The Impact of Inherited Retinal Diseases in the United States of America (US) and Canada from a Cost-of-Illness Perspective

Figures & data

Table 1 Prevalence Case of People Living with IRDs in the US and Canada

Region	US		Canada
IRD	Cases (Lower)	Cases (Upper)	Cases (Lower)	Cases (Upper)
Rod-cone dystrophy	51,325	122,007	5,841	23,891
RP	50,991	121,213	5,803	23,736
Autosomal dominant RP	15,970	37,962	1,818	7,347
Autosomal recessive RP	23,534	55,945	2,679	9,607
X-linked RP	11,487	27,306	1,307	6,782
Stargardt disease	36,578	86,951	4,163	17,027
Cone-rod dystrophy	11,436	27,185	1,302	5,323
Choroideremia	6,573	15,625	748	3,060
Best Disease	6,101	14,504	694	2,840
Usher syndrome	5,129	12,191	584	2,387
XLRS	5,070	12,051	577	2,360
LCA	2,895	6,881	329	1,347
Cone dystrophy	2,728	6,484	310	1,270
BCM	1,910	4,540	217	889
BBS	1,280	3,044	146	596
LHON	1,150	2,733	131	535
Achromatopsia	884	2,102	101	412
Total	184,048	437,511	20,947	85,672

Table 2 Estimated Total Cost and Proportion (%) of Total Cost in the US and Canada by IRD

Region	US		Canada
IRD	Costs (Lower) US$ mil (%)	Costs (Upper) US$ mil (%)	Costs (Lower) CAN$ mil (%)	Costs (Upper) CAN$ mil (%)
RP	3,708 (27.6)	8,791 (27.6)	452 (28.0)	1,847 (28.0)
Rod-cone dystrophy	3,755 (28.0)	8,901 (28.0)	459 (27.6)	1,874 (27.6)
Stargardt disease	2,648 (19.7)	6,278 (19.7)	323 (19.7)	1,317 (19.7)
Cone-rod dystrophy	837 (6.2)	1,983 (6.2)	102 (6.2)	418 (6.2)
Choroideremia	484 (3.6)	1,148 (3.6)	59 (3.6)	242 (3.6)
Best Disease	443 (3.3)	1,049 (3.3)	54 (3.3)	220 (3.3)
Usher syndrome	371 (2.8)	880 (2.8)	45 (2.8)	185 (2.8)
XLRS	376 (2.8)	890 (2.8)	46 (2.8)	188 (2.8)
LCA	210 (1.6)	498 (1.6)	26 (1.6)	105 (1.6)
Cone dystrophy	200 (1.5)	473 (1.5)	24 (1.5)	100 (1.5)
BCM	141 (1.1)	335 (1.1)	17 (1.1)	71 (1.1)
BBS	92 (0.7)	219 (0.7)	11 (0.7)	46 (0.7)
LHON	84 (0.6)	200 (0.6)	10 (0.6)	42 (0.5)
Achromatopsia	64 (0.5)	152 (0.5)	8 (0.5)	32 (0.5)
Total	13,414 (100.0)	31,797 (100.0)	1,638 (100.0)	6,688 (100.0)

Table 3 Estimated Total Cost and Proportion of Total Cost in the US and Canada by Cost Component

Region	US		Canada
Cost type	Lower US$ mil (%)	Upper US$ mil (%)	Lower CAN$ mil (%)	Upper CAN$ mil (%)
Health system costs	963.8 (7)	2,216.8 (7)	37.8 (2)	144.3 (2)
Productivity costs	1,854.9 (14)	4,409.3 (14)	219.0 (13)	895.5 (13)
Caregiver costs	1,077.0 (8)	2,560.1 (8)	162.0 (10)	662.7 (10)
Other costs	380.6 (3)	904.8 (3)	109.4 (7)	447.4 (7)
Deadweight loss	706.0 (5)	1,662.9 (5)	38.3 (2)	155.7 (2)
Loss of wellbeing	8,431.7 (63)	20,043.6 (63)	1,071.4 (65)	4,381.9 (65)
Total costs	13,414.0 (100)	31,797.4 (100)	1,637.8 (100)	6,687.5 (100)
Total financial costs	4,982.2 (17)	11,753.9 (17)	566.5 (35)	2,305.7 (35)

Figure 1 Proportion (%) of total costs of IRDs in Canada (A) and the US (B) by cost type in 2019.

Figure 2 Proportion (%) of total costs of IRDs in Canada (A) and the US (B) by payer in 2019.