IDF Survey Helps Persuade CMS to Temporarily Stop Reductions for IVIG Medicare Payments

TOWSON, MD 21204
FAX 410.321.9165
November 1, 2006
IDF Survey Helps Persuade CMS to Temporarily Stop Reductions for
IVIG Medicare Payments

TOWSON, MDThe 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

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
policy making 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
to contact your Members of Congress and let them know how important access to IVIG is
to your health.
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