Families affected by Huntington’s disease face a relentless neurological illness with no treatment to slow or stop its progression. Today, that may be changing — but whether scientific progress becomes real hope depends on federal leadership.
Huntington’s disease is a rare, inherited, and ultimately fatal brain disorder that often strikes in midlife. HD typically progresses over 10 to 20 years, steadily robbing individuals of their ability to think, move, and live independently. Combine Parkinson’s, Alzheimer’s and Lou Gehrig’s disease and you’ll have something like HD.
Each child of an affected parent has a 50 percent risk of inheriting the disease. As symptoms worsen, affected individuals and caregivers are forced to quit working, creating devastating financial consequences for families across generations.
My father died from complications of HD, as did both my brothers and one of my four sisters. None lived much past age 60.
After decades of setbacks, the HD community now stands on the brink of potential breakthroughs. Novel therapies driven by advances in gene-targeting science and sustained research investment aim to slow disease progression.
In a 2024 survey, nearly three-quarters of respondents said they would accept treatment risks if those risks offered the possibility of five years without disease progression.
Congress must act now. Lawmakers should urge the FDA to fully utilize the Accelerated Approval authorities Congress has provided and ensure that all promising HD therapies receive timely, flexible, and science-based review grounded in the totality of the evidence.
For HD families, time matters.
Eric Hougland
Durango