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(43:14 into the video of the Q+A programme aired on 8 September 2024:
https://www.tvnz.co.nz/shows/q-and-a/episodes/s2024-e29
-- only available to view until about 6th October 2024)
(The figures in brackets indicate how many minutes
and seconds into the video the words are spoken)
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Q+A: After the break, the number of people hospitalised with
rheumatic fever in New Zealand last year doubled, from 2022.
So what's it going to take to end the spread of this preventable
disease?... Maori and Pacific people are 30 to 40 times more
likely than Pakeha to contract rheumatic fever -- just think about
that -- 30 to 40 times! Of all rheumatic fever cases in New
Zealand, 90% are in Maori or Pacific people. Epidemiologist,
Dr. Jason Gurney, has intensively studied the disease and its causes
and has woven his own family history with rheumatic fever in a new
book, called, "The Twisted Chain." Jason's with
us this morning. Kia ora! Good morning!
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J.G: Morena!
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Q+A: What is rheumatic fever? (44:00)
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J.G: Well, rheumatic fever is ... really starts with ...
a Group A streptococcus infection -- so people probably will understand
a "strep throat" -- but it can also enter through the
skin, as well -- so, through a skin infection. That really
leads to a cascade -- or a twisted chain -- of events that leads
to the development of rheumatic fever. So, not everyone who
gets a strep throat will then end up getting rheumatic fever, but
a small proportion of those people (44:19) have this disease happen.
And it's really an auto-immume, kind of, over-response -- so it's
our own body really sending friendly fire in response to that Group
A streptococcus infection.
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Q+A: Then, why is it so bad?
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J.G: Well, I mean, it depends. The ... whether or
not the disease is really awful depends on a case (44:38) by case
basis. But, really, it's essentially, ... the worst part of
it, really, is this cascade of events that leads to our own hearts
being, you know, inflamed, valves being damaged, and those sorts
of things, so it's kind of a multi-system (44:51) over-response,
or a failure of our autoimmune system to deal with the infection.
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Q+A: And, for people who contract rheumatic fever, the consequences
-- certainly, once they reach middle age, or later in life -- can
be great.
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J.G: Yeah, that's right. Exactly. So, it's
a childhood illness (45:05) that has this really long shadow, and
in the book, I've got a chapter literally called "The Long
Shadow", which is all about the cardiac consequences of rheumatic
fever, which are by far the biggest killer of rheumatic fever is
rheumatic heart disease, which happens later in life. So there's
this kind-of a silent phase in the middle (45:23). Rheumatic
fever as a kid, sort of silent -- clinically silent -- phase --
and then really kicks in later in life.
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Q+A: OK, you are a health researcher, but your connection with
rheumatic fever isn't just (45:37) professional. It is personal,
as you describe in the book. Can you just tell us about that?
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J.G: Yeah, sure. So, my Dad
was on a rugby tournament when he was about 14 in 1969 -- Whangarei
boy, came down to Auckland for a rugby tournament, and they were
billeted in quite close, cramped spaces, (45:47) and, as well as
a few of the other boys, he developed a strep infection, but his
ended up being much worse, and he developed rheumatic fever, as
a result of that strep infection. And so, again, very sick.
He was in bed for months. (45:57) He was... basically couldn't
leave the house. Quite severe carditis -- swelling of his
heart, inflammation of his heart. And then, later in life,
he had that clinically silent phase, so he ran marathons, played
rugby for Horahora (46:10) from Whangarei, -- you know, all
these sorts of things -- had us -- had us kids. But then,
later on in life, the consequences of that early childhood disease
really raised its ugly head. And so, this story really started
(46:18)... You know, there was a couple of reasons why I wrote the
book. One of them was just to be able to relive this experience,
(46:26) of my Dad's experience -- but also our whanau experience.
So, I spent more days than I could care to remember next to his,
sort-of, bed, suffering from the consequences of this early childhood
disease.
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Q+A: Why are Maori (46:37) and Pacific people so over-represented
in rheumatic fever stats?
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J.G: Well,
I mean, for a start, I think that we need to nip in the bud the
idea that it's because of genetics -- because it's not. So,
genetics is one component, but we still don't understand the ramifications
or how important the genetic component is (46:59) . It's absolutely
a disease of the social determinants of health. So, if you
look at how we pattern poverty in this country, how we pattern who's
in power -- all these sorts of things -- (47:06) Maori and Pacific
peoples are far more likely to live in poverty, far more likely
to live in poor housing -- in crowded housing. Really, the
upstream determinants of this disease drive the downstream ramifications
and Maori and Pacific people are (47:19) by far and away disproportionately
impacted by those social determinants.
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Q+A: Yeah, so, under the guidance of Michael Baker, who I'm sure
viewers will recognise, you led the RF Risk Factor studies, the
Rheumatic Fever Risk Factor study, which studied the determinant
causes of rheumatic fever. What did it find about those socio-political
factors? (47:36)
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J.G: So, yeah, I mean, it really splits
into... We can focus on the upstream determinants first, I think,
which is essentially the lion's share of what's driving rheumatic
fever in New Zealand. So, it's... our housing stock is (47:46)
old, cold and full of mould. I didn't make that up.
It was in a report that was written a few years ago. It's
a catchy term which I think everyone needs to understand.
(47:59) Our housing stock is not fit for purpose. It never
was. Building regulations have gotten better, over time, but
the new housing stock that's being built that's warm, safe, healthy,
is not going to Maori and Pacific peoples living in poverty, right?
It's going into the high-end rental market and it's going into private
hands. So we have this enormous stock (48:15) of old, cold,
full of mould housing, which is leading to not only rheumatic fever
or Group A strep infections, but lots of other diseases that are
caused by poverty and poor housing. (48:22) And so all of these
things kind of manifest to ensure that Maori and Pacific are always
at the business-end of dealing with these consequences.
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Q+A: Successive governments have identified rheumatic fever as
being cause for concern and as being related to poverty. (48:49)
Have we had successful public health interventions ?
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J.G: Well, I think so. Like, there's a really great one
called the Healthy Housing Initiative, which is just, I think, systematically
underfunded. It's such a fantastic initiative. (48:55)
So, essentially, what the Healthy Housing Initiative does is it
goes into places, people living with poverty. It goes into
their house, identifies all the problems and then goes about trying
to solve them. It's not always perfect, but that's... that's
-- in a nutshell -- (49:05) what they try to do. As I say,
it's systematically underfunded. The problem with, you know,
some of these initiatives, like the Well Homes Initiative in Wellington,
is that they uncovered this enormous problem and, then really, we
can't... we don't have the funding, (49:15) or the resourcing is
just not being pumped into it to actually deal with the problem.
So, yes, things like the Healthy Homes Initiative, things like Well
Homes, (49:25) which insulated a lot of houses around New Zealand,
those are great initiatives and the Healthy Homes Initiative, for
example, is eminently scalable. You know, these are things
that deserve lots of resourcing. (49:35) The problem is getting
over this idea that we don't have a problem, because we absolutely
do. Old, cold, full of mould. We need to absolutely
come to a collective understanding on that.
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Q+A: How does old, cold, full of mould lead
to (49:41) an auto-immune response?
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J.G: So, what it does is the old, cold, full of mould leads to
the Group A strep infection, so that, the conditions that give rise
to the spread of that Group A strep infection, which then kicks
on to (49:58) the autoimmune response.
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Q+A: Right, OK, so, when you think about those determinants,
you think about old, cold, full of mould (50:01), what might an
effective political response look like in the short term?
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J.G: That's always the question, isn't it? The problem
with the three-year, three-ish year election cycle in New Zealand
(50:15) it's very hard to convince governments to do things that
... you know, to basically plant trees they might not see the shade
of. So trying to get ... convince people to pump in (50:24)
hundreds of millions of dollars into the Healthy Homes Initiative
that might only start reducing rates of rheumatic fever in 5, 10,
15 years is a pretty tough sell. (50:31) So, I think,
collectively, we need a bit of bravery, in terms of being OK with
setting these long-term goals, and then communicating why we're
setting these long-term goals. This is why we need to do this.
It's not going to be overnight. (50:41) We might not be in
government when this problem starts getting solved, but actually
we're going to be brave and we're going to pump resources
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Q+A: We've been hearing (50:51) moral and economic arguments
a bit this morning, but surely there is also an economic argument
for that kind of response, in that rheumatic fever, and lots of
other illnesses and diseases that come about as a result of old,
cold, mouldy housing (51:04) cost us money!
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J.G: Yeah, absolutely! So, a great evaluation was done
at the Healthy Homes Initiative -- and I'm not getting paid by the
Healthy Homes Initiative, it's just a great programme. An
evaluation was done that showed that it was absolutely cost-effective.
(51:14) So, it reduces GP visits, reduces the number of pharmaceuticals
that are getting picked up by prescription, reduces hospitalisations,
which are extremely expensive. Every hospital bed taken up
by a kid in ED (51:21) that someone else that could be there.
It's so expensive to run those things. You prevent those things
up-stream. You get the downstream kind of consequences of
that financially.
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Q+A: Yeah! There is a lot of debate in political cicles
at the moment about healthcare interventions and prioritisations
made with a consideration to a person's race. (51:44) What
have you made of that debate so far?
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J.G: I think that's showed us that the issue of ethnicity in New
Zealand is just continually divisive. We're such a young...
We're almost an immature country in that respect, I think.
(51:54) No, I used the example in the book about melanoma.
So we fund ... melanoma costs us roughly 180 million dollars a year,
this is broadly speaking, and this is about 2021-2022. (52:07)
Now no one thinks of melanoma as being a European disease.
We don't talk about we need to fund more melonoma drugs, we need
to get more melonoma prevention policies in place because it affects
Pakeha. Ethnicity isn't even mentioned. But it is still
absolutely a European disease. I could (52:23)... more than
300 New Zealand Pakeha die of melanoma every year. I could
count the number of Maori and Pasifika who die of melanoma on these
two hands...
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Q+A: Yeah. (52:30)
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J.G: Per year. But we don't think of it as a Pakeha disease.
We think of it, this is melanoma, we need to do something about
it. As soon as you start thinking about diseases that affect
only Maori (52:43) and Pacific peoples in the same way, all of a
sudden it becomes about ethnicity, all of a sudden it becomes about
race. And I ask in the book, "What does that say about
us ?" I think it shows a real level of immaturity around
dealing with these things (52:47).
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Q+A: It is a fascinating book, and -- like I say -- having the
personal and the professional insights is really valuable.
So thank you so much. We really appreciate it. (53:01)
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J.G: Thanks, Jack.
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Q+A: Jason's book is "The Twisted Chain". Here
it is here, it's fascinating and it is out on Wednesday this week.
(53:10)
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