This Parkville girl needs a $20,000-a-month drug

By Nomin Ujiyediin,

Published June 8, 2023 at 4:00 AM CDT

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In January, a Parkville family learned their 8-year-old daughter had a rare illness. Though there is no cure, there is a drug that could help slow the disease. The problem? It costs more than $200,000 a year. Plus: Kansas politicians make bold claims about how to stop population declines in rural communities. Their efforts may not be enough to reverse the trend.

In January, Alison Anstaett learned her daughter Ella Mae had Batten disease, a rare condition with a difficult and terminal prognosis. The drug showing promise in slowing the disease isn't covered by their insurance because it's still in clinical trials. A year's supply would run them $240,000 each year. KCUR’s Noah Taborda reports the family is trying to raise money to cover expenses.

Politicians have long promised one policy or another would stem the shedding of population that’s defined rural Kansas almost since homesteader days. Dylan Lysen of the Kansas News Service reports the forces making small towns even smaller persist.

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Kansas City Today is hosted by Nomin Ujiyediin. It is produced by Paris Norvell, Byron Love, and KCUR Studios, and edited by Gabe Rosenberg and Lisa Rodriguez.