By Counterforce Health Team in Crysvita (burosumab) —

Do You Qualify for Crysvita (Burosumab) Coverage by Aetna CVS Health in New York? Decision Tree & Next Steps

Quick Answer: To get Crysvita (burosumab) covered by Aetna CVS Health in New York, you need genetic confirmation of XLH or biochemical proof of TIO, documented failure of conventional therapy, and submission through CVS Specialty at 1-866-814-5506. Most approvals take 30-45 days with complete documentation. If denied, file an internal appeal within 180 days, then request external review through NY Department of Financial Services within 4 months.

Table of Contents

  1. How to Use This Decision Tree
  2. Eligibility Triage: Do You Qualify?
  3. If "Likely Eligible" - Your Action Plan
  4. If "Possibly Eligible" - Tests You Need
  5. If "Not Yet Eligible" - Alternative Paths
  6. If Denied - Appeal Strategy
  7. Coverage Requirements at a Glance
  8. Common Denial Reasons & Solutions
  9. New York Appeal Rights & Timeline
  10. Cost Support Options
  11. FAQ

How to Use This Decision Tree

This guide helps patients and clinicians navigate Aetna CVS Health's prior authorization process for Crysvita (burosumab) in New York. Start with the eligibility triage below to determine your approval likelihood, then follow the corresponding action plan.

Before you begin, gather:

  • Insurance card and member ID
  • Complete medical records for your condition
  • Lab results (genetic testing, serum phosphorus, FGF23)
  • Documentation of prior treatments tried and failed
  • Current prescriber information

Eligibility Triage: Do You Qualify?

✅ Likely Eligible if you have:

  • XLH patients: Genetic confirmation of PHEX mutation OR elevated FGF23 + low serum phosphorus + radiographic bone disease
  • TIO patients: Elevated FGF23 + low serum phosphorus + unresectable/unlocalized tumor
  • Age 6+ months (XLH) or 2+ years (TIO)
  • Documented failure/intolerance of conventional therapy (phosphate supplements, calcitriol)
  • Provider attestation that Crysvita won't be used with oral phosphate or active vitamin D

⚠️ Possibly Eligible if you have:

  • Clinical diagnosis but incomplete genetic/biochemical testing
  • Recent diagnosis without documented conventional therapy trial
  • Unclear tumor resectability status (TIO patients)
  • Missing recent lab work or imaging

❌ Not Yet Eligible if you have:

  • No genetic or biochemical confirmation of XLH/TIO
  • Concurrent use of oral phosphate or active vitamin D planned
  • Resectable tumor (TIO patients)
  • Age under 6 months (XLH) or under 2 years (TIO)

If "Likely Eligible" - Your Action Plan

Step 1: Document Medical Necessity

Work with your specialist to compile:

  • Diagnosis proof: Genetic test results or biochemical markers
  • Lab values: Recent serum phosphorus, FGF23, alkaline phosphatase
  • Treatment history: Detailed records of conventional therapy failures
  • Imaging: X-rays showing rickets/osteomalacia if available

Step 2: Complete Prior Authorization

Your prescriber must submit Aetna's Crysvita Precertification Form via:

  • Phone: CVS Specialty at 1-866-814-5506
  • Fax: Check current number in provider portal
  • Online: Aetna provider portal

Step 3: Track Your Request

  • Standard review: 30-45 days
  • Expedited review available for urgent cases
  • Contact CVS Specialty weekly for status updates
From our advocates: "We've seen the fastest approvals when clinics submit genetic testing, detailed treatment failure notes, and provider attestation about drug interactions all in one complete packet. Missing even one piece can delay approval by weeks."

If "Possibly Eligible" - Tests You Need

For XLH Patients Missing Documentation:

  1. Genetic testing: Order PHEX gene sequencing through sponsored testing programs
  2. Biochemical workup: FGF23, fasting serum phosphorus, TmP/GFR ratio
  3. Imaging: Bone radiographs to document rickets/osteomalacia
  4. Treatment trial: Document 3-6 months of conventional therapy if not contraindicated

For TIO Patients:

  1. Tumor localization studies: CT, MRI, or octreotide scan
  2. Surgical consultation: Document if tumor is resectable
  3. Complete biochemical panel: FGF23, phosphorus, 1,25(OH)2D

Timeline to Reapply:

  • Genetic results: 2-4 weeks
  • Biochemical testing: 1-2 weeks
  • Treatment trial documentation: 3-6 months
  • Imaging studies: 1-2 weeks

If "Not Yet Eligible" - Alternative Paths

Formulary Exception Request

If Crysvita isn't covered, request a formulary exception based on:

  • Rare disease status
  • Lack of therapeutic alternatives
  • FDA approval for your specific indication

Step Therapy Override

Document why conventional treatments are inappropriate:

  • Medical contraindications
  • Previous adverse reactions
  • Clinical ineffectiveness despite adequate trial

Compassionate Use

Contact Kyowa Kirin or Ultragenyx about patient assistance programs while pursuing coverage.

If Denied - Appeal Strategy

Level 1: Internal Appeal (File within 180 days)

Submit to Aetna:

  • Written appeal letter citing specific denial reasons
  • Additional medical documentation
  • Provider peer-to-peer review request
  • Use Aetna's appeal forms

Timeline: 30 days for standard; 72 hours for urgent

Level 2: External Review (File within 4 months)

If internal appeal fails, file with NY Department of Financial Services:

  • Form: NY External Appeal Application
  • Submit: Mail to DFS, Box 177, Albany, NY 12210 or fax (800) 332-2729
  • Timeline: 72 hours for urgent drug appeals; 30 days for standard
  • Cost: $25 maximum (waived for financial hardship)
Note: NY external appeal decisions are binding on Aetna and have a strong success rate for FDA-approved rare disease treatments.

Coverage Requirements at a Glance

Requirement XLH Patients TIO Patients Documentation Needed Source
Age 6+ months 2+ years Birth certificate/medical record FDA Label
Diagnosis PHEX mutation OR biochemical proof Elevated FGF23 + unresectable tumor Genetic test or lab results Aetna Policy
Prior Therapy Failed conventional treatment Failed conventional treatment Provider notes documenting failure Aetna Policy
Contraindications No concurrent phosphate/vitamin D No concurrent phosphate/vitamin D Provider attestation Aetna Policy
Prescriber Metabolic bone disease specialist Metabolic bone disease specialist Provider credentials Aetna Policy

Common Denial Reasons & Solutions

Denial Reason Solution Required Documentation
"Experimental/investigational" Cite FDA approval and clinical guidelines FDA approval letter, endocrine society guidelines
"Not medically necessary" Document conventional therapy failures Detailed treatment history with outcomes
"Concurrent prohibited therapy" Provide attestation of drug interaction awareness Signed provider statement
"Insufficient genetic confirmation" Submit genetic testing or biochemical markers PHEX gene test or FGF23 levels
"Age restriction" Verify patient age meets criteria Birth certificate, medical records

New York Appeal Rights & Timeline

New Yorkers have strong protections for insurance appeals. If Aetna denies Crysvita coverage:

Internal Appeal Process

  • Deadline: 180 days from denial notice
  • Timeline: 30 days for standard review; 72 hours for urgent
  • Submit: Via Aetna member portal or mail

External Appeal Process

  • Deadline: 4 months after final internal denial
  • Timeline: 24-72 hours for urgent drug appeals; 30 days standard
  • Authority: NY Department of Financial Services
  • Decision: Binding on Aetna

Getting Help

Community Health Advocates provides free appeal assistance:

  • Helpline: 888-614-5400 (Monday-Friday, 9 AM-4 PM)
  • Services: Appeal letter drafting, deadline tracking, document gathering
  • Coverage: All 62 New York counties

Cost Support Options

Manufacturer Programs

  • Kyowa Kirin Patient Support: Financial assistance for eligible patients
  • Ultragenyx ULTRA+ Program: Copay assistance and free drug programs

Foundation Support

  • National Organization for Rare Disorders (NORD): Emergency financial assistance
  • Patient Access Network (PAN): Copay assistance for rare diseases

State Programs

  • New York State of Health: Premium subsidies for marketplace plans
  • Medicaid: Coverage for qualifying low-income patients

When navigating complex insurance requirements, Counterforce Health helps patients and clinicians turn insurance denials into targeted, evidence-backed appeals. Their platform ingests denial letters and plan policies to draft point-by-point rebuttals aligned to payer requirements, increasing approval success rates for specialty medications like Crysvita.

FAQ

Q: How long does Aetna CVS Health PA take in New York? A: Standard prior authorization takes 30-45 days. Expedited reviews for urgent cases are completed within 72 hours.

Q: What if Crysvita is non-formulary on my plan? A: Request a formulary exception using Aetna's medical exception form. Provide documentation of medical necessity and lack of alternatives.

Q: Can I request an expedited appeal in New York? A: Yes. If delay would seriously jeopardize your health, request expedited review. NY requires decisions within 24 hours for urgent drug appeals.

Q: Does step therapy apply if I failed treatments outside New York? A: Yes. Document all prior therapy failures regardless of where treatment occurred. Aetna accepts out-of-state treatment records.

Q: What if my genetic testing is negative but I have clinical XLH? A: Submit biochemical evidence (elevated FGF23, low serum phosphorus) plus radiographic findings. Some patients have clinical XLH without detectable PHEX mutations.

Q: How much will Crysvita cost with Aetna coverage? A: Costs vary by plan. Specialty tier drugs typically have 20-40% coinsurance. Contact CVS Specialty at 1-866-814-5506 for specific benefit verification.

For personalized guidance on your Crysvita approval journey, Counterforce Health offers specialized support in navigating payer requirements and crafting successful appeals for rare disease medications.

Sources & Further Reading

Disclaimer: This guide provides educational information only and is not medical advice. Coverage policies change frequently. Always verify current requirements with Aetna CVS Health and consult your healthcare provider for medical decisions. For assistance with appeals and coverage issues, contact Community Health Advocates at 888-614-5400 or the NY Department of Financial Services at 1-800-342-3736.

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