1. Amendment to Section 1927 of the SSA Act regarding Medicaid Payments for Covered Outpatient Drugs

2. Our purpose We enable people with life-altering conditions to lead better lives. A Federal Legislative Solution to Improving Medicaid Coverage of Rare Disease Therapies Jay Greissing Dir., U.S. Gov’t Relations and Public Policy September 19, 2014

3. To be as brave as the people we help. 3 Medicaid Coverage Restrictions Step Therapy Alaska Arkansas California Georgia Minnesota Denial Oregon – Section 1115 Waiver to establish Prioritized Health Services List

4. To be as brave as the people we help. 4 Solution Prohibit Medicaid plans from using restrictive step therapy protocols when: The drug is prescribed for a rare disease; and The rare disease is an FDA approved use

5. To be as brave as the people we help. 5 Why Should The Community Partner to Petition Congress? EEquity for individuals w/ rare conditions PPhysician and patient preference IInnovation of and access to individualized treatments CContinuity of care