Presentation (CTI)

OBJECTIVES: Duchenne muscular dystrophy (DMD) is a rare neuromuscular disease primarily occurring in males, resulting in muscle weakness, loss of functional ability (upper and lower body), and premature mortality. Due to disease severity and premature mortality, workforce participation is severely limited for those with the disease and their caregivers, resulting in reduced lifetime income and work years. Evaluating productivity from multiple perspectives is important for broader value framework assessments. This study analyzes DMD impact on work productivity due to workforce participation and lifetime income reductions by taking a societal perspective to quantifying unrealized tax revenue.
METHODS: This analysis extends on previous findings showing that patients with DMD and their caregivers experience reduced workforce participation and lifetime earned income compared with the general US population. Subsequent reductions in lifetime tax contributions for both groups were calculated using a 5-state partitioned survival model: early and late ambulatory, early and late non-ambulatory, and death. Tax contributions were compared between patients receiving standard of care (SoC) and the general US male population as well as between caregivers of patients and the general adult US population. A 3% annual discount rate was applied.
RESULTS: Patients with DMD receiving SoC work 35.9 fewer years than US males, resulting in a lifetime loss of income of $2,114,293. This translates to a lifetime tax shortfall of $630,247 (99%) per patient versus US males ($7,872 versus $638,119). Their caregivers lose 7,194 working hours and $249,697 lifetime income, equating to a tax shortfall of $68,394 (14%) per caregiver lifetime ($425,582 versus $493,976).
CONCLUSIONS: This study demonstrates that DMD negatively affects work opportunities for patients and caregivers, leading to reduced workforce participation and, consequently, lifetime income and tax shortfalls, affecting society as a whole. The impact DMD has on productivity from patient, caregiver, and societal perspectives is an important value assessment consideration.