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Advocacy Day 2012: Another Step Forward

You know what I like best about IDF’s Advocacy Day?  It’s being around patients with their spirit, enthusiasm and dedication and readiness to “tackle the world”. Our patients ground me.  And I love watching the power their stories have with their elected officials and their staff.  Those few moments with their elected officials are precious and have a mighty effect on their legislators.  I can go on the Hill and have terrific meetings with Members and their staff.  But, it just isn’t as effective as a volunteer patient telling his/her story.

IDF’s 2012 Advocacy Day took place this past March 22nd. Nearly 50 patient volunteers attended 90 meetings to spread the word about and make the case for the passage of HR 1845/S 960, the Medicare IVIG Access Act.  The bill begins the process of fixing the home infusion benefit under Medicare Part B by allowing Medicare to pay for the equipment and nursing services necessary to have home infusions.

At the dinner and training session the night before at the hotel, IDF President Marcia Boyle welcomed everyone and Julie Birkofer, Vice President, North America for the Plasma Protein Therapeutics Association (PPTA) spoke to the group about how important their presence on Capitol Hill is.  After dinner, the work began for the IDF advocates.  I provided an overview of all of the public policy issues with which IDF is engaged including the implementation of the Affordable Care Act (the health care reform law) as well as our continuing efforts to oppose health insurance company policies that limit access to care for patients with primary immunodeficiency diseases.  After a brief history of IDF’s problems and activities related to the Medicare IVIG access issue, Sue Ramthun and Tim Yehl of Hart Health Strategies, IDF’s consultants, explained the proposed Medicare IVIG Access legislation, the principal subject for the next day.  Sue and Tim went on to provide everyone the “dos and don’ts” of talking to members of Congress and their staff people.

Congressman Chris Van Hollen with his constituent Catherine McNish (left) and IDF President& Founder Marcia Boyle (right)

Bright and early the next day, the group gathered for a light breakfast before their adventures to Capitol Hill.  We were delighted to have Congressman Kevin Brady (R,TX), Congressman Chris Van Hollen (D,MD) and a representative from Congresswoman Matsui’s office speak to the volunteers as well as receive IDF’s Public Policy Awards for their stalwart efforts to pass our legislation (HR 1845/S 960).

Congressman Kevin Brady with Texas volunteers Gina Cohen (center) and Yvette Shorten (right)








With the cherry blossoms and tulips in full bloom (albeit several weeks early this year), our volunteers made their way up Capitol Hill from the hotel for the annual photograph of all who were participating.

The day’s meetings went very well with promises from several Congressional offices to co-sponsor HR 1845/ S 960.  Our IDF volunteer advocates were terrific.  Their stories certainly had a major effect on the people they met.  In fact, Senator Susan Collins (R, ME), signed on as a co-sponsor two days later.

IDF volunteer from Pennsylvania Diana Grecekwith her Congressman, Rep. Tim Murphy

IDF volunteer Claudia Pope with Rep. Heath Shuler

The Georgia and North Carolina group with Congresswoman Doris Matsui, lead Democratic sponsor of the House bill

This is my 4th Advocacy Day since joining IDF’s staff in 2009.  There has been so much progress in getting our story out.  It was amazing the number of Congressional staff people were familiar with our bills and the basic problem we are trying to solve.

The prospects for passage of HR 1845/S960 are brighter this year as the Congressional Budget Office (CBO) is in the process of analyzing the fiscal impact (better known as a “score”) on the budget and Medicare program for the Congress.  Getting a score from CBO is a mandatory step toward passage of any legislation pertaining to Medicare.  It is great to know that our bill is now on the radar of both the House and Senate leadership of Congress.  Hopefully this will be the year for passage!!!

- Larry, VP Public Policy











To learn more about the Medicare IVIG Access Act and to send an Action Alert letter in support of this important legislation, please visit the IDF Advocacy Center





To get a feel of what went on at Advocacy Day, I think that our dear volunteer Stefani Bush from Massachusetts captured the spirit of the day.  She posted her thoughts on her recent blog, .


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