Washington Update, March 2021


Washington Update

Please Register for the Alliance Virtual Hill Day!
by Johanna Gray

We are excited to be planning the 2021 virtual Alliance Hill Day! 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: May 5, 2021. 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: Since there are so many new Members of Congress and staffers, 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 NOT be lobbying this year, but rather educating policymakers about our issues in anticipation of potential legislation relating to 340B this Congress.

Note: Since we are educating and not lobbying, that means that HTC staff members can do these meetings on regular work time. You aren’t 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.

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 April 8, 2021. 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 May 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 Johanna Gray at jgray@artemispolicygroup.com or 202-800-7071 with any questions.


Also in this Issue…

Notes from Joe
· Imagine That

Legal Update
· Getting Out Your Message without Getting in Hot Water: HTC Marketing and the Grant Rules

Payer Update

Alliance Update
· Marketing and Operations Update
· Meeting Schedule for 2021

Notes from the Community
· World Federation of Hemophilia: Global Reach. Local Impact.