I have Crohn's – a chronic, incurable, inflammatory bowel disease. All of these three prescriptions are to help me manage that disease. All of these three prescriptions will not be covered.pic.twitter.com/hckdZ4uIvq
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[as always, jokes = blocked] Usually, about 95% of bile acids are absorbed in the terminal ileum. I don't have a terminal ileum. There are meds that bind to bile acids, they're not perfect. https://en.wikipedia.org/wiki/Bile_acid_malabsorption …
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My microbiome is massively, titanically, deranged. And my intestines spasm, and constrict, and hurt (i.e. I meet the diagnostic criteria for IBS). And this is what my life is life:https://twitter.com/mattbc/status/983266869456048128 …
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The Hydrocortisone/Pramoxine cream is on this list of drugs that
@US_FDA considers to be "less than effective" – do you know how absurd that is? It's a cream for ano/rectal use – the corticosteroid is an anti-inflammatory, the pramoxine is a topical anestheticpic.twitter.com/mMU48tpcM2
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The Hydrocortisone Acetate 25 mg suppository was supposed to be Plan B if they wouldn't pay for the Hydrocortisone/Pramoxine cream, and for, what I'll call, breakthrough inflammation. The suppositories aren't covered either. Because FDA considers them to be "less than effective"
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The hyoscyamine is an anticholinergic – the antispasmodic properties of which are incredibly useful to me. The hyoscyamine offers a brief window of respite from this:https://twitter.com/mattbc/status/938530951528960000 …
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This may read as arrogant, but please know that arrogance is the furthest thing possible from what I'm feeling: I'm good at this. I designed my entire graduate education around this. 2 yrs of public health school. 3 yrs of law school. My professional practice since graduating.
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...my professional practice since graduating has included helping health care professionals appeal coverage denials for their own care. And so I appreciate your support and your outrage, but please believe me when I tell you that I understand how this system works.
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(Those of you with advanced training in medicine – yes, I know Bentyl is a thing. It's inferior for my use case to simple hyoscyamine.)
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Why are these items not covered? Please see this short thread:https://twitter.com/mattbc/status/994363663006994432 …
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Basically, this is a federal issue. The interplay of the Social Security Act and the way the FDA works means that there's this list of drugs that's not eligible for federal reimbursement. (see thread for more)https://twitter.com/mattbc/status/994357925463326720 …
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Completely related aside: we NEED more health care professionals in Congress. This is, ultimately, a problem created by the federal government – a complicated, technical, difficult to grasp problem. But here's the thing, someone like @DrMann4Congress would get it instantly.
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I know that if we elect HCPs like @DrMann4Congress, there would be a group of electeds I could go to and say, "you understand why this is a problem, can we work together to fix this for patients?"https://twitter.com/DrMann4Congress/status/970779700707647494 …
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Yes, I'm fighting the denials. But given the complete bar to federal reimbursement, I am not hopeful.https://twitter.com/mattbc/status/993972922686607360 …
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End of conversation
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