This page includes draft policy information that is still in development. You are welcome to use these materials, but please keep in mind that they may be incomplete or subject to change.
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Prescription Drug Affordability Board
A Prescription Drug Affordability Board is a state group that reviews and may cap drug prices. It can limit access to essential, high-cost therapies and risk reducing treatment options for patients.
Party Pro / Cons and Concerns
Important Note: Remember, there are nuances that differentiate in each state. This material provides general information that can be adapted to truly align to your own state.
Democrat Party Pros
Democrat Party Pros
Democrat Party Cons/Concerns
Democrat Party Cons/Concerns
Republican Party Pros
Republican Party Pros
Republican Party Cons/Concerns
Republican Party Cons/Concerns
From the Patient Perspective
PDABs raise serious concerns because efforts to cap drug prices may unintentionally limit access to rare disease treatments, which often have no alternatives. Families fear that manufacturers could pull therapies from states where price caps are set too low, leaving patients without lifesaving medications. While patients support affordability, they worry that PDAB decisions may not fully reflect the complexity of rare diseases, the small patient populations, or the lack of substitute treatments. This creates fear that policies intended to help could actually reduce access to critical care.
What rare-disease advocates usually ask for instead
Common alternatives/safeguards proposed in the rare policy space include:
- explicit exemptions or special standards for rare/orphan drugs,
- mandatory rare-disease advisory input before any UPL,
- focusing on PBM transparency/rebate pass-through,
- copay accumulator/maximizer reforms so savings reach patients.
Talking Points to Establish Guardrails for Prescription Drug Affordability Boards (PDABs)
- Exempt rare and ultra-rare therapies from binding price caps or UPLs.
- Require PDABs to consider disease severity, lack of alternatives, and risk of drug withdrawal.
- Avoid cost-effectiveness models that undervalue rare disease treatments.
- Ensure patient representation and transparency in all PDAB decisions.
- Protect insurance and Medicaid coverage for high-cost specialty therapies.
Policy Guidelines
- Exempt rare disease and ultra-rare disease therapies from PDAB price-setting.
Given current federal proposals that could tighten cost controls or redefine affordability standards, states must protect access to small-population therapies that have no substitutes.
- Require PDABs to consider clinical uniqueness and lack of alternatives.
Policies should mandate that PDABs weigh disease severity, unmet need, and absence of therapeutic options—especially critical if broader reforms push states to adopt more aggressive price controls.
- Prohibit binding upper payment limits (UPLs) for drugs with single sources or limited distribution.
Federal changes may encourage states to cap prices more directly; policies must ensure that UPLs cannot be applied to rare disease treatments where caps risk withdrawal from the market.
- Require strong patient representation in PDAB decision-making.
As federal reforms evolve, boards must include rare disease patients or caregivers who can speak to lived impact, disease burden, and the consequences of restricted access.
- Mandate transparency in PDAB methodology and assumptions.
If national reform changes cost-effectiveness frameworks, states must require PDABs to avoid models (e.g., QALYs) that undervalue rare disease treatments and pediatric outcomes.
- Require early and ongoing consultation with clinical experts.
PDABs must consult rare disease specialists to ensure pricing reviews reflect actual clinical value—especially important if federal rules change how evidence is evaluated.
- Protect Medicaid and commercial coverage for high-cost therapies.
Proposals at the federal level could shift more cost burden to states; policies must ensure PDAB actions cannot reduce coverage or access for rare disease patients.
- Prevent market withdrawal of essential therapies.
If federal reforms increase pressure on pricing, policies should require PDABs to assess risk of withdrawal before recommending caps and include safeguards against actions that jeopardize drug availability.
- Require alternative access pathways if price actions are taken.
If any affordability interventions occur, policies should guarantee patient access through exceptions, state assistance, or special procurement pathways to avoid treatment interruptions.
- Ensure PDAB recommendations do not override clinical guidelines or FDA standards.
Any reforms that strengthen state authority over pricing must explicitly prevent PDAB actions from dictating clinical access, prescribing decisions, or treatment sequencing.