Abstract
X-linked myotubular myopathy (XLMTM) is a rare genetic life-threatening disease characterized by early onset, severe muscle weakness and respiratory failure. Most children with XLMTM depend on permanent use of ventilation, feeding tubes, wheelchairs, and home health services. Medicaid provides coverage for XLMTM patients, but the costs paid by Medicaid for XLMTM patients have not been estimated.
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