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Alpha-1 Foundation expresses support for bill exempting orphan drugs from new fee
The Alpha-1 Foundation has written a letter of support for the Senate Bill S-1423 “Preserving Access to Orphan Drugs Act of 2011” which addresses the fee on orphan drugs in the Patient Protection and Affordable Care Act (PPACA). This bill will clarify that orphan drugs used solely for orphan diseases such as Alpha-1 Antitrypsin Deficiency (Alpha-1) will be exempt from the PPACA fee.
“As the advocates for individuals with the rare lung and liver disease known as Alpha-1 Antitrypsin Deficiency (Alpha-1).” the letter reads, “we want to ensure that the voice of patients is heard in critical discussions so that unintended consequences do not befall those with special needs. Alpha-1 is the leading identified genetic risk factor for chronic obstructive pulmonary disease (COPD) and is often misdiagnosed until individuals in the prime of their lives suffer some type of health exacerbation that may leave them in need of special therapies and services.”
The letter was sent to U.S. Sens. Patrick J. Toomey, Robert P. Casey, Jr., and Ron Wyden, sponsors of S-1423.
