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Legislation Inspired by the "Boy in the Bubble" Passes Congress, Goes to President

WASHINGTON, Dec. 21, 2012 /PRNewswire-USNewswire/ -- The Immune Deficiency Foundation (IDF), the national patient organization dedicated to improving the lives of persons with primary immunodeficiency diseases (PIDD), is elated to announce that the Medicare IVIG Access Act (HR 1845) has passed in both the U.S. House of Representatives and Senate, allowing the legislation to be signed into law by the President.

In the U.S., there are approximately 250,000 people diagnosed with primary immunodeficiency disease, and thousands more go undetected. Primary immunodeficiency occurs in patients born with an immune system that either is absent or poorly functioning. There are more than 185 different types of PIDD, all caused by hereditary or genetic defects.

Current Medicare law contains a special provision for patients with primary immunodeficiency disease to receive home infusions of intravenous immunoglobulin (IVIG) under Medicare Part B. The Medicare IVIG Access Act, introduced by Representatives Kevin Brady (R-TX) and Doris Matsui (D-CA) in the House with companion legislation introduced by Senators John Kerry (D-MA) and Lamar Alexander (R-TN), responds to a quirk in the law whereby Medicare is only able to pay for the drug but not the costs associated with the infusion of IVIG in a patient at home, thus rendering the benefit useless and effectively denying IVIG home infusions. IDF believes that Medicare patients with PIDD should have the right to access all sites of care, including the right to be infused in the home setting when medically appropriate.

HR 1845 provides for 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 PIDD. Without treatment, everyday illnesses like the common cold can put these individuals at risk for infection and more serious complications. Fewer than 10,000 Medicare patients with PIDD receive immunoglobulin therapy on a regular basis to replace the antibodies that their bodies do not produce naturally, allowing most to live healthy lives. The Medicare IVIG Access Act was passed by a margin of 401-3 in the U.S. House of Representatives on Wednesday, December 19, 2012. HR 1845 then went to the Senate where it passed on Friday, December 21, 2012.

"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. "After so many years of working on this issue, finally Medicare beneficiaries with primary immunodeficiency diseases will receive appropriate treatment."

Congressman Brady, a member of House leadership who serves on the House Ways and Means Committee, has been an extraordinary leader in helping patients with PIDD by introducing four IVIG access bills over the past several years and raising the issues of the community throughout the legislative process. Mr. Brady pushed the legislation at the urging of Carole Ann Demaret, the mother of David Vetter, the young Shenandoah, Texas resident who passed away at age 12 after capturing the world's attention while living in a sterile environment at Texas Children's Hospital in Houston, becoming known around the world as the "boy in the bubble."

"I've been inspired by the courage of David Vetter and his mother, Carol Ann Demaret, who as a leader in the Immune Deficiency Foundation helped me understand how dangerous it is to send PIDD patients to hospitals and doctor's offices each month," said Congressman Brady, "For those most at risk, it's important that we continue to make healthcare more affordable and accessible. The bi-partisan support for this bill is a great example of what Congress can accomplish when the needs of patients are our first priority."

Congresswoman Matsui, a member of the House Energy and Commerce Committee, which is one of the key committees with jurisdiction over Medicare legislation, has been a leader on patient access to IVIG in the home for several years.

Senator Kerry holds a senior position in the Senate Finance Committee, the Senate Committee with jurisdiction over the Medicare IVIG Access Act. He has been the lead sponsor of Medicare IVIG Access legislation in the Senate for the past several years, and his leadership in the Senate has been unparalleled.   

Senator Alexander is a Member of the Senate Committee on Health, Education, Labor and Pensions and a Ranking Minority Member of the Senate Committee on Rules and Administration. He has been an advocate for the primary immunodeficiency community, introducing several bills to amend the Medicare IVIG Access issue.

For more information, visit To see the video of Congressman Brady's remarks on the House Floor, go to




SOURCE Immune Deficiency Foundation

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