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Shenandoah's "David, the boy in the bubble", Inspires U.S. House Passage of Legislation Advancing Immune Deficiency Treatment

Press Release

Location: Washington, DC

By a vote of 401 to 3, the U.S. House of Representatives voted today to pass legislation sponsored by U.S. Congressman Kevin Brady of Texas to examine safer methods to administer blood plasma transfusions to boost the immune systems of Medicare patients with primary immunodeficiency disease (PID). Brady pushed the legislation at the urging of Carole Ann Demeret, the mother of David Vetter, the young Shenandoah 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.

"For the approximately 250,000 patients with compromised immune systems, there is no place more dangerous than a hospital for treatment. With this legislation we intend to prove that patients and Medicare both benefit from administering IVIG in the safety of their home," said Brady. Today, as a result of previous law, intravenous immune globulin (IVIG) therapy is not available by home administration to Medicare patients with PID.

"I've been inspired by the courage of David Vetter and his mother, Carol Ann Demeret, who as a leader in the national Immune Deficiency Foundation helped me understand how dangerous it is to send PID patients to hospitals and doctor's offices each month. I'm proud of Carol's dedication and her efforts on behalf of patients with immunodeficiency around the nation."

Marcia Boyle, IDF President and founder, added, "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. Our champion, Congressman Brady, has helped HR 1845 pass in the House and now we must look to the Senate to finally achieve appropriate treatment for these patients."

This legislation will allow Medicare to offer limited expanded coverage of home-administered IVIG therapy, while studying the costs and benefits.

"Regular access to IVIG therapy means a better quality of life and potentially the difference between life and death for these patients," continued 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."

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