How one drug got its $500,000 price tag. (With 99 Percent Invisible– Season One, episode 3)

The Orphan Drug Act of 1983 transformed the landscape of rare disease treatment by providing financial incentives for pharmaceutical development. Initially, companies ignored rare conditions due to low profitability, but the legislation introduced market exclusivity and subsidies to encourage innovation. While this policy successfully spurred the creation of life-saving treatments, it also enabled manufacturers to set astronomical prices, sometimes exceeding half a million dollars annually per patient. Advocacy efforts led by Abbey Meyers, bolstered by a fictionalized campaign on the television show *Quincy*, were instrumental in the act's passage. Entrepreneurs like Joshua Schein later leveraged these incentives, using public market mergers to fund clinical trials and secure monopolies. Today, the act remains a double-edged sword, balancing the necessity of incentivizing research for rare conditions against the reality of unaffordable costs that contribute to the broader healthcare affordability crisis.