Updated

Updated · KUTV 2News · Jul 24

Morgan Hill Receives $3.5 Million Niemann-Pick Treatment, Flying to Chicago Every 2 Weeks

Updated

Updated · KUTV 2News · Jul 24

Morgan Hill Receives $3.5 Million Niemann-Pick Treatment, Flying to Chicago Every 2 Weeks

1 articles · Updated · KUTV 2News · Jul 24

$3.5 million in annual drugs is helping 21-year-old Morgan Hill manage Niemann-Pick disease, a rare fatal disorder her family says may make her the only diagnosed patient in Utah.
Biweekly trips from Utah to Chicago let Hill receive infusions of a new drug at a hospital specializing in Niemann-Pick, and her parents said the treatment has boosted her energy and helped her eat on her own.
The disease disrupts how cells process fats and cholesterol, and Hill describes its effects as resembling Alzheimer's, dementia and Parkinson's.
Her family says Niemann-Pick is often misdiagnosed and argues earlier intervention can slow progression even though there is still no cure.

Sources

Why must a Utah woman fly to Chicago every two weeks for Niemann-Pick treatment, and what does that reveal about rare-disease care access?

How can one rare-disease patient’s therapy cost over $3.5 million a year, yet still leave unanswered questions about long-term outcomes?

Could Utah be missing more Niemann-Pick cases, and what signs should families and doctors catch before years are lost to misdiagnosis?

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