Address: At the Rare Hub, 1012 14th Street NW, Suite 500 Washington, DC 20005

Initiatives

“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

Federal

In early 2020, RAAP’s current Federal-level initiatives include:

AMENDING MEDICARE PART D

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.

CURES 2.0

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.


State

In early 2020, RAAP’s current State-level initiatives include:


NATIONAL CONFERENCE OF STATE LEGISLATORS (NCSL)

Through a collaboration with NCSL, we provide background information on rare disease, new innovations in treatment and the challenges of access to care. Our goal is bring together patients, rare disease life sciences innovators and university-based experts focused on access solutions.


THE REINSURANCE PROJECT

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.


THE PATIENT-FOCUSED MEDICAID IMPERATIVE

Click here to learn more.


Community

In early 2020, RAAP’s current Community-level initiatives include:

THE STATE RARE DISEASE EDUCATION INITIATIVE (STRIDE)

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.