I’m Going to the FDA’s Alopecia Areata Meeting in DC!

I am so excited. I’m going to the U.S. Food and Drug Administration (FDA) PFDD meeting in September with the National Alopecia Areata Foundation!

This FDA meeting gives us with AA a chance to inform the people who approve drugs and medical devices that we need more research into treatments for alopecia areata. It’s over two days, from September 10-11, and takes place at the FDA headquarters outside Washington, D.C. – technically in Maryland.

The trip will be interesting, because not only is it a big deal to get an audience with the FDA, but I’ll be meeting other people that have the same condition. For a few days, I won’t be the only person with no hair!

But I should back up a bit and explain the acronym soup of the AA PFDD with the FDA.

What is an FDA PFDD Meeting?

During the Obama Administration, Congress and the White House worked together to communicate a strong message to the FDA. The message was, start including in your processes the people who actually take the drugs and use the medical devices. They felt regulators were so focused on studies and numbers and reports, the patient’s need for the medication and the impact of diseases on patients without adequate treatments weren’t thought about. Oh, and legislators spoke in a language understood by all: if you don’t, we’re withholding a large chunk of your funding.

And that’s how PFDD’s were born! It’s short for a Patient-Focused Drug Development Meeting.

The cool thing about this is that only a very select number of diseases and conditions make it to the FDA’s schedule of these new meetings. Alopecia areata was picked because people are sharing their stories about the real impact AA has on them.

The purpose is to gather patients’ perspectives and to discuss views on treatment approaches for better managing alopecia areata. Like, did you know there are no FDA-approved treatments for alopecia areata?!

It will be my job to help tell government types that alopecia treatments are not cosmetic. Having no hair can’t kill you by itself, however, AA patients have a proven higher risk of depression and anxiety, in addition to a bunch of other physical and psychological disorders. It really affects so much of you.

Preparing for the Big Weekend

To get ready for what’s going to happen in Maryland, there’s a webinar tomorrow that will explain everything. I’ll update you with more details when it’s over.

 

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