Reactions to advances in migraine treatment, specifically with the development of disease-specific targeted therapies.
Jill Dehlin, RN: As a person with migraine, my journey has been quite long, and I found that after 5 years of my headache specialist not looking at my migraine diaries, that I had to stand toe to toe with him. It took a lot of courage for me to do that, and once I expressed my displeasure about my therapies and how they weren’t working, it turned things around for me. It was a light bulb moment for me because I knew then that I had to advocate for myself because he wasn’t encouraging me to do that. This is when I became involved in the national advocacy initiatives. I have to say that with all the new medications that are being prescribed now—the monoclonal antibodies, the ditans, the gepants, and other new classes of medication and treatments that are in the pipeline—it’s a really exciting time to be a headache specialist. It’s also really a hopeful time to be a patient.
Amaal J. Starling, MD: It really is, and I’ll tell you what I tell all physicians, health care providers, and patients about this time. This is not just an exciting time because of the CGRP monoclonal antibodies and the CGRP small receptor antagonists, but this is an exciting time because we have finally entered an era where we are developing disease-specific, targeted, mechanism-based treatment options.
The other thing I want to mention that you said, Jill, is about how you had to advocate for yourself with your health care provider and physician. I’m glad that worked well for you. I always try to empower patients when I am involved in community advocacy events and am speaking to patients outside of the office. I say that you should advocate for yourself and feel that you can talk freely to your health care provider and your physician. If you feel that you’re not being heard, you can fire them. You can leave. It is OK. They are not the end, and when you do so, it is also OK for you to write a strongly worded professional letter stating why you’re leaving. I think it’s important for them to know why you’re leaving. It’s important for them to know that you feel you have been stigmatized by that health care provider, and if they receive enough of those letters, they may change the way they’re interacting with their patients.
From a physician perspective, we can change the way we interact with our patients. It’s OK that our patients come to us with different treatment options, and it’s OK for us to be flexible with some of those options. Some of these devices that are coming on the market and different medications, patients may know more about it than we do! In fact, one of our devices, which had gone off the market and then came back, I didn’t even know it had come back on the market. A patient of mine had to tell me, and I was like, “Oh, that’s great! I didn’t know. Let me contact the company and get you a prescription for it.” Was I offended by that? No. That’s OK. I think that’s important.
Jill Dehlin, RN: I managed a medical office, a primary care office, for 12 years, and it’s always sort of a failure as an office manager when somebody quits your practice and you don’t know what is happening. I would encourage the health care providers who are watching to pay close attention to these letters because if you don’t know what your problems are, you cannot fix them.
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Transcript Edited for Clarity