"Action" is a key component of who we are and what we do. While think tanks play an important role in 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:

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.

Changes in Medicare Part D Benefit Design Can Impact Availability of Future Treatments

With almost 50 million beneficiaries enrolled in the program, the Medicare prescription drug benefit (Part D) is considered by many to be a model of a successful government insurance program. Beneficiary premiums have declined 13.5% over the past 5 years, and most regions of the country have many prescription drug plan options for beneficiaries. 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.

Inflationary Rebates

MACPAC’s recent recommendations for the 2021 Congressional report could adversely and disproportionately affect development of orphan drugs and biologicals. Click here to learn more.


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

Newborn Screening

Newborn Screening can help ensure every American Baby has the best chance for a healthy life. Click here to learn more.

National Conference of State Legislators (NCSL)

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:

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.