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Hemo Alliance Newsletters

Washington Update, February 2022

Washington Update

Join us for the Alliance Hill Day!
by Johanna Gray, Advocacy Consultant

We are excited to be planning for the 2022 Hemophilia Alliance Virtual Hill Day in April, 2022! All Alliance members and their patients are invited to join us to advocate for the bleeding disorders community from home. Here’s what you need to know:

What: We will schedule phone/video calls on your behalf with Congressional offices. The benefit is that it will be easy for everyone to participate from home or work, without having to come to DC!

When: Tuesday, April 5, 2022. We will notify you as meetings are confirmed but ask that you do your best to block the whole day from 9-5 eastern (though don’t worry West Coasters, we’ll make sure that no meetings start that early!). We will notify you when your meetings are confirmed so you can free up any other times besides your scheduled calls.

Why: We will be educating Senators and Representatives and their staff members about bleeding disorders, HTCs, and the importance of the 340B Program to our community. We will also be discussing two affordability and access issues affecting the community – copay accumulator adjustors (we’ll be lobbying for the HELP Copays Act) and alternative funding (we’ll be educating offices about this emerging issue).

Note: This means that we will be lobbying in our meetings. That means that HTC staff members cannot do these meetings on regular work time – you would be required to take vacation or charge the time to a different cost center. Again, your time spent on calls with offices will be only a few hours that day. If you have any questions or concerns about your ability to lobby, please contact me and we can discuss!

Who: We hope that many Alliance members will participate! We encourage you to also recruit a patient from your center to join you.

Next Steps: Please click here to register to participate. The deadline for registration is March 7, 2022. The Alliance will start scheduling meetings on your behalf. We will be holding a training webinar for all participants a few weeks before the event to share logistical and substantive details that you will need to know to make your meetings successful.

Schedule issues? If you can’t participate in meetings on April 5th and are willing to send emails to your Congressional offices, please register via that option on the form. We can provide you with contact info and a sample email to use.

Any questions? Please contact me at jgray@artemispolicygroup.com or 703-304-8111 with any questions.

Also in this Issue…

Notes from Joe
· Harmony in Hemophilia

Legal Update
· Grants Management that Makes Sense

Payer Update
· Request for Coverage of Desmopressin Acetate Nasal Spray (DDAVP)

Alliance Update
· 1st Annual Hemophilia Alliance Pharmacist CE Conference

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

NameEmailPhone
Jeff Blakejeff@hemoalliance.org317-657-5913
Jennifer Borrillo, MSW, LCSW, MBAborrillo@hemoalliance.org504-376-5282
Jeff Amondamond@hemoalliance.org608-206-3132
Jennifer Andersjennifer@hemoalliance.org954-218-8509
Angela Blue, MBAangela@hemoalliance.org651-308-3902
Karen Bowe-Hausekaren@hemoalliance.org717-571-0266
Zack Duffyzack@hemoalliance.org503-804-2581
Michael B. GlombMGlomb@ftlf.com202-466-8960
Johanna Gray, MPAjgray@artemispolicygroup.com703-304-8111
Kiet Huynhkiet@hemoalliance.org917-362-1382
Elizabeth Karanelizabeth@karanlegalgroup.com612-202-3240
Kollet Koulianos, MBAkollet@hemoalliance.org309-397-8431
Roland P. Lamy, Jr.roland@hemoalliance.org603-491-0853
Dr. George L. Oestreich, Pharm.D., MPAgeorge@gloetal.com573-230-7075
Theresa Parkertheresa@hemoalliance.org727-688-2568
Mark Plencnermark@hemoalliance.org701-318-2910
Ellen Rikereriker@artemispolicygroup.com202-257-6670