In light of ALS Awareness Month, the associate professor of neurology at Columbia University discussed the ways in which advocacy has provided a platform for patients and improved conversations in care. [WATCH TIME: 6 minutes]
WATCH TIME: 6 minutes
“Patients used to connect with each other through local support groups. So, your network of other people that you knew who were facing ALS or caregivers who were taking care of patients with ALS was really the 15 to 20 people who would show up to support groups. Then came online meetup locations, like Facebook, where people can find one another. That has given full momentum to patient organizations.”
As is the case for many rare diseases and disorders—and even more common ones—the importance of advocacy is difficult to understate. Throughout their care journey, patients and their caregivers are often forced to advocate for themselves on an individual level, and similarly, physicians have been tasked with advocating for the patients they see in day-to-day practice. But the buck does not stop on the small scale.
Matthew B. Harms, MD, associate professor of neurology, Columbia University, and medical consultant and care center director, Muscular Dystrophy Association (MDA), offered his insight into advocacy in a conversation around ALS Awareness Month with NeurologyLive®. Specifically, he detailed the evolution of advocacy in the last decade as the rise of the internet and social media have brought people together who were once separately so greatly geographically that they were unable to connect on any level.
This has, in turn, led to an explosion in advocacy efforts and organizations, and the strengthening of existing ones. The amyotrophic lateral sclerosis (ALS) community has perhaps benefitted more than any other when it comes to advocacy campaign success, with trends like the Ice Bucket Challenge raising invaluable awareness for the disease as well as actual funds for research. Harms spoke to how this change has impacted the clinical care of patients and shifted some of the conversations about treatment and management of the disease.