Prior Authorization Resources

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.

We welcome suggestions and additional resources. To share materials or feedback, please contact anna@statezebranetwork.org  

Prior Authorization

Prior authorization is a requirement that providers get insurer approval before certain treatments or medications are covered. Reducing prior authorization times can improve timely access to needed care, especially for complex or rare conditions.

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
Arguments Supporting Prior Authorization in Rare Disease Contexts
Democrat Party Pros
• Can help ensure high-cost specialty therapies are used appropriately and supported by clinical guidelines. • Encourages insurers to review complex treatments carefully to avoid misuse or incorrect dosing. • Support tends to grow when paired with transparency, strong oversight, and patient protections.
Democrat Party Cons/Concerns
Arguments for Reform or Limits in Rare Disease Contexts
Democrat Party Cons/Concerns
• Viewed as a tool to manage extremely high specialty drug costs and maintain private market stability. • Supports insurer flexibility and case-by-case review for expensive gene, cell, or biologic therapies. • Favors targeted PA for very high-cost treatments instead of broad mandates.
Republican Party Pros
Arguments Supporting Prior Authorization in Rare Disease Contexts
Republican Party Pros
• PA often delays access to lifesaving or time-sensitive rare disease treatments. • Many rare conditions lack established guidelines, leading to inappropriate denials and repeated requests. • Strong support for “gold-carding,” continuity-of-care protections, and strict timelines to prevent harmful delays.
Republican Party Cons/Concerns
Arguments for Reform or Limits in Rare Disease Contexts
Republican Party Cons/Concerns
• PA can block or delay physician-recommended treatments for rare diseases where expertise is limited. • Constituent concerns often focus on burdensome paperwork and insurers overruling specialists. • Supports reforms that reduce red tape, improve transparency, and protect continuity of care—while avoiding expansive regulation.
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Prior Authorization Frustration
From the Patient Perspective

Prior authorization is a major barrier because it can delay or deny access to the specialized treatments and medications they urgently need. Rare disease patients often require therapies with no alternatives, so every delay risks worsening health or irreversible damage. Families struggle with repeated paperwork, denials from reviewers unfamiliar with their condition, and disruptions to ongoing treatment. These administrative hurdles add stress, uncertainty, and fear to an already overwhelming medical journey.

Talking Points to Reform Prior Authorization to Prevent Delays in Lifesaving Care
  • Prohibit PA for treatments with no clinical alternative.
  • Require fast, transparent decisions and rare-disease–expert reviewers.
  • Expand “gold-carding” for specialists with strong approval histories.
  • Limit repeat PA for stable chronic therapies.
  • Ensure reforms protect access if federal utilization management rules tighten.

 

Policy Guidelines
  1. Protect rare disease patients from stricter PA requirements proposed in federal reforms.
    Some current proposals could allow insurers to tighten utilization management. Policies must ensure rare disease patients are not subjected to additional delays or denials for essential treatments.

 

  1. Require fast, transparent, and medically appropriate PA timelines.
    Rare disease therapies are often time-sensitive. Policies should mandate rapid decisions, especially in pediatric or progressive conditions where delays cause irreversible harm.

 

  1. Implement “gold-carding” for rare disease specialists.
    Given concerns that future reforms may increase administrative review, clinicians with strong approval histories should be exempt from repetitive PAs for chronic, stable therapies.

 

  1. Prohibit PA for medications or treatments with no clinical alternatives.
    Many rare disease therapies are the only option. Policies should ensure insurers cannot delay care through PA for single-source or first-line treatments.

 

  1. Require that PA reviewers have clinical expertise in the relevant rare disease.
    As federal proposals consider expanding insurer discretion, states should require condition-specific expertise to prevent inappropriate denials from non-specialist reviewers.

 

  1. Ensure continuity of care during policy or plan changes.
    If federal reforms shift plan structures or utilization rules, rare disease patients must maintain uninterrupted access to their current therapies without new PA barriers.

 

  1. Mandate transparency around PA criteria and denials.
    Policies should require clear, evidence-based criteria and publicly report denial rates—especially important if federal changes weaken oversight of private plans.

 

  1. Limit repeat PAs for chronic, stable conditions.
    Families often face annual or even monthly renewals. Policies should ensure that ongoing therapies for rare diseases receive multi-year approvals to reduce administrative burden.

 

  1. Protect access to high-cost or advanced treatments, including gene therapy.
    Upcoming reforms may affect how insurers manage expensive therapies. Policies must ensure PA cannot be used to effectively block access due to cost concerns.

 

  1. Center patient and caregiver involvement in evaluating PA reforms.
    As federal policy changes evolve, families managing rare diseases should advise on impacts, ensuring reforms do not introduce delays, denials, or burdens that jeopardize health.



Additional Resources

Organizations and leaders who have policy experience in this area

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Videos & Podcasts