Cure SMA Releases Care Series Booklet on Insurance

Cure SMA is excited to announce the launch of our newest care series booklet, Choice and Connection to Care: A Health Insurance Roadmap for People Living with Spinal Muscular Atrophy (SMA) and Their Caregivers. You can download a copy of this booklet now from our website, or send an email to [email protected] to request a physical copy of the booklet. We anticipate that copies will begin shipping in the next 2-3 weeks.


For those affected by SMA, insurance can be a challenging subject to navigate. Those affected by SMA often rely on a unique combination of private and public insurance. What’s more, the needs of those affected by SMA can change frequently—and the options for treatment are changing too—meaning that even those with existing insurance can face uncertainty when it comes to coverage and out-of-pocket costs.

This booklet addresses some of the broader questions that are common in our community, such as:

  • What are the different types of health insurance available?
  • How do I know which type(s) I or my child is eligible for?
  • How do I figure out what insurance may cover for me or my child?
  • How do I calculate estimated out-of-pocket costs?
  • What options are available for costs that may not be covered by traditional health insurance plans?
  • How can I talk to insurers about insurance options and new treatments? 

The booklet also includes links to additional information, a glossary of common insurance terms, and more.

We expect that this booklet will help families tackle some of the most common issues and questions. However, please note that each individual situation is different, so this booklet cannot substitute for personalized advice from a patient advocate, social worker, or other resource.

Insurance Coverage and Payment Policy Project

In addition to community education efforts such as this booklet, Cure SMA also continues to engage with key public, private, and state-based stakeholders as part of our insurance coverage and payment policy project. The goal is to educate them on the need for access to, coverage for, and payment of SMA care and treatment. The project also includes targeted outreach to members of Congress, educating them on key developments in the SMA drug pipeline, and on the needs and goals of our community.

With Spinraza recently approved by the FDA, and with five additional therapies currently being tested in clinical trials, this is a critical time for us to advocate on the topic of insurance and reimbursement, focusing on the urgency of prompt, comprehensive coverage as soon as new treatments are approved.

For this reason, the insurance coverage and payment policy project includes a particular focus on the importance of coverage for newly approved SMA treatments. However, it also covers the full breadth of treatment and care for SMA.

Further updates from the coverage and payment policy project will be released later this spring, and will include information on insurance and payment activities planned for our 2017 Annual SMA Conference at Disney World in Orlando, FL.

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