The clinic, of course, is almost certainly @019Clinica, where two quacks have been taking advantage of desperate families of children with DIPG with an unproven treatment. 2/https://respectfulinsolence.com/2018/07/03/clinica-0-19-not-making-dipg-history-in-monterrey-part-1/ …
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This clinic charges hundreds of thousands of dollars and Drs. Alberto Siller and Alberto Garcia refuse to publish even their survival statistics because they're "too busy taking care of patients." 3/
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The
@019Clinica protocol, such as it is, is a secret "make it up as you go along" combination of intraarterial chemotherapy and an unspecified immunotherapy. 4/https://respectfulinsolence.com/2018/07/05/clinica-0-19-not-making-dipg-history-in-monterrey-part-2-of-3/ …Show this thread -
The drugs include a cocktail of up to 18 drugs, many at very low doses. There is little or no biological plausibility. 5/
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Worse, there is harm. Children have been harmed, and parents have been stranded in Mexico, unable to leave because a medical flight is too expensive but racking up $2,000 a day. The tales are horrifying. 6/https://respectfulinsolence.com/2018/07/17/clinica-0-19-making-dipg-history-part-3/ …
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But do Drs. Siller and Garcia have any evidence? Well, yes they do, but it's remarkable for how unimpressive it is. There is nothing in their questionable survival statistics better than conventional therapy that can't be explained by selection bias. 7/https://respectfulinsolence.com/2018/09/11/idoi-not-making-dipg-history-in-monterrey-part-4/ …
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So
@washingtonpost and@petulad's portraying@019Clinica with the question, "How much would you pay for one more day, one more month with someone you love?" without acknowledging the lack of evidence for its treatments and financial toxicity to the families is irresponsible. 8/8Show this thread -
Oh, one last thing. Never, ever refer to what
@019Clinica is doing as "experimental therapy." It's not. Drs. Siller and Garcia are not testing a therapy in clinical trials. They're selling it without evidence to the desperate parents of dying children. 8a/8Show this thread
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Maybe it’s your tweet that is misleading, Dr. I mentioned your concerns a couple times, including this paragraph. Making bigger leaps without deep, scientific reporting is journalistic malpractice. My readers are smart enough to draw their own conclusions.pic.twitter.com/8Dp0xe1RSJ
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The mention of concern about no science is minimal compared to the totality of the article and is immediately followed by, "But the Knotts were willing to gamble. One more day. One more month with their child. Maybe, one more year, even?" Overall narrative is as I described it.
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