Thread by @BethWaldron

Please help.

PBM CVS Caremark cold called me 2x because of my TWEETS about their Eliquis drop & resulting patient harms. A 🧵

Please RT & tag your elected leaders, media, ANYONE who can help protect patients.
#TwitterRx #MedTwitter #CardioTwitter

2) For those new to the Eliquis CVS Caremark coverage issue, take a moment to read my patient story & the issue explainer I published in @RPTHjournal : onlinelibrary.wiley.com/doi/full/10.10…

3) I never gave CVS social media my phone number, subscriber number or permission to access my medical records or contact my insurance plan manager. They did ALL this before cold calling me about a TWEET I made re this @FOX13Memphisnews @FOX13Mandy story fox13memphis.com/news/local/doc…

4) CVS Caremark admitted to me Friday this is standard practice! That BASED SOLEY ON A SOCIAL MEDIA POST about the company or tagging of an exec, they will routinely ACCESS A PATIENT's RECORD & contact that patient. Does HIPPA not apply? @HHSOCR

5) How this began: I was at my mom’s Thursday when I got the first call out of the blue from N. (I will respect his privacy unlike them) who said he was calling on behalf of CVS Caremark’s President.
I said ‘from Dr Alan Lotvin?’
N. said ‘No, the Office of Karen Lynch’.

6) He began by saying ‘I see you have a prior authorization for Eliquis, so why are you are upset on twitter if you have your medication…’

OMG!!!

7) It was then that I realized I had upset the folks who have the power to approve or deny my future prior authorization requests for my life-saving medications. I felt small.

8) Do HIPPA privacy protections apply to PBMs @HHSOCR? It seems mine & my family’s medical/drug life is fodder for the folks at Caremark to pass around at any time, for any reason. Something said on social media should not be sufficient reason to access a patient record!!

9) If I wanted help with a prescription issue, I’d call customer service; I last called December. To use my Twitter ID to deduce my Insurance #, browse my meds, get my phone # to cold call me to catch me off guard to ding me for my patient advocacy? Stalker level crazy.

10) N. had also contacted my insurance plan’s account manager. He said ‘I understand the NC State Health Plan reversed the Eliquis drop 2/9 after some folks were very vocal in January’.

11) Yes, my plan @NCTreasurer did the right thing & reinstated Eliquis at the 2/9 P&T meeting after it was reported 2 thromboembolic events occurred among patients Caremark forced to switch anticoagulants for non-medical reasons. I'm grateful to my plan for taking quick action.

12) However, NC State Health Plan patients have still not been notified Eliquis is available again. I only found out by chance. They sent letters to 5,113 plan patients on Eliquis in November dropping our med, but no notification at all letting us know we have it back.

13) I asked about that & he put me on hold.
I was told some correspondence went in the mail this week & I must not have gotten it yet. 🙄 Y'all the change was done 2/9.
The next answer...it’s on the formulary on the website if patients go search for it! I called BS on that.

14) I was told my advocacy & that of @ASH_hematology & @ACCinTouch & 14 other nonprofits is misplaced. That it was up to the ~7,000 individual insurance employer plans in the Caremark network to add Eliquis back, like my plan did, not Caremark at the national level.

15) So, these 7,000 plans simultaneously on 1/1 decided to drop Eliquis? Please.
Caremark has a base national formulary (covered drug list). Companies/plans then have the choice to accept, reject or modify it. CVS dropped Eliquis at the national level, they can add it back.

16) Eliquis was dropped because Caremark cut a financially better rebate (kickback) deal with the makers of a competing drug, Xarelto. Period. It was not for clinical reasons.

17) In fact studies show Eliquis to be clinically more effective with less clot & major bleeding than alternatives. Even @POTUS takes it. But the 1 in 3 Americans whom Caremark covers apparently don’t deserve access to this save effective top therapeutic? I told him thusly

18) It's not just me.
Here’s what the American Society of Hematology @ASH_hematology told Caremark about it:

"gravely concerned"
"serious impact" on patients
"ASH urges CVS to reconsider"

They cite clinical data showing bleed risk, outcomes.
hematology.org/-/media/hemato…

19) And @advcardiohealth & 14 co-signing nonprofits told CVS it was a bad idea too:
"this abrupt change will be dangerously disruptive for patients"
"unquestionably exacerbate health equity concerns that exist in cardiovascular care"
static1.squarespace.com/static/56e6efd…

20) ACC & ASH doctors even met with Caremark medical leadership to express their concerns on Dec 22 & March 8. Caremark advised doctors to address SAFETY CONCERNS with switching to other anticoagulants in their prior auth requests. CVS KNEW.
acc.org/Latest-in-Card…

21) So it should not be surprising to Caremark that the predicted adverse events are happening. Stroke in NC, bleeds in Maryland, Tenn, it's nationwide. They were warned. Yet rather than show concern for those patients & reverse policy they focus on a patient TWEETING?

22) How can a company whose mission is health clearly KNOW in advance that a policy will cause patient harm, proceed & when those harms happen STILL won’t budge? Why?! What is the $$ arrangement between @CVSHealth @JanssenUS @bmsnews preventing quality patient care?

23) I have been a vocal patient voice. When I received the letter from Caremark dropping my med of 8 years, I got busy organizing, volunteered w/ nonprofits, published, gave @FTC testimony. CVS KNEW who I was when they called me for 54 minutes.

24) As a patient w/ a life-threatening condition dependent upon meds, I feel threatened by my insurance pharmacy benefit manager accessing my private medical records without need & using it to influence my advocacy. I am a captive PBM consumer. Patient protections are needed.

25) Tagging 4 help @linakhanFTC @FTCPhillips @RKSlaughterFTC @CSWilsonFTC @RepBuddyCarter @SenFinance
My Congress Reps: @RepDavidEPrice @SenThomTillis @SenatorBurr
My Plan/State Leaders @NCTreasurer @NCAGO @JoshStein_ @NCInsuranceDept @NC_Governor @SenatorBerger @NCHouseSpeaker