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Policymakers Must Do Away With Our Outdated Healthcare Regulatory System

March 14, 2023

Keira Riley turned 3 years old in January. She loves mac and cheese, would buy a Barbie Lego if she won $1 million, and wants to be Elsa from Disney’s Frozen when she grows up. That she is growing up in the first place is what makes her story both bittersweet and extraordinary.

Three years ago, Keira’s older sister Olivia was diagnosed with a rare and highly progressive disease called metachromatic leukodystrophy, or MLD. Olivia was 2 years old at the time. Keira, then a baby, received a similar diagnosis shortly thereafter.

The National Institutes of Health explains that MLD “causes progressive destruction of white matter in the brain,” resulting in “progressive deterioration of intellectual functions and motor skills,” and that affected people eventually “lose awareness of their surroundings and become unresponsive.” What this really means is that, instead of running, playing, and singing, these young children fade away physically and mentally until death, which usually occurs by age 5.

Read the rest of the op-ed in Washington Examiner.

Naomi Lopez is Vice President for Healthcare Policy at the Goldwater Institute.

 

 

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