On August 3rd, as part of multiple days of advocacy visits, Cure SMA staff met with leaders from the Medicare division of the Centers for Medicare and Medicaid Services (CMS). The goal of the meeting was to advocate for robust reimbursement for Spinraza, as part of our ongoing coverage and payment policy project.

While the coverage and payment policy project covers the full breadth of treatment and care for SMA, it is specifically focused on obtaining timely coverage for new treatments as they are approved by the FDA. With that in mind, many of our current activities have focused on the approval of Spinraza, both to ensure that it is broadly covered by insurance, and to set a standard and process for decisions on future treatments.

Medicare’s process for new drugs, like Spinraza, is different from Medicaid’s approach. In most states, Medicaid issues a policy up front that guides whether individual claims are approved or denied. In Medicare, the process begins with individual claims being reviewed on a case-by-case basis until a consensus emerges. Once that happens, local policies are issued, potentially followed by a national policy.

At the meeting, the leadership of CMS asked for our community’s help and guidance in this process. Later this year, we will provide a report to CMS on our community’s experiences with Medicare coverage of Spinraza. This will help CMS assess whether to accelerate the process of issuing a national policy, or whether to continue to provide support as cases are reviewed at the local level.

If you are an individual affected by SMA with Medicare coverage, or if you care for an individual affected by SMA on Medicare, please take this short survey on your experience with Medicare and access to Spinraza.

The survey requests your name and email address in case we need to contact you in order to follow up on your answers. However, only de-identified, aggregate responses will be shared with CMS.

The survey will close on Friday, September 29th.

Additional link to survey here