'Will [lawmakers] keep up with the promise of 21st-century medicine, or will they leave even more patients behind in an outdated regulatory system that’s tangled in red tape? Lives are hanging in the balance,' Naomi Lopez writes.
in January. She loves mac and cheese, would buy a Barbie Lego if she won $1 million, and wants to be Elsa from Disney’swhen she grows up. That she is growing up in the first place is what makes her story both bittersweet and extraordinary.
Keira had not shown any symptoms yet, and there was a very short window in which a promising gene therapy that was not yet available in the United States might dramatically halt or slow the progression of this unimaginably cruel disease. Treatment was too late for Olivia, but there was still hope to help Keira.for several months during the height of the COVID pandemic, and obtained the treatment for Keira in October 2020.
Obtaining a personalized treatment for a rare disease should be the norm, not the exception. Rapid medical innovations are increasingly delivering the right treatment and care to the right patient at the right time.that the company is partnering with Atrium Health to expand its hospital at-home model that it piloted during the pandemic.
That is why it’s imperative that policymakers make it a top priority to reimagine healthcare regulation. Government rules, regulations, and red tape are too often completely out of step with the promise of 21st-century medicine. Lawmakers must embrace innovation.
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