opinion
ALS carriers fear research setbacks under Trump
Mindy Uhrlaub, who carries the C9orf72 mutation that causes ALS or frontotemporal dementia, says that years of advocacy and participating in research studies gave her hope that science would produce a treatment before symptoms appear.
But in a new First Opinion for STAT, she argues that recent federal research funding cuts under the second Trump administration have slowed or paused key ALS and FTD studies, undermining progress just as genetic therapies seemed within reach. Uhrlaub, whose friend in a C9 prevention study recently developed ALS, says the cuts leave presymptomatic gene carriers fearing that promising treatments may arrive too late for them or their children.
"The second Trump administration has already had a devastating impact on medical research and lifesaving advancements for diseases like ALS," she writes. "In the face of more funding cuts, I vow to get louder."
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opinion
Medicare delays stall access to breakthrough devices
Even when the FDA clears promising "breakthrough" medical devices under the 21st Century Cures Act, patients often can't access them because Medicare coverage lags years behind approval. Opining for STAT, Stanford physician-inventor Josh Makower notes that it takes an average of 5.7 years for newly authorized breakthrough technologies to receive even basic Medicare coverage — the famous "valley of death."
Makower says legislation now under consideration in Congress would narrow that gap by allowing temporary Medicare coverage for a small number of qualifying breakthrough technologies while additional data are collected. The policy, he says, would affect only a handful of products each year and cost roughly $100 million annually — a negligible amount relative to Medicare's budget — while potentially speeding lifesaving technologies to patients and preserving U.S. leadership in medical innovation.
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