Why are older RA patients getting mistreated? Save
Most rheumatologists, if asked, would say that every rheumatoid arthritis patient should be started on a DMARD of some sort - if not at diagnosis, then pretty soon after. This core tenet of modern rheumatology is surely not just canon, but has been intuitive for decades, no matter the age of the patient. We believe we can manage DMARD adverse events, that DMARDs bring badly-needed symptomatic relief beyond the short, medium and long-term toxicity of steroids, that there is no upper age on DMARDs.
That is what I was trained to believe, and that is how I practice, and I don’t feel like that is some sort of exceptional approach. I would essentially take this as read. Glucocorticoid monotherapy is simply not an alternative. Short of end-of-life palliation, I am not sure I would ever do this.
So I am genuinely shocked that, in a large United States Medicare 20% sample dataset between 2008-17, less than 30% of new RA patients aged 66 years or older have a DMARD initiated (abstract 0433). That means that more than 70% of patients get care which I would essentially consider appropriate in less than 1% of circumstances.
Let that sink in. To be clear, we’re not talking about missing out on your favourite b/tsDMARD in favour of one that the insurance insists you try first, or having to navigate the most unreasonable of ‘step therapy’ approaches. We’re talking about any csDMARD - methotrexate, hydroxychloroquine, anything - in the first twelve months after a diagnosis is made, in people where billing already is happening. And this is not happening 70% of the time.
What is this? How does this happen? Am I so naive about healthcare realities that I am off by that much? We spend a lot of time at ACR talking about tiny incremental gains for our rheumatoid arthritis patients, navigating relative benefits or risks that are almost theoretical. How are so many RA patients getting something so far from that?
At first I thought that it must be due to misclassification of RA - after all, all sorts of things get called ‘rheumatoid arthritis’ by the person on the street. Not in this case - a validated claims-based algorithm for newly diagnosed late-onset rheumatoid arthritis, with a positive predictive value of 76-81%, requiring at least two ICD codes for RA at least a week apart, and only looking at patients with continuous fee-for-service 12 months before and after the index date. That sounds robust to me, and if that’s off then, even if you add in up to 30% self-remitting patients, it’s not off 70%.
I then wondered whether this could be cost. Were patients getting their meds cheaper outside of Medicare, or perhaps they could not afford even a csDMARD? I could think of one patient of mine who quit methotrexate, who said they quit it because it cost $7/month and they couldn’t afford it, with a lot going on in the background, and who ignored my pleading, or my attempts to explore any medicines-related concerns. Could it be insanely expensive and uncovered in the US? I asked, and I was reassured that csDMARDs cost cents and were never rejected by Medicare.
This was in the middle of ACR Convergence, so I tweeted it, asking “Do we hate old people with RA?”. Janet Pope almost immediately replied “Apocryphal!”. I guess she didn’t believe it either; I would have done the same thing if the roles were reversed. In the conference lunch break, I sat down with an American friend who I knew I could trust, a rheumatologist who understood the geriatrics landscape, sensible and thoughtful. Over some of the worst Mexican food in San Diego, I kept on repeating to him the words “I can’t believe it”. Sadly, he did. He showed me the full manuscript that had just come out (available here), told me other studies had had similar numbers, and bowed his head. “Ageism, just like any -ism”, he told me.
Bad things happen when good people do nothing. I am not sure whether some of it is attributable to an inability for such patients to pay for services or clinic follow-up, a fear of blood test monitoring, a lack of understanding. I do think, though, my friend is very likely very much right.
Maybe it’s bias in the mind of clinicians who should be doing the prescribing - if not rheumatologists, then geriatricians, primary care physicians, or other generalists - who feel that DMARDs are an unnecessary complication that leads to methotrexate lung or opportunistic infections or some other trumped-up medical student concern, and that long-term prednisone is the sensible, pragmatic approach. Maybe it is bias in the minds of the patients themselves, who think pain and stiffness is just part of getting older or who believe they are too old for fancy medicines like hydroxychloroquine. Either way, this is out-and-out ageism, because you wouldn’t let a 21-year-old do that.
We need to address ageism in rheumatology, because it seems it is leading to a whole lot of completely unnecessary suffering in a lot of people, swamping in magnitude any gains we might make from the sophisticated optimizations we advocate for otherwise.
I hope that ACR Ageing and Rheumatology clinical practice initiatives get traction, because clearly we need it. I hope if you are from the US, you fill out Una Markis’s survey on ageism (https://ais.swmed.edu/redcap/surveys/?s=NHXATCCARXFFK7Y3). I hope we begin to understand these numbers more, and figure out whatever change management process we have to to bring the majority of RA practice into something resembling the modern era.
I hope we learn to do better. If we don’t, then shame on us, because we definitely can.
For more information, watch my discussion with first author Dr. Jiha Lee.