Most of what we think we know about gout isn’t right, says Leanne Te Karu, a prescribing pharmacist working in Turangi and Papakura. And that has painful and often dire consequences for those who suffer from it — many of them Māori and Pacific people.
Kia ora, Leanne. You were one of the authors of an editorial in the New Zealand Medical Journal last month, called “New Zealand: the equity crisis continues in plain sight”, in which you talk about “the inequitable treatment” of gout in New Zealand. Can you tell us a bit more about that?
Yes. Our editorial was a response to new data for gout which was published in the Atlas of Healthcare Variation.
Three years ago, the Atlas published data up to 2014, showing that gout in Aotearoa New Zealand was growing and being mismanaged — with different treatment and rates according to ethnicity.
When those figures came out, my co-authors and I wrote an editorial in which we posed the question: “Gout in Aotearoa New Zealand: are we going to ignore this for another three years?”
Well, last month, the Atlas published new data, which included 2016, and it was clear that the answer to that question was: yes.
The evidence shows that inequitable treatment has worsened!
As our November 2018 editorial points out, the new data shows a growing crisis in equity. There’s more gout nationwide, and worse and less treatment for Māori and Pacific, resulting in more hospitalisation.
For example, in 2016, Māori and Pacific peoples had four to nine times as many hospital admissions due to gout than European and other ethnicities.
How exactly is treatment inequitable?
It’s been clear for a very long time that Māori and Pacific people are more likely to suffer the effects of gout at an earlier age, with greater negative consequences — that is, the gout is more severe and the burden greater.
And yet they’re less likely to receive the medicines which will prevent gout from recurring.
The management of gout in Aotearoa is shameful. We have repeated evidence that the inverse care law exists for gout. This means that the people who suffer most with gout are less likely to receive treatment that will cure it, and less likely to have their condition managed appropriately.
How can we accept that as a country?
The worst aspect is that this is all so unnecessary. It’s not always the case in medicine that we can diagnose with certainty and then “cure” that condition with medicines that are relatively safe if used appropriately. But that’s the case here.
In the case of Māori, given that we have the shortest life expectancy when compared to all other ethnicities in New Zealand — and that gout is associated with poorer health outcomes, and yet can be cured by medicines — this inequity is beyond being unacceptable and inappropriate.
Most of us think of gout as a lifestyle illness. It’s been called “a rich man’s disease” and “the disease of kings” because it was thought to be caused by too much rich food and wine. But that’s not strictly true?
That’s right. Gout shouldn’t be thought of as solely a lifestyle disease.
A significant amount of evidence shows there’s a genetic component to gout, which is why it’s more common in Māori and Pacific people. More than 38 percent of Māori men and more than 30 percent of Pacific men aged 65 or older get gout. That’s a huge number of our tāne affected.
This makes Aotearoa a hot spot in the world. Rates of gout in general practice here have been shown to be greater than those for diabetes and cardiovascular disease.
It’s important to understand that gout is caused by high levels of uric acid in the body, and Polynesians can have naturally high levels and a genetic predisposition to uric acid build-up. It’s much easier to be tipped into a gout attack if uric acid levels are high. So food and drink should be thought of as triggers — not the cause. Other triggers include injury, dehydration, and some medicines.
Unfortunately, the kōrero around gout being a lifestyle disease is persistent, and often clinicians contribute to this by focussing solely on lifestyle. That myth has been perpetuated for so long that there’s now a stigma attached to having gout. I worry about that because it stops whānau from seeking treatment for fear of being judged. Often whānau are embarrassed about having gout. They blame themselves, and they often deny they have it. I’m sure we’re all familiar with whānau laughing at one another thinking they’ve over-indulged.
But if you’re a sufferer and your condition continues to go untreated, it’s no laughing matter.
A consequence of the lifestyle myth is that people who suffer from gout don’t get the right medication. They’re more likely to be prescribed — or to borrow or buy — NSAIDs. That’s non-steroidal anti-inflammatory drugs, like Voltaren, Nurofen, and Naproxen.
But these are NOT “gout medicines”. They’re purely medicines to help with pain. They will never prevent gout and they carry the possibility of significant side-effects, including stomach ulcers, kidney damage and heart issues.
I understand you’ve been on this kaupapa of trying to get equitable treatment for gout in Māori and Pacific Island communities for more than 15 years. What led you into it?
I was aware of gout from a very early age, largely through seeing it among wider whānau and in the community. But my first professional experience with gout was through involvement with the renal (kidney) team at Waikato Hospital, in my first year out of university.
Talking with people who were waiting for transplants and people receiving dialysis treatment, I came face to face with the reality of poorly managed gout — it was starkly common.
It was an enigma to me at that time, because the situation seemed senseless — and to a degree, that remains the case, decades later.
So what is gout? What happens when you get it? And what’s the right treatment?
Gout is the most common form of inflammatory arthritis affecting adults. It’s caused by a build-up of uric acid in the blood, which forms crystals in the joints. With these crystals in the joint, the body reacts and the joint will become swollen, red and very painful. The pain can occur in any joint but is most common in the big toe.
The pain can be excruciating. People describe the pain as an 11 out of 10 on a pain scale. I’ve had big, burly men say things to me like: “I’ve ripped my bicep off my arm playing league but that was nothing in comparison to gout. It’s mean. It’s relentless.”
It’s debilitating, too. It can mean long periods off work, and not being able to take part in social activities.
We know that gout is associated with heart disease, kidney disease, diabetes, and a risk of dying early. Long term, it can lead to joint damage if left untreated.
But gout can be “cured” and no one need suffer the excruciating pain, or be exposed to increased risk of a shorter lifespan.
There’s a very effective treatment called allopurinol, which lowers the levels of uric acid in the blood. Allopurinol, if prescribed properly and dosed appropriately and taken long-term — that is, indefinitely — will prevent gout from happening and allow people to eat kai that may be a trigger for them now.
But the evidence shows that Māori and Pacific people are much less likely to be prescribed it than Pākehā.
You must come across a few gout sufferers in your work as a prescribing pharmacist.
Sadly, I have multiple stories of treating people for gout who’ve been failed by health practitioners. That failure is the reason the battle has been so long and continues today.
A recent one is a 39-year-old man who got gout in his hip, which admittedly is not that common. The diagnosis was confirmed in hospital with crystals taken from his hip joint. He works all night as a forklift driver and comes home to relieve his wife from minding their small children, so she can start work as a cleaner.
He has joint damage in his hands and he’s worried about losing his job as he has trouble gripping the steering wheel. He’s not overweight, possibly underweight, rarely drinks alcohol. He does like kaimoana, but for the 19 years that he’s had gout, he’s been told to change his diet and given only pain relief, not prevention.
Then there’s the 42-year-old ex-gang member who’d been a very promising rugby league player — a Māori junior representative. He started getting gout in his 20s. He tried to shrug it off as injuries, but it kept recurring. He ended up being dropped from the team and lost his way in life. He joined a gang, and life became a cycle of feeling inadequate and being in pain. He told me about going to multiple accident and emergency centres and GP clinics, and to pharmacies to get pain relief.
One time he was given a bottle of allopurinol, which he now understands to be the prevention medicine — but he didn’t understand what he was being told, and nor could he understand the directions on the bottle.
He became so angry, he threw them in the rubbish. But with regular allopurinol, he’s now in paid employment and hasn’t had an attack for a year.
I’ve had a 65-year-old kuia who told me how pleased she was to know that there was a way to prevent gout pain from occurring because that would be important for her children to know. She wasn’t worried for herself because she described herself as being too old and likely to die soon. So it didn’t matter for her, just her whānau.
Everywhere I go, there is a story of gout.
The wife who came to see me in tears after her husband had lost his job because he was routinely unable to go to work, and he had become depressed to the point of being suicidal.
The 60-year-old man who stood at a hui and discussed his “short history of gout — only 13 years.” But it happened weekly and he was administering large quantities of various anti-inflammatory pain relievers, mostly Voltaren. He’s now on dialysis for kidney failure. Many of his wider whānau did not know this kōrero and it was clearly an emotional time.
I literally could go on and on with stories.
I don’t just see numbers when I’m reporting research. I see people’s faces and hear their kōrero, and the impact inadequate gout management has on them, all from a condition that is entirely manageable.
My scope of practice is general medicine, so I don’t only see people with gout. I see people with lots of other health conditions. I can only imagine how many more stories there would be if I solely ran gout clinics.
As a country, we need to make sure that everyone — health professionals and the public alike — fully appreciate that gout is a long-term condition. It’s not something that comes and goes. The pain of a gout attack might not always be there, but gout as a condition is.
What would make the biggest difference in reversing this trend, so we’re not seeing a worsening of statistics in another three years?
I think it’s clear, when we peel back the layers of data and evidence, that the response from the health system in general has been woefully lacking at times.
I’ve spent many, many hours over the years attempting to educate prescribers on what optimal gout management looks like. I’ve also spent many hours attempting to empower whānau to self-manage.
It works best when both are run simultaneously. If you empower whānau and they front up at a primary care service only to be prescribed differently to what they expected, or food choices are the focus of discussion, their confidence and commitment falls over.
Equally, if the myths, inaccuracies, false beliefs, or whatever you choose to call them, are not addressed, then it can be very hard for health professionals to get traction.
We need a mass campaign, not unlike John Kirwan and depression. We also need primary care to be incentivised to do better, and we need to have dedicated resourcing allocated.
If, for instance, gout was a primary care indicator like getting a heart risk assessment or a diabetes assessment is, that could be the start of a response.
The key is that such resourcing would need to ensure not only that health professionals have the correct clinical knowledge — but also that whānau/fānau are empowered through culturally safe and competent programmes.
Any last advice for gout sufferers?
Remember, whānau, gout isn’t just about pain in joints! It’s also about hearts and kidneys. It can be prevented from recurring and to the point where you can still enjoy trigger kai — like kaimoana, tomatoes and oranges.
Taking medicines for pain relief only isn’t “gout management”. But, if you can lower your uric acid to a safe level with medicines, then that is the definition of gout management.
And even if you only get gout two or three times a year, still ask to get your uric acid level checked.
Leanne Te Karu was born in the Waimarino under the maru of Koro Ruapehu where she affiliates to her Ngāti Rangi, Te Āti Haunui-a-Pāpārangi side. However, she grew up in the Tūwharetoa rohe of Turangi, and still works part-time there as a prescribing pharmacist in the only medical practice, Pihanga Health.
Her work in the health sector has been focussed on the application of medicines and health knowledge within a hauora and equity framework. That means she can be sitting in general practice in a clinic, or in a marae facilitating wānanga, or helping to write articles in medical journals, or developing curriculum for health professionals in training, or trying to influence decision making with health policy, or undertaking research.
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