In “The Free-Living Bureaucrat,” Michael Lewis interweaves two narratives: the story of the Smith family’s battle against a rare brain-eating amoeba that infected their daughter, and the story of Heather Stone, an FDA employee who created a system to help doctors share treatments for rare diseases.

The essay first introduces Walter and Amanda Smith, a married couple whose relationship was deteriorating. Their lives changed dramatically in September 2021 when their five-year-old daughter, Alaina, experienced a seizure. After a second seizure days later, she was referred to a specialist, who diagnosed her with epilepsy. In December 2021, the doctor finally ordered an MRI, which revealed a large mass in Alaina’s brain. She underwent high-risk surgery at Children’s Medical Center Dallas, where the surgeon removed an apparent infection rather than a tumor. The sample was sent to the Centers for Disease Control (CDC), and a week later, the doctors informed Walter and Amanda that Alaina had balamuthia, a rare brain-eating amoeba that was fatal in 95% of known cases worldwide. The doctors had no established effective treatment, only a cocktail of drugs with severe side effects. Upon hearing this devastating news, Amanda told Walter she wanted a divorce once their ordeal was over.

Lewis then shifts to the story of Heather Stone, a government employee at the Food and Drug Administration (FDA). Heather grew up in rural Newark. Her mother worked as an infectious disease doctor. From an early age, Heather was involved in her mother’s work, accompanying her on hospital rounds and even on medical trips abroad. She developed a strong interest in infectious diseases and planned to become a doctor like her mother.

However, health issues complicated Heather’s path. At age seven, she had strep throat, which led to Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) syndrome, a rare autoimmune disorder that causes severe obsessive-compulsive disorder (OCD). Throughout her life, she experienced various mysterious ailments, from chronic pain to vocal cord damage, which rendered her physically unable to attend medical school. Despite these setbacks, she was determined to work in infectious disease research.

After graduate school, Heather got a job at the FDA. There, she met Leonard Sacks, an infectious disease doctor who had an idea to create a platform where doctors could report treatments for rare diseases. Heather volunteered to make this vision a reality, driven by her personal experience with rare conditions. She created CURE ID, a website and app designed to collect case studies from doctors worldwide who had treated rare diseases. These anecdotal reports would not constitute traditional evidence-based medicine but could provide valuable insights for conditions too rare for conventional clinical trials.

Despite her efforts, CURE ID faced significant challenges. The FDA provided minimal resources and restricted Heather from publicly promoting the platform. Many within the agency questioned why the US government should help cure diseases primarily occurring outside the country. As a result, CURE ID received only 200 case reports in its first five years, far fewer than Heather had hoped for.

One of CURE ID’s first clinical cases involved balamuthia, the same amoeba affecting Alaina Smith. Lewis explains why rare, deadly diseases like balamuthia elude conventional drug discovery methods: There are too few cases for traditional clinical trials, and ethical considerations prevent giving placebos to patients with such deadly conditions.

Lewis then introduces Joe DeRisi, a biopharmacist at the University of California in San Francisco, who in 2015 helped identify balamuthia in a 74-year-old Chinese woman whose brain displayed unusual damage. DeRisi and his team later tested more than 2,000 FDA-approved drugs against balamuthia and found that only one, nitroxoline, was effective. They published their findings in 2018, but this information had not reached the doctors treating Alaina at Children’s Medical Center Dallas.

In September 2022, Heather received a desperate voicemail from Amanda Smith asking for help obtaining nitroxoline for Alaina. Amanda had discovered DeRisi’s research through her own online searches. Heather contacted DeRisi and arranged for the remaining supply of nitroxoline in the country to be sent to Dallas, along with FDA approval for its use.

Within days of switching from the ineffective drug cocktail to nitroxoline, Alaina’s condition improved. Two years later, her brain scans showed no signs of the amoeba. The experience transformed the Smiths’ relationship, and they no longer wanted a divorce. They expressed immense gratitude to everyone who helped save their daughter, including the Chinese company that provided additional nitroxoline at no cost.

Lewis concludes by highlighting the paradox of this story: While Alaina’s cure seemed miraculous, the knowledge that saved her already existed but failed to reach her doctors through conventional medical information channels. Despite Heather Stone’s creation of CURE ID to address exactly this problem, the platform remained underutilized by the medical community. Lewis notes that shortly after Alaina’s recovery, another child with balamuthia died because her doctors learned about nitroxoline too late, underscoring the tragic consequences of this information gap.