IVIG Treatment for Victims of Peripheral Neuropathy

Dear Senators,

Please support and co-sponsor S 701, the Medicare Patient IVIG Access Act,
introduced by Senators, Kerry, Alexander, Wyden, Whitehouse and Brownback.
Also please urge the Senate Committee on Finance to include IVIG
provisions in health care reform. ). I also ask that the language of these
bills be included in any health care reform legislation that moves forward
in the Senate. For Medicare primary immunodeficient patients (PIDD),
passage of this bill can mean the difference between life and death.

In the United States, there are approximately 250,000 people diagnosed
with primary immunodeficiency diseases. Thousands more go undetected.
Primary immunodeficiency diseases (PIDD) occur in patients born with an
immune system that either is absent or poorly functioning. There are over
150 different types of PIDD, all caused by hereditary or genetic defects.
People with PIDD live their entire lives more susceptible to
infections—enduring recurrent health problems and often developing serious
and debilitating illnesses and even death. Currently, approximately 10,000
Medicare PIDD patients in the US who are antibody deficient receive
intravenous immunoglobulin (IVIG) therapy every 3-4 weeks to replace the
antibodies that their bodies do not produce naturally.

Medicare beneficiaries with primary immunodeficiency diseases (PIDD) first
experienced access and reimbursement issues in January 2005 as an
unintended consequence of the Medicare Modernization Act, when payment for
IVIG and other drugs changed.

Government-sponsored studies have demonstrated the difficulty Medicare
patients have in locating providers willing to provide IVIG infusions. In
April 2007, the U.S. Department of Health and Human Services (HHS) Office
of the Inspector General (OIG) reported that Medicare reimbursement for
IVIG was inadequate to cover the cost many providers must pay for the
product. In fact, the OIG found that 44 percent of hospitals and 41
percent of physicians were unable to purchase IVIG at the Medicare
reimbursement rate during the 3rd quarter of 2006. The previous quarter
had been even worse -- 77.2% of hospitals and 96.5% of physicians were
unable to purchase IVIG at the Medicare reimbursement rate.

The Medicare Patient IVIG Access Act, assists all Medicare patients in
need of IVIG therapy by providing the Secretary of Health and Human
Services authority to review data related to the cost of furnishing IVIG
and provides, if appropriate, an additional payment for up to 2 years. The
bill makes Medicare IVIG reimbursement more transparent and improves
accountability based on data. In addition, the bill asks the Medicare
Payment Advisory Commission (MedPAC) to review payment of IVIG and make
recommendations to Congress to improve access to IVIG for Medicare
beneficiaries.

Last Congress, the Assistant Secretary for Planning and Evaluation (ASPE)
reported that "home infusion services generally do not accept new primary
immune deficiency patients with only Medicare coverage
because healthcare
providers are not reimbursed for the infusion service." S. 701 also makes
"whole" the current law Part B home infusion benefit specific to Medicare
beneficiaries with a PIDD diagnosis. Specifically, the bill allows
coverage for items and services related to the administration of IVIG in
the home.

I hope you agree to cosponsor the S. 701 Medicare Patient IVIG Access Act
and urge the Senate Finance and HELP Committees to include the provisions
of S. 701 in health care reform legislation this year.

Sincerely,

Dennis Magnusen
Kathy Ostman-Magnusen

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PLEASE ADD YOURSELF TO THIS LETTER AND SEND IT TO "YOUR" SENATOR!

http://capwiz.com/immune/issues/alert/?alertid=13666696

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Peripheral Neuropathy HELP and SUPPORT:

http://www.neuropathy.org

The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.

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Remember the Children of War

Sometimes language is not needed... as is the case with the video above.

http://www.youtube.com/watch?v=9GQLAQFCZ_c&feature=related

Significant too is this video:

Speech by Martin Luther King, Jr. against the Vietnam War. Audio.



http://www.youtube.com/watch?v=b80Bsw0UG-U&feature=related

Below is Bob Dylan's "Master of War" to images of Vietnam.



http://www.youtube.com/watch?v=TFtdjFoeNic&feature=related

So long ago now.. I know, but oh! Still so close.

Peripheral Neuropathy HELP and SUPPORT:

http://www.neuropathy.org

The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.

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HELP Fix IVIG Access & Reimbursement

Vietnam War through O'Brien's The Things They Carried
At the bottom of this post is a comment by the creator of the YouTube above.

From LTCOL EUGENE B RICHARDSON, who is fighting the good fight for victims of Peripheral Neuropahty especially those needing IVIG Treatment.

Thank you Eugene!!

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PLEASE

SEE THE LEGISLATIVE ALERT BELOW ON NEEDED CHANGES FOR THOSE DEPENDENT UPON GAMMA GLOBULIN ACCESS IVIG FOR THEIR IMMUNE MEDIATED NEUROPATHY. MANY OF US DO NOT MAKE IT WITHOUT THIS CRITICAL THERAPY.

PLEASE HELP AND FOLLOW THE INSTRUCTIONS BELOW FOR CONTACTING YOUR LEGISLATORS SUPPORTING THESE CHANGES TO MEDICARE.

BLESSINGS

LTCOL EUGENE B RICHARDSON USA RETIRED
NEUROPATHY PATIENT WITH CIDP PLUS

Primary Immune Tribune
E-newsletter of the Immune Deficiency Foundation

July 2009

Contents
IDF Needs Your HELP to Fix IVIG Access and Reimbursement
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IDF Needs Your HELP to Fix IVIG Access and Reimbursement
Contact Your Senators and Representative!

After the 4th of July recess, Senate and House Committees will begin to consider the much talked about health care reform legislation, including changes to the Medicare program. And both the House of Representatives and the United States Senate will continue to debate health care reform during the month of July. It is imperative that the language in HR 2002 and S. 701, the Medicare Patient IVIG Access Act be included in any health care reform legislation passed by this Congress. Your voice at this critical time is important for both chambers of Congress to hear!!

The members of the Senate and the House need to know that people care about IVIG and they need to have IVIG access problems addressed in the health care reform bills.

Please act now and ask your families and friends to contact their Senators and Representative by participating in IDF's Action Alert. You make the difference!

Contact Your Representative

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, and Representatives Matsui (CA) and Tanner (TN) introduced HR 1765. 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 Representative's office and urge them to include HR 2002 and HR 1765 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 Representative's office. Please also CLICK HERE TO SEND THE ACTION ALERT LETTER to your Representative!


Contact Your Senators

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, Senators Kerry (MA), Alexander (TN), Wyden (OR), Whitehouse (RI) and Brownback (KS) introduced the Medicare Patient IVIG Access Act, S 701.

Please contact both of your Senators, and urge them to include S. 701 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 Senator's office. Please also CLICK HERE TO SEND THE ACTION ALERT LETTER to both of your Senators!


IDF E-newsletter
TELL A FRIEND
Primary Immune Tribune is sponsored by an educational grant from Talecris Biotherapeutics

CLICK HERE to add yourself to the letter:

http://capwiz.com/immune/issues/alert/?alertid=13666696


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Comment from profile of person who created the YouTube video above. I include it because the comments this post might host bare the same rules:


A video presentation by Weinlein and Dwyer that investigates Tim O'Brien's perspective of the Vietnam War through his work, The Things They Carried. Submitted for Mr. Mody's American Experience class at Burnt Hills HS. Please keep in mind that despite some of the content and parts the lyrics, this site (and all those connected to my account) is intended for use by primarily high school students. This means I will not approve comments with vulgarity or with questionable, derogatory, or inflammatory content. I do understand that this may come off as hypocritical as there is some vulgarity in the song itself.
You are free to comment on whether or not you like/agree with the video and/or the novel it is attempting to summarize. Criticism is fair game in my eyes, as long as it is insightful and in good taste. The old song was "This is War" by Smile Empty Soul, but WMG blocked it so it had to be changed to "Fade Away" by Seether from through YouTube's AudioSwap. It doesn't have anywhere near the same effect.

http://www.youtube.com/watch?v=dP4GaprkAJg&feature=fvw

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Peripheral Neuropathy HELP and SUPPORT:

http://www.neuropathy.org

The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.

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