Insurance Resources
Cure SMA recognizes and understands that navigating insurance can be challenging and overwhelming.
Our Health Insurance Roadmap offers clear information about different types of health insurance and helpful tips for understanding what your plan covers and how it works.
The toolkit is also available for download in multiple languages. To access, please visit our Care Series Booklets page.
Please note that insurance rules can vary by state. That’s why we’ve created state-specific resource guides to help you learn about local programs, state-funded insurance, and advocacy organizations near you. Just complete the form below and click “State Specific Resources Guide.” You can also use the form to request any additional resources that may support your care.
For inquiries regarding your specific benefits, you may utilize the following suggestions to access the support and information you need related to your insurance coverage:
- Your insurance customer service hotline. It is recommended that you document the date, time, reference number, and name of person you spoke with, should you need to follow up with any discussions.
- Your healthcare team or healthcare professional. They can assist and guide on insurance coverage related to specific health care needs they are providing.
- If you are receiving a treatment, connect with the pharmaceutical company through their website to request information and receive support related to navigating insurance coverage for the treatment they provide.
Payer Outreach Resources
Cure SMA shared key SMA community data and experiences with insurers in two significant educational outreach campaigns to better inform them about the promising trends and the evolving needs and goals of the SMA community.
Cure SMA Payer Update June 2024
Cure SMA Payer Update May 2025
In the Resources for Healthcare Providers section below, you’ll find materials designed for medical professionals—but they can also support your own advocacy. Feel free to share them with your care team, especially when discussing treatment options or responding to insurance denials.
Resources for HealthCare Providers
Our resources are designed to assist you with managing insurance related to SMA care and offer guidance on the drafting of letters of medical necessity and navigating the process of appealing insurance denials.