News - Rare Access Action Project

Colorado Prescription Drug Affordability Board & Members of the Prescription Drug Affordability Advisory Council (PDAAC) Letter

Members of the Colorado Prescription Drug Affordability Board & Members of the Prescription Drug Affordability Advisory Council (PDAAC): Thank you for the opportunity to comment. As part of...Read More

Inflation Reduction Act to Harm Rare Disease Innovation

The recently passed Inflation Reduction Act (IRA) was hailed by supporters as a major milestone for reducing costs across a range of sectors, including prescription drug prices. The Rare Access...Read More

Serious Concerns Raised by SB 351 for Patients with Rare Diseases

RAAP (Rare Access Action Project) just recently became aware of legislation which has the potential for devasting effects on people with rare diseases and respectfully urges you to veto SB 351,...Read More

Support Federal Legislation to Ban Quality Adjusted Life Years (QALY) in all federal programs

Support Federal Legislation to Ban Quality Adjusted Life Years (QALY) in all federal programs. We write as patient representatives to ask each of you to support H.R. 485, the Protecting...Read More

Patient Protection Bill Wins Big in Utah Senate

SB 184 (1st Substitute) Wins Unanimous Vote in the Utah Senate Business and Labor Committee Salt Lake City, Utah (2-11-23) – Senator Curt Bramble’s legislation banning PBMs and...Read More

MACPAC’S Mission is to Ensure Access. NOT DENY it to Our Most Vulnerable!

RAAP Set to Fight MACPAC Efforts to Restrict Access to Rare Medicines in Medicaid. On Friday, January 27th, the Medicaid and CHIP Payment and Access Commission (MACPAC) voted to recommend that...Read More

Celebrating the Orphan Drug Act

By Michael Eging, Executive Director, RAAP: On January 4, 1983, the Orphan Drug Act (ODA), which created incentives for the development of rare disease medicines, was signed into law by...Read More

Improving the Public-Private Partnership; Rethinking Medicare Part D

RAAP study shows how out-of-pocket (OOP) cap in the Medicare prescription drug benefit, Part D will help millions of beneficiaries and create a path to improved access. Washington, D.C....Read More

Accelerated Approval Delivers Hope for Rare Disease Patients

The Accelerated Approval Pathway (AAP) has delivered innovative therapies to rare disease patients for three decades. However, the recent and controversial approval by the Food and Drug...Read More

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