Initiatives

"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. RAAP’s current initiatives include projects in 3 spheres: Federal, State, and Community.

Federal

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

RAAP Comments to FY 2023 MPFS Proposed Rule

The Rare Access Action Project, (RAAP) appreciates the opportunity to comment on the Centers for Medicare & Medicaid Services’ (CMS) proposed payment updates to the calendar year 2023 Medicare Physician Fee Schedule (Proposed Rule). RAAP appreciates CMS’ numerous proposals to implement the discarded drug policy process but urges CMS to broaden its applicability of its “unique circumstances” authority and implement some procedural safeguards for manufacturers during the refund determination process. Click here to learn more

Ensuring the most vulnerable have access— Revisiting the Medicare Part D benefit

In many ways, the Medicare prescription drug benefit, Part D, is a successful demonstration of public-private partnership; however, beneficiaries are increasingly facing affordability challenges at the pharmacy because of the structure of the Part D benefit. Due to the way that Part D was set up, payers are prohibited from offering a plan design with an out-ofpocket (OOP) cap, a feature that exists in most Medicare Part B plans and nearly all commercial plans. Click here to learn more

Until Congress Acts, States Must Guarantee Affordable Access to Medigap Plans for Vulnerable Patients < 65

Patients with Original Medicare can still face significant affordability challenges. After the deductible is met, patients face a 20% coinsurance on the remaining costs with no out-of-pocket maximum. Medigap is extra health insurance that Medicare beneficiaries may be able to purchase from a private company to pay health care costs not covered by Original Medicare. This Medigap coverage provides a valuable safety net for millions of Medicare beneficiaries who otherwise could not afford medically necessary items and services. Click here to learn more

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.

State

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

Until Congress Acts, States Must Guarantee Affordable Access to Medigap Plans for Vulnerable Patients < 65

Patients with Original Medicare can still face significant affordability challenges. After the deductible is met, patients face a 20% coinsurance on the remaining costs with no out-of-pocket maximum. Medigap is extra health insurance that Medicare beneficiaries may be able to purchase from a private company to pay health care costs not covered by Original Medicare. This Medigap coverage provides a valuable safety net for millions of Medicare beneficiaries who otherwise could not afford medically necessary items and services. Click here to learn more

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: https://www.ncsl.org/research/health/rare-and-orphan-diseases.aspx

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.