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

Yang, Grace; Cintina, Inna; Pariser, Anne; Oehrlein, Elisabeth; Sullivan, Jamie; Kennedy, Annie

doi:10.1186/s13023-022-02299-5

Orphanet Journal of Rare Diseases

Table 4 Total and per-person non-medical costs and healthcare costs not covered by insurance, in 2019

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

	Total (in Million $)		Per-Person (2019 $)
	Age < 18	Age ≥ 18	Age < 18	Age ≥ 18
Non-medical costs	16,285	56,990	12,310	4007
Paid daily care (i.e., paid assistance with daily living)	1482	7477	1121	526
Necessary home modification (e.g., ramp, stair lifts)	1682	8709	1271	612
Special equipment at home or on a personal/family vehicle (e.g., wheelchair, shower chair, hydraulic commode lift)	1865	21,677	1409	1524
Transportation costs (e.g., costs incurred while seeking care or attending clinical trials)	1305	19,127	986	1345
Home schooling (i.e., expenses related to home schooling if the child with RD cannot attend normal school due to RD)	454	NA	344	NA
Missed schooling (i.e., days missed from preschool or school in an average school month because of rare disease)	2298	NA	1737	NA
Special education (e.g., school-based special services to the affected child such as speech and language therapy, braille books, or sign language interpreter)	7199	NA	5442	NA
Healthcare Costs Not Covered by Insurance (e.g., family spending on experimental, alternative, or non-traditional treatments; over-the-counter drugs; or dental surgeries)	2172	35,750	1642	2514

Source: RD prevalence calculated from claims data (2018 dNHI, 2019 Medicare 5%, and 2016 Medicaid) combined with the Census population projection for 2019. Non-medical costs^a and healthcare costs not covered by insurance were estimated from the Survey data
^aNon-Medical Cost components include: (1) Missed school: Days missed from preschool or school in an average school month because of rare disease. (2) Home schooling: expenses related to home schooling if the affected person cannot attend school or paying for a nanny beyond what would have been spent if not because of the rare disease. (3) Transportation costs: Increased transportation costs (e.g., driving to and from clinics or specialized facilities, attending clinical trials, traveling to patient community meetings, medical conferences, or advocacy events, parking, etc.). (4) Home modification: Expenses on home modifications (e.g., barrier free lift systems, stair lifts, automatic door openers, ramps, technology to enable access through an X-box or iPad, adaptations for hearing or vision impairments, other). (5) Special equipment at home: Expenses related to purchasing/installing/modifying special equipment at home or on a personal family vehicle (e.g., bathroom equipment such as a shower chair, commode chair, hydraulic commode lift, modification to the wheelchair such as elevated leg rests, modified joysticks and switches, automated/raised desk trays, vehicle modifications to accommodate driver or passenger with disability, etc.). (6) DME: Expenses related to purchasing equipment (e.g., pulse oximeter, suction machine, habilitation equipment such as standers, alternative pressure air mattress, motorized hospital bed, etc.). (7) Special education: services that school provide special care to the affected person, either via informal supports, or via a 504 Plan or an IEP. The special education services include: Full-time or part-time personal care attendant for the classroom, occupational or physical therapy, speech and language therapy, special education supports and auxiliary aid, equipment such as augmentative communication or technology supports, etc.

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ISSN: 1750-1172

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