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ONCE AGAIN, A CALL TO ACTION!

YOUR PHONE CALL IS URGENTLY NEEDED IMMEDIATELY!!
DEADLINE = FRIDAY, SEPTEMBER 4th, 2009

The GBS/CIDP Foundation’s Advocacy activities continue to be fully engaged debating and challenging the existing and proposed changes made by Congress in the way that Medicare pays for IVIG. As a result, many doctors no longer provide the treatment making patient access to IVIG very difficult. Calling and/ or writing the offices of your local legislators can and will make a difference especially during the month of August when Congress takes it summer recess. It has been reported that there is an unprecedented number of special healthcare reform driven “town hall” meetings scheduled across this country during the recess period. Please be sure to check you local media sources to find out if one is scheduled in or near your hometown and attend if you are able.

The GBS/CIDP Foundation International, once again, needs your HELP to Fix IVIG Access and Reimbursement

Both the House of Representatives and the United States Senate are currently debating and will continue to debate, during these final days of July, health care reform legislation. It is imperative that the language in HR 2002 (House) and S.701 (Senate), the Medicare Patient IVIG Access Act be included in any health care reform legislation passed by this Congress. Your voice at this critical time continues to be important for both chambers of Congress to hear!!

In 2005, Congress changed the way Medicare pays for IVIG 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 therapy administered in the home. These serious problems affect the entire community as an increasing number of private pay insurers are following Medicare's lead.

To fix this problem, Representatives Israel (NY), Brady (TX) and, Schwartz (PA) introduced HR 2002, the Medicare Patient IVIG Access Act.

On the Senate side, to fix this problem, Senators Kerry (MA), Alexander (TN), Wyden (OR), Whitehouse (RI) and Brownback (KS) introduced the Medicare Patient IVIG Access Act, S 701.

Both of these bills are critical to patients who rely on IVIG therapy for their health, as they correct the current problems and respond to government reports that confirmed these problems.

Please contact your Senator's and/or Representative's office and urge them to include S.701 and HR 2002 in any health care reform legislation passed by this Congress. Call the US Capitol Switchboard at (202) 224-3121 and request to be transferred to your appropriate legislator’s office. Please also send a letter!

Where to find your U.S. Senator

Where to find your U.S. Representative

How to contact your Representative

TO REPEAT, YOUR PHONE CALL IS URGENTLY NEEDED IMMEDIATELY!!
DEADLINE = FRIDAY, SEPTEMBER 4th, 2009

As before, every call is needed. Please ask others who care about IVIG access to call as well.

HOW: To contact your senator's or representative's office, please call 1-202-224-3121. Say that you would like to be transferred to your senator's or representative's office and the 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/Representative. 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.

Calling a legislator’s office - begin………..

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

I’m calling to urge the senator /representative to support the inclusion of S.701 or HR 2002, the Medicare Patient IVIG Access Act, in the health care reform bill.

A. For Senators - refer to the Finance Committee’s bill S.701
B. For Representatives – refer to Energy and Commerce bill HR 2002


S.701 and HR 2002 are 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 (or Representative Steve Israel’s bill) fixes these problems and responds to government reports that confirmed these problems.

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

Your support is needed and greatly appreciated.

Thank you very much!

Sign off
_______________________________________________________________________________

(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.

Special Note:

In addition to contacting your local Senators and Representatives, please contact the sponsors and co-sponsors of S.701 and HR 2002 in order to express your thanks for their efforts on behalf of Americans afflicted with rare diseases who rely on IVIG infusions in order to sustain a quality of life which enables them to continue to function as productive citizens.

Sponsor (s ) and Co-sponsors of S. 701.
Sponsor
John F. Kerry (D) MA

Co-sponsors
Roland Burris IL
Evan Bayh (D) IN
Samuel Brownback (R) KS
Pat Roberts (R) KS
David Vitter (R) LA
Harry Reid (D) NV
Ron Wyden (D) OR
Jeff Merkley (D) OR
John Reed (D) RI
Sheldon Whitehouse (D) RI
Lamar Alexander (R)

Sponsor (s) and CO-Sponsors of HR. 2002
Sponsor
Steve Israel (D) NY

Co-sponsors
Raul M. Grijalva (D) AZ
John Boozman (R) AR
Mary Bono Mack (R) CA
Ginny Brown-Waite (R) FL
Robert Wexler (D) FL
C.W. Bill Young (R) FL
Dennis Moore (D) KS
John P. Sarbanes (D) MD
James P. McGovern (D) MA
Dale E. Kildee (D) MI
Lee Terry (R) NE
Shelley Berkley (D) NV
David E. Price (D) NC
Patrick J. Tiberi (R) OH
Jim Gerlach (R) PA
Joseph R. Pitts (R) PA
Allyson Y. Schwartz (D) PA
James R. Langevin (D) RI
Marsha Blackburn (R) TN
Kevin Brady (R) TX
Michael C. Burgess (R) TX

Thank you for your support.

Patricia A. Bryant
Executive Director

Edward S. Gdula
Director of Advocacy

GBS/CIDP Foundation International


Flu Vaccination Guidelines


Anyone who has a history of GBS and is in higher risk groups, including the elderly and those with other serious illnesses, should consider getting vaccinated. If a patient's GBS episode was associated with the influenza vaccine be aware that there may be a risk of a repeat episode. Patients who have recently had GBS within 3-6 months should be cautious when considering any vaccine. In all cases, the decision as to whether or not GBS patients should be vaccinated is always a joint decision between patient and physician.

For updated information on H1N1:
Centers for Disease Control
National Institutes of Health


Research Grant Application Information Brochure

This is a PDF file, you need Adobe Acrobat Reader to download it,if you need Adobe Acrobat please go here.
Letters of intent are due by November 1st, 2009.


GoodSearch cause banner
You have the POWER to generate funds that will help support the efforts of the GBS/CIDP Foundation on behalf of patients and their caregivers!
A search engine entitled GoodSearch will send the Foundation one cent for every search made with their search engine. We have checked and double checked GoodSearch and it is 100% legit.

GoodSearch.com is a Yahoo-powered search engine, with a unique social mission… every time you use GoodSearch.com, money is generated for our cause.

GoodSearch donates half its revenue, about a penny per search to charities. Now you might think what difference is a penny going to make? Well if 1,000 supporters searched just twice a day, we would receive an estimated $7,300 per year.

Remember GoodSearch is powered by Yahoo so you get the same proven, high-quality results.

To take advantage of this opportunity go to www.goodsearch.com and be sure to enter GBS/CIDP Foundation International as the charity you want to support. The more people who use this site, the more money we will receive, so please spread the word. Once you set GBS/CIDP Foundation as your default charity all you need to do is get the GoodSearch toolbar for your browser.

Thank you in advance for taking a second to set this up and help us in continuing to make a difference.


Shining Inspiration of the Month

August 2009
Here is an inspirational story from Ron Sullivan, Amarillo, TX:

Life was pretty normal until I was diagnosed with GBS in January or 2005. I fell walking in our house and couldn’t get up as I was too weak. My doctor was out of town but the doctor on call diagnosed me with GBS. He told me that I needed to get to ICU as I would need the help of a respirator. Within 48 hours I was on a respirator. I soon was placed on a ventilator for 3 months, as well as having a feeding tube and central line. I received two bags of IVIG to help slow it down. It went from the bottom of my feet to the top of my head, totally paralyzing me for 5 months. I spent 7 weeks in rehab, and 7 months out-patient therapy. The therapy was grueling but it paid off as I am walking, driving, and doing most everything that I used to do. This is with the help of a walking stick as I have drop foot in both feet which hurt each day with electrical shocks going through my toes and feet. I get tired easily but continue to praise God for His healing in my body as I am a walking miracle. As a Pastor I cannot tell you why some with GBS are walking and others like my friend who had GBS in September of 2004 are not, but my trust continues to remain in God. I would encourage those of you with GBS to keep a positive attitude and work hard in therapy. It pays off!! God Bless.

This is Ron's success story, “click here” to submit yours! Your story may be our next “Shining Inspiration of the Month” story.



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