Advocacy, Public Policy and the Cholangiocarcinoma Foundation

Influencing health care in the legislative arena assuring for an effective health care system is of great interest to the Cholangiocarcinoma Foundation and the patient community at large. We recognize that many issues are too big or complex to be easily resolved by a single organization and that it requires the knowledge of organized groups. In order to ensure that rare disease patients are heard in the State and Federal Government, advocates must make contact with their respective legislative and Federal constituents. Marion Schwartz, Chief Advocacy Officer, joined a Rare Disease Legislative Advocate meeting with Senator Barbara Boxer’s Office on August 13th. The focus was the 21st Century Cures Act, which passed in Congress and now goes to the Senate for the not yet written “21st Century Cures and Innovation for Healthier Americans” legislation.

Areas of discussions were focused on the “Ensuring Access to Clinical Trials Act”, allowing patients with rare disease to receive up to $2,000 in compensation for participating in clinical trials while receiving Social Security and Medicaid; potential new therapies for rare diseases to move swiftly from research to patients, and enhancement of drug development with inclusion of patients perspectives and use of biomarker data.