Table 1.
Disease | Worldwide Prevalence (×103) | % with Kidney Failure | Cost LIC (×106) | Cost MIC (×106) | Cost HIC (×106) | Global Cost (×106) |
---|---|---|---|---|---|---|
Alport syndrome | 157.2 | 51 | $46.9 | $808.5 | $458.8 | $1314.2 |
Atypical hemolytic uremic syndrome | 39.3 | 65 | $14.9 | $257.7 | $146.1 | $418.7 |
Autosomal dominant polycystic kidney disease | 12,500.0 | 28 | $2040.9 | $35,213.9 | $19,981.3 | $57,236.1 |
Focal and segmental glomerulosclerosis | 552.0 | 50 | $16.1 | $277.4 | $157.4 | $450.9 |
C3 glomerulopathy | 78.6 | 50 | $23.0 | $396.3 | $224.9 | $644.2 |
Goodpasture syndrome | 7.9 | 30 | $1.3 | $23.8 | $13.5 | $38.6 |
IgA nephropathy | 1988.6 | 20 | $232.5 | $4010.9 | $2275.9 | $6519.3 |
Membranous nephropathy | 4345.0 | 10 | $253.9 | $4381.7 | $2486.4 | $7122.0 |
The estimated worldwide prevalence of each rare disease was extrapolated from refs 38–46. We applied the prevalence statistic to the populations living in low-, middle-, and high-income country regions as provided by the World Bank: https://data.worldbank.org/indicator/SP.POP.TOTL. Similarly, the percentage of patients with rare kidney diseases with kidney failure is based on refs. 45,47–54. The global annual economic burden of kidney failure patients who progressed to dialysis was calculated based on the data provided in ref. 55. These figures do not account for indirect costs (hospitalization, drugs, physiotherapy, and transport) and productivity losses, which would add considerably to the global cost. Cost calculations assume that every valid candidate would be treated by dialysis. Amounts mentioned are not actual costs but are estimated values, based in part on extrapolations. LIC, low-income countries; MIC, middle-income countries; HIC, high-income countries.