Washington, D.C. (4-9-24) – The Rare Access Action Project (RAAP) applauds the courageous veto of PDAB (Prescription Drug Affordability Board) legislation, SB 274, by Virginia Governor Youngkin last night to protect rare disease patient access to life-saving therapies.

Washington, D.C. (2-5-24) – The recently enacted Inflation Reduction Act (IRA), creates different Medicare price negotiation timelines for large and small molecule therapeutics.  This difference is now referred to as a “pill penalty” because of the shorter timeframe to negotiate that most small molecule pills will now have as compared to biologics (i.e. larger molecule drugs).

Washington, D.C. (12-12-2023) - On December 7th, the Biden administration announced its plans to clarify the Bayh-Dole Act, formally known as the Patent and Trademark Act Amendments,  and use the “march-in” clause to re-license high-priced drugs that had been a part of a public-private agreement. With this announcement the Biden administration will provide guidelines to federal agencies on how to use “march-in” authority when medications are deemed unavailable to the public on “reasonable terms.”

Washington, D.C. (10-2-2023) – Patients who depend on prescription drugs won a major victory in U.S. District Court as the Court struck down a federal rule that had allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs.

On behalf of the Rare Access Action Project (RAAP), I am writing to express strong concerns with the inclusion of rare therapies in the upcoming Prescription Drug Advisory Board (PDAB) process, which are part of the recommendations from the Prescription Drug Affordability Advisory Council (PDAAC). We understand that the PDAAC will be preparing recommendations for the PDAB and requesting community input on July 31st.

Washington, D.C. (7-11-23) - 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 Action Project (RAAP) was involved in the debate from the beginning warning that certain provisions could have detrimental effects on innovation, particularly in the orphan drug space.

(May 17, 2023) 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, which risks curtailing Montanans’ access to key clinical care and research opportunities.

(March 7, 2023) We write as patient representatives to ask each of you to support H.R. 485, the Protecting Healthcare for All Patients Act. This bill will protect vulnerable Americans by banning the use of Quality-Adjusted Life Years (QALY) in all federal programs.

Why do we need to ban QALY? In a time when we are demanding more evidence and scientific rigor from the treatments being developed and approved, why would we turn their coverage determination in federal programs over to an arbitrary metric?

Salt Lake City, Utah (2-11-23) - Senator Curt Bramble’s legislation banning PBMs and insurance companies from diverting copay assistance funds meant for patients to their own pockets took an important first step to becoming the 16th state to ban copay accumulator schemes with a unanimous vote in the Utah Senate Business and Labor Committee. The bill will now move to the Senate Floor to be debated and voted on.

WASHINGTON, D.C. (Jan. 31, 2023) On Friday, January 27th, the Medicaid and CHIP Payment and Access Commission (MACPAC) voted to recommend that Congress permit states to restrict and delay access to therapies approved under the accelerated approval pathway. The U.S. Congress already mandated, as part of the Medicaid rebate agreement, that patients must have access to therapies at FDA approval. This includes medications under the accelerated approval pathway.