Patients with Immune Issues Deserve a Normal Life

I introduced legislation this week to help Americans living with immunodeficiency diseases receive affordable, effective treatments – known as Intravenous Immunoglobulin (IVIG) treatments. Specifically, the bill (H.R. 3172) extends a successful Medicare pilot program that allows patients with weakened immune systems to receive care in their homes.

For patients with weakened immune systems – especially young children – it’s a daily fight to survive. My bill helps ensure these fragile patients get the care they need from the comfort and safety of their own home. “Our Congressman is protecting some of our most vulnerable patients from exposure to disease,” said Carol Ann Demaret, Brady’s constituent whose son, David, suffered from Severe Combined Immunodeficiency Disease (SCID). “Patients with Primary Immunodeficiency Diseases have a champion in Congressman Kevin Brady who led the successful effort to get safe, effective home IVIG therapies added to Medicare.”

David couldn’t ask for a better legacy or advocate. Carol Ann has continued to fight for a cure and treatments that help immune challenged patients live better lives. She has been with us every step of the way on this effort.

BACKGROUND:

The Medicare IVIG Demonstration Project was established to study the impact of paying for intravenous immunoglobulin (IVIG) home infusions. The goal of the Medicare IVIG Demonstration Project is to prove the cost effectiveness of allowing Medicare patients with Primary Immunodeficiency Disease (PI) access to home infusions of IVIG. While Medicare Part B includes a special provision for patients with PI to receive home infusions of IVIG, the Medicare law included only reimbursement for the immunoglobulin (Ig) product, not allowing for Medicare payment for nursing services or other items necessary for infusions in the home setting. Medicare beneficiaries are effectively denied IVIG in the home setting, forcing patients with PI to seek care in other settings even when their most appropriate site of care might be the home. This pilot allows reimbursement for all infusion costs, and could lead to a permanent fix for patients with PI.

David Vetter, affectionately known as the “Boy in the Bubble”, was born with Severe Combined Immune Deficiency (SCID), one of the most severe types of primary immunodeficiency disease. At the time of his birth in 1971, a bone marrow transplant from an exact matched donor was the only cure for SCID, but there was no match available in David’s family. For 12 years, David captured the world’s attention as he lived in protected environments to maintain relatively germ-free surroundings at Texas Children’s Hospital. He passed away in 1984 having always lived in a sterile environment.

National Home Infusion Association (NHIA) supports this legislation.

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