We need you to urge your senator to support the inclusion of S.701, the Medicare Patient IVIG Access Act, in the Finance Committee’s health care reform bill.

WHO: The following Senators are Members of the Senate Finance Committee. Because you live in the state of one of these members – your senator needs to hear from you (and any family or friends from your state who can call) no later than Friday, June 19th.

AZ – Senator Jon Kyl
AR – Senator Blanche Lincoln
DE – Senator Tom Carper
ID – Senator Mike Crapo
IA – Senator Chuck Grassley
FL – Senator Bill Nelson
KS – Senator Pat Roberts
KY – Senator Jim Bunning
ME – Senator Olympia Snowe
MI – Senator Debbie Stabenow
MT – Senator Max Baucus (Chairman of Senate Finance Committee)
NV – Senator John Ensign
NJ – Senator Bob Menendez
NM – Senator Jeff Bingaman
NY – Senator Chuck Schumer
ND – Senator Kent Conrad
OR – Senator Ron Wyden
TX – Senator John Cornyn
UT – Senator Orrin Hatch
WA – Senator Maria Cantwell
WV – Senator Jay Rockefeller
WY – Senator Mike Enzi

WHY: The Senate Finance Committee will consider health reform legislation, including changes to the Medicare program the week of June 22nd. They need to know that people from their state care about IVIG and need to have IVIG access problems addressed in this bill. Numbers of calls matter! Each office logs in the calls they receive and provide reports to the senator regarding the latest issues of interest for constituents back home. It would be great to have IVIG show up on the list the week before the committee considers health reform. Your action is very important! One call matters and adds up. The GBS/CIDP Foundation International is joining other patient groups asking patients and/or caregivers in the states represented by senators of this committee to call. Every call is needed. Please ask others who care about IVIG access to call as well.

HOW: To contact your senator’s office, please call 1-202-224-3121. Say that you would like to be transferred to your senator’s office (names are listed above) and the senate operator will transfer you.

A receptionist or intern will answer the phone. They will not be well informed on the IVIG issue and likely won’t know what IVIG is. You may follow the script below to leave a message for the Senator. If you wish, after leaving the message, you may then ask to be transferred to the health legislative assistant to further discuss the issue or tell your story.

WHAT:
Hello, my name is ________________________ and I’m from ______(city)______.

I’m calling to urge the senator to support the inclusion of S. 701, the Medicare Patient IVIG Access Act, in the Finance Committee’s health care reform bill.

S. 701 is critical to patients who rely on IVIG therapy for their health. Congress changed the way Medicare pays for IVIG in 2005 and as a result many doctors no longer provide the treatment – making it harder for patients to get IVIG. Also, current law does not pay for the nursing and IV items needed for IVIG in the home. Senator Kerry’s bill fixes these problems and responds to government reports that confirmed these problems.

Please let the senator know it is important to act now and make sure patients have access to IVIG.

Your support is needed and greatly appreciated.

(The receptionist may ask for your address to log the call in and perhaps send a letter in response to your message.) If you need assistance in writing the letter, please contact the Foundation.

Again, thank you very much and good luck!

Edward S. Gdula
Director of Advocacy
GBS/CIDP Foundation International

Never take anything for granted, not even walking! My story starts in September 2006. I had just had my first son and two weeks later, I was having excoriating headaches with lower back pain. I was on maternity leave from the AF, spending time with my newborn but all I could do was concentrate on the incredible pain I was having. Not long after the pain, the weakness started. I couldn’t even carry my baby up the stairs. Each step felt harder every day, trying to stand up from the couch while holding him was a challenge. I went to the doctor and no one could figure out what was wrong except on wonderful doctor who suggested GBS. Now I was overseas at the time so no support from family besides my husband and not even a month old baby. I was put in the Italian hospital for two week with numerous tests and constantly in pain that had me in tears all day and night. No pain meds! Every day, I was getting weaker, from only having to hold on to handrails to having to have someone walk me to a walker. They treated and released me. Only two days later, I was back in pain and getting sick so I went to my doc on base which they sent me to Germany. The care there was wonderful. I was there another two weeks but my new established family was not. But I was kept on morphine which greatly helped the pain and doing physical therapy. So for the first 8 months of my child’s life, I could do nothing but lay with him in bed especially since that’s where I was all the time. So now, I am fully recovered still in the military and doing everything I could do before.

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