“Action” is a key component of who we are and what we do. While think tanks play important roles for advancing science, medicine and policy, the Rare Access Action Project (RAAP) focuses on specific, achievable and measurable campaigns designed to support the rare disease community and its various stakeholders.In early 2020, RAAP’s current initiatives include projects in 3 spheres: Federal, State, and Community
In early 2020, RAAP’s current Federal-level initiatives include:
In 2016, RAAP has developed a proposal to amend the existing Medicare Part D coverage gap discount program statute to require capping the patient cost-sharing obligation for orphan medicines in catastrophic coverage. Click here to learn more.
The CURES 2.0 effort is an opportunity to bring rare patients and specialists into Medicaid and Medicare decision-making processes both at the federal and state levels. RAAP supports inclusion of rare patient input into payment and access reviews, deliberations and decision-making. Click here to learn more.
In early 2020, RAAP’s current State-level initiatives include:
Through a collaboration with NCSL, we provide the organization with background information on rare disease, new innovations in treatment and the challenges of access to care. Our goal is to bring knowledge and understanding of rare diseases to state policymakers and stakeholders that can better inform decision making.
RAAP is very excited to have worked with NCSL to launch a new section to the NCSL website with educational information and detailed analysis on rare and orphan diseases. We encourage you to learn more and visit the site: https://www.ncsl.org/research/health/rare-and-orphan-diseases.aspx
In 2019, RAAP members identified the need for a novel reinsurance pool to provide better spreading of risk for rare, high-cost therapies. We propose the creation of a reinsurance program that could offer coverage for a list of high-cost therapies through stoploss insurers, State Medicaid programs and reinsurers. More information coming soon.
Click here to learn more.
In early 2020, RAAP’s current Community-level initiatives include:
STRIDE will be a state-focused rare disease gene therapy educational campaign that provides programs and content to help rare disease stakeholders and key decision makers implement strategies that facilitate patient access to transformative cell and gene therapies. More information on this project will be forthcoming, however, please visit, www.healinggenes.org for more educational information.