Although moving, this article in @washingtonpost by @petulad is really misleading, specifically about that Mexican clinic mentioned as a source of hope and at which the parents spent nearly $700,000 to treat their child for DIPG. 1/https://www.washingtonpost.com/local/how-much-would-you-pay-for-one-more-day-one-more-month-with-someone-you-love/2018/09/13/f6ad8c88-b75e-11e8-94eb-3bd52dfe917b_story.html …
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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
End of conversation
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