94 Curing All Rare Diseases Would Be Valuable The US healthcare system spends approximately $450 billion per year on the treatment of rare diseases. To manage patients with rare diseases throughout their lifetimes, the cost could mount to $20 trillion, of which less than half would be for medication. Theoretically, curing all rare diseases would shift most of the costs to medication, obviating the need for in- and out-patient disease management, underscoring the value of a cure. Forecasted Value of Rare Disease Cures Aggregate US Rare Disease Healthcare Costs To Healthcare System Over 50 Years S $25 E Medication Costs Other Costs PI A R E $25 $20 H T N O $20 I S $15 I s C n E ns $15 o i io l PR l l i il Tr r $10 T $10 $5 $5 $- 1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35 37 39 41 43 45 47 49 51 $0 Years Avoided Direct Costs Value of QALYs Gained* Total Value *Quality of Life Years Gained = Health Utility * Duration For Health Utility, 0 means dead and 1 means full health Data are as of December of 2023 Sources: ARK Investment Management LLC, 2024. This ARK analysis is based on a range of external sources, including Orphanet 2023, which may be provided upon request. Forecasts are inherently limited and cannot be relied upon. For informational purposes only and should not be considered investment advice or a recommendation to buy, sell, or hold any particular security. Past performance is not indicative of future results.
Annual Research Report | Big Ideas 2024 Page 93 Page 95