Alliance Update, March 2019

Alliance Update

Reminder: Please Register for the Spring Meeting!
By Sean Singh

Our Spring meeting will be held in Washington in conjunction with our Hill Day this year. We realize that combining the meeting and Capitol Hill Day visits is very convenient for our members who have limited time to travel – it allows you to participate and learn at the member meeting and then also educate policymakers about HTCs and our community.

For the Hill Day, we hope to have as many HTCs participate as possible so that we can educate as many Members of Congress and their staffs about HTCs as possible! Also, please remember that the Alliance is also encouraging HTCs to invite one of your patients to join us in Washington. If you would like to invite a patient, please contact me.

To register your attendance and make your hotel reservation, please click here.

Here is the general schedule for the event:

Sunday April 28th

Hemophilia Alliance Board Meeting

Networking Reception – This session held in the evening gives you the opportunity to network with peers and discuss issues that are pertinent to you and your centers. It leads to topical conversation and a dialogue that benefits our community.

Monday April 29th

General Meeting – The daylong session will be filled with updates from the Alliance on all of the challenges, opportunities and threats facing HTCs and strategies to address them. We expect that this session will be lively and interactive.

Networking Dinner and Hill Day prep – This session will provide all of the details and training you need to meet with Members of Congress and their staff member to educate them about your centers, patients and the community. Telling your story has never been easier with the guidance of our Advocacy team led by Ellen Riker and Johanna Gray.

Tuesday April 30th

Hill Day – Following a breakfast briefing, we will head in teams to Capitol Hill to visit members of the House of Representatives and Senate and their staff. We will schedule your appointments and provide you with information that will make the day’s visits easy and enjoyable. Meetings will end in the late afternoon. Return trips from Washington DC should be planned for Tuesday evening or Wednesday.

Also in this Issue…

Notes from Joe
· HTCs and Chapters: Natural Partners
· Hemophilia Alliance Foundation Update

Washington Update
· HTCs Are Not Subject to Hospitals’ GPO Exclusion: Apexus FAQ 2653
· Alliance Submits Response to Senate HELP Committee Request for Policy Ideas

Payer Update
· The Covered Outpatient Drug Rule (CODR)…Two Years Later

Notes from the Community
· Promoting XXcellence in Women’s Health: Optimal Management of Women and Girls with Bleeding Disorders and Blood Disorders


Team Alliance Contact Information

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

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 727-388-7326
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Elizabeth Karan ekaran@feldsmantucker.com 612-202-3240
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA george@gloetal.com 573-230-7075
Ellen Riker eriker@artemispolicygroup.com 202-257-6670
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org 727-688-2568
Karen Bowe karen@hemoalliance.org 717-571-0266
Joel Bellucci webmaster@hemoalliance.org 727-504-0491