Making History at the More Than Skin Deep Meeting
On September 23, 2019, the eczema community made history.
Over 150 individuals from all over the US gathered together at the More Than Skin Deep: The Eczema Patient-Focused Drug Development Meeting in Hyattsville, Maryland. (This doesn’t include those who streamed live online, totaling the count to over 500 individuals.)
What made this meeting historical was not the gathering and storytelling of eczema warriors and caregivers, but rather certain individuals and groups of stakeholders that were in the crowd listening attentively.
Decision-makers and stakeholders
Those distinctive persons included decision-makers from the Food and Drug Administration (FDA) and others involved in the treatment development process. Surprisingly, this type of gathering has never happened before in the history of eczema! (Side note: When I told my brother - who’s a doctor - that we were meeting with the FDA, his response said it all. “Woah, that’s something that never happens.” I know bro, I know.)
The FDA's influence
The FDA plays a significant role in incentivizing the drug development process. They can encourage and motivate certain treatments to be made in the pipeline so that they are safe, effective and made available to us. Hence, why this meeting was crucial! We want better treatment and what better way to voice this than to speak with the decision-makers face-to-face?
Showing what life with eczema looks like
The purpose of this meeting was to present to the FDA the burdens of eczema and the unmet needs related to treatment; it was a call to action. It was our time to show stakeholders what it’s really like to live with eczema and how unsatisfied we were with existing treatments. The agenda was filled with opportunities to do just that.
Patient and caregiver panels
There were patient and caregiver panels throughout the morning and afternoon that grabbed everyone’s attention from the get-go. It was not too long before the tears began to flow down our faces as we heard heart-wrenching stories of how much pain eczema has caused individuals and their families. From the physical discomfort of eczema - unbearable itchiness, blotchy red skin, and sleepless nights - to its psychological impact - including, suicidal thoughts, insecurities, and helplessness - many of us in the room could relate.
Live polling and open discussion
In between panels, we had the opportunity to participate in live polling and open discussion. This gave the audience members and our FDA friends a larger outlook on how we experience eczema, its symptoms, and treatments. We were directed to answer questions like:
- “Which symptoms have had the most significant impact on your life?”
- “What worries you most about your condition?”
- “What treatments are you currently using or have used to treat your condition or symptoms?”
Overall, this meeting was powerful, emotional, and life-changing. Here are three major takeaways I got from this experience:
A newfound respect for drug development
I had no idea that the process of developing a drug was so extensive, expensive, and rigorous. Starting from the beginning of drug development (discovery) to the end of clinical trials takes anywhere from 10 to 17 years. This does not include marketing and making it fully available to all parties. I decided to write a full blog on this (find it here!) because I was astonished by the extensive and competitive process.
Drug development for our community is in the works
After this meeting, I can confidently say that the eczema community is going to experience collective healing in the next few years. The research is happening. The treatments are being developed. The clinical trials are in place. The warriors are getting better and feeling more hopeful than ever before.
Join the movement
The eczema community is powerful and growing. Our voices are being heard and action is taking place. If you haven’t already joined the movement, do so now or forever hold your peace. Different organizations like the National Eczema Association and Heath Union are making strides to ensure our voices count, so be a part of the loop by signing up for emails.
Missed the meeting? No worries! Check out the full and live recording on YouTube here!
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