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Immune Deficiency Foundation Advocates for Legislation to Improve Medicare Patient Access to Immunoglobulin Products


Larry LaMotte
Phone: 443-632-2552
Cell: 410-458-8336

(WASHINGTON, D.C., March 29, 2012) – Volunteers for the Immune Deficiency Foundation (IDF) flocked to Capitol Hill on Thursday, March 22 to advocate for the Medicare IVIG Access Act, H.R. 1845/S. 960 as part of the IDF 2012 Advocacy Day.

Forty-seven patients and family members living with primary immunodeficiency diseases from 30 states across the country participated. The advocates met with their Senators and Representatives, holding a total of 91 meetings with Congressional offices, to urge sponsorship and support for the legislation. Champions of the Medicare IVIG Access Act, Congressman Kevin Brady and Congressman Chris Van Hollen accepted the IDF Distinguished Public Policy Award and spoke to the group about the importance of this legislation.

Introduced by Representatives Kevin Brady (R-TX) and Doris Matsui (D-CA) and Senators John Kerry (D-MA) and Lamar Alexander (R-TN) and with strong bipartisan support, the bills provide for a study of issues relating to access to intravenous immunoglobulin (IVIG) for Medicare beneficiaries in all care settings and a demonstration project to examine the benefits of providing coverage and payment for items and services necessary to administer IVIG in the home for patients with primary immunodeficiency diseases (PIDD). Because of medical advances like IVIG, many individuals affected by PIDD—which are disorders in which part of the body’s immune system is missing or does not function properly caused by intrinsic or genetic defects—can live healthy, productive lives. Without treatment, everyday illnesses like the common cold can put them at risk for infection and more serious complications. Current law pays for the IVIG product but prohibits Medicare from reimbursing for the nursing services and equipment necessary to infuse a patient in the home setting.

“We feel very strongly that this legislation is essential to ensure the ability of patients to access their lifesaving treatments in the most appropriate site of care,” said Marcia Boyle, IDF President and Founder. “The positive responses we heard in our meetings and the enthusiasm of our Congressional champions encourages me that this is the year we will be successful in achieving this goal.”
Although current Medicare law provides a home infusion benefit specific to patients with a primary immunodeficiency diagnosis, coverage for the related “items and services” are excluded. As a result, a 2007 Assistant Secretary for Planning and Evaluation (ASPE) report found that home infusion providers generally do not take new patients with only Medicare coverage – leaving Medicare patients with prohibitive out-of-pocket costs or no access to home infusion. The Medicare IVIG Access Act seeks to address the absence of coverage for the required items and services for IVIG home infusion for patients with PIDD.

About the Immune Deficiency Foundation
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. For more information, contact IDF at 800-296-4433 or

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