The national economic burden of rare disease in the United States in 2019

Table 3 Total and per-person indirect costs by cost component, in 2019

	Age < 18			Age ≥ 18
	Person with a RD	Primary Caregiver	Secondary Caregiver	Person with a RD	Primary Caregiver	Secondary Caregiver
Indirect cost due to productivity loss
Total (in Million $)			45,571			391,126
Early retirement	NA	850	1083	88,877	38,462	6823
Absenteeism	NA	10,265	14,497	59,853	50,176	14,024
Presenteeism	NA	10,176	7232	74,741	40,453	5367
Social productivity loss in volunteer work	494	550	424	8226	4035	89
Per-person (2019 $)			34,448			27,501
Early retirement	NA	642	818	6249	2704	480
Absenteeism	NA	7759	10,959	4208	3528	986
Presenteeism	NA	7692	5467	5255	2844	377
Social productivity loss in volunteer work	373	416	321	578	284	6

Source: RD prevalence calculated from claims data: 2018 de-identified Normative Health Information (dNHI) claims, a large claims database for the privately insured, 2019 Medicare 5%, and 2016 Medicaid, combined with the Census population projection for 2019; indirect and non-medical costs estimated from the Survey data

ISSN: 1750-1172