Gordon Smith, MD, Professor and Chair of Neurology, Virginia Commonwealth University, gives advice on raising awareness and diagnosing myasthenia gravis.
Transcription:
It’s challenging to provide education for primary care around diseases that are rare. Myasthenia gravis is an orphan disease, using our current definition of less than 200,000 patients, but they’re probably closer to 130 or 150,000 myasthenia gravis patients in the country, which is not all that rare. I think you need to make it impactful. I think the impact here is we’ve got exciting therapeutics.
The goal is not necessarily that primary care doctors are going to be directly prescribing complement inhibitors or FcRn inhibitors, but that they recognize that there are very exciting, transformative therapies that are available for patients with myasthenia gravis. It matters. This isn’t some esoteric thing with a treatment that’s a little effective. These drugs are very, very effective.
Then just the clinical pearls of recognizing a patient that has double vision, droopy eyelids, trouble swallowing, variable muscle weakness, and so forth, needs to be considered for myasthenia. Here’s a couple of simple things you can do, and here’s where you can send that patient. I think it’s not only a great CME grant opportunity, but I think there’s also a care delivery model opportunity.
I suspect the answer to this, to be honest, is probably going to vary a bit region to region. I’ve worked in a couple of very different regions, and the way you might approach it in one may not be as successful as the way you might want to approach it in another. It’s complicated. There are overall access issues for healthcare that are driven by insurance, finances, or physical proximity. If you live in South Central Virginia in a rural community and you don’t have means, it’s hard to get to any doctor.
I think one of the things that was flagged in about, I think, 10% of our respondents was lack of faith in the health system. Particularly when you’re talking about new therapies that are hard to understand and might have some perceived risk with them, a historical lack of faith, an understandable lack of faith in the health system can drive some of this. There are, I think, multiple determinants. I think there’s probably a bias on the part of some providers in terms of for whom they’re going to recommend these very expensive therapies.
I was actually struck that only half of our respondents felt that race and ethnicity were drivers of healthcare disparities, because I actually think that’s a very potent driver of healthcare disparities. I think there’s also an opportunity for all of us who take care of patients to look in the mirror and think about our own biases, and this is another opportunity for a CME grant there providing training for those of us in patient care.
Then, of course, all these things become easier if you have a framework in medical school or a residency program, training and health disparities. We’re doing this in our organization now. We’re both at the institutional level and at the department level, being much more findful in training our residents to think about disparities. We’ve started doing health equity rounds, where we talk about a particular issue that might create disparities in healthcare.
We just did one recently on translating services. If you’re caring for a patient who is not a primary English speaker and you need a translator, that creates an opportunity for significant disparities. The same goes with our ability to train primary care doctors about certain diseases like this. It’s going to be easier to do it within the context of a phase in one’s career where you’re focusing on medical education.
To learn more: https://checkrare.com/diseases/autoimmune-auto-inflammatory-disorders/