Primary Immune Tribune   Primary Immune Tribune
  E-newsletter of the Immune Deficiency Foundation

November 2006 VOLUME 1 ISSUE 2  

IDF Survey Helps Persuade CMS
IDF Center of Excellence
IDF on Capitol Hill
Online Shopping for Fun and IDF
IDF Family Retreat - November 17-19
Since You Asked...
IDF Events Calendar
IDF Survey Helps Persuade CMS
CMS Stops Reductions for IVIG Medicare Payments

IDF Survey Helps Persuade CMS to Temporarily Stop Reductions for IVIG Medicare Payments
The Immune Deficiency Foundation (IDF) patient survey helped persuade the Centers for Medicare and Medicaid Services (CMS) to issue final rules that grant a critical reprieve for patients with primary immune deficiency diseases (PIDD).  On November 1, CMS issued a ruling that will continue the temporary “preadministration-related services” add-on for IVIG in 2007 for both physician services and hospital outpatient department (OPD) reimbursements for IVIG. CMS had established this additional payment for IVIG in 2006 to compensate physicians and hospital OPDs for extra resources needed for locating and obtaining appropriate IVIG products.  It was also used for scheduling patient infusions during a period “where there may be temporary instability.”  CMS also withdrew another separate proposal to reduce Medicare’s payment for IVIG in the hospital OPD setting. 
In its final rules, CMS cited the IDF patient survey as offering evidence of the hardships that many PIDD patients have had to deal with because of reductions in Medicare payments for IVIG.  Some of the findings from the survey include patients reporting that they have had to change the site of their infusions, postpone infusions, increase intervals between infusions, and reduce dosage of IVIG as the result of changes in Medicare reimbursement methodology for IVIG. 
IDF wishes to thank the over one thousand PIDD patients who took the time to respond to our survey this year.  We believe that the survey’s results made the difference in providing hard, empirical data that CMS needed to withdraw its proposed reductions.
IDF also acknowledges the hundreds of patients and family members from the PIDD community who have contacted their Members of Congress about this critical issue through our online advocacy program, Action Alert.  These personal contacts and our patient survey demonstrate that an individual’s input can make a difference on policymaking in Washington.
While this reprieve from reductions is vital to patients with PIDD, IDF does not believe that it goes far enough to bring stability for Medicare beneficiaries.  We are taking the same patient survey findings to Congressional Committees and Members of Congress to show them the kinds of dislocations Medicare IVIG users are experiencing as a result of changes in reimbursement policies enacted in 2003.  We believe that a permanent adjustment needs to be made in the way Medicare pays for IVIG to assure access to care and choice of provider. Congress may need to take legislative action to make sure this happens.
We celebrate this temporary reprieve for the PIDD community, but recognize that it is not a time to become complacent. IDF urges all of you to again visit our Web site and make your voice heard.  Log on to IDF Action Alert at to contact your Members of Congress and let them know how important access to IVIG is to your health.

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