Brain fluid leaks, heart troubles, environmental health in the Kimberley and defining health poverty
Norman Swan: Hello and welcome to this week's Health Report with me, Norman Swan. Today, could that headache be something your doctor hasn't thought about?
Sophie Mickel: I was at work, I just started to feel really off, and then all of a sudden I had the headache from hell, it's the only way I can describe it. It's like someone had taken a piece of elastic, wrapped it around my head and then pulled it really tight.
Norman Swan: That's headaches, later.
Politicians and bureaucrats tear their hair out about why the gap in illness and life expectancy between the non-Indigenous and Aboriginal and Torres Strait Islander communities in Australia isn't budging. But if you actually listen to Aboriginal communities, the mystery disappears, and it could save a fortune in hospital costs along the way.
Could a new concept called Health Poverty shift thinking for all disadvantaged communities?
And a shocking finding of extraordinarily high death rates from a common heart valve problem. The aortic valve controls the exit to the heart as it pumps blood around the body, including to the heart muscle itself. When the aortic valve narrows it's called stenosis, and aortic stenosis has several causes, including defects from birth, damage from rheumatic fever, and calcium build-up as we age. Aortic stenosis may have no symptoms, but as it becomes severe there is breathlessness, feeling faint, fatigue and chest pain on exertion, and it's well known to increase the risk of premature death from stroke and abnormal heart rhythm, amongst other causes. The question though is what is the risk of death relative to the degree of narrowing? That has been answered by the world's largest follow-up study of people who have had a heart ultrasound, it's called echocardiography. The technique is used to diagnose aortic stenosis. And in this study there were 530,000 echoes and 340,000 people, detecting aortic stenosis in 25,000 of them who were followed for over a million person-years. So it's not small.
David Playford is Professor of Cardiology at Notre Dame University in Western Australia and one of the founders of this huge registry of data.
David Playford: As the aortic valve starts to narrow down, the person with that problem doesn't know they've got a problem. They don't have any symptoms, they don't have any knowledge that the issue is there, and over time the valve, as it progressively narrows, puts a strain on the heart and then eventually as it is severely narrowed it does then produce symptoms, and at that point it was discovered a very long time ago that when the symptoms occurred, the risk of death was very high, and so that was the point where the decision had to be made on whether or not to intervene.
So the challenge over the years has been to work out when should we fix this valve. The actual surgery of the valve has some risk associated with it, so we don't want to subject somebody to surgery unless the timing is right. But at the same time, we don't want people to be left too long. So our question here was not related to the presence or absence of symptoms, it was just can we work out, purely based on the data we can pick up from an echocardiogram, whether or not there is a risk associated with leaving the aortic valve as it is without fixing it.
Norman Swan: And what did you find?
David Playford: We found that aortic stenosis itself is associated with risk at any level, and that severe aortic stenosis, as previously known and as expected, was associated with a very high risk of mortality if nothing is done about it.
Norman Swan: And quantified?
David Playford: Over five years there was a 68% mortality risk…
Norman Swan: So that's extraordinary, so nearly seven out of ten people when you've diagnosed severe aortic stenosis, which is simply how narrow the valve has got, how dysfunctional the valve has got, seven out of ten would be dead in five years of a stroke or a heart attack or something like that.
David Playford: We don't know exactly but it's most likely going to be a sudden cardiac death. So that is consistent with what we already know; severe aortic stenosis, if left untreated, is associated with a high risk of death. But the surprising finding that we didn't expect was that moderate aortic stenosis, so not within what would normally be expected to be associated with risk like this, was also associated with a high risk of death, 58%.
Norman Swan: So it's still nearly six out of ten people, it's not that much lower, six out of ten will be dead in five years.
David Playford: That's right. Now, the thing that we don't know is why this has happened. Some of these people may have had other things wrong with them. So we don't know for sure whether or not the aortic stenosis itself was the cause of death. And so what we need to do now, the next step is to try to…
Norman Swan: Because the temptation would be just to replace the valves in everybody over a certain level, which would be a motser for the device industry.
David Playford: Well, it could be, but we have to be a little circumspect here because we don't know that this finding is directly due to the valve. So the next step is we need to verify this finding in other populations. And then the next thing we need to do is a clinical trial at a lower level of aortic stenosis. And if we can find that intervention of aortic stenosis at a lower level is associated with an improvement in outcome, then that's the thing that will change how we practice.
Norman Swan: And of course if six out of ten people are dead in five years, it won't take you long to find out if it's real.
David Playford: Yes, that's exactly right. If we can find that over a period of, say, two, three, four, five years there is a significant reduction of risk, then this is going to be a procedure worth doing. Because the procedure itself has some risk associated with it, there's going to be the risk of the surgery or the transcatheter valve replacement, and then what that particular risk is overcome, then it will be the device itself compared with not doing anything.
Norman Swan: How common is aortic stenosis in the community?
David Playford: Internationally approximately 5% of people, so it's quite common, over the age of 70.
Norman Swan: Apart from age and maybe Aboriginality if you've had rheumatic fever, is there anything about the person who develops aortic stenosis that is different from the average?
David Playford: There are several different things that people are born with that increases the risk of developing a narrowed aortic valve. So a normal aortic valve has three separate leaflets to it. There's a thing called a bicuspid aortic valve where there are two leaflets rather than three, and a bicuspid valve is much more likely to narrow over time.
Norman Swan: But you're not going to know you've got a bicuspid aortic valve, are you?
David Playford: No, that's right, so it's usually picked up incidentally, so there's a murmur that is heard by putting the stethoscope over the chest, or it's identified by an echocardiogram, just discovered incidentally. Or there could be a family history. So one family member has had a bicuspid valve, then another family member could potentially have one as well and it's worth screening families.
Norman Swan: And if you've got a history of sudden cardiac death in your family, is it the sort of thing you'd look for?
David Playford: Absolutely, so sudden cardiac death, there are a number of different causes but one of them is a narrowed aortic valve, and if it happens in young people then you would be thinking about an abnormality in the aortic valve that has happened from birth. But the most common form of aortic stenosis is the calcific aortic stenosis caused by progressive narrowing of the aortic valve over time and that's why it's more common in older individuals.
Norman Swan: But you found such a level of increase, are you going to create panic? If I've got moderate aortic stenosis and you tell me I've got a 60% chance of death in five years, it's going to put a huge imperative on seeing the cardiac surgeon.
David Playford: I hope it doesn't do that because that's not the intention. What this data is showing is that these are people with aortic stenosis. We are not saying these people are dying of aortic stenosis. There is lots of cardiac disease that if people have aortic stenosis they may also have high blood pressure, they may also have coronary disease, they may also have kidney abnormalities, there's a whole series of things that people may have that we just happen to also find aortic stenosis in those people. So I don't want to give the impression that aortic stenosis is necessarily the cause of the problem in all these people, but it certainly raises a significant question that we now need to answer.
Norman Swan: David, thank you for joining us.
David Playford: Thank you very much.
Norman Swan: David Playford is Professor of Cardiology at Notre Dame University in Western Australia.
And this is RN's Health Report with me, Norman Swan.
Headaches are common, but sometimes people struggle to find the right diagnosis and treatment, and that's especially true of a particularly severe type of headache caused by a leak of spinal fluid. Health Report producer James Bullen has the story.
Sophie Mickel: It was January 2018, so almost two years ago. I was pretty fit, pretty healthy, never suffered from any headaches. We were on a family holiday in Adelaide and I just started to feel a bit achy in the neck, I had a few neck aches, I thought I'd just slept funny in a hotel. I came home from the holiday, and then on 1 February I was at work, I just started to feel really off, and then all of a sudden I had the headache from hell, it's the only way I can describe it. It's like someone had taken a piece of elastic, wrapped it around my head and then pulled it really tight.
I was driving to pick one of my kids up from school, picked her up from school and just said to her, I need to pull over. I pulled over, laid down on the grass and the headache just disappeared.
James Bullen: But that definitely wasn't the end of it for Sophie.
Sophie Mickel: It kept coming and going. It wasn't like it was all the time to start with, and then it got to a point where every morning I'd be okay to start with and think, oh, that terrible headache is gone, to within an hour, half an hour to an hour of getting up, the headache would start again. And I had tinnitus as well and the blocked ears, a little bit funny vision, bright lights seemed to affect it, it was just all very, very odd.
James Bullen: Over time she became bedridden.
Sophie Mickel: You just want to lie down. You'll be up for a while and you'll just get this pulling sensation like your whole body just wants to go and lie down and it's the best place to be. I went to emergency twice and went to the GP twice and was told I had sinus issues. The second GP I saw, he said, 'Look, just for your peace of mind I will order you a brain MRI.'
James Bullen: The brain scan suggested Sophie had something called a cerebrospinal fluid leak.
Sophie Mickel: I'd never heard of the condition, knew nothing about it. That's kind of where things started for me on the treatment side.
James Bullen: Cerebrospinal fluid or CSF is a clear liquid that surrounds your brain and spinal cord. It's a cushion for the brain. When someone has a traumatic brain injury, especially if it's accompanied by a skull fracture, the CSF can leak, causing headaches, nausea and vomiting. Doctors look out for CSF leaks after a brain injury, although even then they can be missed. What's even harder to spot is a spontaneous CSF leak. It's very rare and the symptoms can make it look like other conditions. It affects women twice as often as men. A spontaneous leak is what Sophie experienced.
Scott Davies: The hallmark feature is a headache, but this is not like any other headache, it's a headache that improves very quickly virtually when you lie down.
James Bullen: Dr Scott Davies is a neuroradiologist with the Neurological Intervention and Imaging Service of Western Australia.
Scott Davies: Characteristically the headache sits at the skull base, can radiate down the deck into the shoulder blades, but there has been many times patients' headaches just feel like a beanie over their head, skull-crushing pain, and sometimes it sits unilaterally or behind the eye.
James Bullen: While the headache is a common feature, patients can present with all sorts of other symptoms. Dr Davies stresses that it's difficult to pinpoint and it varies from patient to patient.
Scott Davies: Gait disturbance. Sometimes patients just have nausea and vomiting, some patients just have tinnitus, which is just a buzzing in the ears, and sometimes patients just have a muffling in their hearing. Unfortunately with this particular condition, because of the variability of clinical presentations, a lot of patients are misdiagnosed or undiagnosed. And I would take a typical scenario would be patients who have had some form of a headache, they've presented to ED, been dismissed with analgesia, and down the line been diagnosed with migraines, and those patients have then come to me and say, you know, 'I have actually been struggling with this condition for a long time.'
James Bullen: It's often unclear what prompts a spontaneous CSF leak. Sometimes the membrane protecting the spinal cord, which is called the dura, is thinner and weaker than usual. The dura rips and CSF leaks out. In other cases, bone spurs around the spine tear a hole in the dura.
Sophie Mickel: In my case it was a little bit of bone that was sticking into my dura that had kind of torn a hole in my dura. My theory is lugging suitcases upstairs, I maybe twisted funny, and maybe that was enough to puncture the dura or start the process.
James Bullen: To diagnose a leak, doctors usually start with an MRI brain, a scan which sometimes is able to look at the pressure in the brain. From there, an MRI scan of the spine may be ordered, including something called a CT myelogram where contrast is injected into the spinal column which might be able to trace the leak. Even with these tests, the leak doesn't always show up on a scan.
Once one is diagnosed though or at least strongly suspected, there are a few treatment options. The first is a blood patch, where blood is drawn out of the body and then injected into a space between the spine and the dura, in the hope it will clot and block the leak. Another option is a fibrin glue patch. It has the same aim—blocking the leak—just a different material. Both of these can be used as a diagnostic test as well to see whether putting the patch in place makes any difference to the symptoms. A fibrin glue patch is what Sophie went with.
Sophie Mickel: I had to that procedure done and I knew within three or four hours that he'd got the spot. My head cleared and I thought, I'm fixed.
James Bullen: Sometimes the patch is the end of the story, but for Sophie it only lasted a few weeks. She eventually opted for a surgical fix.
Sophie Mickel: I had the bone removed and then the neurosurgeon basically put stuff around the dura to seal it, and I was fine for three weeks post-surgery. And unfortunately I got a second leak.
James Bullen: Two patches and two surgeries later, Sophie still hasn't returned to full health, but she says she is on the slow path to recovery.
Sophie Mickel: So I've gone from being bedridden, couldn't really do much, I'd have to really plan how things were going to happen in the household. I've got three teenage daughters. We were doing logistics, getting them to sport, how are people going to get fed, it was really difficult, whereas now I can function. Where I am to where I was, a huge improvement, absolutely a huge improvement.
James Bullen: Dr Davies wants doctors from across Australia to keep an eye out for the leaks so they can build knowledge about the condition together. It's still an emerging field.
Sophie Mickel: It's very hard to explain to people why you can't get out of bed, why you are basically housebound, and I don't think doctors really understand how debilitating it is.
Norman Swan: Sophie Mickel, ending that story from James Bullen.
A study in the Kimberley in Western Australia has found that the environment in Aboriginal communities explains a significant percentage of hospital admissions and many millions of dollars in costs. These same environmental factors increase the incidence and severity of over 40 diseases and are likely to explain a proportion of the gap in life expectancy and wellness between Indigenous and non-Indigenous Australians. The study was driven by Nirrumbuk, the Kimberley's Aboriginal-owned environmental health enterprise. I spoke earlier to Chicky Clements who is an environmental field support officer, and Ray Christophers who is the CEO of Nirrumbuk.
Ray Christophers: The interest in where governments are coming from in closing the gap, it started getting us to look at what else can we see out there that could make a difference and coming up with data on hospitalisation, with Kimberley people going south to try and look at the environmental health attributable diseases out there that we could possibly do something with. And having a look at costings, if we can show that preventing some of this stuff, there could be a cost factor in it. So when we crunched the numbers and the money, hospitalisation for Aboriginal people in the Kimberley in one year alone we would come up with $19 million, directly in environmental health factors that could have been prevented.
Chicky Clements: The starting place is from within the environment, which impacts then to the clinic and then to those hospitalisations. That's what we're talking about across the Kimberley.
Norman Swan: And I think that, what, 30%-odd of the total spend can be directly attributed to the environment.
Chicky Clements: Yes, that was just hospitalisations, that's not counting the PATS [Patient Assisted Travel Scheme] where you've got to fly the people in, the families, getting them from a remote community into town, to the city, it's not counting that.
Norman Swan: The National Aboriginal Community Controlled Health Organisation, which looks over community-controlled groups such as Nirrumbuk and others, has said that you are really leading Australia in terms of this link between the environment and Aboriginal health and well-being. What are you doing and what's different and why is it likely to have more of an impact on the gap than perhaps previous efforts?
Chicky Clements: Well, for here in the Kimberley that started off as the Kimberley Aboriginal Health Planning Forum, and that consists of the Aboriginal medical services, the WACHS, the government-controlled medical services, and environmental health, that is the committee across the Kimberley that has a pretty powerful voice. And just by having that as a powerful voice to make things happen, for us that's where the biggest changes have come. I think that's different to what's happening anywhere else.
Norman Swan: Because Ray, I think the criticism you hear again and again is that government and others come in and do it to Aboriginal communities—new housing, new sanitation or what have you—but it's not done with consultation or indeed local control, therefore it often goes wrong.
Ray Christophers: Yes, that's what we've found. It's a lot of 'you need to do this', 'you need to do that', instead of why. Out in the communities, you have to push for 'wash your hands' and you can go to the schools sometimes and find there's not even…soap is not provided. And then in a lot of the remote communities it just goes amiss. And animal management that we do quite a lot of and they say you only need to have two dogs, but they don't give the reasons why.
Chicky Clements: Our biggest change has been we have workers that live in the community and work for Nirrumbuk, it's a proper structured organisation. It's not just a matter of dogs, it's historical stuff. People have got fresh in their minds about what happened in the '50s and '60s where police and rangers would go out and they'd just shoot dogs. The more remote, more traditional you go, the stronger that bond is with dogs, and that dog can pass these diseases onto you.
Norman Swan: So what has been the sort of things that you've done about dog health which will then translate to improved health in the community in a tangible way?
Chicky Clements: Probably the biggest one around the Kimberley's was the spraying dogs for internal worm treatment, worms going from dogs to people.
Ray Christophers: The desexing program.
Chicky Clements: The desexing program, we pay for it, two days desexing with our local vet. Then another community wanted to do the same. So having people live in the community, there is that constant message going out and it's made a huge, huge difference and invariably leads onto people's health improvements.
Ray Christophers: Prevention. There's not enough done on that. When you talk about rheumatic heart or scabies, not enough is done in that prevention world.
Norman Swan: Let's move onto housing because housing is a huge issue in every Aboriginal community, particularly remote communities. What has been your approach to housing?
Chicky Clements: The issue there is the time between getting maintenance and things fixed up, things like just having hot water and being able to wash on a regular basis. The time it takes to get leaks done, repairs done to housing, say, in your remote communities is just ridiculous. See, it took us maybe 10 or 12 years for our workers to be able to do plumbing repairs. We fought 10 years for that. The improvement that's made, just people having taps fixed up, something as basic as that. The other big issue there is getting timely repair to leaking sceptics and sewerage and stuff like that.
Norman Swan: So you've been able to upskill the local community so they don't have to wait on the Housing Department to arrive.
Chicky Clements: It's our workforce that does it. See, we measure leaks on houses, and the worst leak we got was 10 litres a minute running through a tap…
Norman Swan: 10 litres a minute?
Chicky Clements: A minute, yes, so you do the maths on that.
Ray Christophers: And just adding on to what Chicky was saying, in remote communities, it is a harsh environment, and a lot of times the building materials that are put in aren't of high quality. Within months of a new home you'll find that the stuff that they've put in haven't stood up to the environment. And when you're talking about crowded homes, in a normal family of four or five you turn a tap on, you might do that in the shower twice a day for four people. When you're in crowded conditions, you can understand that this is working nearly four times the amount of time. The stuff they put in does not hold up to the amount of use that it gets, and of course we get a stigma about they don't know how to look after it or it's just the way we treat things, and it's not like that at all.
Norman Swan: You're an Aboriginal owned enterprise, where does your money come from for your project?
Chicky Clements: We are funded through Perth Environmental Health Directorate in Perth.
Norman Swan: And do they give you freedom to operate in the communities so that you do what you know works? Is this a career-ending question I'm asking you two?
Ray Christophers: It is a changing world. They do with respect but it's needing more and more partnerships to be able to make that difference.
Chicky Clements: It always comes back to who's in power, state and federal, and the changes they make, and the communities have never had, say, a 10- or 15-year program to run with something, to try something, to better something, it has always changed every change of government.
Norman Swan: What you're saying is that the investment on the ground is patchy and people are still ending up in hospital and in clinics, more sick than they need to be.
Chicky Clements: Yep.
Ray Christophers: When people go to the clinic, they get treated, but they go back to where they come from and that particular house, so nothing is looked at how that can be prevented. Kids are constantly in the clinics getting treatments for skin sores, sore throats, but they haven't looked at the history of that person and how they have grown up in the community. And that's what we are trying to get on top of.
Norman Swan: It's ironic, and people will still say, well, why is the gap still there, and here is one big reason why it is. Thank you very much to you both for joining us on the Health Report.
Chicky Clements: Thank you for giving us the opportunity.
Ray Christophers: Thank you.
Norman Swan: Ray Christophers and Chicky Clements of the Nirrumbuk Environmental Health Services in the Kimberley.
According to a leading health economist, it may be too simplistic to describe health problems in disadvantaged populations separately from economic disadvantage. He suggests a measure called Health Poverty because it might be more effective in driving sensible policies, spending and programs. Philip Clarke is director of the Health Economics Research Centre at the University of Oxford, and is also at the Centre of Health Policy at the University of Melbourne and he's talking to us from Oxford today. Welcome back to the Health Report, Philip.
Philip Clarke: Hello Norman.
Norman Swan: What are the problems you're trying to solve?
Philip Clarke: Well, for a long time people have thought about what's called income poverty, and the idea is you try and work out how much income you need for the necessities of life. And so in Australia, for example, the poverty line, which has been calculated by the Melbourne Institute and it's called the Henderson Poverty Line is around about $700 a week for a couple, as it were, without the need to pay for housing. And I suppose the idea is then you can measure what proportion of the population that fall below that, and the idea I've had is that we really need the same concept in health, particularly because doctors often use thresholds to measure who needs to be treated.
Norman Swan: And we are calling it health poverty. So it sounds as if you are conflating the two; poverty and poor health.
Philip Clarke: Well, poverty is a multidimensional concept, and so income is obviously one dimension and health is potentially another dimension. So what we are trying to do is shift these measures that have been typically used to measure income poverty to other measures such as health.
Norman Swan: I suppose people have thought that poor health is tightly linked to things like post code and income, but you're suggesting that it might not be as tight as that or as clear.
Philip Clarke: It is to a degree, although often it's actually…I mean, there are many factors and we've actually calculated individual risks of mortality using Australian data, and there's a large range of factors that impact on your risk, including your health status of course. It does also include your income and education. So based on these wide range of factors we can make predictions of people's life expectancy and then use that to develop poverty measures.
Norman Swan: So you calculated bringing in all those variables?
Philip Clarke: Yes.
Norman Swan: So you just were listening to that interview I did in the Kimberley about environmental health problems and trying to close the gap. Does this health poverty measure help to close the gap or could it?
Philip Clarke: I think potentially because you are trying to get accurate measures, as it were, potentially of where we are, and I think that's a first step. I think what you have to do to layer on top of that is then look at what health interventions you might use to actually reduce those gaps, either in life expectancy or in other measures such as your cardiovascular risk or your risk of having a heart attack.
Norman Swan: So give me an example of where defining health poverty gives you a more directed spend. Because presumably what you're talking about, as an economist, are things like incentives and resource allocation.
Philip Clarke: Well, I think what you've got to do here, as I said, is measure where we are falling below the way people should be treated. A very good example, for example, is treatment of cardiovascular risk. We have a very good and effective drugs, very cheap drugs such as the cholesterol-lowering drugs, statins, or blood pressure lowering drugs. But often about 50% of people who should be taking them aren't, and I think a health poverty measure is one way…one is to measure what proportion of the population are still at a risk level that they would need to take these drugs, but also to answer those what ifs. If everyone who should be taking them did take those drugs, how much you could shift that risk and reduce these gaps.
Norman Swan: It's not so simple, obviously. One of the reasons why people might not be taking those drugs is access, it could be culture, it could be all sorts of other reasons. Does the health poverty index direct you towards where within cardiovascular disease you might direct your efforts, because it may not be a statin that you would spend your money on.
Philip Clarke: Absolutely, and I think you have to use these measures or what economists call index measures, in association with trying to look at the what-ifs of modelling, as it were, risks and benefits of different interventions. But I think we have the tools and we have the evidence to be able to do that in a very systematic way, both to decrease the Indigenous and non-Indigenous gap in Australia, which is often reported as being around 10 years, but also other gaps across the community which clearly exist.
Norman Swan: And could be just as large. And so I can imagine you doing it for heart disease, I can imagine it for diabetes, there already are some measures around that, but cancer, given that there are so many different forms of cancer? Could you imagine a health poverty index for cancer?
Philip Clarke: Providing I think you've got some measures, as it were, clear measures of risk of cancer and then you've potentially got some interventions that could reduce those risks, and there are obviously a number of ways of reducing our risk of cancer. One is obviously to give up smoking.
Norman Swan: I won't go into too much detail, but we've covered a lot on the program over the years, the global burden of disease which uses a measure called the DALY, and they started off like you did, looking at the diseases, but then they rapidly moved towards the risk factors. Can you actually have a health poverty index which actually looks at the risk factors for disease rather than the disease itself?
Philip Clarke: Potentially, although I think often…well, for example, take cardiovascular disease, people have moved away from the individual factors to looking at these overall scores for your risk of having a heart attack over a period such as 10 years, and it's probably…given the multifactorial nature of health, it's probably good to move towards these global measures. And I quite like both cardiovascular risk but also gaps in life expectancy because they are meaningful for everybody if I can say 20% of Australians can expect to live four years or less than the average Australian.
Norman Swan: Philip, we will watch this space, it's a shot across the bows. Thank you very much for joining us.
Philip Clarke: Thank you.
Norman Swan: Philip Clarke is a director of the Health Economic Research Centre at the University of Oxford. He is also at the Centre for Health Policy at the University of Melbourne.
I'm Norman Swan, this has been the Health Report, see you next week.
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