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Ron Johnson: “Let those families with fully informed consent, let them…”

Featuring: Ron Johnson, Republican | U.S. Senate, Wisconsin

Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients

Published March 10, 2026 | Video Starts at 22:49

It's not a clinic, it's a verb. It's medical practice. That's how we advance medicine. We practice on it. And particularly with rare diseases where there's no treatment, there's no drug available. Let those families with fully informed consent, let them make the decision. Not some faceless bureaucrat. that just looking for reasons to say no makes no sense. Any other questions? Again, thank you for coming. (22:49–22:55)

CLAIM

Advocates for families, not bureaucrats, to make medical decisions with informed consent.

This is an excerpt from a raw transcript. The assertions have not been audited or verified. Tap the video to view the source footage and understand the context.

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Ron Johnson

“A drug, Truril... slows the progression of disease by 50, 50 to 70%.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 01:06-01:22
“This drug [Adalarn] is safe with no deaths reported in two decades on trial.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 01:12-12:46
“Adelurin is available in Russia and other countries in Europe and South America.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 14:16-14:23
“They've been making it [the drug] available for free for 20 years.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 18:51-18:56
“10 out of the 11 of those people on that advisory panel said no.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 00:06-00:11
“Adelurin has been available under compassionate use, but we're here today because they will no longer have access to it.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 00:15-00:25
“Congress has given you, year after year, all the flexibility to show some compassion and err on the side of what the patients want.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 01:43-01:54
“Adalarn has helped me and many others [with Duchenne nonsense mutations] to maintain independence and quality of life well into adulthood…”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 12:09-12:18
“Without FDA approval or continued compassionate use, patients will face rapid decline, loss of essential abilities and preventable…”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 12:52-13:01
“Apparently there's a blacklist within the FDA of companies who make too much noise.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 15:00-15:06
“Last time when they denied or they're going to, you know, they were going to disapprove of a drug. I did contact President Trump and this…”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 15:53-16:05
“Instead of removing that drug, it put a black box warning on it, which is the appropriate thing to do.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 16:12-16:17
“In one of those cases, the complete response letter admitted they didn't look at like four or five of the submissions of information the…”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 20:07-20:15
“Adalurin, 20 years, it's helped people, they know it's helped people. It hasn't, you know, no reported harmful effects.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 20:34-20:43
“It's very difficult to control these agencies.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 21:13-21:17
“If there actually was a blacklist, you think they'd give that up?”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 21:17-21:21
“These companies again doing this for free is going to really reduce the incentive for these companies to address rare diseases.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 21:32-21:42
“They'll never make a profit on it.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 21:43-21:46
“We will dramatically decrease the number of new drugs available to be tried by people with rare diseases.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 22:09-22:18
“Get pressure on the FDA and so they can reverse these horrible decisions.”
Ron Johnson Calls To Extend Treatment For Duchenne Muscular Dystrophy Patients | Uploaded March 10, 2026 | 23:07-23:13