News
Protection for rare diseases included in Senate bill on "comparative effectiveness," healthcare reform legislation
MIAMI—The Alpha-1 Foundation and Alpha-1 Association is pleased to announce that recent legislation introduced in the Senate entitled the “Patient-Centered Outcomes Research Act of 2009” includes a special provision to protect rare diseases.
The bill, S 1213, addresses Comparative Effectiveness Research and is intended to be included in any Senate introduced comprehensive healthcare reform legislation.
The bill establishes an “expert advisory panel for rare disease” which will assist in the design of rare disease comparative effectiveness research and in the evaluation of the research studies.
“Inclusion of a rare disease advisory panel will allow individuals with expertise in that particular disease state, such as physicians, scientists, patients and manufacturers, to contribute to the process,” said Miriam O’Day, Senior Director of Public Policy for both the Foundation and the Association.
The Foundation and Association will continue to advocate for the same type of special protection in House legislation.
