Choose Your Language:
The Sumaira Foundation (TSF) created a step-by-step resource to support and empower patients, families, and caregivers to navigate the insurance approval process with confidence, understand language commonly used by insurance companies, and know the steps often required to gain access to treatment.
Whether your NMOSD specialist has prescribed one of the four FDA-approved treatments (SOLIRIS®, ENSPRYNG®, UPLIZNA® and ULTOMIRIS®) or you are facing insurance delays or denials, this guide is here to walk you through what to expect and how to move forward.
On this page, you’ll find:
These resources are not meant to replace your doctor or care team’s advice. Instead, they are designed to provide you with the knowledge and tools to work through the insurance process alongside them.
Although this was guide created for NMOSD patients and caregiver, tips within this resource are applicable to all rare diseases with an FDA-approved treatment.
Inside, you’ll find:
You do not have to read this entire guide at once. Start with the section that matches where you are in the process.
If your treatment plan is denied by your insurance, don’t worry, these templates can help. You’ll find templates for a Letter of Medical Necessity (from your provider) and a Personal Impact Statement (from you) that you and your care team can use to appeal the denial.
Patients living with rare conditions in the US frequently face extra complexities when seeking access to specialized treatments, off-label therapies or less common care pathways. Prior authorizations may take longer, documentation requirements may be more intensive and appeals may present additional hurdles.
We were joined by Joe Touschner (Senior Policy Health Advisor, National Association of Insurance Commissioners), who demystified key aspects of the health insurance system that often present barriers for rare disease patients. This webinar was curated specifically for the rare disease community to equip you with clarity, practical steps and confidence to better navigate insurance processes.
TSF partners with several nonprofit organizations that offer financial assistance and support services to NMOSD patients across the United States. Explore the programs below to find help with copays, transportation, lab tests, clinical trial participation, and more.
