Wearing a blue T-shirt and worn jeans, Marc Yale stood near the welcome pole at the annual Rare Disease Legislative Advocates conference handing out money.
Envelopes in his left hand held $750 checks to help patients with a rare disease cover the cost of a whirlwind trip to the nation’s capital. The money was donated by the pharmaceutical industry.
“Obviously, we wanted to send as many patients to advocate on Capitol Hill as possible,” said Yale, the director of the International Pemphigus & Pemphigoid Foundation.
Yale collected $7,500 in donations from a specialty pharmacy and a drugmaker that manufactures treatments for the rare diseases that afflict his members. The money was intended to help offset patients’ travel expenses.
But some conference first-timers were skeptical about the motivations: “What I’m seeing just doesn’t feel right,” said Aaron Motschenbacher, who participated because his three young children suffer from deadly and progressive multiple sulfatase deficiency, a rare hereditary metabolic disorder.
Before paying his own way to take an early flight home, he complained that patients and their families had no “involvement drafting, creating or discussing” the messaging delivered to Congress, adding: “It’s like marketing, I’m pushing an agenda by and through a sob story.”