Batten Disease Support, Research, & Advocacy (BDSRA) Foundation represented the Batten disease community in Columbus, Ohio for Rare Disease State Advocacy Day in Ohio on October 17, 2023.
Below, BDSRA President & CEO Amy Fenton Parker and Marketing & PR Coordinator Patrick Kotnik discuss the event, their meetings with Ohio legislators, and the legislative asks provided by Ohio Rare and the EveryLife Foundation for Rare Diseases.
Click the links below to view the one-pagers for each of the three legislative asks as well as BDSRA one-pager and “The Cost of Delayed Diagnosis in Rare Disease” one-pager. The three legislative asks are exclusive to Ohio.
H.B. 177 – Prohibit certain health insurance cost-sharing practices
H.B. 130 – Establishes an exemption to prior authorization requirements
H.B. 24 – Require health plan and Medicaid coverage of biomarker testing
The Cost of Delayed Diagnosis in Rare Disease One-Pager
For any questions, please email patrick@bdsrafoundation.org or amy@bdsrafoundation.org.
