To Name a Rare Disease
by Misha Angrist
In 2022, a baby formula plant in Sturgis, Michigan, owned by Abbott Laboratories, was closed down after the FDA cited it for unsanitary practices. In addition to halting the supply chain of standard baby formula, the plant’s closure interrupted deliveries of medical foods, including products that people with rare metabolic diseases need in order to survive.
Karen Dolins, a registered dietician and nutritionist who teaches at Columbia, has an adult daughter who has one of these conditions—the one known as maple syrup urine disease. Patients with this genetic disorder are unable to break down protein. While fielding media queries about the acute shortage, Dolins tried to explain that what was happening at Abbott was a grave threat to vulnerable adult patients with diseases like MSUD.
“One journalist actually said to me, ‘Maple syrup urine disease? Well, that doesn't sound too serious,’” she told me. “And I thought, ‘Oh my God, we really need a name change.’”
Keep us breathing fire!
For $3/month you can read this whole post and get our weekdaily newsletter too!