Many members of primary immunodeficiency community experience delays in and denial of treatment due to insufficient Medicare reimbursement. A report from the Office of the Inspector General showed Medicare reimbursement for IVIG is lower than the cost many providers pay for the product. As a result, a number of physicians and hospitals cannot afford to administer IVIG treatment to Medicare patients. This serious problem affects the entire community as an increasing number of private pay insurers are following Medicare's lead to determine reimbursement rates for IVIG.

To fix this problem, legislation was introduced March 25, 2009 into the United States Senate. Senators John Kerry (MA), Lamar Alexander (TN), Sheldon Whitehouse (RI), Ron Wyden (OR) and Sam Brownback (KS), introduced the Senate Bill S. 701, The Medicare Patient IVIG Access Act.  An identical House bill is expected to be introduced by the end of April 2009. This legislation, offers a solution to the current IVIG access crisis by establishing appropriate reimbursement in all sites of care for our patients. It also changes current policy regarding Medicare coverage of home infusion to include the cost of items and services related to the administration of IVIG in the home for primary immunodeficient patients.

IDF is working in coalition with other patient organizations and physician organizations including the American Academy of Allergy Asthma and Immunology (AAAAI) and the Clinical Immunology Society (CIS).  With the strong leadership of the policymakers who have signed onto support this legislation, IDF hopes to improve access to treatment and the quality of life of the countless patients who struggle with negative health outcomes, increased intervals of care, change in site of infusion, difficulty finding providers, and denial of treatment.

Click here to view the Medicare Patient IVIG Access Act page

What you can do to help

Go to the IDF Action Alert and contact your Senators to ask them to sign on as cosponsors to S. 701, The Medicare IVIG Patient Access Act.  With your help, we can move forward to restore proper access to this life- saving treatment for patients with PIDD.  Your legislators need to know why IVIG therapy is so important, so please utilize the text box to add the story of how IVIG treatment impacts your life, focusing on any access problems. 

Be the voice of the PIDD patient community!

Meet with your legislators at home

April 6-17 marks the Spring District Work Period.  During this time, your Senators and Representatives will be working at home in their district offices.  This presents the ideal opportunity to speak with your legislators about the importance of this legislation.  As a constituent,  it is important that you share your concerns with them.  IDF encourages you to visit your legislators during the district work period and ask your Senators to sign on to cosponsor S. 701, The Medicare Patient IVIG Access Act.  Ask your Representative to be an original cosponsor of the House companion bill, which will soon be introduced. 

To locate contact information for the local offices for your Senators and Representative, simply visit www.senate.gov and www.house.gov.