27: Good News for Alopecians!

My visit with Dr. Bordonne exceeded my expectations.  I had been on the road for five hours driving from VA to NH and hadn’t slept more than that the night before getting  ready for my absence and for the journey.  I pushed my way through NYC traffic, miraculously found my reserved parking spot with just enough time left to make my way past Radio City Music Hall to Dr. Bordonne’s office in downtown Manhattan.  The receptionist told me to complete paperwork, and within minutes I was ushered into an examining room.

Upon meeting me Dr. Bordonne, who saw me with my wig on, said “Oh, you have gorgeous hair!  Is it spotting?”  I took my wig off to reveal the situation, and within seconds she said, “Look at all those little baby hairs!  We’re going to help you grow your hair back.”

I had merely hoped to have a conversation with her about my options.  Not only did I learn we as alopecians have options, but there’s a mounting body of proof that these medications, though not yet approved by the FDA specifically for the treatment of alopecia, are being prescribed and being effective.  She mentioned that “hundreds” of her patients, some of whom fly in to see her because so few doctors are working with alopecians in this way, are living again with hair.

During my appointment she submitted a claim to my insurance company for Xeljanz, a Janus kinase inhibitor, and 10 days later I learned it was approved, not just in the mean time, but for the next two years!

I also learned that, should my insurance company not approve the medication there are ways to get it.  Go through the proper channels first, but if those fail (and Dr. Bordonne has colleagues who will work hard on your behalf to ensure that you get what you need), there’s an international drug company called Beacon Pharmaceuticals (https://beaconpharma.net/index.html).  After consulting with a doctor, go to “Quick Order” and look for “Tofacinix,” which is the same product as Xeljanz.  One friend has said that ordering 20 boxes will ensure the order doesn’t look suspicious to customs officials, and that the medication gets to you within the two weeks it’s promised.

In other news, Ayanna Pressley, D-MA, announced on 1/16/20 that she has alopecia and on 1/17/20 became NAAF’s latest co-sponsor for HR 3332!  Watch her moving video here (https://www.youtube.com/watch?v=dAR5yuD7s-s) and find other resources at www.naaf.org.

The future is bright!


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