By Counterforce Health Team in Tegsedi (inotersen) —

Work With Your Doctor to Get Tegsedi (inotersen) Covered by Blue Cross Blue Shield in New York: Complete Prior Authorization and Appeals Guide

Answer Box: Getting Tegsedi Covered by Blue Cross Blue Shield in New York

Eligibility: Tegsedi (inotersen) requires prior authorization from Blue Cross Blue Shield for hATTR polyneuropathy in adults. You must be enrolled in the REMS program with regular lab monitoring.

Fastest Path: Work with your neurologist to submit complete documentation including genetic testing, baseline functional scores (mNIS+7, PND ≤ IIIb), and REMS enrollment through the Blue Cross Blue Shield provider portal.

First Step Today: Call your doctor's office to schedule a comprehensive hATTR evaluation and request they begin gathering your genetic testing results and treatment history for the prior authorization submission.

Table of Contents

  1. Set Your Goal: What Approval Requires
  2. Visit Prep: Building Your Case
  3. Evidence Kit: Documentation Checklist
  4. Medical Necessity Letter Structure
  5. Peer-to-Peer Support
  6. After-Visit Follow-Up
  7. Appeals Process in New York
  8. Cost Savings Options

Set Your Goal: What Approval Requires

Getting Tegsedi (inotersen) approved by Blue Cross Blue Shield in New York requires a partnership between you and your healthcare team. Your doctor needs specific documentation to prove medical necessity, while you'll help gather records and navigate the process.

Coverage Requirements at a Glance

Requirement What It Means Where to Find It
Prior Authorization Must get approval before treatment BCBS NY Provider Portal
REMS Enrollment Safety monitoring program FDA-required before first dose
Genetic Testing TTR gene mutation confirmed CLIA-certified lab report
Functional Assessment PND score ≤ IIIb required Neurologist evaluation
Specialist Evaluation Neurologist or amyloidosis expert Required for all submissions
Age Requirement 18+ years old Standard across all BCBS plans

Your Role in the Process

You're not just a passive patient—you're an active partner. Your job is to:

  • Provide complete medical history and symptom timeline
  • Gather records from previous doctors
  • Track appointments and deadlines
  • Communicate clearly with your care team
  • Follow up on submitted requests
Tip: Start a dedicated folder (physical or digital) for all Tegsedi-related documents. You'll reference these throughout the approval process.

Visit Prep: Building Your Case

Before your appointment, prepare a comprehensive overview of your condition and treatment journey. This preparation makes your visit more productive and ensures nothing important gets missed.

Symptom Timeline Documentation

Create a detailed timeline of your hATTR polyneuropathy symptoms:

Early Symptoms (document when they started):

  • Tingling or numbness in hands/feet
  • Pain or burning sensations
  • Weakness in arms/legs
  • Balance problems
  • Digestive issues

Progression Notes:

  • How symptoms have worsened over time
  • Impact on daily activities (walking, writing, work)
  • Sleep disruption or pain levels
  • Any emergency room visits or hospitalizations

Previous Treatments and Outcomes

Document every treatment you've tried:

  • Medications: Names, doses, duration, why stopped
  • Side effects: Specific reactions or intolerances
  • Effectiveness: What worked partially, what didn't help
  • Other therapies: Physical therapy, pain management, supplements
From our advocates: Patients who come prepared with a one-page treatment summary often get faster approvals. Include specific reasons why each previous therapy failed—this strengthens the medical necessity case for Tegsedi.

Functional Impact Assessment

Prepare to discuss how hATTR polyneuropathy affects your life:

  • Work limitations or disability status
  • Mobility challenges (walking distance, stairs, balance)
  • Hand function (writing, buttoning clothes, cooking)
  • Social activities you've had to stop
  • Family impact and caregiving needs

Evidence Kit: Documentation Checklist

Work with your doctor's office to gather these essential documents before submitting your prior authorization:

Required Medical Records

Genetic Testing Results:

  • CLIA-certified lab report showing pathogenic TTR mutation
  • Specific variant identified (e.g., V122I, T60A)
  • Date of testing and laboratory name

Baseline Assessments:

  • Modified Neuropathy Impairment Score (mNIS+7)
  • Polyneuropathy Disability (PND) score ≤ IIIb
  • 6-Minute Walk Test results
  • Nerve conduction studies

Laboratory Values:

  • Complete blood count with platelets
  • Comprehensive metabolic panel
  • Liver function tests
  • Urinalysis with protein-to-creatinine ratio

Supporting Documentation

Specialist Consultation Notes:

  • Neurologist or amyloidosis specialist evaluation
  • Confirmation of hATTR polyneuropathy diagnosis
  • Assessment of disease progression
  • Treatment recommendations

Imaging Studies (if available):

  • Cardiac imaging showing amyloid deposits
  • Any other relevant diagnostic studies

Medical Necessity Letter Structure

Your doctor's medical necessity letter is the cornerstone of your approval. Here's what it should include:

Essential Components

Patient Demographics and Diagnosis:

  • Age, gender, insurance information
  • Primary diagnosis: hATTR polyneuropathy
  • ICD-10 code: E85.1 (Neuropathic heredofamilial amyloidosis)
  • Specific TTR variant identified

Clinical Rationale:

  • Progressive polyneuropathy symptoms
  • Functional decline documented by assessment scores
  • Impact on activities of daily living
  • Risk of continued deterioration without treatment

Treatment History:

  • Previous therapies attempted and outcomes
  • Contraindications to alternative treatments
  • Specific reasons other hATTR treatments aren't appropriate

Tegsedi-Specific Justification:

  • FDA approval for hATTR polyneuropathy
  • Clinical trial evidence (NEURO-TTR study)
  • Expected benefits: slowing disease progression
  • Safety monitoring plan (REMS compliance)

Medical Literature Support

Your doctor should reference these key sources:

Peer-to-Peer Support

If your initial prior authorization is denied, your doctor can request a peer-to-peer review with a Blue Cross Blue Shield medical director.

How to Support Your Doctor

Provide Availability Windows:

  • Offer to help coordinate scheduling
  • Be available for three-way calls if needed
  • Provide your contact information for follow-up

Prepare a Case Summary: Create a one-page summary including:

  • Your diagnosis and genetic testing results
  • Timeline of symptom progression
  • Failed treatments with specific dates
  • Current functional limitations
  • Why Tegsedi is medically necessary

During the Peer-to-Peer Call

Your doctor will present your case, but you can help by:

  • Being available for questions about symptoms
  • Providing real-time clarification on treatment history
  • Emphasizing the impact on your quality of life

After-Visit Follow-Up

Stay engaged after your appointment to ensure your case moves forward smoothly.

Document Everything

Save These Records:

  • Copy of the prior authorization submission
  • Reference numbers and submission dates
  • Contact information for follow-up
  • Any correspondence from Blue Cross Blue Shield

Track Your Case:

  • Check the provider portal regularly
  • Note any requests for additional information
  • Keep a log of phone calls and conversations

Patient Portal Communication

Use your doctor's patient portal effectively:

  • Send concise messages with specific questions
  • Attach relevant documents or photos
  • Request copies of all submissions
  • Ask for updates on approval status

Timeline Expectations

Standard Review: 15 business days for non-urgent requests Expedited Review: 72 hours if medically urgent Additional Information: May extend timeline by 14 days

Appeals Process in New York

If Blue Cross Blue Shield denies your Tegsedi coverage, New York offers robust appeal rights through multiple levels.

Internal Appeals Process

Level 1: Standard Internal Appeal

  • Deadline: 180 days from denial notice
  • Timeline: 30 days for standard review, 72 hours for urgent
  • How to File: Online through member portal or written request
  • Required: Copy of denial letter, supporting medical records

Level 2: Independent External Review

When to Request Expedited Review

Request expedited review if:

  • Stopping current treatment would seriously jeopardize your health
  • Standard timeline would significantly increase pain or suffering
  • Your condition is rapidly deteriorating

Free Help Available

Community Health Advocates: Call 888-614-5400 for free assistance with appeals in New York. They can help you:

  • Understand your appeal rights
  • Gather necessary documentation
  • File appeals correctly and on time
  • Navigate the external review process

Cost Savings Options

While working on insurance approval, explore these cost-saving programs:

Manufacturer Support

Tegsedi Patient Support Program:

  • Copay assistance for eligible patients
  • Prior authorization support services
  • Nursing support and injection training
  • Financial counseling

Contact: Check the official Ionis/Akcea website for current program details

Additional Resources

State Programs: New York residents may qualify for additional assistance through state pharmaceutical programs

Foundation Grants: Organizations like the HealthWell Foundation may provide copay assistance for qualifying patients

Clinical Trials: Ask your doctor about ongoing research studies that might provide access to treatment

Respectful Persistence: Following Up Effectively

Getting Tegsedi approved often requires multiple touchpoints. Here's how to follow up professionally:

Timing Your Follow-Ups

  • Week 1: Confirm submission received
  • Week 2: Check for any additional information requests
  • Week 3: If no response, call for status update
  • After denial: Begin appeal process immediately

Escalation Path

  1. Start with your doctor's office: They submitted the request and have the best relationship with the payer
  2. Contact member services: Use the number on your insurance card
  3. Request supervisor: If standard representatives can't help
  4. File formal complaint: With New York Department of Financial Services if needed

Professional Communication Scripts

For calling Blue Cross Blue Shield: "Hi, I'm calling to check on the status of a prior authorization request for Tegsedi submitted by Dr. [Name] on [date]. My member ID is [number]. Can you tell me if any additional information is needed?"

For following up with your doctor: "I wanted to follow up on my Tegsedi prior authorization. Has Blue Cross Blue Shield requested any additional information? Is there anything I can do to help move the process forward?"

About Counterforce Health

Counterforce Health specializes in turning insurance denials into successful appeals by analyzing denial letters, plan policies, and clinical notes to create targeted, evidence-backed responses. Their platform helps patients, clinicians, and specialty pharmacies navigate complex prior authorization requirements and appeal processes for medications like Tegsedi, ensuring that the right clinical evidence and procedural requirements are met for each payer's specific workflow.

Frequently Asked Questions

How long does Blue Cross Blue Shield prior authorization take in New York? Standard prior authorization decisions are made within 15 business days. Expedited reviews for urgent cases are completed within 72 hours.

What if Tegsedi is not on my Blue Cross Blue Shield formulary? You can request a formulary exception through the same prior authorization process. Your doctor will need to provide additional justification for why formulary alternatives aren't appropriate.

Can I appeal if I've tried treatments outside New York? Yes, treatment history from other states counts toward your appeal. Provide complete documentation of all previous therapies regardless of where they were tried.

Does step therapy apply to Tegsedi? Some Blue Cross Blue Shield plans may require trying other hATTR treatments first. Your doctor can request a step therapy exception if other treatments are contraindicated or inappropriate.

What's the success rate for external appeals in New York? While specific rates aren't published, appeals with strong clinical documentation and specialist support have higher success rates. The External Appeals Database shows outcomes for similar cases.

Sources & Further Reading

Disclaimer: This information is for educational purposes only and does not constitute medical advice. Always consult with your healthcare provider about your specific situation and treatment options. Insurance coverage policies change frequently—verify current requirements with your specific Blue Cross Blue Shield plan. For personalized assistance with insurance appeals in New York, contact Community Health Advocates at 888-614-5400 or the New York Department of Financial Services consumer helpline.

Powered by Counterforce Health—AI that turns drug denials into evidence-based appeals patients and clinicians can submit today.