BEYOND THE HEALTH SECTOR: ESTIMATING THE SOCIETAL AND FISCAL IMPACT OF PRIMARY BILIARY CHOLANGITIS IN THE UNITED STATES
Author(s)
Rui Martins, MSc1, Mark P. Connolly, BA, MSc, PhD1, Marvin Rock, MPH, DrPH2, Nikos Kotsopoulos, MSc, PhD3, Chong H Kim, MPH, MS, PhD2;
1GZW Global Health Department, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands; Department of Health Economics, Global Market Access Solutions LLC, Mooresville, NC, USA, 2Gilead Sciences Inc., Foster City, CA, USA, 3Department of Economics, University of Athens MBA, University of Athens, Athens, Greece; Department of Health Economics, Global Market Access Solutions LLC, Mooresville, NC, USA
1GZW Global Health Department, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands; Department of Health Economics, Global Market Access Solutions LLC, Mooresville, NC, USA, 2Gilead Sciences Inc., Foster City, CA, USA, 3Department of Economics, University of Athens MBA, University of Athens, Athens, Greece; Department of Health Economics, Global Market Access Solutions LLC, Mooresville, NC, USA
OBJECTIVES: Primary biliary cholangitis (PBC) is an autoimmune disease, causing considerable morbidity and mortality, disrupting lifetime productivity, and negatively impacting the broader economy. To evaluate PBC’s impact on lifetime patient and caregiver productivity, a simulation model was developed linking PBC health states to work activity. The analysis compared US societal and fiscal economic consequences associated with PBC in patients receiving ursodeoxycholic acid to an average individual unaffected by PBC.
METHODS: The natural history of PBC was modeled over 20 years in a 45-year-old individual using 11 health states: normal/mild/high alkaline phosphatase, compensated/decompensated cirrhosis, hepatocellular carcinoma, liver transplant (LT), pre-/post-LT, PBC re-emergence, and death. Published evidence of PBC’s impact on labor participation including employment, disability, absenteeism, presenteeism, and retirement, was applied to individuals distributed across PBC health states. Pruritus-related productivity losses were captured using the Work Productivity and Activity Impairment questionnaire. Employment impacts were translated into estimates of societal and fiscal economic consequences using age-specific wages and tax data from public sources, excluding healthcare costs.
RESULTS: People living with PBC and informal caregivers were associated with lower labor participation and productivity. Over 20 years, on average, PBC was estimated to originate incremental losses of $580,870 (societal) and $169,674 (fiscal) vs a demographically identical individual unaffected by PBC. Approximately 6.4% of the societal and 8.1% of the fiscal consequences related to caregiver productivity losses. Fiscally, patient and caregiver incremental tax losses ($125,316 and $20,004, respectively) represented the largest burden. We estimate that preventing one person from progressing to LT prevents $41,263 in annual societal losses.
CONCLUSIONS: As currently managed, patients with PBC experience increased economic and humanistic burdens, as reflected by societal and fiscal losses, compared with the general US population. These losses mostly relate to foregone patient and caregiver productivity. These findings suggest that more efficacious treatments could alleviate individual burden and avoid economic spillovers.
METHODS: The natural history of PBC was modeled over 20 years in a 45-year-old individual using 11 health states: normal/mild/high alkaline phosphatase, compensated/decompensated cirrhosis, hepatocellular carcinoma, liver transplant (LT), pre-/post-LT, PBC re-emergence, and death. Published evidence of PBC’s impact on labor participation including employment, disability, absenteeism, presenteeism, and retirement, was applied to individuals distributed across PBC health states. Pruritus-related productivity losses were captured using the Work Productivity and Activity Impairment questionnaire. Employment impacts were translated into estimates of societal and fiscal economic consequences using age-specific wages and tax data from public sources, excluding healthcare costs.
RESULTS: People living with PBC and informal caregivers were associated with lower labor participation and productivity. Over 20 years, on average, PBC was estimated to originate incremental losses of $580,870 (societal) and $169,674 (fiscal) vs a demographically identical individual unaffected by PBC. Approximately 6.4% of the societal and 8.1% of the fiscal consequences related to caregiver productivity losses. Fiscally, patient and caregiver incremental tax losses ($125,316 and $20,004, respectively) represented the largest burden. We estimate that preventing one person from progressing to LT prevents $41,263 in annual societal losses.
CONCLUSIONS: As currently managed, patients with PBC experience increased economic and humanistic burdens, as reflected by societal and fiscal losses, compared with the general US population. These losses mostly relate to foregone patient and caregiver productivity. These findings suggest that more efficacious treatments could alleviate individual burden and avoid economic spillovers.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
EE94
Topic
Economic Evaluation
Topic Subcategory
Novel & Social Elements of Value, Work & Home Productivity - Indirect Costs
Disease
No Additional Disease & Conditions/Specialized Treatment Areas