FDA Blocked Lifesaving Cure For Baby With Rare Disease, Forcing Family To Go Overseas & Raise $500,000 – Ask Dr. Drew – Ep 667
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What is the main topic discussed in this episode?
Well, we have some interesting stories today. We're gonna start with Kendra Riley. Her daughters were diagnosed with uh metachromatic gluco dystrophy, or what we used to call metachromatic glucoencephalopathy. And her family had to raise five hundred thousand dollars to recloat relocate in Italy because there was a treatment there that had not yet been approved in this country. She has been fighting for the right to try. 2.0 congressional legislation designed to let people with ultra-rare diseases in particular try individualized therapies, which seems like a reasonable idea in a free country, like so many things that seem reasonable that we don't do. Follow her on X Kendra Downing. I think it is dot mm.
Okay, Kendra Donning, D-A-W-N-I-N-G. Uh 2.0 right to try would have been helpful during the paramedic pandemic, certainly. Uh Simone Gold knows that well. Dr. Gold was persecuted by the federal government. She's a Stanford educated attorney and physician and founder of America's Frontline Doctors. Follow her on X D R Simone Gold, S I M O N E. And finally, our friend Chef Andrew Gruell will join us, founder of May uh founder of American Gravy Restaurant Group, owner of Calico Fish House in Huntington Beach, which is so good. And she he does this show, Cooking with Gruel on Rumble. And RFK Jr. has been appearing on some uh streams with him. He is a Huntington Beach City Counselor running for re-election. We got to get him back in his chair.
Uh let's He has a new book. You can follow him on ex-Chef GRUL. G-R-U-E-L. We're going to start out with Kendra Riley right after this. Our laws as it pertained to substances are draconian and bizarre. The psychopath started this recipe was an alcoholic because of social media and pornography, BTSD, love addiction, fentanyl and heroin. Ridiculous I'm a doctor for f ⁇ ' sake. Where the hell you think I learned that? I'm just saying you go to treatment before you kill people. I am a clinician. I observe things about these chemicals. Let's just deal with what's real. We used to get these calls on Love Line all the time. Educate adolescents and to prevent and to treat. If you have trouble, you can't stop and you want to help stop it.
I can help. I got a lot to say. I got a lot more to say.
All right, this is Kendra O'Reilly. We're studying. I'm just looking up whether or not I've used the terminology correctly. Uh, we'll talk to her about that. Uh again, she has been advocating for medical freedom and the right to try. Two point oh, it's legislation introduced to Congress to give rare disease patients and their family a legal pathway to individualized, particularly gene-based therapies that the FDA may not have yet approved. Kendra, thank you for joining us.
Thanks for having me.
And congratulations in this fight. It sounds like you've had a great deal of success.
It it has. I I'm I'm surprised at the quickness with which we've been able to proceed and move things forward for the MLD community, but also rare disease community. Um so the fact that this treatment my daughter got in Italy is now FDA approved was a huge milestone. Um Secretary Kennedy then approved adding that disease to newborn screening in December of last year. So it's it's been an amazing trajectory. Of how many lives we've been able to save and how many families like ours won't have to deal with a situation like ours where they lose one child in order to save another.
Is this a function of the new uh sort of philosophy over there at FTA and uh doc and R R F K Junior's influence?
I don't know. I think a little bit, yes, for sure. Um, because a lot of the the process of getting the FDA approval was years and years in the making. Um and then everything got kind of upended by the administration, and the FDA approval process changed, and so there was a lot of unknowns there. Um so I think, you know, my having been in a congressional briefing in DC and um Dr. Stephanie. Heridopoulos being there and you know letting Secretary Kennedy know kind of the state of what's happening for the rare disease community did make a difference.
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Chapters
5 chapters
1
What is the main topic discussed in this episode?
0:03–9:54
2
What is Kendra Riley’s story and why did her family have to move to Italy for treatment?
9:54–24:07
3
How did Kendra’s daughter receive the experimental gene therapy in Italy?
24:07–39:26
4
What is Right‑to‑Try 2.0 and why is new legislation needed for ultra‑rare diseases?
39:26–51:21
5
How does Dr. Simone Gold view medical freedom and the COVID‑19 therapeutic battles?
51:21–59:42
Speakers
5 identifiedMore from Ask Dr. Drew
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