By Counterforce Health Team in Acthar Gel (repository corticotropin injection) —

How to Renew Acthar Gel Coverage with Aetna CVS Health in Illinois: Timeline, Documentation, and Appeal Options

Answer Box: Renewing Acthar Gel Coverage with Aetna CVS Health in Illinois

Acthar Gel renewals with Aetna CVS Health require submission 30-45 days before expiration with updated clinical documentation proving ongoing medical necessity. For infantile spasms (the only covered indication), submit recent EEG results, seizure logs, and clinical notes showing continued benefit. Appeals must be filed within 180 days of denial, with expedited review available in 72 hours for urgent cases. Illinois law guarantees binding external review within 30 days if internal appeals fail.

First step today: Check your current PA expiration date and gather recent clinical documentation showing treatment response.

Table of Contents

When to Start Your Renewal Process

Renewal Triggers and Timing Windows

Start your Acthar Gel renewal process 30-45 days before your current prior authorization expires. Aetna requires precertification for all Acthar Gel therapy, and processing standard renewals typically takes 30-45 days for commercial plans.

Important: For Illinois Medicaid plans affected by system outages (February 2024–April 2025), all PA requests need resubmission if ongoing need remains, with extension deadlines ranging from July 15, 2025, to November 1, 2025.

Signs you should start early:

  • Your child's seizure pattern has changed
  • Dosing adjustments have been made
  • New lab results or EEG findings are available
  • Your plan year is ending soon (check for formulary changes)

Coverage Duration by Indication

According to Aetna's clinical policy:

  • Infantile spasms: Renewals typically granted for 3-month periods with documented clinical benefit
  • All other conditions: Aetna considers Acthar Gel not medically necessary due to availability of less costly, equivalent therapies

Required Documentation for Renewal

Essential Clinical Evidence

For infantile spasms renewal (the only covered indication), your healthcare provider must submit:

Primary Documentation:

  • Recent EEG results showing spasm control or improvement
  • Detailed seizure logs from the past 30-60 days
  • Clinical notes documenting developmental progress
  • Current weight and dosing calculations
  • Assessment of treatment response and ongoing medical necessity

Supporting Documentation:

  • Laboratory results if monitoring for side effects
  • Any adverse event reports
  • Medication adherence records
  • Comparison to baseline EEG and clinical status
Clinician Corner: Medical necessity letters should specifically address why Acthar Gel remains the appropriate therapy versus alternative treatments, include objective measures of seizure control, and document any attempts to reduce dosing or transition to other therapies.

Response Monitoring Requirements

Clinical monitoring for Acthar Gel should demonstrate:

  • Primary efficacy measure: EEG normalization and cessation of spasms
  • Secondary measures: Developmental milestones, quality of life improvements
  • Safety monitoring: Regular assessment for infections, hyperglycemia, hypertension, and other corticosteroid-related effects

Submission Process and Timeline

How and Where to Submit

Contact Information:

  • Precertification phone: (866) 752-7021
  • Precertification fax: (888) 267-3277
  • Illinois Medicaid PA: Phone (800) 252-8942 or Fax (217) 524-7264

Standard Processing Timeline

Request Type Processing Time Expedited Timeline
Initial PA 30-45 days 72 hours
Renewal PA 30-45 days 72 hours
Internal Appeal 45 days typical 72 hours
External Review 30 days (Illinois) 72 hours

Specialty Pharmacy Coordination: Acthar Gel must be obtained through CVS Specialty Pharmacy under Aetna plans. Coordinate renewal timing with your specialty pharmacy to avoid gaps in supply.

If Your Coverage Lapses

Bridge Therapy Considerations

If your Acthar Gel coverage lapses while awaiting renewal approval:

Immediate Steps:

  1. Contact your prescriber to request expedited review if delay could jeopardize health
  2. Explore manufacturer patient assistance programs
  3. Discuss temporary alternative therapies with your healthcare team
  4. File an expedited appeal if the renewal was denied

Emergency Supply Options: While Aetna policies don't specify emergency supply provisions for Acthar Gel in our research, contact CVS Specialty Pharmacy and Aetna Member Services to explore:

  • Short-term supply during precertification delays
  • Compassionate use programs
  • Alternative ACTH preparations if available

Appeals Process for Denied Renewals

Illinois Appeal Rights and Timeline

Illinois residents have strong appeal protections with specific timelines:

Internal Appeal Process:

  • Filing deadline: 180 days from denial notice
  • Decision timeline: 45 days for standard appeals, 72 hours for expedited
  • Required documentation: Updated clinical evidence, peer-reviewed literature supporting continued use

External Review Process:

  • Filing deadline: 30 days after final internal denial (shorter than most states)
  • Decision timeline: 5 business days once IRO receives materials
  • Reviewer: Board-certified physician with relevant expertise
  • Result: Binding decision on Aetna
From our advocates: "In cases where families have comprehensive seizure logs and recent EEG data showing continued spasm control, we've seen successful appeals even when initial renewals were denied. The key is demonstrating that stopping Acthar Gel would likely result in seizure recurrence."

Common Denial Reasons and Solutions

Denial Reason How to Address Required Documentation
"Not medically necessary" Provide evidence of continued seizure control Recent EEG, seizure logs, clinical notes
"Alternative therapies available" Document failure/intolerance of alternatives Prior therapy records, adverse event reports
"Insufficient clinical benefit" Show objective improvement measures Baseline vs. current EEG, developmental assessments

Annual Plan Changes to Monitor

2024-2025 Aetna Formulary Updates

Key changes affecting Illinois members:

Coverage Restrictions:

Effective April 1, 2025: Members on Aetna Health Exchange plans should review coverage changes that may affect out-of-pocket costs and approval requirements.

Illinois-Specific Legal Changes: Starting January 1, 2026, Illinois law (HB 5395) prohibits step therapy requirements for Acthar Gel and Purified Cortrophin Gel in Medicaid and HIM plans.

Personal Renewal Tracker

Key Dates to Monitor

Create your tracking system:

  • Current PA expiration date: ___________
  • Renewal submission target (45 days prior): ___________
  • Last EEG date: ___________
  • Next EEG scheduled: ___________
  • Specialty pharmacy contact: ___________
  • Prescriber contact for urgent requests: ___________

Documentation Checklist:

  • Recent EEG results (within 30-60 days)
  • Seizure log/diary
  • Clinical notes showing continued benefit
  • Current weight and dosing information
  • Any lab results for safety monitoring
  • Insurance card and member ID

Annual Review Items

  • Check formulary status for new plan year
  • Verify specialty pharmacy network
  • Review quantity limits and coverage duration
  • Update emergency contact information
  • Confirm prescriber is still in-network

FAQ

How long does Aetna PA renewal take in Illinois? Standard renewals take 30-45 days. Expedited reviews for urgent cases must be completed within 72 hours.

What if my child's seizures return while waiting for renewal approval? Request expedited review immediately. Contact your prescriber to document the medical urgency and submit an expedited PA request.

Can I appeal if my renewal is denied? Yes. You have 180 days to file an internal appeal with Aetna, and Illinois guarantees binding external review if the internal appeal fails.

Does step therapy apply to Acthar Gel renewals? Currently yes, but Illinois law will prohibit step therapy for Acthar Gel starting January 1, 2026, for Medicaid and HIM plans.

What happens if I switch Aetna plans mid-year? Your current PA may not transfer automatically. Contact your new plan immediately to initiate a new PA request and request expedited review to avoid treatment gaps.

Are there cost assistance programs available? Contact the Acthar Gel manufacturer for patient assistance programs. Some foundations also provide grants for high-cost specialty medications.

This guide is for educational purposes and doesn't constitute medical advice. Coverage decisions depend on individual medical circumstances and plan terms. For personalized assistance with insurance appeals and prior authorizations, Counterforce Health helps patients and clinicians turn denials into evidence-backed appeals by analyzing denial letters, plan policies, and clinical notes to create targeted rebuttals.

Illinois Resources:

Sources & Further Reading

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