By Counterforce Health Team in Evrysdi (risdiplam) —

How to Get Evrysdi (Risdiplam) Covered by UnitedHealthcare in Illinois: Complete Prior Authorization and Appeals Guide

Answer Box: Getting Evrysdi Covered by UnitedHealthcare in Illinois

UnitedHealthcare requires prior authorization (PA) for Evrysdi (risdiplam) in Illinois. To get approved, you need genetic confirmation of 5q SMA, baseline motor function scores (CHOP INTEND or HFMSE), and prescription by an SMA-experienced neurologist. Submit electronically via the UnitedHealthcare Provider Portal. If denied, Illinois residents have strong appeal rights including independent external review within 4 months of final denial.

First step today: Have your neurologist's office submit the PA with genetic testing results and motor assessments via the UnitedHealthcare Provider Portal.

Table of Contents

Understanding Your Denial Letter

When UnitedHealthcare denies Evrysdi coverage, the denial letter will include specific reason codes. Common reasons include:

  • Medical necessity not established - Missing genetic confirmation or motor assessments
  • Step therapy required - Must try preferred alternatives first (though limited for SMA)
  • Prior authorization incomplete - Missing neurologist documentation
  • Non-formulary drug - Evrysdi may require exception request

Look for the denial reference number and appeal deadline—typically 180 days for internal appeals. The letter should also include instructions for requesting a peer-to-peer review.

UnitedHealthcare's Evrysdi Coverage Requirements

Based on UnitedHealthcare's medical necessity criteria, Evrysdi approval requires all of the following:

Coverage at a Glance

Requirement What It Means Where to Find It
Genetic confirmation 5q SMA with SMN1 deletion/mutation Genetic testing report
Baseline motor assessment CHOP INTEND (infants) or HFMSE/RULM (older patients) Neurologist evaluation
Specialist prescription SMA-experienced neurologist Provider credentials
No invasive ventilation Non-invasive ventilation limited to sleep Clinical notes
No concurrent Spinraza Cannot use both treatments simultaneously Treatment history
Prior Zolgensma documentation If previously received, must show functional decline Motor assessments

Reauthorization Requirements (Annual)

For continued coverage, you must demonstrate positive clinical response from baseline:

  • HFMSE: ≥3-point improvement or maintenance
  • RULM: ≥2-point improvement or maintenance
  • CHOP INTEND: ≥2 additional motor milestones

Submit reauthorization requests 30-60 days before expiration.

Step-by-Step: Fastest Path to Approval

  1. Gather Required Documents (Patient/Family)
    • Insurance card and member ID
    • Complete genetic testing report showing SMN1 deletion
    • All prior SMA treatment records
  2. Schedule Neurologist Visit (Patient/Family)
    • Ensure provider has SMA expertise
    • Complete baseline motor function assessment
    • Document treatment goals and expected outcomes
  3. Submit Electronic PA (Neurologist's Office)
    • Use UnitedHealthcare Provider Portal (electronic submissions only)
    • Include all required documentation
    • Track confirmation number
    • Timeline: 15 days standard, 72 hours expedited
  4. Route to OptumRx Specialty Pharmacy (Neurologist's Office)
    • Evrysdi must be dispensed through OptumRx network
    • Confirm patient enrollment
    • Verify shipping address
  5. Monitor PA Status (Patient/Family)
    • Check member portal for updates
    • Contact OptumRx at 1-800-711-4555 for status
    • Prepare for potential peer-to-peer request
  6. If Approved: Coordinate Delivery (All)
    • OptumRx handles specialty pharmacy services
    • Confirm dosing based on current weight
    • Schedule follow-up appointments
  7. If Denied: Immediate Appeal (Neurologist's Office)
    • Request peer-to-peer review within 7-14 days
    • Gather additional supporting evidence
    • Consider expedited appeal if urgent

Common Denial Reasons & How to Fix Them

Denial Reason How to Overturn
"Genetic testing not provided" Submit complete genetic report showing SMN1 deletion with copy numbers
"Baseline assessment missing" Include CHOP INTEND, HFMSE, or RULM scores with evaluation date
"Not prescribed by specialist" Verify neurologist credentials; include CV showing SMA experience
"Medical necessity not established" Add detailed letter explaining SMA progression risk without treatment
"Concurrent therapy exclusion" Document discontinuation of Spinraza; provide washout period notes
"Prior Zolgensma recipient" Show functional decline with motor assessments post-Zolgensma

Appeals Process in Illinois

Illinois provides robust appeal rights for UnitedHealthcare denials through the Health Carrier External Review Act.

Internal Appeals (Required First Step)

Timeline: Must file within 180 days of denial Process: Submit via UnitedHealthcare member portal or mail Decision timeframe: 15 business days (standard), 24-72 hours (expedited)

External Review (After Internal Appeal)

Eligibility: Available after exhausting internal appeals Timeline: Must request within 4 months of final internal denial Cost: Free to patients Decision: Binding on UnitedHealthcare

Note: Illinois has a shorter external review filing window (4 months) compared to many states. Don't delay if your internal appeal is denied.

Required Documentation for Appeals

  • Copy of denial letter with reference number
  • Complete medical records supporting necessity
  • Genetic testing confirmation
  • Motor function assessments (baseline and follow-up)
  • Neurologist's letter of medical necessity
  • Treatment history and failed alternatives

Peer-to-Peer Review Strategy

When UnitedHealthcare denies Evrysdi, request a peer-to-peer review by calling 1-800-711-4555 within 7-14 days.

Pre-Call Preparation Checklist

  • Patient Information: Member ID, denial reference number, SMA type
  • Clinical Documentation: Genetic confirmation, motor scores, treatment history
  • Talking Points: FDA approval rationale, clinical trial evidence, patient-specific factors
  • Alternative Treatments: Document why Spinraza or Zolgensma aren't appropriate

Key Discussion Points

  1. FDA Approval: Evrysdi is approved for SMA treatment in patients 2+ months
  2. Clinical Evidence: Reference FIREFISH/SUNFISH trial data showing motor function benefits
  3. Patient-Specific Factors: Age, SMA type, motor function trajectory, quality of life impact
  4. Safety Profile: Oral administration advantage over intrathecal alternatives

Counterforce Health specializes in turning insurance denials into targeted, evidence-backed appeals by analyzing denial letters and plan policies to craft point-by-point rebuttals aligned with payer requirements.

External Review Rights in Illinois

If UnitedHealthcare upholds the denial after internal appeals, Illinois residents can request an independent external review through the Illinois Department of Insurance.

Process Overview

  1. Eligibility Determination: UnitedHealthcare has 5 business days to confirm eligibility
  2. IRO Assignment: Illinois randomly assigns an Independent Review Organization
  3. Clinical Review: Board-certified physician with SMA expertise reviews case
  4. Decision Timeline: 5 business days after receiving all materials
  5. Binding Result: UnitedHealthcare must comply if overturned

Required Forms

Download the external review request form from the Illinois Department of Insurance website. Your healthcare provider may need to complete certification forms for expedited cases.

Cost Assistance Options

While pursuing coverage, explore these financial assistance programs:

Manufacturer Support

  • MySMA Support Program: Enrollment assistance, benefits investigation, up to 30-day free starter supply
  • Contact: Available through Evrysdi.com or neurologist's office
  • Eligibility: Varies by insurance type and income

Foundation Grants

  • Patient advocacy organizations may provide emergency assistance
  • Search the National Organization for Rare Disorders (NORD) database
  • Contact local SMA support groups for Illinois-specific resources

When to Escalate to Regulators

If standard appeals fail, Illinois offers multiple regulatory assistance options:

Illinois Department of Insurance

  • Consumer Hotline: 877-527-9431
  • Online Complaints: IDOI Message Center
  • Services: Appeal guidance, external review assistance, regulatory enforcement

Illinois Attorney General Health Care Bureau

  • Hotline: 1-877-305-5145
  • Email: [email protected]
  • Services: Informal mediation with UnitedHealthcare, consumer protection enforcement

Use the Health Care Complaint Form to document issues with UnitedHealthcare's denial or appeals process.

FAQ

How long does UnitedHealthcare prior authorization take for Evrysdi in Illinois? Standard PA decisions take 15 business days; expedited reviews are completed within 72 hours for urgent cases.

What if Evrysdi is non-formulary on my UnitedHealthcare plan? Request a formulary exception with medical necessity documentation. Your neurologist must demonstrate why formulary alternatives aren't appropriate.

Can I request an expedited appeal in Illinois? Yes, if delays would seriously jeopardize your health. Both internal appeals and external reviews can be expedited, with decisions in 24-72 hours.

Does step therapy apply if I've tried treatments outside Illinois? Treatment history from other states counts toward step therapy requirements. Provide complete documentation of prior therapies and outcomes.

What happens if the external review denies coverage? External review decisions are final and binding. Consider working with Counterforce Health to explore alternative coverage pathways or manufacturer assistance programs.

How much does Evrysdi cost without insurance? List pricing approaches $340,000 annually (weight-based dosing). Individual bottle costs approximately $11,000 per 80mL, making insurance coverage essential.

Can I switch to a different UnitedHealthcare plan for better coverage? Plan changes are typically limited to open enrollment periods unless you qualify for a special enrollment period due to life events.

What documentation do I need for reauthorization? Annual reauthorization requires updated motor function assessments showing clinical benefit, current weight for dosing adjustments, and continued neurologist oversight.

Medical Disclaimer: This information is for educational purposes only and does not constitute medical advice. Always consult with your healthcare provider and insurance company for personalized guidance on coverage and treatment decisions.

Sources & Further Reading

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