8. Advocacy

Through the National Alopecia Areata Foundation (NAAF), which I discovered in 2017 (not 2014 as I Freudian-slipped in my video), I’ve volunteered as a Legislative Liaison, and have advocated for the passage of legislation targeted at enhanced insurance coverage for alopecians.  Specifically, there’s a bill going through the House called HR 2925, which would mandate that wigs be covered as prosthetics under Medicare.  The logic behind this bill is that changes to Medicare often pave the way to changes with other insurance carriers.  I’ve also advocated for increased research funding through the National Institutes of Health (NIH) in support of a cure or effective, easy treatment for alopecia.

As you may be able to appreciate, having a rare, physically altering disease for which there is no cure would benefit from, at the very least, a means of covering it up, not because we’re ashamed of what we look like without hair, but because having hair keeps us warm and protects our sensitive noggins from damage.  Functionally speaking, that’s important.  Emotionally speaking, losing and living without hair is life-changing, and causes others, regardless of how saintly they may be, to look at and treat us differently, if only for a split second.  I don’t know about you, but I’ve found those split seconds to be the longest.

Because we’re usually the only person in a room who knows what alopecia is or how it affects people with the disease, we’re in a great position to inform those who are in positions to effect change.  I’m not one to toot my own horn, but talking with elected officials’ aides, who I was initially super intimidated by, has made me feel like ‘You know what, Chris?  You got this!’  Since you’re the expert on you, you can’t possibly screw up.  With that in mind, consider lending your voice to supporting this bill, and discovering alopecia’s kryptonite.

To see the youtube video associated with this post, click here.


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