Me before the spiral. #MGStrong: battling for years but making it work (and look how cute we were!) Engaged. Full-time biostatistician, Dog mom. #MyastheniaGravis #IhaveheardofMGpic.twitter.com/73lz6E3yzG
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Let me tell you a short story about #RareDisease and a horribly, illegally handled appeal for a life-saving med. (Warning: Graphic) #IhaveheardofMG #MGStrong @AnthemBC_News @PatientsRising @NPRHealth @MLive @annarbornews @DrashmanCNN @Channel4News @wxyzdetroit @MyastheniaOrg
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Then my
#MyastheniaGravis flared...and never stopped. Unable to chew or swallow much beyond soup (& still w/aspiration pneumonia), walker-dependent, speech nasally and slurred, breathing always labored.#IhaveheardofMG#MGStrongPokaż ten wątek -
I could no longer sleep in bed, even on BiPAP – laying flat collapses my weak throat and paralyzes my diaphragm – so I moved to my sectional couch (which my dogs love).
#IhaveheardofMG#MGStrongpic.twitter.com/oxpHPnYhXl
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Myasthenic crises followed one after another. And yes, I’m fully conscious on life support. It’s excruciating, but you can’t stop fighting.
#IhaveheardofMG#MGStrongpic.twitter.com/9QWRVrC1ky
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My docs and I knew I needed more aggressive treatment - Rituxan from
@Genentech. But@AnthemBCBS quickly denied it: "not medically necessary."pic.twitter.com/aaYYXErGFZ
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The denial's based on bad policy:
@AnthemBCBS’s CG-DRUG-94 policy says it’s updated 9/13/2018, but no lit on MG goes past May 2016.@Genentech https://www.anthem.com/medicalpolicies/guidelines/gl_pw_d080168.htm …Pokaż ten wątek -
We fought the denial, but
@AnthemBCBS said no exemptions – period. Claimed 20-yr-old treatment was “investigational.” (Sound familiar @DrashmanCNN ?) Stayed stubborn in P2P review. https://cnn.it/2De5NNBPokaż ten wątek -
Tried expedited appeal.
@AnthemBCBS made up rules as we went, like no faxed documents, or word “appeal” must be in letter body.Pokaż ten wątek -
Then,
@AnthemBCBS closed my expedited appeal (despite 72-hr mandate) without telling us…while I looked like this:@AnthemBC_News@URAC@PatientsRising@NPRHealth@MLive@annarbornews @DrashmanCNN@Channel4News@wxyzdetroit#IhaveheardofMGpic.twitter.com/ZVpujzRf5e
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Asked for info on the docs involved in my case (legal right), and was given this, as per
@AnthemBCBS’s “company policy”:@URAC@AnthemBC_News My guess: the docs weren't qualified to assess. What do you think, @DrashmanCNN?@patientsrising?pic.twitter.com/WKsMd5LCSx
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All appeals exhausted thru
@AnthemBCBS & “complete” case packet received: nothing in it but what my team sent. No real proof Anthem docs reviewed case. Again, familiar @DrashmanCNN ?https://www.cnn.com/2018/02/11/health/aetna-california-investigation/index.html …Pokaż ten wątek -
But I don’t take anything lying down. (Partially ‘cause I can’t lay down! Hah!) Already wrote to
@URAC@Genentech and asserted my legal rights to@AnthemBCBS, demanding case be reopened/decision reversed. Other rights stunted: self-insured plan.Pokaż ten wątek -
Sent full story to
@NPRHealth@MLive@annarbornews CNN (cc: @DrashmanCNN)@Channel4News@wxyzdetroit@patientsrising@SenGaryPeters@SenStabenow@RepDebDingell and it's circulating on FB: https://www.facebook.com/ashley.cotten.372/posts/10105382906489344 … People will see you for who you are,@AnthemBCBS@AnthemBC_NewsPokaż ten wątek
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