Discover and read the best of Twitter Threads about #BCBSTN

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THREAD FOLLOWS: If you didn’t get to read my article, I’m going to share the medically inappropriate #BCBSTN #Idursulfase #medicalpolicy and the denials we’ve received as part of that.…
Quick Primer on ultra #raredisease #HunterSyndrome: multi-system disease physically affecting bones, joints, liver, spleen, heart, airway, nervous system, auditory system causing progressive damage, function loss, pain, enlarged organs, carpal tunnel, hearing loss
2/3 of #HunterSyndrome patients also suffer cognitive impairment, behavioral challenges like combo ADHD/autism/OCD/SPD early in life. Some never learn to speak. Difficulty following basic commands, can’t follow sustained or complex requests.
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