At what point do we stop people hurting themselves?

5 minute read

Especially when, in clogging up our health system with people panicked by results of unnecessary and inappropriate tests, it hurts others as well.

I have yet to find a rheumatologist who actually likes drug shortages, or PRODA.

Few issues unite like the frustration of scanning signed forms on to a website on the regular, or telling a patient that the medicine that has sustained the incredible change in their life isn’t available because the relevant company forgot to make enough.

Having said that, few issues bring us together quite like that. It shouldn’t really surprise, because it takes all sorts in this wide church we call rheumatology. Our community consists of many different people who believe many different things, and that’s generally what makes us strong – we balance each other out and curb each other’s excesses to derive sensible consensus.

This is a good thing. I have friends who have spent recent months avoiding all crowds and wearing N95s everywhere, yet others have taken the first opportunity to dive into the darkest, dingiest bars they can find (clearly the kinds of friends I keep). My personal balance benefits from knowing people at both ends of the spectrum because that makes me actively check my thinking either way. There is something to be said for being surrounded by varied ideas.

Sometimes our opinions do aggregate, and common sense skews the spectrum of opinions one way, but even then, I think we try to understand things we wouldn’t personally do.

I think most of us, but not all, doubt whether PRP does anything for any OA beyond an expensive placebo, even in the holes which the evidence leaves. That’s not to say that I can’t understand its plausibility or entertain its appeal, but I think the majority of the speciality would feel that particular race has run its course.

Of course, it’s still promoted, and of course some will still make plenty of money from it. Ultimately, as long as I’m not paying, the cost falls on the lost hope of individual patients – but they go into it knowingly, and the flow-on implications for others are minimal. It is an expensive free hit, one which is not substantially substituting real treatment or creating many complications for others. In this case, people can own their own decisions without worrying about implications beyond that specific use case.

What I can’t countenance is that direct-to-consumer ANA and RF testing is available, at a click of a button, right now, to Australian consumers.

I say consumers, not patients, because this so-called service is available without any input from a doctor or any other health professional, and with minimal follow-up after. Anyone off the street who wants to do an ‘autoimmune check’ – and why wouldn’t you want to – can, without any guidance, place it in their shopping cart and head to the checkout page on the website.

If there were no flow-on implications, I wouldn’t mind. A fool and their money are easily parted, and heaven knows I have been parted from far more for far less. It is clearly not good for the consumer – there may be false reassurance or the uncertainty that a meaningless positive ANA brings. But if it was just their problem, I wouldn’t mind so much. Apart from an ill-advised photo wearing a Chinese army hat on the Great Wall, I have displayed no signs of authoritarian communism in my life, and long ago realised sometimes you can’t stop people hurting themselves.

The issue is that it hurts others. The last thing our system needs is to be clogged up with more and more people panicked because an unnecessary and inappropriate test, which they never needed and should never have had, told them they might have lupus (or Sjögren’s or scleroderma).

Even when that anxiety is easy to unpick – and we all know of patients who can’t be convinced that their ANA-negative lupus isn’t even remotely lupus – the cascade of investigations and clinical effort that follows is one that we can’t really afford to pay for or service. Every such patient who is referred, seen, assessed, tested and reassured burns through our already stretched capacity that we should be spending on people who need our help, before they fall into the laps of charlatans.

It is disgraceful. I cannot think of a legitimate need for this service. Even worse, it masquerades as patient empowerment, and to the casual bystander it might be bringing choice to those driven to desperation. But it really deprives consumers of a meaningful assessment and patients who need help of the capacity to be seen. I think every rheumatologist thinks so, yet this service still exists and makes money. 

The people running it must be laughing at me, because they make passive income while I sweat cleaning up their mess. I don’t begrudge their money – that’s the free market for you – but I do begrudge them profiting a relatively small amount for no justifiable benefit, with no consideration for the much more costly mess they’re allowed to simply leave behind, all while pretending they’re actually helping.

To allow this kind of thing to happen is a real own goal to every workforce issue that we face. This is just one issue of many, but I think the ARA is right in trying to create better advocacy – because I can convince you this is a bad idea, but we still struggle to be heard. Evusheld access for our patients is just one of many recent issues where, if we stay silent, we will suffer. 

And if we don’t think we can legislate against this, then maybe we need to think about all the other things we can do, even if that means punishing the complicit pathology providers with our feet.

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