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Table 2 Direct medical cost of rare diseases by age, insurance coverage, and type of service, in 2019

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

Ā 

Total excess medical cost due to RD

Per-person (2019 $)

(in Million $)

Percentage of the total (%)

Age

Ā Ā Ā 

Ā <ā€‰18

42,381

9.4

32,037

Ā 18ā€“64

248,198

55.2

29,647

Ā ā‰„ā€‰65

158,884

35.3

27,157

Insurance

Ā Ā Ā 

Ā Medicaid

43,621

9.7

27,573

Ā Commercial

213,094

47.4

29,910

Ā Medicare

192,747

42.9

28,185

Type of service

Ā Ā Ā 

Ā Inpatient

143,000

31.8

9199

Ā Prescription medication

79,466

17.7

5112

Ā Outpatient

62,032

13.8

3990

Ā Other ancillary

48,974

10.9

3150

Ā Outpatient prescription administration

47,567

10.6

3060

Ā Physician

31,372

7.0

2018

Ā Non-acute inpatient

30,759

6.8

1979

Ā Durable medical equipment

4,401

1.0

283

Ā Caregiver

1890

0.4

122

Overall

449,462

100

28,913

  1. 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 2019 Census population projections; direct medical cost estimates also based on three claims databases. Other ancillary services include telehealth, ambulance transportation via land, air or water, mobile unit services, etc.