By Counterforce Health Team in Crysvita (burosumab) —

How to Get Crysvita (burosumab) Covered by Aetna (CVS Health) in Illinois: Appeals, Forms, and State Rights

Answer Box: Fast Track to Crysvita Coverage

Getting Crysvita (burosumab) covered by Aetna (CVS Health) in Illinois requires prior authorization with genetic testing confirmation of XLH or tumor-induced osteomalacia. Submit PA requests via Availity portal or fax 1-866-249-6155 for specialty drugs. If denied, you have 180 days to appeal internally, then 4 months for Illinois external review. Start today: Contact your provider to request genetic testing (free through manufacturer programs) and gather serum phosphorus labs. Illinois residents have strong appeal rights with binding external review decisions.

Table of Contents

  1. Why Illinois State Rules Matter
  2. Prior Authorization Requirements
  3. Step Therapy Protections
  4. Appeals Process and Deadlines
  5. External Review Rights
  6. Practical Scripts and Templates
  7. Cost Assistance Programs
  8. When to Contact Illinois Regulators

Why Illinois State Rules Matter

Illinois provides some of the strongest patient protections in the nation for insurance appeals, especially for rare disease treatments like Crysvita (burosumab). Under the Illinois Health Carrier External Review Act, you're guaranteed an independent physician review if Aetna denies your appeal.

Key Illinois advantages:

  • 4-month window to request external review (longer than many states)
  • No cost to consumers for external review
  • 5-day decision requirement once medical records are submitted
  • Binding decisions that force insurers to cover approved treatments
Note: Self-funded employer plans (ERISA) may not be subject to all Illinois protections, but most Aetna plans in Illinois follow state rules.

Prior Authorization Requirements

Crysvita requires prior authorization through CVS Caremark specialty pharmacy for all Aetna plans. The drug isn't on most formularies, so you'll likely need both PA approval and a formulary exception.

Coverage at a Glance

Requirement What It Means Where to Submit Timeline
Prior Authorization Medical necessity review required Availity portal or fax 1-866-249-6155 30-45 days standard
Formulary Exception Coverage for non-formulary drug Same as PA submission Included in PA review
Genetic Testing PHEX gene mutation confirmation Free testing available 2-4 weeks
Lab Monitoring Serum phosphorus levels Provider documentation Ongoing

Medical Necessity Documentation

Your provider must submit comprehensive documentation including:

Required clinical evidence:

  • Confirmed XLH or tumor-induced osteomalacia diagnosis
  • Genetic testing showing PHEX gene mutation
  • Persistent low serum phosphorus despite conventional therapy
  • Radiographic evidence of rickets/osteomalacia (if applicable)
  • Treatment history and failures with phosphate/vitamin D therapy

Submission methods:

Step Therapy Protections

Illinois requires insurers to provide medical exceptions to step therapy when clinically appropriate. For Crysvita, this typically means documenting why conventional phosphate and vitamin D therapy is insufficient.

Medical Exception Criteria

Aetna must approve exceptions when you can demonstrate:

  • Prior treatment failure: Documented inadequate response to phosphate/vitamin D
  • Contraindications: Medical reasons why step therapy drugs can't be used
  • Harm risk: Evidence that delay would worsen your condition
Tip: Include specific lab values and clinical symptoms in your exception request. Phrases like "persistent hypophosphatemia despite optimal conventional therapy" strengthen your case.

Appeals Process and Deadlines

If Aetna denies your Crysvita request, Illinois provides a structured appeals process with specific timelines.

Step-by-Step Appeals Process

  1. Internal Appeal (Required First Step)
    • Timeline: 180 days from denial date
    • Submit to: Aetna member services or provider portal
    • Include: Additional clinical documentation, peer-reviewed studies, genetic test results
  2. Expedited Appeal (If Urgent)
    • Timeline: Available immediately if delay risks health
    • Decision: Within 72 hours
    • Criteria: Progressive bone disease, dental complications, or functional decline
  3. External Review (Illinois State Right)
    • Timeline: 4 months from final internal denial
    • Cost: Free to consumers
    • Decision: Binding within 5 business days of record submission

Common Denial Reasons & Solutions

Denial Reason How to Overturn Key Documents
"Experimental/Investigational" Cite FDA approval for XLH/TIO FDA label
"Not medically necessary" Submit genetic testing + failed conventional therapy PHEX mutation results, phosphorus labs
"Non-formulary" Request formulary exception with clinical rationale Peer-reviewed efficacy studies
"Quantity limits exceeded" Provide weight-based dosing justification Prescriber dosing calculation

External Review Rights

Illinois's external review process is particularly powerful for rare disease drugs like Crysvita. In 2023, 466 out of 1,130 eligible external reviews were decided in favor of consumers.

How to Request External Review

  1. Complete internal appeals first (unless expedited)
  2. Submit request within 4 months of final denial
  3. Use official form: Illinois Department of Insurance External Review Form
  4. Mail to: Illinois Department of Insurance, 320 W. Washington Street, Springfield, IL 62767

What Happens Next

  • Assignment: Independent physician reviewer with XLH expertise
  • Timeline: 5 business days for decision after records submitted
  • Outcome: Binding decision requiring Aetna to cover if approved
From our advocates: We've seen external reviews succeed when families include a clear timeline showing progressive symptoms despite conventional therapy, along with genetic testing confirmation. The key is demonstrating that Crysvita isn't experimental but FDA-approved for your specific condition.

Practical Scripts and Templates

Patient Phone Script for Aetna

"I'm calling about prior authorization for Crysvita, generic name burosumab, for X-linked hypophosphatemia. My doctor has submitted genetic testing showing a PHEX gene mutation and documentation of failed conventional therapy. Can you tell me the status and what additional information you need?"

Medical Necessity Letter Checklist

Your provider should include:

  • Diagnosis: "Patient has genetically confirmed X-linked hypophosphatemia with pathogenic PHEX variant"
  • Prior therapy: "Failed to achieve target serum phosphorus levels despite optimal phosphate and calcitriol therapy"
  • Clinical rationale: "Burosumab is FDA-approved and represents standard of care for XLH per clinical guidelines"
  • Monitoring plan: "Will monitor serum phosphorus, calcium, and vitamin D metabolites per FDA labeling"

Cost Assistance Programs

Even with insurance approval, Crysvita can be expensive. Several programs help reduce costs:

Manufacturer Support

Foundation Assistance

  • National Organization for Rare Disorders (NORD)
  • Patient Access Network Foundation
  • Good Days (formerly Chronic Disease Fund)

When you're navigating insurance denials and appeals, having expert support can make all the difference. Counterforce Health helps patients, clinicians, and specialty pharmacies turn insurance denials into successful appeals by creating targeted, evidence-backed documentation that aligns with payer requirements and state regulations.

When to Contact Illinois Regulators

If you've exhausted appeals or need guidance, Illinois offers robust consumer assistance:

Illinois Department of Insurance

Illinois Attorney General Health Care Bureau

  • Helpline: 1-877-305-5145
  • Services: Informal intervention with insurers, consumer advocacy

When to File a Complaint

Contact regulators if Aetna:

  • Misses appeal deadlines
  • Requests inappropriate documentation
  • Denies coverage without clear medical rationale
  • Fails to follow Illinois external review decisions

FAQ

How long does Aetna prior authorization take for Crysvita in Illinois? Standard decisions take 30-45 days. Expedited requests (when delay risks health) must be decided within 72 hours.

What if Crysvita isn't on my Aetna formulary? Request a formulary exception along with your PA. Include documentation showing why covered alternatives are ineffective or inappropriate.

Can I get expedited review if my condition is worsening? Yes. Illinois allows expedited appeals when delay would "seriously jeopardize your life, health, or ability to regain maximum function."

Does genetic testing really help with approval? Absolutely. PHEX gene mutation confirmation is increasingly required by payers as the gold standard for XLH diagnosis.

What happens if external review is denied? External review decisions are binding in Illinois. If denied, explore manufacturer patient assistance programs or clinical trials.

Do Illinois Medicaid plans follow the same rules? Medicaid managed care has separate appeal procedures through HFS, but similar external review rights apply.

The appeals process can feel overwhelming, but Illinois provides strong protections for patients seeking rare disease treatments. With proper documentation and persistence, many denials can be successfully overturned. Counterforce Health specializes in creating the precise documentation needed to navigate these complex approval processes effectively.

Disclaimer: This information is for educational purposes only and does not constitute medical or legal advice. Insurance policies and state regulations may change. Always consult with your healthcare provider and insurance plan for the most current requirements and procedures.

Sources & Further Reading

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