By Counterforce Health Team in Dojolvi (triheptanoin) —

How to Get Dojolvi (Triheptanoin) Covered by Aetna CVS Health in Illinois: Complete Appeals Guide and Required Documentation

Answer Box: Getting Dojolvi Covered by Aetna CVS Health in Illinois

Aetna CVS Health requires prior authorization for Dojolvi (triheptanoin) as it's not on standard formularies. Success requires molecular confirmation of LC-FAOD, specialist prescription, and documented MCT oil discontinuation. First step today: Contact your metabolic specialist to gather genetic test results and initiate the prior authorization through Aetna's provider portal. If denied, Illinois residents have strong appeal rights including binding external review within 4 months of denial. Timeline: 30 days for standard PA decisions, 180 days for internal appeals, then external review through the Illinois Department of Insurance.

Table of Contents

  1. Understanding Your Denial Letter
  2. Required Documentation for Approval
  3. Step-by-Step: Fastest Path to Approval
  4. Common Denial Reasons & How to Fix Them
  5. Appeals Process in Illinois
  6. Templates and Scripts
  7. Illinois External Review Rights
  8. Cost Assistance Programs
  9. When to Escalate
  10. FAQ

Understanding Your Denial Letter

When Aetna CVS Health denies Dojolvi, the denial letter will specify the exact reason. Common denial codes include:

  • Prior authorization required - The medication needs pre-approval
  • Non-formulary - Dojolvi isn't on their preferred drug list
  • Medical necessity not established - Missing clinical documentation
  • Step therapy required - Must try other treatments first
  • Concurrent therapy - Using MCT oil alongside Dojolvi

Look for these critical details in your denial:

  • Member ID and group number
  • Denial date (starts your appeal clock)
  • Specific denial reason code
  • Appeal deadline (typically 180 days)
  • Phone number for questions
Tip: Take a photo of the entire denial letter. You'll need to reference specific language when appealing.

Required Documentation for Approval

Aetna CVS Health requires comprehensive documentation for Dojolvi approval. Here's what you need:

Molecular Confirmation

  • Genetic testing results showing pathogenic mutations in CPT2, ACADVL, HADHA, or HADHB genes
  • Laboratory reports confirming LC-FAOD diagnosis
  • Biochemical confirmation of specific gene variants

Specialist Involvement

  • Prescription from board-certified metabolic geneticist, pediatric endocrinologist, or metabolic disease specialist
  • Specialist consultation notes detailing diagnosis and treatment history
  • Medical necessity letter addressing the specific denial reason

Prior Treatment Documentation

  • Complete history of dietary management attempts
  • MCT oil trial records with dates, doses, and outcomes
  • Documentation of MCT oil discontinuation with specific dates
  • Evidence of inadequate response or intolerance to standard therapy

Clinical Justification

  • Current symptoms and metabolic status
  • Dosing calculations based on daily caloric intake (up to 35% permitted)
  • Treatment goals and monitoring plan
  • Risk assessment if treatment is delayed

Step-by-Step: Fastest Path to Approval

1. Contact Your Specialist (Day 1)

Who: Patient or caregiver
Action: Call your metabolic specialist's office
Documents needed: Insurance card, recent labs
Timeline: Same day

2. Gather Required Records (Days 1-3)

Who: Specialist's office
Action: Compile genetic testing, prior treatments, current status
Documents needed: All items from Required Documentation section
Timeline: 1-3 business days

3. Submit Prior Authorization (Day 4)

Who: Prescribing physician
Action: Complete Aetna's precertification form via provider portal
Timeline: Same day submission
Source: Aetna Provider Portal

4. Enroll with CVS Specialty (Days 4-5)

Who: Patient
Action: Contact CVS Specialty Pharmacy at 1-800-237-2767
Timeline: 24-48 hours

5. Track Decision (Days 5-35)

Who: Patient and provider
Action: Monitor via provider portal and member services
Timeline: 30 days standard, 72 hours if expedited

6. Appeal if Denied (Within 180 days)

Who: Patient or authorized representative
Action: File internal appeal with additional documentation
Timeline: 30 days for decision

7. External Review if Needed (Within 4 months)

Who: Patient
Action: File with Illinois Department of Insurance
Timeline: 45 days for decision
Source: Illinois DOI External Review

Common Denial Reasons & How to Fix Them

Denial Reason Solution Required Documents
Missing molecular confirmation Submit genetic test results Lab reports showing pathogenic mutations
Lack of specialist involvement Get metabolic specialist prescription Board certification, consultation notes
Insufficient prior therapy trials Document MCT oil trials Treatment dates, doses, outcomes
Non-formulary status Request formulary exception Medical necessity letter
Concurrent MCT therapy Provide discontinuation attestation Specialist letter with specific dates
Quantity limits exceeded Justify dosing calculations Weight-based caloric needs documentation

Appeals Process in Illinois

Illinois residents have robust appeal rights when Aetna CVS Health denies coverage:

Internal Appeals

  • Deadline: 180 days from denial date
  • Process: Submit via Aetna member portal, fax, or mail
  • Timeline: 30 days for standard review, 24 hours if expedited
  • Required: Original denial letter, medical records, specialist letter

Expedited Appeals

Available when delay could seriously harm your health:

  • Timeline: 72 hours for decision
  • Eligibility: Metabolic crisis risk, current therapy interruption
  • Process: Provider must attest to urgency

External Review Rights

If internal appeals fail, Illinois law guarantees independent review:

  • Deadline: 4 months from final internal denial
  • Process: File with Illinois Department of Insurance
  • Timeline: 45 days standard, 72 hours expedited
  • Cost: Free to patients
  • Outcome: Binding on Aetna if approved

Contact for External Review: Illinois Department of Insurance at (866) 445-5364

Counterforce Health specializes in turning insurance denials into targeted, evidence-backed appeals. The platform helps patients and clinicians navigate complex prior authorization requirements by identifying denial reasons and drafting point-by-point rebuttals aligned to each plan's specific policies and procedures.

Templates and Scripts

Patient Phone Script for Aetna

"Hello, I'm calling about a prior authorization denial for Dojolvi for my LC-FAOD. My member ID is [ID]. Can you tell me the specific reason for denial and what additional documentation you need? I'd also like to request a peer-to-peer review between my metabolic specialist and your medical director."

Medical Necessity Letter Template

Opening: "I am writing to appeal the denial of Dojolvi (triheptanoin) for [patient name], who has molecularly confirmed long-chain fatty acid oxidation disorder. This FDA-approved medication represents the only specific therapeutic intervention for this rare metabolic condition."

Clinical Justification: Include specific genetic mutation, prior treatment failures, current symptoms, and risk of metabolic crisis without treatment.

Closing: "Delay in treatment could result in serious complications including cardiomyopathy and metabolic decompensation. I request immediate approval of this medically necessary therapy."

Peer-to-Peer Request Script for Clinic Staff

"I'm calling to schedule a peer-to-peer review for a Dojolvi denial. The prescriber is Dr. [Name], board-certified in [specialty]. The patient has confirmed LC-FAOD with [specific mutation]. We have genetic testing and prior treatment documentation ready to discuss."

Illinois External Review Rights

Illinois has strengthened external review protections effective 2025. Key benefits include:

Binding Decisions

External review decisions are legally binding on Aetna CVS Health, with penalties up to $50,000 for non-compliance.

No Cost to Patients

Illinois insurers pay all external review costs. Patients cannot be charged fees or see premium increases for using external review.

Fast Timelines

  • Standard: 45 days from request to decision
  • Expedited: 72 hours for urgent situations
  • Assignment: Independent Review Organization selected within 1 business day

Strong Protections

  • Seven-day review operations (no weekend delays)
  • Concurrent review for ongoing treatment within 24 hours
  • Specialized counselors available to help navigate the process

To File External Review: Contact Illinois Department of Insurance Office of Consumer Health Insurance at (877) 527-9431 or visit idoi.illinois.gov.

Cost Assistance Programs

While pursuing coverage, explore these cost assistance options:

Manufacturer Support

Ultragenyx Patient Access Program

  • Copay assistance for eligible patients
  • Free drug programs for uninsured/underinsured
  • Case management support
  • Contact: 1-833-887-2436

Foundation Grants

  • Patient Access Network Foundation
  • National Organization for Rare Disorders (NORD)
  • HealthWell Foundation

State Programs

Illinois residents may qualify for additional assistance through state pharmaceutical assistance programs. Contact the Illinois Department of Healthcare and Family Services for Medicaid options.

When to Escalate

If standard appeals aren't working, escalate to regulators:

Illinois Department of Insurance

Office of Consumer Health Insurance (OCHI)

When to File: After exhausting internal appeals or if Aetna violates appeal timelines

Illinois Attorney General

Health Care Helpline: 1-877-305-5145

  • Can intervene informally with insurers
  • Helps with complex rare disease cases
  • Assists in gathering supporting evidence

Documentation for Complaints

Include all correspondence, denial letters, appeal submissions, and timeline violations when filing regulatory complaints.

FAQ

How long does Aetna CVS Health prior authorization take in Illinois? Standard decisions take 30 days from complete submission. Expedited reviews are completed within 72 hours for urgent situations.

What if Dojolvi is non-formulary on my plan? Request a formulary exception with medical necessity documentation. Emphasize that Dojolvi is the only FDA-approved treatment for LC-FAOD.

Can I request an expedited appeal? Yes, if delay could seriously harm your health. Your provider must attest to the urgency, such as risk of metabolic crisis or current therapy interruption.

Does step therapy apply if I tried MCT oil outside Illinois? Treatment history from any state counts. Provide documentation of prior MCT oil trials regardless of where they occurred.

What happens if my external review is approved? The decision is binding on Aetna CVS Health. They must provide coverage and cannot appeal the decision.

How much does Dojolvi cost without insurance? Cash prices typically range from $5,857-$6,365 per 500-mL bottle. Contact Ultragenyx about patient assistance programs.

Can I get help navigating the appeals process? Yes. Counterforce Health helps patients and clinicians create targeted appeals based on each insurer's specific requirements. Illinois also provides consumer assistance through OCHI at (877) 527-9431.

What if Aetna requires step therapy with other treatments? LC-FAOD has no therapeutic alternatives to Dojolvi. Document that it's the only FDA-approved treatment and request step therapy override based on lack of suitable alternatives.

From our advocates: We've seen cases where genetic testing was initially submitted without the specific mutation details Aetna required. When families resubmitted with comprehensive molecular testing reports clearly showing pathogenic variants, approvals came through within two weeks. The key is ensuring your genetic testing documentation explicitly states the specific LC-FAOD gene mutation rather than just confirming the diagnosis.

Sources & Further Reading

Disclaimer: This guide provides general information about insurance coverage processes and should not be considered medical or legal advice. Always consult with your healthcare provider about treatment decisions and contact Illinois insurance regulators or legal counsel for specific coverage disputes. Coverage policies and requirements may change; verify current information with your insurer and state resources.

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