In hours, I & 150,000 patients will be forced off the life-saving blood thinner our doctor ordered. Since @CVSHealth leaders would meet with top docs last week about it but not patients, I want @AlanLotvinMD to know one they are hurting. This is my life. THREAD.
Please amplify.
Please amplify.
2) Here’s the house—er single wide trailer—I grew up in on a dirt road in eastern North Carolina. No silver spoon here. My dad worked at a meat packing plant 21 years doing maintenance. Strong work ethic. Never lacking for love. ♥️
3) Family raised a little livestock on the side $. I loved the goats best. This is Lollipop. I took her to Show n’ Tell at school in first grade. 🐐😍
4) I was a ‘Daddy’s girl’ & an only child. Anyone else diggin’ the bell bottoms? 🤣👖
5) I was the first in my family to go to college—the week I was born, my dad set put $5 of his $35 a week paycheck in a savings account in my name. 20 years later I went to college on it.
6) Earned Poli Sci BA @UNC & MA @NCState. Went to work for NC Medicaid 1992 doing lowly admin & project mgmt tasks. I remember during that time being honestly afraid @HillaryClinton health care reform initiative would put me out of a job?! 🤣Boy was a young & naïve starting out!
7) After NC Medicaid, I worked for @BlueCrossNC
in physician & hospital contracting. Met my husband along the way, had a child, and then….my life took a hard turn personally & professionally when I had a blood clot.
in physician & hospital contracting. Met my husband along the way, had a child, and then….my life took a hard turn personally & professionally when I had a blood clot.
8) Short version of a LONG story--my clots were not immediately diagnosed correctly. Leg pain was initially attributed to a pulled muscle. Chest pain & shortness of breath Dx as respiratory infection for which I was prescribed antibiotics.
9) Only after a second near fatal PE episode were the correct diagnostic tests performed & an accurate DVT & PE diagnosis obtained. I had a 9 day hospitalization, much in ICU. My family told I might not survive. This trauma became my initial motivation to become a VTE advocate.
10) Medical tests found I have a thrombophilia--blood clotting disorder. After recovery & hungry for any educational info about my condition, I drove 3 hours to a seminar held by @stoptheclot where for the first time I met other patients. I began volunteering with them.
11) In 2010 I began work at @UNC_SOM where I co-founded the thrombosis education program Clot Connect clotconnect.org to educate patients & clinicians about DVT/PE & anticoagulation. VERY proud of this quality endeavor. Sadly it lacks funding & is currently unstaffed.
12) This year I began helping out NBCA more. It’s a patient-led nonprofit. And other projects meaningful to me. I’m a big believer in the power of an informed patient + an informed clinician = most optimal health outcome. Patients have to advocate for themselves & family.
13) I do wildlife photography for fun…had my second gallery show in October! Spending time in nature is stress relieving. I had hoped to spend this past week of vacation out in the woods somewhere, but alas this dang formulary issue.
14) I like spending time in nature. I couldn’t hike for a long time after my clots due to leg pain. About half of patients have post thrombotic pain & disability. I’m lucky. I still have residual leg issues from my DVT, but manageable.
15) My world. He was 3 years old when I nearly died from clots. I prayed & set a goal then to stay healthy enough to see him graduate college, which he did this past May. Is it greedy of me to now set a new goal? I really want to do what my doctor instructs but CVS says I can't.
16) I’m a caregiver to several family members. People rely on me. My aunt had afib & cerebral vein thrombosis last year. I’ve been helping with her anticoagulation too. Good example of why choice needed—took going on 3 brands before finding the one which worked best for her.
17) Over the years as an advocate & educator, I’ve met family who’ve lost loved ones to DVT/PE or its treatment, anticoagulants, which while life-saving come with risks. Cried so many tears with them. I had no idea I would become one of those family myself.
18) My Dad had cancer, DVT/PE. Anticoagulated. Developed internal bleed. Uncontrollable. Died. I watched doctors try to save him. 4 years ago & still hurts like heck. Imagine how I feel when @AlanLotvinMD tells me I can't continue on the anticoagulant with the lowest bleed risk!
19) If my dad's bleeding death on an anticoagulant is too heavy a topic for you @AlanLotvinMD, this is my cat Piper. You have pets? You a dog or cat person?
20) I'm not a clinician, but by being a self-educated patient and learning everything I could about my condition over the years, I've gotten to contribute to some pretty significant VTE projects like....
21) As a patient rep I was a voting member of the Clinical Practice Guideline Panel on Thrombophilia with the American Association of Hematology @ASH_hematology advising in the development of evidence based clinical practice guidelines on VTE. Hi @MiddeldorpS who led it!
22) As a patient, I was a Member of the Centers for Disease Control and Prevention Division of Blood Disorders (CDC DBD) Expert Panel on Prevention Research & I've done all sorts of clot talks for the @CDC_NCBDDD @CDCgov
23) I was Advisor on Patient and Family Engagement to the Centers for Medicare & Medicaid (CMS) @CMSGov @HHSGov Partnership for Patients initiative under the @BarackObama admin targeting hospital-acquired conditions. DYK VTE is the leading cause of preventable hospital death?
24) I was also member of @NatQualityForum Affinity Groups on VTE & adverse drug events. DYK anticoagulants are the #1 class of drugs for adverse drug events?? Maybe that's why they require careful management & selection, you know by a CLINICIAN not a CORPORATION.
25) So you see @AlanLotvinMD I may be 'just a patient' to you, but I'm your worst nightmare because I'm an informed patient who gives back by volunteering. I can also drive a tractor…this was my granddaddy’s he bought new in 1952. It has power steering. Smooth ride.
26) So you see @AlanLotvinMD I’m a real person & not just a financial number on a spreadsheet. And I have comorbidities which only my doctor of 18 years knows about when selecting my anticoagulant. As a cardiologist, you ought to understand this.
27) My doctor of 18 years—a world renowned hematologist who helped write the dang VTE anticoagulation guidelines—knows me best. He's seen me thru biopsy, surgery, good & bad. I trust him alone to manage my anticoagulant. Photo w/ my son 6 months after diagnosis, wow time flies!!
28) I consulted multiple specialists, multiple hospitals about my care & ALL AGREED I should now be on Eliquis 2.5 BID given my unique patient profile, so I have been for 8 years. But @cvshealth says I MUST be on warfarin or Xarelto.
Who gets to practice medicine over me?
Why?
Who gets to practice medicine over me?
Why?
29) For the 150,000 patients impacted I can only pray now they navigate this change ok. I worry about those with low health literacy, low incomes. I think about folks like my dad. Some will surely end up with an adverse event from this. So unnecessary. #healthequity
30) For myself, I took a typewriter to college so this social media frenzy is a little hard to navigate! So many emotions today personally & professionally about being taken of the drug & know is best for me. How do I ignore what I know in my heart is right?
31) That a corporation PBM I did not choose to do biz with & have no ability to leave has the power to tell me which drug I get over the evidenced based decision of my doctor of 18 years, that's been the biggest shock. I'm a captive consumer. I can't believe its not regulated.
32) Thank you for listening. Appreciate the support of so many strangers out there. I'm feeling a bit anxious & somewhat depressed today. But I'll be ok. I have to be. Too many people need me. I'm a mama bear. ♥️
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