Thread by @BethWaldron

🚨🚨🚨 EXCLUSIVE AUDIO of senior CVS Caremark executives disparaging patients as "brand terrorists" who Tweet about poor PBM service accessing medications or score them low on satisfaction surveys.🧵1/

Audio is from a PBM Operations town hall event. Topic is a shift in methodology with the “Net Promotor Score” (NPS) which will allow CVS Caremark to minimize “detractors” to skew data towards being able to report more positive consumer satisfaction survey results. 2/

Survey design matters. $CVS Medicare Advantage product recently received a SIGNIFICANTLY LOWER govt rating driven by poor consumer survey results. CVS refuted the govt survey(by @CMSGov @AHRQNews) in SEC filing saying CVS's own internal surveys show higher + results. 3/

Note the first exec's subtle comment correction about dissatisfied patients from 'having ability' to leave to 'WANTING' to leave. This is a key point. Patients are captive PBM consumers. They do not 'chose a PBM brand'. Insurance does. They CAN'T leave. 4/

Why would insured patients score the company low & why are they & doctors increasingly turning to Twitter & other social media for help in getting medication approvals? And does this really constitute "brand terrorism"? Let's look at their motivations. 5/

Here’s the father of a 19-year-old, now sadly in end-of-life care. During a recent 51-day hospitalization the parent's got a letter from CVS Caremark denying the daughter's seizure medication she’s been on for 17 YEARS. Is this dad a “brand terrorist” for Tweeting about it? 6/

Or this sister of woman w/ pancreatic cancer who had her enzyme medication she needs to digest food denied by CVS PBM. When out of desperation she reached out to @mcuban on Twitter begging for help even though the drug isn’t generic, was she merely a "brand terrorist"? 7/

What about all these insured patients who recently couldn’t access their medications. Is a desperate patient who simply needs their medication & has nowhere else left to turn but cast a plea into the dark void of social media a “terrorist”? 8/

Or, maybe these patients are the "brand terrorists"? Plenty of examples & this is just Twitter, it's all too common across all social platforms. Patients turn to social media because they feel powerless & they are literally crying out for help. 9/

Or what about these heart patients—all consumers who despite PAYING PREMIUMS💵 & having coverage still couldn't access the life-saving medication their doctor prescribed & were terrified of stroke or DVT/PE--does that makes them a “terrorist” if they speak up & Tweet about it?10/

Or maybe these doctors? If they advocate for their patients on Twitter so that their patients can simply get the medication they prescribe, are they PBM “terrorists” too? 11/

Or maybe these doctors? When their heart patients had their anticoagulant non-medically switched by CVS Caremark & adverse strokes & bleeds resulted in previously stable patients, should they have remained politely silent or are they “terrorists” for advocating on Twitter? 12/

I rarely tweeted until this year. Not until CVS Caremark non-medically switched me from the anticoagulant I’d been stable on for 8 years did I turn to Twitter for help for myself & for others. Do "terrorists" get published in medical journals?🤔 13/ onlinelibrary.wiley.com/doi/full/10.10…

I & the 150,000 heart patients who had our long time blood thinner dropped by CVS Caremark are not “brand terrorists”. We simply wanted the medication our doctors prescribed so we didn’t have a stroke or clot. Now I want patient protections to prevent such harms. That bad? 14/

When 19 cardiovascular nonprofits could not convince CVS Caremark to do the right thing for heart patients, what other choice did powerless patients have but to share stories online in the hopes our pleas would be heard? My gosh strokes & bleeds were happening! 15/

CVS Caremark made a dangerous formulary decision resulting in adverse events & despite being warned, they proceeded because it was profitable & reversed it only after an outcry, partly on Twitter. 👉Federal investigation is warranted & protections MUST be enacted. @SenFinance 16/

If not, it WILL happen again. Without strong consumer protections, patient safety is at risk!!! PBMs have demonstrated they will not put patients first if left to self-policing. We are mere data points for profit. @FTC 17/

PBMs have taken steps to silence patients, physicians & pharmacists who are vocal on social media, reporting content & accounts for 'violations'. Don't like the message, get rid of the messenger. Even clear humor such as @DGlaucomflecken is not immune. 18/ managedhealthcareexecutive.com/view/how-a-for…

How can there be NO federal protections preventing a PBM from changing the medication a patient has taken for years & doing well on over the prescribing advice of their physician? Seriously. How is this legal? Ban all non-medical switching. Just do it. It's common sense. 19/

How can there be NO consumer protections preventing PBMs from forcing patients to try & fail multiple drugs they get kickbacks on before they can take the one their doctor wants? Know what failure on a blood thinner looks like? Stroke, PE or bleed--all potentially fatal. 20/

Why then might folks object when seeing the company's leadership throw themselves lavish private celebrity concerts with record billion $ profits while simultaneously denying premium paying patients medications? Yet if we Tweet about it, we're "brand terrorists"?🤦‍♀️21/

The level of contempt for captive PBM patients is astounding. PLEASE take action to protect us. We just want affordable access to the medications our doctors prescribe, without hoops. That's it. 22/ @MikeCrapo @RonWyden @RepBuddyCarter @SenFinance @linakhanFTC @BedoyaFTC