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IDF Advocacy Day 2010 ~ What a Day! ~ UPDATED 5/17/10

Advocacy Day UPDATE on Co-Sponsors! ~ 5/17/10

Thanks to all of the amazing Advocacy Day volunteers who spoke with legislators and then followed up with emails requesting sponsorship of HR 2002 and S 701 ... *drum roll* ... SIX new co-sponsors have signed on to S 701/HR 2002 since Advocacy Day!

Here is a list of the sponsors who have signed on since Advocacy Day and the dates they became official sponsors.

HR 2002                                                                                  S 701

Rep Green, Gene [TX-29] - 5/4/2010                         Sen Cardin, Benjamin L. [MD] - 5/13/2010

Rep Upton, Fred [MI-6] - 5/4/2010

Rep Melancon, Charlie [LA-3] - 5/4/2010

Rep Moran, Jerry [KS-1] - 5/12/2010

Rep Schauer, Mark H. [MI-7] - 5/4/2010

We have also received word that Congressman Chris Van Hollen has agreed to be an original co-sponsor on Congresswoman Matsui’s bill!  This is wonderful news as Congressman Van Hollen is the Assistant to the Speaker and one of the highest ranking members of the House.  What a wonderful ally for IDF in the fight for access to IVIG treatment!

Original Post:

IDF Advocacy Day 2010 was a remarkable day in many ways! Not only did we have a beautiful sunny day on Thursday, April 29, we also had some amazing meetings. In fact, over 50 IDF volunteers, representing states and districts with Members of Congress on committees of jurisdiction over Medicare and health policy, joined with team leaders and IDF staff to climb Capitol Hill. Their mission was to ask their Members of Congress to solve the problems of access to IVIG for Medicare beneficiaries with primary immunodeficiency diseases.

Ninety meetings were held, and 28 of those were with Members of Congress. We know, as of this writing, that we gained at least 3 House co-sponsors and 1 Senate co-sponsor. And we are confident that more co-sponsors will be signing on based on the positive accounts of IDF volunteers after their meetings.

NEWS FLASH: As I am writing this, Ginnie Job writes to say that Congressman Moran in Kansas will join as a co-sponsor of HR 2002. The Congressman met with Ginnie and Tommie Cassen. Great job Ginnie and Tommie, and Great News for the PIDD community!! In fact, Representatives Gene Green (TX), Charlie Melancon (LA), Mark Schauer (MI) and Fred Upton (MI) have officially signed on to HR 2002. Thanks go to IDF volunteers Karissa Ybarra and Maggi Dodd (Texas), Kimberly Buck (LA), and Kathi Beiswenger, Julie Fetch and Becky Wang (MI).

IDF Advocacy Day 2010 had a strong start Wednesday evening with an inspirational talk by one our advocate champions, Congresswoman Doris Matsui (CA), who joined the group to receive the IDF Public Policy Award. In her remarks, the Congresswoman announced that she will be introducing a new bill based upon the language of an amendment filed by Senator Kerry in the Senate. The proposed Medicare IVIG demonstration project would allow Medicare beneficiaries with primary immunodeficiency diseases needing IVIG to receive that therapy in the home setting. The bill also allows for various studies of other government obstacles to care for all patients needing IVIG.

Another NEWS FLASH: We just got word that Representative Chris Van Hollen (MD), one of the highest ranking members of the House, has agreed to be an original co-sponsor with Congresswoman Matsui on the proposed Medicare IVIG demonstration project and studies. We also know that Congressmen Braley, Terry, Rush and Fudge will also be cosponsors.

As soon as Congresswoman Matsui’s bill is introduced and receives a bill number, the IDF Advocacy Center will have the bill and its description posted online—so stay tuned!

What was different this year was the openness and understanding of many of the Members of Congress and their staff with whom the IDF volunteers met. It appears that the work undertaken by IDF volunteers in past Advocacy Days is paying off. Fifty percent of the IDF volunteers were multi-year veterans of previous Advocacy Days. Many of the Congressional staff were reasonably well versed in the subject and knew the issues.

Of course, there were appointments where people were hearing the stories of patients with primary immunodeficiency diseases for the first time. And those stories were powerful. One story was from 7-year-old Taylor Allen from Idaho. He told Senator Risch what his life was like before his IVIG. And then he told the Senator, with his eyes lighting up, that after he got his medicine he could go outside and play like all of the other boys. You could see the effect on the Senator.

There are a lot more stories, and you can see some of the photos of the day by visiting IDF’s new FLICKR page.

I hope that those who attended IDF Advocacy Day will write their experiences on this Blog. How did your day go?

News Category:


Congresswoman Marcia Fudge (D-OH) will also be signing on to co-sponsor the bill, thanks to my dad's meeting with her staff at the IDF's Capital Hill day!

Senator Brown (R-MA) will also be signing on to the bill on the senate side!

Our Zebras ROCK! Thanks to all of you who worked so hard on this Carol

Our NY group shared our stories in 4 meetings on capitol hill. I think we brought to life the current IVIG access problems for Medicare beneficiaries and also raised awareness of PIDD. I'm working on getting a follow up appointment with a congressman from Staten Island. I'm so grateful to IDF for organizing advocacy day so well all had a chance to try to help. It is great to know IDF is always working on these issues and is always there for all of us zebras.