Washington Update, January 2019

Washington Update

We Need YOU for the Alliance Hill Day!
By Johanna Gray and Ellen Riker

With dozens of new Members of Congress in Washington, as well as potential activity on a number of policy areas relevant to HTCs and the bleeding disorders community, such as access to insurance, 340B reform, drug pricing and funding for hemophilia programs, we think that our Alliance Washington Day is as critical as ever. We need as many HTCs as possible to come to DC to participate in the Members Meeting and then join us in educating Congressional offices about the importance of the 340B Program to HTCs and the bleeding disorders community.

We know that Alliance members often have questions about participating in Alliance activities in Washington. Please read on for an article from Issie Karan about lobbying vs. educating on Capitol Hill, which is a common concern. We will also be holding an Alliance webinar in February to discuss the logistics and substance of the Alliance Hill Day and answer any additional questions you may have. Please stay tuned for more information. Please feel free to contact us with any additional questions in the meantime. We look forward to seeing you in Washington in April!

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Telling Your Story Isn’t Always Lobbying
By Elizabeth “Issie” Karan, Feldesman Tucker Leifer Fidell LLP (FTLF)

The Alliance Washington Days are visits to educate members of Congress about hemophilia, Hemophilia Treatment Centers (HTCs), and other matters related to our operations. These meetings do not involve influencing legislation and, as such, are not lobbying. Rather, HTCs focus on educating members and staff that HTCs are participants in the 340B program, and that 340B program income plays a vital role in your ability to provide high-quality, comprehensive care to the bleeding disorders community. If there are HTCs that cannot afford to attend the member meeting in April, that will be held in conjunction with Capitol Hill Day, the Alliance will be accepting requests for financial assistance for travel expenses to come to Washington DC.

HTCs can and should engage in advocacy, but many HTCs have questions regarding whether and how they can advocate. First, you should know that “lobbying” has a specific definition according to the IRS. Lobbying means attempting to influence legislation, which the IRS defines to include action by Congress, any state legislature, any local council, or similar governing body, with respect to acts, bills, resolutions, or similar items (such as legislative confirmation of appointive office), or by the public in referendum, ballot initiative, constitutional amendment, or similar procedure. An organization will be regarded as attempting to influence legislation if it contacts, or urges the public to contact, members or employees of a legislative body for the purpose of proposing, supporting, or opposing legislation, or if the organization advocates the adoption or rejection of legislation.

However, not all advocacy is lobbying and even 501(c)(3) organizations may be involved in public policy without the activity being considered lobbying. For example, organizations may conduct educational meetings, prepare and distribute educational materials, or otherwise consider public policy issues in an educational manner without jeopardizing their tax-exempt status. For example, congressional visits that educate members and their staff about the role of HTCs in providing comprehensive care for the bleeding disorders community and discuss how 340B program income enables that care do not count as lobbying.

For HTCs within a larger institution, your parent organization likely has policies and procedures, and potentially staff, for advocacy and lobbying. We recommend familiarizing yourself with your organization’s approach and staff. Likely, any advocacy staff will enjoy learning about your engagement and commitment to your patients. However, the Hemophilia Alliance is always here to answer questions or provide additional detail for this staff.

Also in this Issue…

Notes from Joe
· New Year, New Faces, Same Commitment to Our Members

Alliance Board Update
· Featured Board Member: Dr. Stacy Croteau

Alliance Update
· Reminder: Recertification Deadline Approaching!
· Please Register for the Spring Meeting!

Team Alliance Contact Information

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
Jennifer Anders jennifer@hemoalliance.org 954-218-8509
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670

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