By Counterforce Health Team in Crysvita (burosumab) —

Myths vs. Facts: Getting Crysvita (burosumab) Covered by Cigna in New York

Answer Box: Getting Crysvita (burosumab) Covered by Cigna in New York

Fact: Cigna covers Crysvita for XLH and TIO when prior authorization criteria are met, including specialist oversight and documented failure/contraindication to conventional therapy. Fastest path: Have your endocrinologist submit a complete PA with genetic/lab evidence, prior therapy history, and treatment plan through Cigna's provider portal. Start today: Gather your insurance card, recent labs (serum phosphate, FGF23), and documentation of previous treatments. If denied, New York's external appeal process through the Department of Financial Services has a 30-50% overturn rate for specialty drug cases.

Table of Contents

  1. Why Myths About Crysvita Coverage Persist
  2. Common Myths vs. Facts
  3. What Actually Influences Approval
  4. Avoid These Preventable Mistakes
  5. Your 3-Step Action Plan
  6. Appeals Process in New York
  7. Resources and Support

Why Myths About Crysvita Coverage Persist

Crysvita (burosumab) coverage myths spread because rare disease treatments like this one involve complex insurance processes that most patients and even some providers encounter infrequently. With an annual cost that can exceed $300,000, insurers have strict utilization management protocols. Add to this the fact that X-linked hypophosphatemia (XLH) and tumor-induced osteomalacia (TIO) are uncommon conditions, and it's easy to see why misinformation flourishes.

The reality is that Cigna, like most major insurers, does cover Crysvita when medical necessity criteria are met—but the approval process requires careful documentation and understanding of specific requirements.

Common Myths vs. Facts

Myth #1: "If my endocrinologist prescribes Crysvita, Cigna automatically covers it"

Fact: Prior authorization is mandatory for all Cigna plans. Even with a specialist prescription, you'll need documented evidence of XLH or TIO diagnosis, failure or contraindication to conventional therapy (oral phosphate and vitamin D), and compliance with age requirements (≥6 months for XLH, ≥2 years for TIO). Your endocrinologist must submit detailed clinical documentation through Cigna's precertification process.

Myth #2: "Crysvita is only covered for children"

Fact: Both adults and children can receive coverage. Cigna's policy covers pediatric patients ≥6 months and adults with XLH, and patients ≥2 years with TIO. Adult coverage requires documented inadequate response or contraindications to conventional therapy with oral phosphate and active vitamin D analogues.

Myth #3: "Generic alternatives work just as well and are easier to get covered"

Fact: There are no generic alternatives to Crysvita. The conventional therapy that insurers require you to try first—oral phosphate supplements and active vitamin D (calcitriol)—works differently and often inadequately for many patients. Crysvita targets the underlying FGF23 pathway, while conventional therapy only addresses symptoms. This is why step therapy requirements exist, but also why appeals often succeed when conventional therapy fails.

Myth #4: "Cigna never covers expensive rare disease drugs"

Fact: Cigna covers many high-cost specialty medications, including Crysvita, when medical necessity is established. However, they do have strict prior authorization requirements and utilization management protocols. In New York, external appeals for specialty drug denials have overturn rates of 30-50%, indicating that many initial denials are overturned when proper documentation is provided.

Myth #5: "You can take Crysvita with your current phosphate and vitamin D supplements"

Fact: This is dangerous and will result in coverage denial. Crysvita is contraindicated with concurrent use of oral phosphate and active vitamin D due to hyperphosphatemia risk. These medications must be discontinued at least one week before starting Crysvita, and this discontinuation must be documented in your prior authorization request.

Myth #6: "If Cigna denies coverage, there's nothing you can do"

Fact: New York has robust appeal rights. After exhausting Cigna's internal appeals, you can file an external appeal with the New York State Department of Financial Services within 4 months. The external review is conducted by independent medical experts, and their decisions are binding on Cigna.

Myth #7: "Uninsured patients can't access Crysvita"

Fact: The manufacturer offers patient assistance programs through Kyowa Kirin Cares for eligible uninsured and underinsured patients. Additionally, organizations like NORD and the XLH Network provide resources for financial assistance and insurance navigation.

What Actually Influences Approval

Understanding what Cigna actually looks for in prior authorization requests can dramatically improve your chances of approval:

Required Documentation Checklist

Diagnosis Confirmation:

  • Genetic testing showing PHEX mutation (preferred for XLH)
  • Elevated serum FGF23 levels with reference ranges
  • Persistently low fasting serum phosphate below age-adjusted normal
  • For TIO: Documentation of tumor location and unresectable status

Specialist Oversight:

  • Prescription from endocrinologist, metabolic bone specialist, or nephrologist
  • Clinical notes documenting XLH/TIO signs and symptoms
  • Treatment plan with monitoring schedule

Step Therapy Documentation:

  • Detailed history of failed or insufficient response to oral phosphate and calcitriol
  • Documentation of contraindications if conventional therapy cannot be tried
  • Attestation that phosphate and vitamin D will be discontinued before Crysvita

Administrative Requirements:

  • Patient age ≥6 months (XLH) or ≥2 years (TIO)
  • Confirmation of specialty pharmacy dispensing through Cigna's network
  • Weight-based dosing plan per FDA guidelines

At Counterforce Health, we help patients and providers navigate these complex requirements by creating targeted, evidence-backed appeals that address each payer's specific criteria.

Avoid These Preventable Mistakes

1. Incomplete Genetic Documentation

Many denials occur because genetic testing results aren't properly submitted or documented. Ensure PHEX mutation results are clearly stated in the PA request, not just referenced.

2. Concurrent Phosphate/Vitamin D Use

Never request Crysvita while the patient is still taking oral phosphate or active vitamin D. Document the washout period and discontinuation date.

3. Wrong Specialty Pharmacy

Cigna requires Crysvita to be dispensed through their designated specialty pharmacy network (typically Accredo). Requests specifying other pharmacies will be denied.

4. Insufficient Prior Therapy Documentation

Vague statements like "failed conventional therapy" aren't enough. Provide specific details: doses tried, duration of treatment, specific reasons for failure or intolerance, and lab values showing inadequate response.

5. Missing Monitoring Plan

Include a detailed plan for serum phosphate monitoring and dose adjustments. Cigna wants to see that the prescribing physician understands proper monitoring requirements.

Your 3-Step Action Plan

Step 1: Gather Essential Documentation (Do This Today)

  • Insurance card and member ID
  • Recent lab results (serum phosphate, FGF23, vitamin D levels)
  • Genetic testing results (if available)
  • Documentation of previous treatments and outcomes
  • Contact information for your endocrinologist or metabolic bone specialist

Step 2: Work with Your Specialist

Schedule an appointment with your endocrinologist to:

  • Review Cigna's specific prior authorization requirements
  • Ensure all necessary documentation is complete
  • Plan the transition from conventional therapy to Crysvita
  • Submit the PA through Cigna's provider portal

Step 3: Prepare for Potential Appeals

  • Keep copies of all submitted documentation
  • Understand Cigna's internal appeal timeline (typically 30 days for standard, 72 hours for expedited)
  • Research New York's external appeal process as a backup plan
  • Connect with patient advocacy resources for support

Appeals Process in New York

If Cigna denies your Crysvita prior authorization, New York offers multiple avenues for appeal:

Internal Appeals with Cigna

  • Standard appeals: 180-day window to file, 30-day decision timeline
  • Expedited appeals: For urgent medical needs, 72-hour decision timeline
  • Second-level internal review: Available if first appeal is denied

External Appeals Through New York DFS

  • Eligibility: Available after exhausting Cigna's internal appeals
  • Timeline: Must file within 4 months of final internal denial
  • Process: Independent medical review by external experts
  • Cost: Maximum $25 filing fee (waived for financial hardship or Medicaid)
  • Success rate: 30-50% overturn rate for specialty drug cases
From our advocates: We've seen cases where initial Crysvita denials were overturned on external appeal when families provided comprehensive documentation of failed conventional therapy and cited recent clinical guidelines. The key was demonstrating that continued denial would result in progressive bone disease and fractures—making the medical necessity clear to independent reviewers.

For free assistance with appeals, contact Community Health Advocates at 888-614-5400.

Resources and Support

Patient Advocacy Organizations

  • XLH Network: Disease-specific support and insurance navigation
  • NORD (National Organization for Rare Disorders): Financial assistance resources
  • Global Genes: Rare disease advocacy and education

Financial Assistance

  • Kyowa Kirin Cares: Manufacturer patient assistance program
  • Commercial co-pay assistance: Available for eligible patients with commercial insurance
  • Foundation grants: Various rare disease foundations offer medication assistance

Professional Resources

Organizations like Counterforce Health specialize in turning insurance denials into successful appeals by providing evidence-based documentation that addresses specific payer requirements and clinical guidelines.

Official Forms and Policies

Sources & Further Reading

This information is for educational purposes only and does not constitute medical advice. Always consult with your healthcare provider and insurance company for the most current coverage policies and medical guidance. For questions about New York insurance regulations, contact the New York State Department of Financial Services.

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