Before Maddie's birth, Cheryl Niles had worked as a computer engineer and was expecting to return to work. But over time, it became clear that juggling Maddie's multiple medical needs, including appointments, hospitalizations, and homeschooling, made that impossible.
It was a significant financial hit for the Nileses — as it is for many other families with rare disease. Average loss of income in families with a child with a rare disease was around $34,000 in 2019, according to a study published last year by the Lewin Group and the EveryLife Foundation.
The study found that the total economic impact for an estimated 15.5 million people in the U.S. living with a rare disease was nearly a trillion dollars in 2019.
It is a "crushing impact" on the rare-disease community and society at large, Kennedy says.
"That's higher than heart disease, it's higher than some cancers, it's higher than Alzheimer's disease," says Joni Rutter, PhD, director of the National Center for Advancing Translational Sciences, or NCATS, at the National Institutes of Health. "So this is a problem."
Adding to the financial strain — "a double whammy," Cheryl Niles says — was their decision to remain in the high-cost Washington, DC, area after her husband Sean's retirement from the U.S. Navy, to avoid disruption of Maddie's care.
And it was just the beginning. When the Nileses couldn't find enough qualified nurses to cover all the hours needed to keep up Maddie's complex medication program during her school day, the insurance company responded by cutting coverage. For several weeks, Cheryl Niles filled that role with her know-how from performing those duties at home.
"She would qualify for a certain number of hours, but there weren't enough qualified nurses to fill it, so we would use less and then they would say, 'Oh, you obviously don't need it, so we're reducing your authorization,'" she says. "So we would go around those kinds of circles."
Other expenses not covered by insurance included $90,000 to make their home accessible for Maddie, $7,000 for essential hearing equipment that insurance refused to cover because Maddie was "not profoundly deaf," and hundreds of dollars a month for essential medications that insurance won't cover because they're "over-the-counter."