Cuts to research steal time we can’t buy back from Huntington’s disease

“You pay for it now, or you pay much more later.”

My wife’s father said that often. Ken wasn’t a policymaker or a scientist. He was a dad who lived and died with Huntington’s disease, passing in 2011 from complications of the same illness that now tightens its grip on his daughter, Jill, who was diagnosed as gene-positive seven years ago.

Jill’s mom and dad were social workers, what I call big‑picture thinkers. They knew that what is done today shapes tomorrow for everyone we love. Jill describes it like a crack in a windshield: It starts small, but before long, it splinters and spreads across everything in sight.

Ken knew what deferred costs look like in real life — not just in dollars, but in wheelchairs, hospital beds, and the silence that slowly replaces laughter around the dinner table. His lesson is simple and infuriatingly easy to forget: When leaders cut or stall the funding that powers medical research and clinical infrastructure, the bill doesn’t disappear; it grows.

The “savings” turn into delays: fewer basic discoveries, staff who can’t stay, trial sites that can’t keep their doors open. Delay is expensive. It costs families like ours time we can’t buy back, and it costs society many times more to rebuild what was allowed to fall apart. That’s why Ken’s words return to Jill and me now.

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‘Later’ is not an option

Political choices made over the past nine months have already narrowed the pipeline rare disease communities depend on — for instance, deep cuts to medical research at universities and the National Institutes of Health — leading to major disruptions in clinical collaborations and patients receiving diagnoses and treatment.

In our house, the ledger of consequences shows up in daily life. Because Jill is gene-positive, over the next decade, the disease will keep relentlessly advancing, first, in more trouble with balance and chorea that turns simple tasks risky.

Then speech becomes hard to understand, swallowing grows dangerous, and thinking and planning slow down until help is needed for basics that once felt effortless. Huntington’s disease doesn’t bargain. It doesn’t pause when budgets do. And one day, our daughter, Alexus, may face the same inheritance, as she is also gene-positive.

That’s why “later” is not an option. Research is the lever that can slow, alter, or someday stop what Huntington’s tries to take.

Recent decisions have made that lever harder to pull. Fewer grants mean fewer chances to test ideas that could lead to therapies. Cutting or capping the support that keeps labs and trial sites running doesn’t trim extras; it removes the coordinators who enroll patients, the data teams who safeguard results, the nurses who keep visits safe and on time.

The stop‑start uncertainty around funding forces universities to freeze hiring and cancel experiments, pushing young scientists away from rare diseases that need them most. Restarting what closes is slow, costly, and sometimes impossible.

Huntington’s won’t wait

Can we recover if funding stabilizes? Possibly, but not overnight. If we fight for and protect research now, labs can refill positions, funding pipelines can normalize, and paused projects can restart within a year or two. That still means lost months, lost trainees, and delayed results, but it’s recoverable.

But if cuts continue, or even deepen, then it will take even longer to make up for all the ground that is being lost. Huntington’s won’t wait that long. Neither will the families counting on the next trial to be closer, safer, and smarter.

So what can people do? Start close to home. Share stories with neighbors, faith communities, employers, and local leaders. Remind them that rare disease families live in the same county they do. Support Huntington’s disease centers and nonprofits that bridge gaps when grants falter. Call representatives and senators to demand stable, predictable research funding and policies that protect clinical infrastructure. Show up for advocacy days. Write letters. Make the calls. Ask hospital foundations how to sustain trial coordinators and registries that keep studies ready. Every voice adds pressure. Every month of stability prevents years of repair.

Ken’s warning was never about fear; it was about responsibility. Pay for it now — invest in people and science while they can still change the future — or pay much more later, in lives diminished and systems rebuilt at a premium.

For Jill, for Alexus, and for every family on this road, the choice is clear.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.