Salazar’s bipartisan bill provides patient access to home infusions for rare genetic disease

U.S. Rep. María Elvira Salazar (R-FL) has offered bipartisan legislation that would allow Alpha-1 rare disease patients to continue receiving Medicare-covered, in-home infusion treatment established during the pandemic. 

Rep. Salazar sponsored the John W. Walsh Alpha-1 Home Infusion Act of 2023, H.R. 4438, alongside eight original cosponsors, including lead original cosponsor U.S. Rep. Chellie Pingree (D-ME), to amend the Social Security Act to provide for coverage and payment of Alpha-1 Antitrypsin Deficiency Disorder treatment under Medicare part B, according to the bill’s text. 

“Access to home-based care reduces healthcare costs while giving people dignity and peace of mind as they receive quality care in their home,” said Rep. Salazar on June 30. “I am proud to lead this legislation, which would make life easier for Medicare patients struggling with this rare genetic disease.”

Alpha-1, also known as genetic COPD, is a hereditary condition. Without treatment by federally approved augmentation therapies, Alpha-1 could result in lung disease in adults and/or liver disease in infants, children, and adults. Therapy slows but does not reverse the progression of the lung destruction associated with this disorder, according to a bill summary provided by Rep. Salazar’s staff.

“Despite being safe and effective, many immunocompromised Alpha-1 patients couldn’t access important therapies during the pandemic because of barriers to home infusion under Medicare,” said Rep. Pingree. “By making this small but impactful change in Medicare policy, our bipartisan John W. Walsh Alpha-1 Home Infusion Act will ensure home infusions are a permanent benefit for Medicare beneficiaries who suffer from this rare disorder.” 

The bill is supported by the Alpha-1 Foundation and has been referred for consideration to both the U.S. House Energy and Commerce Committee and the U.S. House Ways and Means Committee.