The Essential Role of Medicaid in Duchenne Muscular Dystrophy Care: A Call to Protect Vulnerable Populations

Background

Duchenne muscular dystrophy (DMD) is the most common fatal pediatric neuromuscular disorder, resulting in premature morbidity and mortality. Multidisciplinary care and new therapies have prolonged quantity and quality of life, for which many families remain dependent on Medicaid for access to standards of care. Proposed Medicaid funding cuts would disproportionately harm children with complex medical conditions, including DMD, jeopardizing their access to essential services and specialized care. Children with DMD rely on comprehensive multidisciplinary care, including neurology, cardiology, pulmonology, endocrinology, psychiatry, and rehabilitation specialists. Medicaid enables access to life-extending therapies, including (but not limited to) cardiac monitoring, ventilatory support, multidisciplinary steroid complications management, and mobility and accessibility devices to promote independence and dignity. Even families with private insurance often rely on Medicaid to bridge coverage gaps. Cutting Medicaid would force untenable decisions: families may have to forgo critical medications, critical heart scans, or essential mobility equipment. These choices would have devastating real-world consequences, resulting in loss of function, accelerated disease progression, and earlier deaths.

Methods

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Results

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Conclusion

As neuromuscular specialists at the UMass Duchenne Program, we see firsthand that Medicaid is not a luxury; it is the foundation that gives families hope for a better future. Children with DMD, as a protected and vulnerable population, cannot advocate for themselves. We must be their voice. Medicaid cuts are not merely a fiscal decision; they are a moral decision with life-altering consequences. We urge policymakers to protect Medicaid and safeguard the future of children living with DMD.