Shoshana Lipson, a patient advocate and founder of the “ CGRP & Migraine Community ” on Facebook explains how the group works to support patients with migraine.
How does the group you founded, “CGRP & Migraine Community,” work to support patients?
So, I actually started with the CGRP & Migraine Support Group [but] we actually changed it to CGRP & Migraine Community just because that’s really what it’s become. I started it last June so that it could support, guide, and educate people who have migraine who are navigating their way through the process of informing themselves and possibly trying one of the new [calcitonin gene-related peptide] CGRP medications for migraine.
So that’s why I started it. It has grown rapidly; we now have about 6500 people in it. What is especially exciting for me is those people are active. In a lot of groups, people will join and then they won’t participate. I would say in the last month we’ve had almost 6000 out of that 6500 people actually interact, make posts, comments, [and] react in one way or another which is huge. It just goes to show this is a huge need that is out there.
In terms of support, working our way through what I call the maze of the CGRP medications—and it really is a maze it’s confusing–has turned into what is often a rollercoaster for many people. So, they’re very excited, they have lots of hope, and [then] they’ll discover they don’t know how to get ahold of the medication, or they’ll get one story from their physician, another story from the insurance company, and then another story from their friends as well.
So, [it’s about] discovering which medication is best for them. [Answering questions like] “What exactly are these medications, we’ve never heard of them before, what are potential side effects,” is a huge question. [Also,] “How do we access them through the patient access programs,” [is a big question] because each medication has their own program and it’s not necessarily easy to understand and the programs are evolving, so what was true back in May or June 2018 is not necessarily true now. Some things have been removed, other things have been added and it’s hard even for me to keep up and I lead the group.
So, we try to condense that information and put it into a format that is easily understandable so that the patients are informed.