a great outcome.
This means that the productsmove to the next stage of the
PBS process, which I'll get toin just a second.
(02:55):
But I think what's reallyexciting about that particular
comment is it shows howimportant that we as consumers
are when we engage with thehealthcare system.
So as part of the PBS and PBACprocess, there is an opportunity
for consumers to comment on anydrugs that are put up, and
obviously you know thepharmaceutical company puts in a
(03:16):
massive dossier with all theevidence and why they think it
should be on the PBS.
A lot of doctors will oftenrespond as well and indicate why
they think it's important.
A lot of doctors will oftenrespond as well and indicate why
they think it's important.
But it's the voices ofconsumers which I think is so
critical sometimes in thisdiscussion, because it's those
lived experiences of medicinesand how they impact us that can
(03:38):
often be missed, especially ifthere isn't a lot of clinical
evidence.
Sonya (03:41):
Yeah.
Johanna (03:42):
So what this means.
Sonya (03:43):
That was also so evident, which we've talked about before
as a part of the Senate inquiry.
You know, the senators saidwhen they handed down their
report how their findings wereso driven by the submissions and
the hearings that came from notjust the medical profession but
from patients and women andconsumers themselves.
So, yeah, huge.
(04:04):
But one of the things we aregoing to talk about today is
actually how you can be more ofan advocate in this space and
use your voice.
So, now that we know that, thatwas the outcome from PBAC, but
there is a next step before wesee anything actually added to
the PBS.
Talk us through that.
Johanna (04:20):
Yeah, so what happens now?
So the first hurdle in terms ofthis product being listed, has
occurred because it's beenrecommended.
The second hurdle, which we didtalk about in our previous hot
take, which is that complicatedoutcome as to whether or not
PBAC recommends that it'scompared to the lowest price
product that is, similar on thePBS, the lowest cost comparator,
(04:42):
or if they're willing to havenegotiations with the
pharmaceutical company.
So I think in December we hadtalked about how there was a
recent contraceptive pill whichwas recommended, but recommended
at the lowest cost comparator,which we spoke about in detail.
Excitingly for these products,for these modern MHT products,
(05:03):
they have indicated that theyare willing to go into price
discussions, and so what thatmeans now is that the Department
of Health and thepharmaceutical company who put
up the products, which isBesson's, will start a
discussion on price, and thatcan take a couple of months, and
what it requires, basically, isit requires the Department of
(05:23):
Health and the Australian HealthSystem to recognise that these
are modern medicines and thatthey need to be remunerated in a
way that ensures that theproducers of the product, you
know, are covering their costsand, you know, as a private
company, making a profit, makingmoney, but also requires the
pharmaceutical company to cometo the table and be realistic
(05:44):
about what price they can expectthis product.
Yeah, so this is a reallyexciting outcome it really is.
Sonya (05:52):
Um, you know, I know you and I were both hugely excited
on the day when we found on thewebsite pbac website that they,
you know made they published thefindings that we all dove in
there and had a look and thengot super excited.
I got a wonderful email fromthe team at Beesons that same
day acknowledging the work thatyou know advocates within the
(06:12):
community had done to get us tothis point.
So they were incrediblygrateful for everything that you
know was being done to supporttheir drive for this to happen,
but also acknowledging that,yeah, now they're in that step
of negotiating on price, whichyou know is great that they've
even opened those doors to dothat for us.
So huge, huge.
Johanna (06:32):
And it actually says in the PBAC document.
It says the PBAC recommendedlisting of the three products at
a price it consideredacceptable in the context of
uncertainty in the magnitude ofbenefits.
And I just wanted to add alittle addition there.
And, you know, I think maybe wecan park this for a hot take
next time, sonia.
This again comes back to stuffthat we've alluded to before
which is around evidence theyactually talk about in the PBAC
(06:54):
summary, in particular, that thePBAC considered the claim that
micronized progesterone has alower breast cancer risk
compared to mediproxen acetate,mpa, which we have also talked
about, was uncertain.
So again it comes back to youknow we keep coming back to
there's a lack of good, robustclinical evidence with so much
(07:15):
around these drugs and women'sbodies and women's healthcare.
What that indicates is thatthere's more advocacy to be done
on research, which we're goingto get to shortly.
Yeah, now we've got to watchthis space to see if and when
these products make it onto thePBS.
Sonya (07:30):
Yeah, and so we would expect an announcement,
obviously sometime this year.
We're only at the start of thisyear, but we will absolutely
keep you updated on any movementin that space and anything that
we hear in regards to theoutcome on that.
So great news, but still alittle way to go.
All right, let's move on to now.
I'm going to take over thecontrols here for a moment, and
(07:51):
I would like us to cover theannouncement that I made a
couple of weeks ago that I amnow the freshly minted and very
first ambassador to Australiaand New Zealand for menopause
and cancer, which is a UK spacecharity.
I have been in conversation withthem for gosh well over 12
(08:15):
months now.
I first met Dani Binnington,who's the founder right here on
Dear Menopause, when she agreedto be interviewed, and we've
kept our lines of communicationopen.
Towards the end of last year, Ireached out and said hey, look,
we really have a need forservices that you are already
offering so successfully in theUK.
Here in Australia and NewZealand, I would love to be a
(08:38):
part of that, and so I havejoined the Menopause and Cancer
UK team as their ambassadoracross Australia and New Zealand
, which is really exciting.
These are services that havenot been offered in Australia,
and New.
Zealand before to women thathave experienced menopause as a
result of cancer, and there aremany cancers that can actually
lead to menopause.
(08:59):
It's not just breast cancer.
Often we kind of think that itis because it's probably the
most popular and highly talkedabout.
But you know we have to factorinto that women that are
impacted by gynecologicalcancers.
A lot of blood cancers can alsothe medications and treatments
for that lead to a menopause aswell.
So this is a very holisticorganization that takes into
(09:21):
account anybody in the communitythat has been impacted by
menopause and cancer.
So that is an excitingannouncement.
Johanna (09:28):
This is really.
I mean, sonia, this is soexciting because I think this
could not have happened at abetter time.
When you think about, you know,so many of the submissions that
we saw in the Senate inquirylast year, the fact that you
know we have a number ofrecommendations, the fact that
you're going to take on thisrole now, at this point, when
there is, I guess, still quite alot of advocacy to do to make
(09:49):
sure that those recommendationsbecome reality, means it could
not be a better time for thatyou know quite significant
cohort of women who experiencemenopause as a result of cancer
and cancer treatment, to makesure that those voices are heard
.
But I think also, I think what'sgoing to be really critical in
this process is hopefully, youknow, maybe we move towards some
(10:11):
national guidelines around youknow, menopause treatment and
care is ensuring that thosevoices and the treatment
protocols for people who havesuffered from cancer get
included.
Because what I keep seeing Ikeep seeing, I mean probably
almost daily on my social iswomen who are talking about how
their medical professionals intheir care after cancer don't
(10:31):
talk about menopause.
It's not really factored in,which really surprised me, given
it's well, now it's 2025.
Sonya (10:40):
Yeah, oh, I know it's absolutely disgraceful.
One of the reasons I justreached across and grabbed my
pad and paper was I was having aconversation with Danny during
the week earlier in the week,and we were talking about some
of the stats and data that wecan extrapolate across here to
our community that they havegained from their community in
the UK, and they surveyed theircommunity and 90.4% of their
(11:05):
community came back and saidthat they had received zero help
when it came to their menopauseas a result of cancer.
Johanna (11:14):
Not 94%, four that's.
I mean, that's quite hard toget your head around that you're
talking about women, andsomething that's so inherently
important is you know how we,how we live in our bodies and
how we function, and you knowthinking about whether you you
know might want children or havechildren, or you know.
To not have that discussionjust seems well.
(11:36):
It seems like, sonia, you'regoing to have your work cut out.
Sonya (11:39):
It does.
I know Dani and I were goingback and forward on something
over the weekend and you knowshe asked me a question about
where, if you are in cancertreatment here and you've
experienced menopause as aresult, like who within your
team do you reach out to forsupport?
And so you know I kind ofanswered that and then she was
like okay, now I want to knowhow likely they are to get that
support.
And then I did this big dump.
(12:01):
Basically, it comes down to inmany respects being a postcode
lottery of you know.
Do you live in the city versus?
Are you regional?
Are you rural?
Are you public patient?
Are you a private patient?
What budget do you haveavailable to you to spend on
specialists outside of thecancer care?
You're already getting so manythings.
Johanna (12:17):
And then my last sentence to her was we have so
much work to do thinking aboutthat, yes, but in terms of
looking for the silver lining,now is the is the most optimum
time to be having that, becausewe know that the government is
thinking about what they'regoing to do in this space and we
also have an election coming up, so that, I think, is a really
good point in terms of theadvocacy that you're going to be
(12:39):
able to do in this role, whichis also one of the other things
we wanted to talk about it was.
Sonya (12:44):
But before we jump, I just want to also just finish up
with.
You know my role here is notgoing to be just advocacy.
Advocacy is going to be a bigpart of it.
That's a big part of who I am.
But what is most exciting to meis we will be bringing the
services that the UK deliver nowto the community, which are
educational and awarenessraising, in person, online, and,
(13:06):
you know, we'll create acommunity network across
Australia and New Zealand.
I've already had so manycommunity members reach out to
me saying how can I help?
This is where I live.
So you know we're going to beorganizing coffee mornings where
people can get together andhave a conversation with someone
that's experienced exactly whatyou're experiencing.
We've got a huge globalFacebook community already.
(13:27):
We won't be creating anythingnew.
We'll just be folding everybodyinto that one, because the
issues that everybody faces arethe same.
It doesn't matter where you'resituated or based, and there's a
brilliant community in therethat is always jumping in and
answering everyone's questionsand providing support when
people need it.
So, yes, advocacy is going tobe a part of it, but there's
also going to be a huge part ofproviding support and community
(13:49):
and education and access toexperts as well.
That's a part of the workshopswe'll be running, and we'll be
announcing all of that very,very soon, so that people will
know what to expect.
So that's it.
I have wrapped up my pitch.
Johanna (14:01):
That was what I wanted to say I think you're going to
probably be inundated with, youknow, people wanting a guidance.
In a way it's you're probablygoing to need, yeah, like a,
like a pathway of like where togo for information and who to
see.
And I mean, I already know,like even from the in the
menopause space over the lastcouple of years, I still get
contacted by people saying canyou recommend any good doctors
(14:22):
in, you know, new south wales orthe hunger for detailed
information is huge and becauseyou're filling a massive void in
Australia, you'll be preparedto be busy.
Sonya (14:35):
I am prepared to be busy and excited to be as well.
All right, so let's move now onto the next topic that we're
going to talk about, and that isadvocacy.
Jo, you brought this to myattention.
I hadn't seen it until youbrought it to my attention, so
why don't you do a quick spielabout this amazing guide?
Johanna (14:55):
Yes.
So I saw this on one of theglobal medical professionals
whose Instagram I follow, maryClaire Haver.
It's called A Citizen's Guideto Menopause Advocacy Simple
Steps for Transformative Change,and it is brilliant.
(15:16):
So Dr Mary-Claire has workedwith a couple of other people
and developed some steps whichhelp the individual, the person
on the street, have a betterunderstanding of how they can
advocate in this space.
One of the things on the frontthere's like a little snapshot
of it.
It looks like a text message ora note, and I just really love
it because it says, with theadvent of social media, the flow
of information has beendemocratised, and I think that's
(15:38):
one of the things that excitesme the most about living in this
age with all of the socialmedia, that it is possible to
create a community and drivechange without ever happening to
meet anyone in person.
This Citizen's Guide toMenopause Advocacy it has an
(15:58):
incredible foreword by MariaShriver which just you know it
just made my heart sing.
It also made me go.
I want a journalist like thatin Australia to, you know, kind
of take this movement and dosimilar things.
It was really powerful.
But the other key thing is itthen lists its policy goals and
(16:22):
gives examples of how to achievethem, and the thing that struck
me reading it, sonia, was thepolicy goals are pretty much the
same as the policy goals thatwe would like to achieve here.
Sonya (16:33):
That was my exact thought .
Like I jumped into it.
It's an online downloadable PDF.
It doesn't cost you anything.
It's 37 pages.
I've got it open on my computerright now Super accessible,
jam-packed with information.
But that's the first thoughtthat I had.
As soon as I scrolled to thetable of contents, I was like,
oh my gosh, but how good is itthat, globally, without
(16:56):
collaboration, we are all on thesame page.
Johanna (17:00):
I know that's exactly what struck me.
In fact I was like, oh, this isquite similar to.
You know some of the policygoals that we had put together,
a group of us, a consortium ofus put together in a budget
submission to the Australiangovernment just over 12 months
ago.
But very quickly, I thought I'djust read them out, so you've
got you know.
Policy goal one reset therecord about menopause hormone
(17:22):
treatment Yep.
Policy goal two catalyze amodern, equitable menopause
research agenda.
Sonya (17:28):
Yes.
Johanna (17:29):
Policy goal three update and mandate menopause
education for providers.
That one's needed.
Policy goal four make menopausetreatments affordable.
Well, we've just talked aboutthat.
Policy goal five make menopausetreatments free of outdated
warning labels.
We've also spoken about that.
And policy goal six ensuremeaningful workplace
(17:51):
interventions.
I mean these are pretty muchalso reflected in the Senate
inquiries recommendations andthey're all really doable.
Yeah, which is also exciting.
You don't read them and go.
That's never going to beachieved.
No, exciting, you don't readthem and go.
Sonya (18:08):
That's never going to be achieved.
No, and what I love is thatthen, after for each of those
policy goals, they give a littleone pager, if you like, that
has a take action kind of callto action on it.
So this is what you can do Now.
Do keep in mind this is writtenfrom an American perspective,
so there is a lot of Americanlinks and referring to American
organizations.
I was like we need anaustralian version of this.
(18:31):
That's exactly what I thoughttoo.
Sonia hello, anybody wanting tofund us to put that together,
reach out.
But yeah, so do just go into it.
If you do download this andhave a little think about you
know where you can actually usesome of this information and
just translate that into youknow what exists here in
Australia, because an equivalentwill exist.
And until we do get theopportunity to update this for
(18:55):
Australia, it would be amazingto just for you to work out who
it is in Australia that takesthe place of the American body
that they refer to.
But great, recommended actionsteps.
How to do that, as justsomebody in the public that's
invested in seeing a change inthis narrative and in this
situation that we find ourselvesin?
Johanna (19:15):
And I think you know I often also see in social media,
I mean all the time actually,you know people commenting and
saying what can I do to help?
How can we get this on theagenda, you know, and so this is
actually quite a great tool,and is it the kind of thing you
could link in the show notes?
Sonya (19:31):
Sure, good question.
It absolutely is Wonderful.
So yeah, I will definitely havea link to this in the show
notes and, as I said, it'sliterally just a PDF download.
Johanna (19:41):
And I think it's you know I would love to see an
Australian version.
So yes, let's see if we can.
You know if someone would liketo generate such a document.
But one of the other thingsthat did make me think, like in
terms of the Senate inquiry andI did want to this kind of wraps
in really nicely, sonia is wewere hoping to hear from the
government, I think on the 18thof December, to respond to the
(20:04):
Senate inquiry recommendation.
So the government originally,after any Senate inquiry is
tabled, they have three monthsto respond.
Unfortunately, the Albanesegovernment has not yet responded
, which is really disappointing.
I'm going to give them thebenefit of the doubt and go with
.
It's because they're so busycoming up with how they're going
(20:25):
to implement all therecommendations that they want
to make sure they've gotten itall right before they respond.
Sonya (20:32):
That's a great way to look at it, jo, but you know
I've been inundated withmessages from people actually
going hey, just wondering, did Imiss the announcement about the
Senate inquiry report?
And I'm like, no, sorry, youdidn't.
It's just not come down yet.
So, yes, we're waiting.
If you're listening and you areat all in control around this,
please know that we are waitingwith bated breath there's a lot
(20:54):
of women.
Johanna (20:55):
There's a lot of women waiting for the answers on this
and uh, now, what was my trainof thought with that?
It was so, in terms of advocacyaround that, one of the things
that you know I'm I'm nowthinking about.
Well, what can we do to ensurethat this doesn't just?
You know there's an electionlooming.
We don't want this to drop offthe government's agenda or to go
.
We're about to go into anelection, this isn't a priority
(21:17):
and then it disappears and youknow there could be a change of
government.
We want some action before wego into this election phase,
before we go into this electionphase.
So you know, thinking about whatyou could do if you were
listening.
You know there are some simplethings like write to your local
member and say I was followingthe Senate inquiry.
My understanding was thegovernment was due to respond.
Could you advise me as to wherethat's up to?
(21:38):
If your local member is not aLabor member of parliament, well
then you could put it onto thecoalition or the Greens agenda
and say could you follow this upfor me?
What is your party's response?
Now?
The Greens, we know already didhave responded to the
recommendations, but we haven'theard anything from the National
Party, the Liberal Party or theLabor Party at this point.
(21:59):
So you know you can write andensure that your elected
representative knows that thisis important to you and if you
think about how many menopausalwomen there are, if we all wrote
that would be quite a lot ofcorrespondence and would also
make them realise that this issomething that is relevant
coming into an election.
Sonya (22:16):
Yeah, hugely relevant and we hold 51% of the vote.
Johanna (22:21):
Yeah, that's pretty amazing.
So, and I think you know, Ithink the amount of women that
are actually in the menopausetransition is about 3 million,
but it's even bigger if you kindof you take it outside the kind
of traditional age that isconsidered menopause.
So that's a, that's a lot ofwomen with a lot of voting power
.
Sonya (22:39):
Yeah, we do.
We hold a lot of power and weneed to really lean into that
for want of a better expression,and start, you know, using our
voices.
Johanna (22:48):
Yeah, and you know, one of the other things I had seen
over the summer break not that Iwas spending a lot of time on
the socials, but I don't know ifyou saw it, sonia was Dr Louise
Newsom had some researchpublished.
She did, yeah, so it was a teamof you know doctors and
researchers.
Sonya (23:01):
I know Rebecca was also involved, who works closely with
Louise.
There's a big team of um.
You know doctors andresearchers.
I know rebecca was alsoinvolved, um, who works closely
with louise.
There's a big team of them.
But yes, there was a fantasticpaper published on the um.
Johanna (23:14):
It was all around the absorption of estrogen yes, um,
and I'm just trying to find it.
Sonya (23:21):
I had it open before so I've got it open here.
So the aim of the study was toexplore the range and variation
in serum estradiol concentrationand to estimate the prevalence
of quotations, poor absorptionin perimenopausal and post-men
or women using transdermalestradiol in the real world.
So, yeah, this was reallyinteresting because if you
(23:45):
closely follow this conversation, you will know that there has
been some talk, some very loudtalk, around the
overprescription, particularlyof estrogen.
Is it a good thing?
Should it be happening?
What does it mean?
Why do they do it?
Is it off-label, is it on-label?
Why, you know.
And so this paper reallyaddressed and the outcome of it
(24:08):
really showed that every singlewoman or person that uses
transdermal estrogen, whetherthat's a patch or a gel, but I
think this was predominantlydone on patches Is that right?
I think?
It was all I think it was allit was all Okay, cool, do absorb
at very, very different rates.
Johanna (24:27):
Yes, and what I think is really interesting about this
is, you know, there has been alot of grumbling, I think, or
outright not very you knowunpleasantness over the last 12
months and, you know, frankly, abit of a witch hunt against Dr
Louise Newsome by some in themenopause space around the fact
that she is prescribing outsidethe recommended doses.
(24:49):
A lot of doctors have come outand been quite vocal about the
fact that actually theyprescribe outside the
recommended doses because ofthis exact issue, when they
actually test levels that theyfind that women aren't absorbing
, and the conclusions of thispaper actually talked about that
.
There is considerableinter-individual variation, and
(25:11):
I think what this means is.
It does come back toindividualised care, and I
noticed that Professor Kulkarniwas recently quoted saying that
it's important to focus onpatient care, not ideologies.
Evidence from scientificclinical trials is important,
but so is the art of medicine,which is all about clinical
experience, listening andproviding compassionate care.
(25:34):
I think that really lies inthis example as well, and one of
the other things that reallystruck me, because it was
reflected in Australia, is DrKelly Teagle, who runs WellFem,
which is Australia's first andlargest telehealth clinic, which
is just for menopausal care.
Kelly founded WellFem fiveyears ago, so she was at the
(25:56):
forefront of this movement longbefore anybody else and, as a GP
, had realized that there wasthis massive gap that was
happening for midlife women.
She actually did a post threemonths ago on this exact issue
and she was saying that you know, all she sees is menopausal
women.
That is her sole client base.
(26:17):
So if you think about LouiseNewsom and Kelly Teagle when
they are specialists inmenopause, so the only patients
they see are menopausal patients.
They are the ones who are goingto see the patients that are,
so the only patients they seeare menopausal patients.
They are the ones who are goingto see the patients that are
outside the curve, that don'tfall into the norm.
Because there'll be women thatapproach their normal GP, aren't
getting the care that theyrequire or their GP is not
(26:37):
confident.
Who'll go to Kelly or Louise?
And she actually said there areplenty of menopause doctors,
myself included, who prescribemore than 100 milligrams of
estradiol per day because wehave patients who aren't
responding to lower doses.
That is using clinical judgment, not irresponsible prescribing,
and I think that that's one ofthe things that you know often
(26:59):
gets missed is that if you'reseeing 100% of patients with the
same condition.
You've got a differentperspective than someone who
might see a menopausal patienttwice a week and I think you
know that.
The fact that Louise Newsom hasmanaged to collect all of her
data and actually do the testsand get the blood results is
(27:20):
extremely useful for prescribinggoing forward and hopefully
will make doctors feel moreconfident that actually, if they
have a woman that's notresponding, there is now
evidence to show that they cando a blood serum test and see if
absorption is happening.
So I think it's a reallyexciting addition to the
clinical landscape.
Sonya (27:41):
Yeah, it's great and it also ties into something we've
talked about on here before buthas also had a lot of publicity
recently, and that is theshortages of the patches in
Australia.
And you know, when you comparethe absorption of gel versus the
absorption of patches, there isa huge amount of significance.
You know there's differentlevels of nuances for every
(28:03):
patient as to whether the gel isgoing to work for them versus
the patch.
You know I had a conversationrecently with one of the cancer
organizations that I've beentalking to about menopause and
cancer in collaboration and theyhad run some workshops recently
where they'd actually got someof their community in to talk
about the support that theyneeded from a menopause
(28:24):
perspective, because it wasn't aconversation they'd ever had
with them before, and one oftheir community members had
mentioned how she wasn't able toget patches, so her doctor had
put her onto gel.
There was a couple of issuesthat I saw with this situation,
but the most important one wasthat she was a young mum.
She hadn't been giveninstructions on when to use her
(28:45):
estrogen versus when to use herpermetrium in terms of across
the day, so she was putting hergel on at the end of the day
after she'd had a shower, butshe found then that she wasn't
able to go and pick up her babystraight away afterwards because
of that.
It transfers across, like thegel sits on your skin.
I use the gel.
It sits on your skin like areally heavy hand sanitizer and
(29:08):
it takes some time to absorb in,so you have to let it dry.
If you don't, then anything youtouch, or particularly another
human or even a pet some peopleget concerned about their pets
will transfer across to them,and so she was in this great
predicament where she was notable to put a gel on because she
then couldn't go and pick herbaby up, and I was like this is
why it's so important that wehave access to patches versus
(29:31):
gel for those that need eitherthe different absorption rates
or they can't have that crosstransfer.
Johanna (29:38):
Yeah, and I think that that's, you know, a really good
point, because you knowsometimes.
You know sometimes on a hot dayit might take three minutes to
dry, but on a cool day sometimesit can take more like 15
minutes to dry yeah, and youcan't put a jumper on over top
or shirt on over shirt on overtop exactly, and then you know,
and then you're like my baby'scrying, I need to, I need to
pick it, yeah it up, um.
(29:58):
And I think that that's also.
You know.
They've also shown that somewomen absorb patches much better
than gel.
So with the patch shortagehappening and so many women
being shifted onto the two gelsthat are in Australia, then
there's going to be a lot ofwomen that just aren't absorbing
in the same way and so theymight need to try to take their
dose.
And I think you know it'sinteresting because there's been
(30:19):
, you know, some muttering inthe media recently around.
You know, I think you knowthere's still a bit of a,
frankly, a witch hunt against DrLouise Newsom.
I find that women who arepioneers are often well,
australia.
What do we have?
We have the tall poppy syndrome.
Tall poppy syndrome Tear themdown.
Let's just say there's a youknow there's a cohort that
(30:40):
aren't supportive of the moderntype of medicine that Louise
Newsom practices, and there'sbeen some mutterings around.
You know that this prescribingestrogen outside ranges, you
know it's off indication.
But what's really interestingis that there is a lot of
medications that are prescribedoff indication.
You ask a doctor and they'd beable to list 20.
(31:02):
And you know, the real bugbearwhen I see this in the media
that really drives me bananas isthe fact that I'm using mht is
off indication.
I'm perimenopausal.
Sonya (31:14):
You look at any pamphlet in any mht and it is for
post-menopausal women so everysingle so that's, that's 100 of
us on this call right now areare using MHT off-label.
Johanna (31:27):
Yeah.
So think about like off-labelis just, it's impossible to do a
randomised clinical trial forevery single permutation of
every single drug.
And, you know, throw in a lackof research.
In 20 years, thanks to WHI, youknow, we have a dearth of
research to the point wherethere is no research on
(31:48):
perimenopausal women and MHT andit is not clinically indicated
for use if you are notpost-menopause Like that blows
my mind.
And so then when I see in themedia like oh, they're
prescribing off-label.
This is outrageous.
It's like you all prescribeoff-label to perimenopausal
women.
So, yeah, that's, that's one ofthe things that, you know, kind
(32:09):
of drives me a little bitbonkers and did from day one,
like literally it was one of myfirst questions um, when I
started working, um, for thepharmaceutical company that
makes estrogel, I was like whydoes your pamphlet say it's for
postmenopause?
because I'm perimenopause andit's been saving my life for two
years yeah and the answer wasoh, that's because there's no
clinical trial evidence, and torun a clinical trial of the size
(32:30):
that we'd need to do to changethe indication would cost
millions upon millions andmillions of dollars.
Sonya (32:36):
Yeah so they don't and therein lies the problem.
You know that we keep comingback to it's twofold it's
investment from government orprivate bodies and it's lack of
research.
The two are so like a research.
Johanna (32:50):
Maybe can we put research on the agenda for the
next chat, because I have a lotof yes things to say on that
topic all right, there you go.
Sonya (32:57):
There's our hook for our next hot take episode.
We are going to deep dive intoresearch, which I think is
really good.
Actually, it's a really goodtopic to drive into because
there's a lot to unpack and itis such.
You know, you did an amazingLinkedIn post about a week ago
about research and you knowthere's a lot to unpack.
(33:17):
It's so nuanced.
Johanna (33:19):
And it appears really complicated from the outside,
but it doesn't need to be thatcomplicated.
Sonya (33:24):
It doesn't need to be, but it's also a really easy
throwaway line that we hear overand over and over again.
Twofold One is the specialistsand cohort that you were
alluding to before that are likewell, we don't have the
research, so therefore we can'tdo it.
And then there's our side ofthings, which is the community
and the consumers for want of abetter word going.
(33:44):
Well, why isn't there research?
Where's the research?
Why can't we get the research?
You know, the two need to meetin the middle and actually
explain why we don't haveresearch.
What's being done to overcomethat, so that the community
understands that research isn'tjust a tick box, it's not
something that you know happensovernight.
Johanna (34:04):
So, yes, and you've raised it like I'm not going to
be able to help myself, sonia,I'm going to have to.
I'm going to have to add twocents here and the other bug
there.
I think that, yeah, you know,um, I can explore more.
But academics also have tounderstand that their pet
projects, not necessarily thepet projects that the community
wants the answer to, and that isthat is the emerging tension in
academia and medical researchin particular now is that, with
(34:27):
the rise of understanding theimportance of lived experience
and that patient perspective,there is a disconnect often
between what the you know, theacademic who wants to go down
this tiny little niche of theirpet project, and actually what
the consumer wants to see fortheir disease or health issue
which ties into probably ouroverarching theme today, which
(34:49):
has been advocacy and using yourvoice, because if we don't tell
them what we want, they arejust going to keep going down
these little narrow rabbit holesthat you know suits their needs
but doesn't necessarily tickthe box for the general
population.
And I had one other thing I justwanted to raise because you
know I've been doing a littlebit of work in the background,
so we'd mentioned the event atthe Opera House so hot right now
(35:11):
last year Very excitingly, thisweek it has sold out.
And the reason again I wantedto raise you know what?
Sonya (35:17):
actually?
I'm going to pick you up onthat.
Not surprisingly, it has soldout Like seriously.
Johanna (35:26):
somebody sent me a message going oh my God, we've
sold out.
And I was like well, yeah, duh,yeah.
Well, that ties into theadvocacy thing, I think as well.
The reason I yeah, I wanted tobring it up was that's over 2000
women have bought a ticket in acost of living crisis to an
event at the Opera House which,let's be honest, wasn't super
cheap.
But getting global superstarsfrom the other side of the world
out has a cost, and I thinkthis is something that really is
(35:49):
worth exploring from a policyperspective.
The fact that you can sell outtickets really fast over 2,000
of them to talk about menopausesays women are hungry.
Women want more.
Women are looking for answers.
There is a thirsty crowd.
Yeah, there's a thirsty crowd.
So I know that the organisersare hoping to get support to
(36:12):
maybe do an online option and,you know, potentially seeing if
that's something that thegovernment would like to get
behind and support.
Sonya (36:19):
So let's hope so, because I know that's something that
you know has been mentioned tome by people that have only just
realised they missed out on theopportunity to get tickets
because they were like, oh, justwait, buy them in the new year.
It's heaps of times, you knowit's like March, but also in
comments that I've seen onlineacross both the speakers when
(36:41):
they've spoken about it, butalso here in Australia from
different people that have beenposting about it.
You know, one of the mostcommon comments has been like
well, why aren't you coming toMelbourne?
You know, why aren't you comingto Brisbane?
Like you know, can't youinclude an event in Brisbane as
well, so this, a live streamoption would absolutely give so
many more of that thirsty crowdthe opportunity to not miss out
(37:05):
on this incredible event.
Johanna (37:06):
I know, and I think that's and it is.
You know, because I've beendoing a little bit of support
for them.
They would have loved to havebrought it to every capital city
, but you know the logistics.
We've got four superstars.
You know.
Ponder Wright's a surgeon.
They've all got their privatepractices.
Sonya (37:20):
Marie Claire Haver is an obstetrician Like getting them
all at the same time, kellyCasperson has her own clinic,
like you know they do.
These are all working doctors.
Johanna (37:28):
Doctors, yeah, they're all busy women, yeah, absolutely
Doing multiple things.
So, yeah, the fact that youknow they're able to corner them
for a day is pretty exciting.
Sonya (37:39):
But the other parallel that I've kind of been drawing
for some people to, both inrelation to, you know, the
ticket costs and also the factthat they can't visit everywhere
.
I've been kind of drawing theseparallels between, like that,
if Taylor Swift was coming toAustralia, you know, we've all
paid that same amount of moneyfor tickets to events,
absolutely, and they don't visitevery city in Australia because
(38:02):
Australia is a really reallybig country and it's really
expensive to take a show on theroad.
You know that does involve somany moving parts.
Johanna (38:12):
So as much as Good point.
And as working women, they alsodeserve, you know, to be
remunerated for their time,their time and their travel and
so forth.
So I yeah, let's keep ourfingers crossed that there can
be an online version.
Sonya (38:29):
And also, you know, this is the first event in Australia.
This was a bit of a dip thetoes in the water.
Is there a thirsty crowd?
Do they want to actually seethese people speak?
What value is there in that?
Who knows what will come nextas a result of this.
Johanna (38:42):
Yeah, I know it's exciting.
This is a, so it's going to beexciting for your new role.
It's exciting for advocacy,it's exciting for seeing what
happens with the Senate inquiryand PBS.
Sonya (38:52):
It's a great way to start the year.
What a time to be alive.
What a time to be a menopausalwoman in Australia, Awesome Jo.
We need to wrap this up.
I hope that everybody listeninghas found some value in what
we've been chatting about today.
I hope you've stayed right tothe very end, thank you.
If you have, I will chuck somelinks into the show notes pretty
(39:12):
much around everything thatwe've touched on today so that
you can go and do your ownresearch as well.
Jo, I'm looking forward tochatting to you again in another
two weeks.
Johanna (39:21):
Sounds fun.
I'll start my research deepdive.
Welcome to the Dear Menopause podcast.
I'm Sonya Lovell, your host Now.
I've been bringing youconversations with amazing
menopause experts for over twoyears now.
If you have missed any of thoseconversations, now's the time
to go back and listen, and youcan always share them with
anyone you think needs to hearthem.
This way, more people can findthese amazing conversations,
(00:24):
needs to hear them.
This way, more people can findthese amazing conversations.
Welcome to Dear Menopause andthis week we have a hot take
episode.
Joining me is my Johanna Wicks.
Hey, jo, so good to be hereagain.
Are you excited?
I'm very excited.
As a refresher for anyonethat's forgotten because it was
a month ago, or for anyone thathasn't listened to a hot take
(00:45):
episode previously, joe and Iare going to talk about kind of
the what's hot in the menopausespace in australia right now and
globally as well.
But really focusing onaustralia, break down what that
means for you as a consumer,which is just an awful term you
as a woman in australian societythat is likely to be impacted
by perimenopause and menopause.
So last episode we finished offtalking about the PBS and
(01:07):
different HRTs, why they were onthe PBS, why they weren't, and
we were waiting for anannouncement from PBAC, which is
the advisory committee decidingwhich meds do go onto PBS about
Prometrium yes and Estrogel Yepand Estrogel Pro yes, which is
the two combined as oneprescription.
(01:28):
Okay, jo, tell us what happened.
Johanna (01:31):
So it was very exciting .
I think the results came out onthe 20th of December, so right
before Christmas, and obviouslythere's lots of women, I think,
that have been waiting on thisoutcome because none of these
products have been listed on thePBS.
They're available in theprivate market but that does
mean that they're a bit out ofreach for a percentage of the
(01:51):
population, which really playsinto inequity of healthcare.
So the Pharmaceutical BenefitsAdvisory Committee published
their results from theirNovember meeting on the 20th of
December and the PBAC outcomeI'll actually read it out
because it's so exciting was thePBAC recommended the listing of
Estrogel Metrium and EstrogelPro as general schedule
(02:13):
unrestricted benefit listings.
The main thing they said thisbit really resonated with me was
that the PBAC noted consumercomments stating it was
important to have a range of MHToptions available on the PBS
and that these products wereeffective in managing symptoms
of menopause and providedbenefits compared to other PBS
listed MHT products.
(02:35):
In the context of limitedclinical evidence, the PBAC
found the consumer commentsparticularly useful in
articulating patient-relevantoutcomes, especially from those
people currently supplied theseproducts on the private market.
This is a great outcome.
This means that the productsmove to the next stage of the
PBS process, which I'll get toin just a second.
(02:55):
But I think what's reallyexciting about that particular
comment is it shows howimportant that we as consumers
are when we engage with thehealthcare system.
So as part of the PBS and PBACprocess, there is an opportunity
for consumers to comment on anydrugs that are put up, and
obviously you know thepharmaceutical company puts in a
(03:16):
massive dossier with all theevidence and why they think it
should be on the PBS.
A lot of doctors will oftenrespond as well and indicate why
they think it's important.
A lot of doctors will oftenrespond as well and indicate why
they think it's important.
But it's the voices ofconsumers which I think is so
critical sometimes in thisdiscussion, because it's those
lived experiences of medicinesand how they impact us that can
(03:38):
often be missed, especially ifthere isn't a lot of clinical
evidence.
Sonya (03:41):
Yeah.
Johanna (03:42):
So what this means.
Sonya (03:43):
That was also so evident, which we've talked about before
as a part of the Senate inquiry.
You know, the senators saidwhen they handed down their
report how their findings wereso driven by the submissions and
the hearings that came from notjust the medical profession but
from patients and women andconsumers themselves.
So, yeah, huge.
(04:04):
But one of the things we aregoing to talk about today is
actually how you can be more ofan advocate in this space and
use your voice.
So, now that we know that, thatwas the outcome from PBAC, but
there is a next step before wesee anything actually added to
the PBS.
Talk us through that.
Johanna (04:20):
Yeah, so what happens now?
So the first hurdle in terms ofthis product being listed, has
occurred because it's beenrecommended.
The second hurdle, which we didtalk about in our previous hot
take, which is that complicatedoutcome as to whether or not
PBAC recommends that it'scompared to the lowest price
product that is, similar on thePBS, the lowest cost comparator,
(04:42):
or if they're willing to havenegotiations with the
pharmaceutical company.
So I think in December we hadtalked about how there was a
recent contraceptive pill whichwas recommended, but recommended
at the lowest cost comparator,which we spoke about in detail.
Excitingly for these products,for these modern MHT products,
(05:03):
they have indicated that theyare willing to go into price
discussions, and so what thatmeans now is that the Department
of Health and thepharmaceutical company who put
up the products, which isBesson's, will start a
discussion on price, and thatcan take a couple of months, and
what it requires, basically, isit requires the Department of
(05:23):
Health and the Australian HealthSystem to recognise that these
are modern medicines and thatthey need to be remunerated in a
way that ensures that theproducers of the product, you
know, are covering their costsand, you know, as a private
company, making a profit, makingmoney, but also requires the
pharmaceutical company to cometo the table and be realistic
(05:44):
about what price they can expectthis product.
Yeah, so this is a reallyexciting outcome it really is.
Sonya (05:52):
Um, you know, I know you and I were both hugely excited
on the day when we found on thewebsite pbac website that they,
you know made they published thefindings that we all dove in
there and had a look and thengot super excited.
I got a wonderful email fromthe team at Beesons that same
day acknowledging the work thatyou know advocates within the
(06:12):
community had done to get us tothis point.
So they were incrediblygrateful for everything that you
know was being done to supporttheir drive for this to happen,
but also acknowledging that,yeah, now they're in that step
of negotiating on price, whichyou know is great that they've
even opened those doors to dothat for us.
So huge, huge.
Johanna (06:32):
And it actually says in the PBAC document.
It says the PBAC recommendedlisting of the three products at
a price it consideredacceptable in the context of
uncertainty in the magnitude ofbenefits.
And I just wanted to add alittle addition there.
And, you know, I think maybe wecan park this for a hot take
next time, sonia.
This again comes back to stuffthat we've alluded to before
which is around evidence theyactually talk about in the PBAC
(06:54):
summary, in particular, that thePBAC considered the claim that
micronized progesterone has alower breast cancer risk
compared to mediproxen acetate,mpa, which we have also talked
about, was uncertain.
So again it comes back to youknow we keep coming back to
there's a lack of good, robustclinical evidence with so much
(07:15):
around these drugs and women'sbodies and women's healthcare.
What that indicates is thatthere's more advocacy to be done
on research, which we're goingto get to shortly.
Yeah, now we've got to watchthis space to see if and when
these products make it onto thePBS.
Sonya (07:30):
Yeah, and so we would expect an announcement,
obviously sometime this year.
We're only at the start of thisyear, but we will absolutely
keep you updated on any movementin that space and anything that
we hear in regards to theoutcome on that.
So great news, but still alittle way to go.
All right, let's move on to now.
I'm going to take over thecontrols here for a moment, and
(07:51):
I would like us to cover theannouncement that I made a
couple of weeks ago that I amnow the freshly minted and very
first ambassador to Australiaand New Zealand for menopause
and cancer, which is a UK spacecharity.
I have been in conversation withthem for gosh well over 12
(08:15):
months now.
I first met Dani Binnington,who's the founder right here on
Dear Menopause, when she agreedto be interviewed, and we've
kept our lines of communicationopen.
Towards the end of last year, Ireached out and said hey, look,
we really have a need forservices that you are already
offering so successfully in theUK.
Here in Australia and NewZealand, I would love to be a
(08:38):
part of that, and so I havejoined the Menopause and Cancer
UK team as their ambassadoracross Australia and New Zealand
, which is really exciting.
These are services that havenot been offered in Australia,
and New.
Zealand before to women thathave experienced menopause as a
result of cancer, and there aremany cancers that can actually
lead to menopause.
(08:59):
It's not just breast cancer.
Often we kind of think that itis because it's probably the
most popular and highly talkedabout.
But you know we have to factorinto that women that are
impacted by gynecologicalcancers.
A lot of blood cancers can alsothe medications and treatments
for that lead to a menopause aswell.
So this is a very holisticorganization that takes into
(09:21):
account anybody in the communitythat has been impacted by
menopause and cancer.
So that is an excitingannouncement.
Johanna (09:28):
This is really.
I mean, sonia, this is soexciting because I think this
could not have happened at abetter time.
When you think about, you know,so many of the submissions that
we saw in the Senate inquirylast year, the fact that you
know we have a number ofrecommendations, the fact that
you're going to take on thisrole now, at this point, when
there is, I guess, still quite alot of advocacy to do to make
(09:49):
sure that those recommendationsbecome reality, means it could
not be a better time for thatyou know quite significant
cohort of women who experiencemenopause as a result of cancer
and cancer treatment, to makesure that those voices are heard
.
But I think also, I think what'sgoing to be really critical in
this process is hopefully, youknow, maybe we move towards some
(10:11):
national guidelines around youknow, menopause treatment and
care is ensuring that thosevoices and the treatment
protocols for people who havesuffered from cancer get
included.
Because what I keep seeing Ikeep seeing, I mean probably
almost daily on my social iswomen who are talking about how
their medical professionals intheir care after cancer don't
(10:31):
talk about menopause.
It's not really factored in,which really surprised me, given
it's well, now it's 2025.
Sonya (10:40):
Yeah, oh, I know it's absolutely disgraceful.
One of the reasons I justreached across and grabbed my
pad and paper was I was having aconversation with Danny during
the week earlier in the week,and we were talking about some
of the stats and data that wecan extrapolate across here to
our community that they havegained from their community in
the UK, and they surveyed theircommunity and 90.4% of their
(11:05):
community came back and saidthat they had received zero help
when it came to their menopauseas a result of cancer.
Johanna (11:14):
Not 94%, four that's.
I mean, that's quite hard toget your head around that you're
talking about women, andsomething that's so inherently
important is you know how we,how we live in our bodies and
how we function, and you knowthinking about whether you you
know might want children or havechildren, or you know.
To not have that discussionjust seems well.
(11:36):
It seems like, sonia, you'regoing to have your work cut out.
Sonya (11:39):
It does.
I know Dani and I were goingback and forward on something
over the weekend and you knowshe asked me a question about
where, if you are in cancertreatment here and you've
experienced menopause as aresult, like who within your
team do you reach out to forsupport?
And so you know I kind ofanswered that and then she was
like okay, now I want to knowhow likely they are to get that
support.
And then I did this big dump.
(12:01):
Basically, it comes down to inmany respects being a postcode
lottery of you know.
Do you live in the city versus?
Are you regional?
Are you rural?
Are you public patient?
Are you a private patient?
What budget do you haveavailable to you to spend on
specialists outside of thecancer care?
You're already getting so manythings.
Johanna (12:17):
And then my last sentence to her was we have so
much work to do thinking aboutthat, yes, but in terms of
looking for the silver lining,now is the is the most optimum
time to be having that, becausewe know that the government is
thinking about what they'regoing to do in this space and we
also have an election coming up, so that, I think, is a really
good point in terms of theadvocacy that you're going to be
(12:39):
able to do in this role, whichis also one of the other things
we wanted to talk about it was.
Sonya (12:44):
But before we jump, I just want to also just finish up
with.
You know my role here is notgoing to be just advocacy.
Advocacy is going to be a bigpart of it.
That's a big part of who I am.
But what is most exciting to meis we will be bringing the
services that the UK deliver nowto the community, which are
educational and awarenessraising, in person, online, and,
(13:06):
you know, we'll create acommunity network across
Australia and New Zealand.
I've already had so manycommunity members reach out to
me saying how can I help?
This is where I live.
So you know we're going to beorganizing coffee mornings where
people can get together andhave a conversation with someone
that's experienced exactly whatyou're experiencing.
We've got a huge globalFacebook community already.
(13:27):
We won't be creating anythingnew.
We'll just be folding everybodyinto that one, because the
issues that everybody faces arethe same.
It doesn't matter where you'resituated or based, and there's a
brilliant community in therethat is always jumping in and
answering everyone's questionsand providing support when
people need it.
So, yes, advocacy is going tobe a part of it, but there's
also going to be a huge part ofproviding support and community
(13:49):
and education and access toexperts as well.
That's a part of the workshopswe'll be running, and we'll be
announcing all of that very,very soon, so that people will
know what to expect.
So that's it.
I have wrapped up my pitch.
Johanna (14:01):
That was what I wanted to say I think you're going to
probably be inundated with, youknow, people wanting a guidance.
In a way it's you're probablygoing to need, yeah, like a,
like a pathway of like where togo for information and who to
see.
And I mean, I already know,like even from the in the
menopause space over the lastcouple of years, I still get
contacted by people saying canyou recommend any good doctors
(14:22):
in, you know, new south wales orthe hunger for detailed
information is huge and becauseyou're filling a massive void in
Australia, you'll be preparedto be busy.
Sonya (14:35):
I am prepared to be busy and excited to be as well.
All right, so let's move now onto the next topic that we're
going to talk about, and that isadvocacy.
Jo, you brought this to myattention.
I hadn't seen it until youbrought it to my attention, so
why don't you do a quick spielabout this amazing guide?
Johanna (14:55):
Yes.
So I saw this on one of theglobal medical professionals
whose Instagram I follow, maryClaire Haver.
It's called A Citizen's Guideto Menopause Advocacy Simple
Steps for Transformative Change,and it is brilliant.
(15:16):
So Dr Mary-Claire has workedwith a couple of other people
and developed some steps whichhelp the individual, the person
on the street, have a betterunderstanding of how they can
advocate in this space.
One of the things on the frontthere's like a little snapshot
of it.
It looks like a text message ora note, and I just really love
it because it says, with theadvent of social media, the flow
of information has beendemocratised, and I think that's
(15:38):
one of the things that excitesme the most about living in this
age with all of the socialmedia, that it is possible to
create a community and drivechange without ever happening to
meet anyone in person.
This Citizen's Guide toMenopause Advocacy it has an
(15:58):
incredible foreword by MariaShriver which just you know it
just made my heart sing.
It also made me go.
I want a journalist like thatin Australia to, you know, kind
of take this movement and dosimilar things.
It was really powerful.
But the other key thing is itthen lists its policy goals and
(16:22):
gives examples of how to achievethem, and the thing that struck
me reading it, sonia, was thepolicy goals are pretty much the
same as the policy goals thatwe would like to achieve here.
Sonya (16:33):
That was my exact thought .
Like I jumped into it.
It's an online downloadable PDF.
It doesn't cost you anything.
It's 37 pages.
I've got it open on my computerright now Super accessible,
jam-packed with information.
But that's the first thoughtthat I had.
As soon as I scrolled to thetable of contents, I was like,
oh my gosh, but how good is itthat, globally, without
(16:56):
collaboration, we are all on thesame page.
Johanna (17:00):
I know that's exactly what struck me.
In fact I was like, oh, this isquite similar to.
You know some of the policygoals that we had put together,
a group of us, a consortium ofus put together in a budget
submission to the Australiangovernment just over 12 months
ago.
But very quickly, I thought I'djust read them out, so you've
got you know.
Policy goal one reset therecord about menopause hormone
(17:22):
treatment Yep.
Policy goal two catalyze amodern, equitable menopause
research agenda.
Sonya (17:28):
Yes.
Johanna (17:29):
Policy goal three update and mandate menopause
education for providers.
That one's needed.
Policy goal four make menopausetreatments affordable.
Well, we've just talked aboutthat.
Policy goal five make menopausetreatments free of outdated
warning labels.
We've also spoken about that.
And policy goal six ensuremeaningful workplace
(17:51):
interventions.
I mean these are pretty muchalso reflected in the Senate
inquiries recommendations andthey're all really doable.
Yeah, which is also exciting.
You don't read them and go.
That's never going to beachieved.
No, exciting, you don't readthem and go.
Sonya (18:08):
That's never going to be achieved.
No, and what I love is thatthen, after for each of those
policy goals, they give a littleone pager, if you like, that
has a take action kind of callto action on it.
So this is what you can do Now.
Do keep in mind this is writtenfrom an American perspective,
so there is a lot of Americanlinks and referring to American
organizations.
I was like we need anaustralian version of this.
(18:31):
That's exactly what I thoughttoo.
Sonia hello, anybody wanting tofund us to put that together,
reach out.
But yeah, so do just go into it.
If you do download this andhave a little think about you
know where you can actually usesome of this information and
just translate that into youknow what exists here in
Australia, because an equivalentwill exist.
And until we do get theopportunity to update this for
(18:55):
Australia, it would be amazingto just for you to work out who
it is in Australia that takesthe place of the American body
that they refer to.
But great, recommended actionsteps.
How to do that, as justsomebody in the public that's
invested in seeing a change inthis narrative and in this
situation that we find ourselvesin?
Johanna (19:15):
And I think you know I often also see in social media,
I mean all the time actually,you know people commenting and
saying what can I do to help?
How can we get this on theagenda, you know, and so this is
actually quite a great tool,and is it the kind of thing you
could link in the show notes?
Sonya (19:31):
Sure, good question.
It absolutely is Wonderful.
So yeah, I will definitely havea link to this in the show
notes and, as I said, it'sliterally just a PDF download.
Johanna (19:41):
And I think it's you know I would love to see an
Australian version.
So yes, let's see if we can.
You know if someone would liketo generate such a document.
But one of the other thingsthat did make me think, like in
terms of the Senate inquiry andI did want to this kind of wraps
in really nicely, sonia is wewere hoping to hear from the
government, I think on the 18thof December, to respond to the
(20:04):
Senate inquiry recommendation.
So the government originally,after any Senate inquiry is
tabled, they have three monthsto respond.
Unfortunately, the Albanesegovernment has not yet responded
, which is really disappointing.
I'm going to give them thebenefit of the doubt and go with
.
It's because they're so busycoming up with how they're going
(20:25):
to implement all therecommendations that they want
to make sure they've gotten itall right before they respond.
Sonya (20:32):
That's a great way to look at it, jo, but you know
I've been inundated withmessages from people actually
going hey, just wondering, did Imiss the announcement about the
Senate inquiry report?
And I'm like, no, sorry, youdidn't.
It's just not come down yet.
So, yes, we're waiting.
If you're listening and you areat all in control around this,
please know that we are waitingwith bated breath there's a lot
(20:54):
of women.
Johanna (20:55):
There's a lot of women waiting for the answers on this
and uh, now, what was my trainof thought with that?
It was so, in terms of advocacyaround that, one of the things
that you know I'm I'm nowthinking about.
Well, what can we do to ensurethat this doesn't just?
You know there's an electionlooming.
We don't want this to drop offthe government's agenda or to go
.
We're about to go into anelection, this isn't a priority
(21:17):
and then it disappears and youknow there could be a change of
government.
We want some action before wego into this election phase,
before we go into this electionphase.
So you know, thinking about whatyou could do if you were
listening.
You know there are some simplethings like write to your local
member and say I was followingthe Senate inquiry.
My understanding was thegovernment was due to respond.
Could you advise me as to wherethat's up to?
(21:38):
If your local member is not aLabor member of parliament, well
then you could put it onto thecoalition or the Greens agenda
and say could you follow this upfor me?
What is your party's response?
Now?
The Greens, we know already didhave responded to the
recommendations, but we haven'theard anything from the National
Party, the Liberal Party or theLabor Party at this point.
(21:59):
So you know you can write andensure that your elected
representative knows that thisis important to you and if you
think about how many menopausalwomen there are, if we all wrote
that would be quite a lot ofcorrespondence and would also
make them realise that this issomething that is relevant
coming into an election.
Sonya (22:16):
Yeah, hugely relevant and we hold 51% of the vote.
Johanna (22:21):
Yeah, that's pretty amazing.
So, and I think you know, Ithink the amount of women that
are actually in the menopausetransition is about 3 million,
but it's even bigger if you kindof you take it outside the kind
of traditional age that isconsidered menopause.
So that's a, that's a lot ofwomen with a lot of voting power
.
Sonya (22:39):
Yeah, we do.
We hold a lot of power and weneed to really lean into that
for want of a better expression,and start, you know, using our
voices.
Johanna (22:48):
Yeah, and you know, one of the other things I had seen
over the summer break not that Iwas spending a lot of time on
the socials, but I don't know ifyou saw it, sonia was Dr Louise
Newsom had some researchpublished.
She did, yeah, so it was a teamof you know doctors and
researchers.
Sonya (23:01):
I know Rebecca was also involved, who works closely with
Louise.
There's a big team of um.
You know doctors andresearchers.
I know rebecca was alsoinvolved, um, who works closely
with louise.
There's a big team of them.
But yes, there was a fantasticpaper published on the um.
Johanna (23:14):
It was all around the absorption of estrogen yes, um,
and I'm just trying to find it.
Sonya (23:21):
I had it open before so I've got it open here.
So the aim of the study was toexplore the range and variation
in serum estradiol concentrationand to estimate the prevalence
of quotations, poor absorptionin perimenopausal and post-men
or women using transdermalestradiol in the real world.
So, yeah, this was reallyinteresting because if you
(23:45):
closely follow this conversation, you will know that there has
been some talk, some very loudtalk, around the
overprescription, particularlyof estrogen.
Is it a good thing?
Should it be happening?
What does it mean?
Why do they do it?
Is it off-label, is it on-label?
Why, you know.
And so this paper reallyaddressed and the outcome of it
(24:08):
really showed that every singlewoman or person that uses
transdermal estrogen, whetherthat's a patch or a gel, but I
think this was predominantlydone on patches Is that right?
I think?
It was all I think it was allit was all Okay, cool, do absorb
at very, very different rates.
Johanna (24:27):
Yes, and what I think is really interesting about this
is, you know, there has been alot of grumbling, I think, or
outright not very you knowunpleasantness over the last 12
months and, you know, frankly, abit of a witch hunt against Dr
Louise Newsome by some in themenopause space around the fact
that she is prescribing outsidethe recommended doses.
(24:49):
A lot of doctors have come outand been quite vocal about the
fact that actually theyprescribe outside the
recommended doses because ofthis exact issue, when they
actually test levels that theyfind that women aren't absorbing
, and the conclusions of thispaper actually talked about that
.
There is considerableinter-individual variation, and
(25:11):
I think what this means is.
It does come back toindividualised care, and I
noticed that Professor Kulkarniwas recently quoted saying that
it's important to focus onpatient care, not ideologies.
Evidence from scientificclinical trials is important,
but so is the art of medicine,which is all about clinical
experience, listening andproviding compassionate care.
(25:34):
I think that really lies inthis example as well, and one of
the other things that reallystruck me, because it was
reflected in Australia, is DrKelly Teagle, who runs WellFem,
which is Australia's first andlargest telehealth clinic, which
is just for menopausal care.
Kelly founded WellFem fiveyears ago, so she was at the
(25:56):
forefront of this movement longbefore anybody else and, as a GP
, had realized that there wasthis massive gap that was
happening for midlife women.
She actually did a post threemonths ago on this exact issue
and she was saying that you know, all she sees is menopausal
women.
That is her sole client base.
(26:17):
So if you think about LouiseNewsom and Kelly Teagle when
they are specialists inmenopause, so the only patients
they see are menopausal patients.
They are the ones who are goingto see the patients that are,
so the only patients they seeare menopausal patients.
They are the ones who are goingto see the patients that are
outside the curve, that don'tfall into the norm.
Because there'll be women thatapproach their normal GP, aren't
getting the care that theyrequire or their GP is not
(26:37):
confident.
Who'll go to Kelly or Louise?
And she actually said there areplenty of menopause doctors,
myself included, who prescribemore than 100 milligrams of
estradiol per day because wehave patients who aren't
responding to lower doses.
That is using clinical judgment, not irresponsible prescribing,
and I think that that's one ofthe things that you know often
(26:59):
gets missed is that if you'reseeing 100% of patients with the
same condition.
You've got a differentperspective than someone who
might see a menopausal patienttwice a week and I think you
know that.
The fact that Louise Newsom hasmanaged to collect all of her
data and actually do the testsand get the blood results is
(27:20):
extremely useful for prescribinggoing forward and hopefully
will make doctors feel moreconfident that actually, if they
have a woman that's notresponding, there is now
evidence to show that they cando a blood serum test and see if
absorption is happening.
So I think it's a reallyexciting addition to the
clinical landscape.
Sonya (27:41):
Yeah, it's great and it also ties into something we've
talked about on here before buthas also had a lot of publicity
recently, and that is theshortages of the patches in
Australia.
And you know, when you comparethe absorption of gel versus the
absorption of patches, there isa huge amount of significance.
You know there's differentlevels of nuances for every
(28:03):
patient as to whether the gel isgoing to work for them versus
the patch.
You know I had a conversationrecently with one of the cancer
organizations that I've beentalking to about menopause and
cancer in collaboration and theyhad run some workshops recently
where they'd actually got someof their community in to talk
about the support that theyneeded from a menopause
(28:24):
perspective, because it wasn't aconversation they'd ever had
with them before, and one oftheir community members had
mentioned how she wasn't able toget patches, so her doctor had
put her onto gel.
There was a couple of issuesthat I saw with this situation,
but the most important one wasthat she was a young mum.
She hadn't been giveninstructions on when to use her
(28:45):
estrogen versus when to use herpermetrium in terms of across
the day, so she was putting hergel on at the end of the day
after she'd had a shower, butshe found then that she wasn't
able to go and pick up her babystraight away afterwards because
of that.
It transfers across, like thegel sits on your skin.
I use the gel.
It sits on your skin like areally heavy hand sanitizer and
(29:08):
it takes some time to absorb in,so you have to let it dry.
If you don't, then anything youtouch, or particularly another
human or even a pet some peopleget concerned about their pets
will transfer across to them,and so she was in this great
predicament where she was notable to put a gel on because she
then couldn't go and pick herbaby up, and I was like this is
why it's so important that wehave access to patches versus
(29:31):
gel for those that need eitherthe different absorption rates
or they can't have that crosstransfer.
Johanna (29:38):
Yeah, and I think that that's, you know, a really good
point, because you knowsometimes.
You know sometimes on a hot dayit might take three minutes to
dry, but on a cool day sometimesit can take more like 15
minutes to dry yeah, and youcan't put a jumper on over top
or shirt on over shirt on overtop exactly, and then you know,
and then you're like my baby'scrying, I need to, I need to
pick it, yeah it up, um.
(29:58):
And I think that that's also.
You know.
They've also shown that somewomen absorb patches much better
than gel.
So with the patch shortagehappening and so many women
being shifted onto the two gelsthat are in Australia, then
there's going to be a lot ofwomen that just aren't absorbing
in the same way and so theymight need to try to take their
dose.
And I think you know it'sinteresting because there's been
(30:19):
, you know, some muttering inthe media recently around.
You know, I think you knowthere's still a bit of a,
frankly, a witch hunt against DrLouise Newsom.
I find that women who arepioneers are often well,
australia.
What do we have?
We have the tall poppy syndrome.
Tall poppy syndrome Tear themdown.
Let's just say there's a youknow there's a cohort that
(30:40):
aren't supportive of the moderntype of medicine that Louise
Newsom practices, and there'sbeen some mutterings around.
You know that this prescribingestrogen outside ranges, you
know it's off indication.
But what's really interestingis that there is a lot of
medications that are prescribedoff indication.
You ask a doctor and they'd beable to list 20.
(31:02):
And you know, the real bugbearwhen I see this in the media
that really drives me bananas isthe fact that I'm using mht is
off indication.
I'm perimenopausal.
Sonya (31:14):
You look at any pamphlet in any mht and it is for
post-menopausal women so everysingle so that's, that's 100 of
us on this call right now areare using MHT off-label.
Johanna (31:27):
Yeah.
So think about like off-labelis just, it's impossible to do a
randomised clinical trial forevery single permutation of
every single drug.
And, you know, throw in a lackof research.
In 20 years, thanks to WHI, youknow, we have a dearth of
research to the point wherethere is no research on
(31:48):
perimenopausal women and MHT andit is not clinically indicated
for use if you are notpost-menopause Like that blows
my mind.
And so then when I see in themedia like oh, they're
prescribing off-label.
This is outrageous.
It's like you all prescribeoff-label to perimenopausal
women.
So, yeah, that's, that's one ofthe things that, you know, kind
(32:09):
of drives me a little bitbonkers and did from day one,
like literally it was one of myfirst questions um, when I
started working, um, for thepharmaceutical company that
makes estrogel, I was like whydoes your pamphlet say it's for
postmenopause?
because I'm perimenopause andit's been saving my life for two
years yeah and the answer wasoh, that's because there's no
clinical trial evidence, and torun a clinical trial of the size
(32:30):
that we'd need to do to changethe indication would cost
millions upon millions andmillions of dollars.
Sonya (32:36):
Yeah so they don't and therein lies the problem.
You know that we keep comingback to it's twofold it's
investment from government orprivate bodies and it's lack of
research.
The two are so like a research.
Johanna (32:50):
Maybe can we put research on the agenda for the
next chat, because I have a lotof yes things to say on that
topic all right, there you go.
Sonya (32:57):
There's our hook for our next hot take episode.
We are going to deep dive intoresearch, which I think is
really good.
Actually, it's a really goodtopic to drive into because
there's a lot to unpack and itis such.
You know, you did an amazingLinkedIn post about a week ago
about research and you knowthere's a lot to unpack.
(33:17):
It's so nuanced.
Johanna (33:19):
And it appears really complicated from the outside,
but it doesn't need to be thatcomplicated.
Sonya (33:24):
It doesn't need to be, but it's also a really easy
throwaway line that we hear overand over and over again.
Twofold One is the specialistsand cohort that you were
alluding to before that are likewell, we don't have the
research, so therefore we can'tdo it.
And then there's our side ofthings, which is the community
and the consumers for want of abetter word going.
(33:44):
Well, why isn't there research?
Where's the research?
Why can't we get the research?
You know, the two need to meetin the middle and actually
explain why we don't haveresearch.
What's being done to overcomethat, so that the community
understands that research isn'tjust a tick box, it's not
something that you know happensovernight.
Johanna (34:04):
So, yes, and you've raised it like I'm not going to
be able to help myself, sonia,I'm going to have to.
I'm going to have to add twocents here and the other bug
there.
I think that, yeah, you know,um, I can explore more.
But academics also have tounderstand that their pet
projects, not necessarily thepet projects that the community
wants the answer to, and that isthat is the emerging tension in
academia and medical researchin particular now is that, with
(34:27):
the rise of understanding theimportance of lived experience
and that patient perspective,there is a disconnect often
between what the you know, theacademic who wants to go down
this tiny little niche of theirpet project, and actually what
the consumer wants to see fortheir disease or health issue
which ties into probably ouroverarching theme today, which
(34:49):
has been advocacy and using yourvoice, because if we don't tell
them what we want, they arejust going to keep going down
these little narrow rabbit holesthat you know suits their needs
but doesn't necessarily tickthe box for the general
population.
And I had one other thing I justwanted to raise because you
know I've been doing a littlebit of work in the background,
so we'd mentioned the event atthe Opera House so hot right now
(35:11):
last year Very excitingly, thisweek it has sold out.
And the reason again I wantedto raise you know what?
Sonya (35:17):
actually?
I'm going to pick you up onthat.
Not surprisingly, it has soldout Like seriously.
Johanna (35:26):
somebody sent me a message going oh my God, we've
sold out.
And I was like well, yeah, duh,yeah.
Well, that ties into theadvocacy thing, I think as well.
The reason I yeah, I wanted tobring it up was that's over 2000
women have bought a ticket in acost of living crisis to an
event at the Opera House which,let's be honest, wasn't super
cheap.
But getting global superstarsfrom the other side of the world
out has a cost, and I thinkthis is something that really is
(35:49):
worth exploring from a policyperspective.
The fact that you can sell outtickets really fast over 2,000
of them to talk about menopausesays women are hungry.
Women want more.
Women are looking for answers.
There is a thirsty crowd.
Yeah, there's a thirsty crowd.
So I know that the organisersare hoping to get support to
(36:12):
maybe do an online option and,you know, potentially seeing if
that's something that thegovernment would like to get
behind and support.
Sonya (36:19):
So let's hope so, because I know that's something that
you know has been mentioned tome by people that have only just
realised they missed out on theopportunity to get tickets
because they were like, oh, justwait, buy them in the new year.
It's heaps of times, you knowit's like March, but also in
comments that I've seen onlineacross both the speakers when
(36:41):
they've spoken about it, butalso here in Australia from
different people that have beenposting about it.
You know, one of the mostcommon comments has been like
well, why aren't you coming toMelbourne?
You know, why aren't you comingto Brisbane?
Like you know, can't youinclude an event in Brisbane as
well, so this, a live streamoption would absolutely give so
many more of that thirsty crowdthe opportunity to not miss out
(37:05):
on this incredible event.
Johanna (37:06):
I know, and I think that's and it is.
You know, because I've beendoing a little bit of support
for them.
They would have loved to havebrought it to every capital city
, but you know the logistics.
We've got four superstars.
You know.
Ponder Wright's a surgeon.
They've all got their privatepractices.
Sonya (37:20):
Marie Claire Haver is an obstetrician Like getting them
all at the same time, kellyCasperson has her own clinic,
like you know they do.
These are all working doctors.
Johanna (37:28):
Doctors, yeah, they're all busy women, yeah, absolutely
Doing multiple things.
So, yeah, the fact that youknow they're able to corner them
for a day is pretty exciting.
Sonya (37:39):
But the other parallel that I've kind of been drawing
for some people to, both inrelation to, you know, the
ticket costs and also the factthat they can't visit everywhere
.
I've been kind of drawing theseparallels between, like that,
if Taylor Swift was coming toAustralia, you know, we've all
paid that same amount of moneyfor tickets to events,
absolutely, and they don't visitevery city in Australia because
(38:02):
Australia is a really reallybig country and it's really
expensive to take a show on theroad.
You know that does involve somany moving parts.
Johanna (38:12):
So as much as Good point.
And as working women, they alsodeserve, you know, to be
remunerated for their time,their time and their travel and
so forth.
So I yeah, let's keep ourfingers crossed that there can
be an online version.
Sonya (38:29):
And also, you know, this is the first event in Australia.
This was a bit of a dip thetoes in the water.
Is there a thirsty crowd?
Do they want to actually seethese people speak?
What value is there in that?
Who knows what will come nextas a result of this.
Johanna (38:42):
Yeah, I know it's exciting.
This is a, so it's going to beexciting for your new role.
It's exciting for advocacy,it's exciting for seeing what
happens with the Senate inquiryand PBS.
Sonya (38:52):
It's a great way to start the year.
What a time to be alive.
What a time to be a menopausalwoman in Australia, Awesome Jo.
We need to wrap this up.
I hope that everybody listeninghas found some value in what
we've been chatting about today.
I hope you've stayed right tothe very end, thank you.
If you have, I will chuck somelinks into the show notes pretty
(39:12):
much around everything thatwe've touched on today so that
you can go and do your ownresearch as well.
Jo, I'm looking forward tochatting to you again in another
two weeks.
Johanna (39:21):
Sounds fun.
I'll start my research deepdive.
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If you eat, sleep, and breathe true crime, TRUE CRIME TONIGHT is serving up your nightly fix. Five nights a week, KT STUDIOS & iHEART RADIO invite listeners to pull up a seat for an unfiltered look at the biggest cases making headlines, celebrity scandals, and the trials everyone is watching. With a mix of expert analysis, hot takes, and listener call-ins, TRUE CRIME TONIGHT goes beyond the headlines to uncover the twists, turns, and unanswered questions that keep us all obsessed—because, at TRUE CRIME TONIGHT, there’s a seat for everyone. Whether breaking down crime scene forensics, scrutinizing serial killers, or debating the most binge-worthy true crime docs, True Crime Tonight is the fresh, fast-paced, and slightly addictive home for true crime lovers.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com