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Getting the latest healthcare news for you
Getting the latest healthcare news for you
Getting the right specialists in the room is only half the battle for spinal muscular atrophy (SMA) patients. Experts say real-time communication, dedicated clinic coordinators, and thoughtful pediatric-to-adult transitions are the real keys to effective multidisciplinary care. As disease-modifying therapies extend survival, the pressure to get coordination right — and to build adult care infrastructure — has never been higher.
Having a neurologist, pulmonologist, and orthopedic surgeon on an SMA care team sounds great — until they're communicating through asynchronous notes spread across weeks. Experts from Cleveland Clinic, Columbia University, and Allegheny Health Network agree: the hardest part of multidisciplinary SMA care isn't building the roster, it's making the team function in real time.
Dr. Alexandra Bonner of Cleveland Clinic puts real-time communication at the center of the challenge. When a patient comes in with new shortness of breath, she needs pulmonology, orthopedics, and neurology aligned during the visit — not after. She also emphasizes bundling testing strategically around what families can realistically manage, like fitting priority screenings into a single day off work. Her top solution? A dedicated clinic coordinator who keeps providers synced and families supported.
The pediatric-to-adult transition is another pressure point. As disease-modifying therapies extend survival, more SMA patients are aging out of pediatric programs — but adult systems weren't built to receive them. Dr. Divya Jayaraman of Columbia notes that adult neuromuscular infrastructure, including physiatrists and pulmonologists familiar with SMA, is still catching up. Dr. Sandeep Rana of Allegheny Health Network, whose clinic has run for nearly two decades, adds that community neurologists must recognize SMA as a now-manageable condition and refer patients promptly to specialized centers.
Key Takeaways:
Why it matters: With three approved disease-modifying therapies and more on the horizon — including a potential FDA decision on apitegromab by September 2026 — SMA has shifted from a fatal diagnosis to a manageable chronic condition. That progress makes coordinated, lifelong care infrastructure not just helpful, but essential.
