Cure SMA Issues Booklet on Insurance Coverage for SMA Patients, Families

Cure SMA, an organization dedicated to the treatment and cure of spinal muscular atrophy (SMA), has launched a booklet addressing some of the broader questions about insurance coverage that are common to the SMA community.

Decisions can seem overwhelming when faced with a new SMA diagnosis or when caring for a loved one with SMA — particularly when navigating health insurance and predicting healthcare costs.

Because SMA is a rare disease, it can also be difficult to find a provider that knows the ins and outs of the disorder and its related challenges. For this reason, it’s crucial to know which insurance plan covers which healthcare providers and facilities. This helps ensures that patients and families have access to the most effective, appropriate and comprehensive care.

The 20-page guide, “Choice and Connection to Care: A Health Insurance Roadmap for People Living with Spinal Muscular Atrophy (SMA) and Their Caregivers”, offers a roadmap for SMA health coverage, to help those living with the disease better understand the options available.

The booklet offers an overview of:

• The different types of health insurance available;
• Resources to help you understand different types of health coverage and related terms;
• The insurance eligibility profile for families affected by SMA;
• What insurance may cover and how the coverage will work;
• Help for estimating costs;
• How to find resources to cover costs that may not be covered by traditional health insurance plans;
• Guidelines to talk to insurers about insurance options and new treatments.

“We expect that this booklet will help families tackle some of the most common issues and questions,” Cure SMA said in a news release. “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.”

Last year, Cure SMA launched its insurance coverage and payment policy project. The organization meets with key public, private and state-based stakeholders to educate them on the need for access to, coverage for, and payment of SMA care and treatment.

The project also focuses on the urgency of immediate coverage of new treatments as soon as they are approved. In this context, Cure SMA engages with members of Congress, educating them on key developments in the SMA drug pipeline, and on the needs and goals of this patient community.

With Spinraza recently approved by the U.S. Food and Drug Administration (FDA), and with five other treatment options currently in clinical trials, Cure SMA believes that “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.”

Cure SMA will be providing updates of the payment policy project this spring, and will also release its agenda for its upcoming 2017 Annual SMA Conference at Disney World, to be held June 29-July 2 in Orlando, Florida.

A copy of the booklet can be found here, or by sending an email to [email protected] to request a physical copy.