By Counterforce Health Team in Crysvita (burosumab) —

Work With Your Doctor to Get Crysvita (burosumab) Covered by Aetna (CVS Health) in Pennsylvania: Complete Provider Collaboration Guide

Quick Answer: Your Path to Crysvita Coverage

Getting Crysvita (burosumab) covered by Aetna (CVS Health) in Pennsylvania requires close collaboration with your endocrinologist or nephrologist to document X-linked hypophosphatemia (XLH) diagnosis and failed conventional therapy. The fastest path: (1) gather complete diagnostic records (genetic testing, low serum phosphorus, radiographic evidence), (2) document oral phosphate/vitamin D trial failures, and (3) have your specialist submit Aetna's Crysvita precertification form with a detailed medical necessity letter. If denied, Pennsylvania's new external review program has overturned about 50% of denials in its first year.

Table of Contents

  1. Set Your Goal: What Approval Requires
  2. Visit Preparation: Building Your Clinical Story
  3. Evidence Kit: Labs, Imaging, and Documentation
  4. Medical Necessity Letter Structure
  5. Peer-to-Peer Review Support
  6. After-Visit Documentation
  7. Respectful Persistence and Follow-Up
  8. Pennsylvania Appeals Process
  9. Cost Support and Resources
  10. FAQ

Set Your Goal: What Approval Requires

Your partnership with your doctor centers on meeting Aetna's specific Crysvita criteria. Here's what you're working toward together:

Core Requirements Table

Requirement What It Means Your Role Provider's Role
Confirmed XLH diagnosis PHEX gene mutation or elevated FGF23 with clinical features Provide family history, symptom timeline Order genetic testing, interpret labs
Failed conventional therapy Tried oral phosphate + active vitamin D for ≥3 months Document side effects, lack of improvement Chart treatment history, outcomes
Baseline labs Low serum phosphorus, elevated alkaline phosphatase Fast before labs if requested Order comprehensive metabolic panel
Radiographic evidence X-rays showing rickets, osteomalacia, or deformities Bring prior imaging records Order appropriate skeletal imaging
Specialist prescriber Endocrinologist or nephrologist with XLH experience Choose qualified provider Complete precertification form
Note: Aetna requires prior authorization for Crysvita on most commercial and exchange plans in Pennsylvania.

Visit Preparation: Building Your Clinical Story

Your preparation directly impacts your doctor's ability to build a compelling case for medical necessity.

Symptom Timeline Documentation

Create a written timeline including:

  • Childhood symptoms: Bowed legs, short stature, dental problems, fractures
  • Current symptoms: Bone pain, joint stiffness, muscle weakness, mobility limitations
  • Functional impact: Work/school limitations, need for assistive devices, surgical interventions
  • Family history: Relatives with similar symptoms, known XLH diagnoses

Treatment History Summary

Document every therapy you've tried:

  1. Oral phosphate supplements
    • Brand names, doses, duration
    • Side effects (GI upset, diarrhea, nausea)
    • Lab results showing persistent low phosphorus
  2. Active vitamin D analogs (calcitriol, alfacalcidol)
    • Doses and duration
    • Side effects (hypercalcemia, kidney stones, hyperparathyroidism)
    • Reasons for discontinuation
  3. Supportive treatments
    • Physical therapy, orthopedic interventions
    • Pain medications and effectiveness
    • Dental treatments for abscesses or complications
Tip: Bring prescription bottles, pharmacy records, and any lab reports showing treatment failures to your appointment.

Evidence Kit: Labs, Imaging, and Documentation

Work with your provider to assemble comprehensive evidence that directly addresses Aetna's criteria.

Essential Laboratory Tests

Your doctor will likely order:

  • Fasting serum phosphorus (below age-adjusted normal range)
  • Alkaline phosphatase (elevated, indicating bone disease)
  • FGF23 level (elevated or inappropriately normal for phosphorus level)
  • Calcium, PTH, 25-OH vitamin D (to exclude other causes)
  • Creatinine and eGFR (kidney function assessment)

Genetic Testing Coordination

If not already done:

  • PHEX gene sequencing confirms XLH diagnosis
  • Many insurance plans cover genetic testing when medically indicated
  • Results typically take 2-8 weeks
  • Kyowa Kirin Cares may offer sponsored testing for eligible patients

Imaging Documentation

Your provider will assess:

  • Skeletal X-rays: wrists, knees, ankles (children); spine, pelvis (adults)
  • DEXA scan: bone density assessment if indicated
  • Previous imaging: bring all prior X-rays and reports showing disease progression

Medical Necessity Letter Structure

Your provider can use Kyowa Kirin's medical necessity template as a starting point. Here's how you can support the key sections:

Patient Background Section

  • Your input: Detailed symptom history, functional limitations
  • Provider documentation: Growth charts (children), fracture history, surgical interventions

Clinical Rationale Section

  • Your input: Why conventional therapy failed or caused intolerable side effects
  • Provider documentation: Objective evidence of treatment failure (persistent lab abnormalities, radiographic progression)

Medical Necessity Justification

  • Your input: Impact on daily activities, work/school performance, quality of life
  • Provider documentation: Alignment with FDA labeling, clinical guidelines, Aetna's specific policy requirements
From our advocates: Successful appeals often include a clear before-and-after comparison showing how conventional therapy was inadequate despite appropriate dosing and duration. Patients who document specific functional limitations (walking distance, pain scores, missed work days) tend to have stronger cases than those relying solely on lab values.

Peer-to-Peer Review Support

If your initial prior authorization is denied, your doctor can request a peer-to-peer discussion with an Aetna medical director.

How You Can Help

Before the call:

  • Provide a one-page summary of your case highlighting:
    • Confirmed XLH diagnosis (genetic or biochemical)
    • Specific conventional therapy failures
    • Current functional limitations
    • Urgency factors (progressive deformity, fracture risk)

During the call preparation:

  • Be available for questions about symptom history
  • Provide exact dates of previous treatments
  • Clarify any insurance coverage details (plan type, member ID)

Key Points for Your Provider to Emphasize

  1. Diagnostic certainty: "Patient has confirmed XLH with [PHEX mutation/elevated FGF23/classic biochemical profile]"
  2. Treatment failure: "Despite 6 months of oral phosphate and calcitriol, serum phosphorus remained at [specific value] with persistent [symptoms]"
  3. Medical necessity: "Delay in appropriate therapy risks [specific complications like progressive deformity, fractures]"
  4. Policy compliance: "Patient meets all criteria in Aetna's burosumab policy section [specific reference]"

After-Visit Documentation

Maintain organized records to support ongoing authorization and potential appeals.

What to Save

  • Prior authorization submission: Copy of completed forms and attachments
  • Lab reports: All baseline and monitoring labs with normal reference ranges
  • Imaging reports: Radiologist interpretations highlighting XLH-related findings
  • Treatment timeline: Documented conventional therapy trials with outcomes
  • Communication logs: Dates of calls to Aetna, reference numbers, representative names

Portal Communication Tips

  • Use your patient portal to message your provider about:
    • Insurance communication updates
    • New symptoms or functional changes
    • Questions about monitoring requirements
  • Keep messages concise and include specific questions
  • Request copies of all letters sent to insurance companies

Respectful Persistence and Follow-Up

Authorization decisions typically take 30-45 days for standard review, but you can help ensure timely processing.

Patient Follow-Up Schedule

  • Week 1: Confirm your provider submitted complete documentation
  • Week 3: Contact Aetna member services to verify receipt and processing status
  • Week 5: If no decision, request expedited review if clinically appropriate
  • Week 6+: Prepare for potential appeal if denied

How to Escalate Politely

  1. Document everything: Keep detailed logs of all communications
  2. Request supervisors: If initial representatives can't help, ask for escalation
  3. Use medical urgency: Emphasize time-sensitive nature of bone disease progression
  4. Involve your provider: Ask your doctor's office to follow up directly with utilization management
Counterforce Health helps patients navigate complex insurance denials by turning denial letters into targeted, evidence-backed appeals. Their platform analyzes payer-specific policies and creates point-by-point rebuttals that align with each plan's own rules. Visit www.counterforcehealth.org to learn more about their approach to insurance advocacy.

Pennsylvania Appeals Process

Pennsylvania's new external review program offers strong patient protections if your initial authorization is denied.

Internal Appeals (Required First Step)

  • Timeline: Must file within 180 days of denial notice
  • Process: Submit appeal through Aetna provider portal or by fax
  • Documentation: Include updated medical records, specialist letters, treatment history
  • Decision timeframe: 30 days standard, 72 hours for expedited appeals

Pennsylvania External Review

After exhausting internal appeals:

  • Eligibility: Available for medical necessity denials on state-regulated plans
  • Timeline: 4 months to request after final internal denial
  • Success rate: Approximately 50% of appeals overturned in program's first year
  • Process: Submit through Pennsylvania Insurance Department online portal
  • Cost: Free to patients

When to Request Expedited Review

  • Progressive bone deformity requiring intervention
  • Fracture risk with mobility limitations
  • Growth failure in children
  • Severe pain affecting daily function

Cost Support and Resources

Even with insurance coverage, Crysvita can have significant out-of-pocket costs.

Manufacturer Support Programs

  • Kyowa Kirin Cares: Copay assistance, free drug programs, case management
  • Prior authorization support: Dedicated team to help with insurance submissions
  • Appeal assistance: Templates and guidance for denied cases

Additional Financial Resources

  • State pharmaceutical assistance programs: Check Pennsylvania-specific options
  • Foundation grants: Organizations supporting rare disease patients
  • Specialty pharmacy programs: CVS Specialty may offer payment plans

FAQ

How long does Aetna (CVS Health) prior authorization take in Pennsylvania? Standard decisions typically take 30-45 days from receipt of complete documentation. Expedited reviews are decided within 72 hours when medical urgency is documented.

What if Crysvita is non-formulary on my plan? Your provider can request a formulary exception by documenting that formulary alternatives are ineffective or contraindicated for XLH. This requires additional clinical justification.

Can I start treatment while appeals are pending? Kyowa Kirin Cares may provide bridge therapy for eligible patients during insurance reviews. Discuss this option with your provider.

Does step therapy apply if I failed treatments outside Pennsylvania? Yes, documented treatment failures from other states typically satisfy step therapy requirements. Ensure your provider includes complete treatment records in the authorization request.

What happens if external review overturns the denial? Aetna must provide coverage immediately, including retroactive coverage if you paid out-of-pocket during the appeal process.

How often do I need reauthorization? Most approvals are for 6-12 months initially, with annual renewals requiring updated labs and clinical response documentation.

Disclaimer: This information is for educational purposes only and is not medical advice. Coverage policies vary by plan type and may change. Always verify current requirements with your specific Aetna (CVS Health) plan and consult your healthcare provider for medical decisions.

For additional help with insurance appeals in Pennsylvania, contact the Pennsylvania Insurance Department or visit their external review website for current forms and procedures.

Sources & Further Reading

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