help me get my meds
Captive customer worth $$$
As a small land and homeowner in a county outlying your Marble Falls’ facilities, I am a captive audience for the services you offer. As a patient with multiple chronic diagnoses, my lifetime value as a customer is in the hundreds of thousands of dollars. You just have to keep me alive.
I’m told that anybody can develop asthma at any time. I’m still alive to write to you today because I’ve had asthma all my life and I know how to stay alive with it. Let me dispense with $10-words like egregious and say it this way—had a different patient encountered this same administrative violence, you might very well not ever have heard of them until it went to trial.
I need your help to get my meds.
I don’t think there’s any malicious intent, but the longer this drags on, the more it begins to feel personal. It’s personal to me to get up at 3AM to take another breathing treatment because I can’t draw air.
I think it’s incompetence, broken communication channels, lack of oversight, and I realize that’s all against the backdrop of an ongoing pandemic, which could only mean everybody’s overworked and understaffed. I’m not your paid consultant. I’m an untrained unpaid adjunct in my own care. I should have no reason to know this much about or this many of your staff.
I am grateful to be under the skillful care of Dr. C.
When my previous pulmonologist suddenly quit their practice in Fredericksburg last year, I scrambled to get on Dr. C waitlist. I was lucky enough to meet with him once, last September, and was heartened by his concern and his compassion. He listened to me and understood my experience as a highly allergic, eosinophilic asthmatic.
Yupelri and Formoterol
When I told him that I really like having a certain type of medicine on board, he made a special note. He told me then that he wasn’t changing my diagnosis but that he was going to code me as having asthma and COPD in order to get a new medicine called Yupelri approved by the insurance.
He made a separate note in his comments that I “cannot tolerate HFA.” Hydrofluoroalkane (HFA) is the propellant in handheld inhalers. I have an adverse reaction to it.
Switching marketplace insurance
I made clear to him, to others on staff there as well as their colleagues in Dr. Lele’s office, and to still others at the in-town clinic, that I was switching my marketplace insurance at the end of the year, when the window opened, to a program that was accepted by BSWH.
I paid out of pocket for the privilege of having my case followed by this talented pulmonologist and I do not regret it. This note will surface again in the narrative.
Cannot tolerate HFA, even though I really want to
“Normal” asthmatics get to take their prophylactics, preventative medicines, as a handheld, once-a-day puffs of air from a blister pack encased in 27-cents worth of hard plastic. Because I suffer adverse reactions to HFA, I need to take them prepared as inhalation suspensions for use in nebulizer machine.
When I have all my medicines on hand, I take almost two hours of treatments a day. And I am grateful to have the chance. Because the alternative is a slow living death, or annihilation. Which is what I’m facing right now, Ms. Jennings.
Yupelri took a month to fill the first time, too.
Formoterol is a long-acting beta2 agonist (LABA). Yupelri is a long-acting muscarinic antagonist (LAMA). It’s new. It’s not available in generic. I don’t think it’s available as handheld plastic. Nurse Kevin finally took it in hand and shepherded it through the payor and specialty pharmacy processes. I’m not sure if Kevin is still on staff there, but he was great.
Continuation of care
I ran through the last of my meds on the weekend of February 4-5.
Those medicines had been provisioned by the local pharmacy (refrigerated Formoterol) and a specialty pharmacy (Yupelri), and paid for by the previous insurance company.
I forgot we’d need to rerun all the hurdles this year for this insurance.
Even still, Ms. Jennings, I could not have foreseen the tangled cluster I’d encounter. I have the time-proven expectation of these things being handled for me.
My only responsibility as a customer should be co-pays and compliance. I can’t comply with medicines I can’t get.
My reasonable expectations
Thorough and transparent prescription provisioning
By thorough, I mean to include the initial fill and all refills as well as prior authorizations, appeals of denials of prior authorizations, appeals for formulary exemptions, and still other machinations of which I shouldn’t need to be aware because of the transparency with which it’s usually handled on my behalf as the paid-in-full client.
It is not my job to hustle scripts.
Clear professional comms include timely responses, promises kept, and follow through.
Time and again, as you’ll see below, staff are not being proactive and not taking the initiative to pursue refill requests to a conclusion. Any conclusion. They just bounce the ball and say, “Welp, it’s not in my court.”
The burden of communication should not fall on she who has the least breath.
It would seem that the Specialty Clinic Office Management has not properly staffed the various desks in order to allow for nurses to do this work. The issue also appears to be one of training.
At every contact point, I find staff have, however, been well trained to make the following statements:
1) “It’s the insurance. It’s not us. Have you checked with the insurance?” and
2) “You have to advocate for yourself.”
Ms. Jennings, our envelope today is as thick as it is, and I am alive to send it, simply and only because I advocate for myself.
I am speaking up.
Lastly, I have the hope, if not the expectation, that I will not face retribution from any provider.
After all, I am barely surviving the administration’s standard operating procedure, were you to institute retributive action or punishment for speaking out, I’d be toast.
It is for fear of retribution alone that you have not heard from the BSWH social media team as have your counterparts at the insurance company and their pharmacy benefits vendor. Please know that I have taken as many or more steps of self-advocacy with them as I have with your house. I reflect below only some of my communication with BCBS as it completes their side of the back and forth.
This must be what brisket feels like, blown on all sides by smoke.
I am not one of your staff.
I do not know the process for getting prescriptions filled. Nor have I ever had to. I do not know the proper jargon for medical finance.
Yet I have been forced to keep inserting myself, poorly and inarticulately, into this project if only to float my name and my needs back to the top of the inbox.
Attempts on my own behalf have been exhaustive and exhausting
Note: Fridays are marked in red. It’s one learned trauma response of a lifelong asthmatic. One simply does not go into weekends unmedicated or undermedicated. I do not want to go to urgent care. I do not want to go to the emergency room. I do not want to be hospitalized.
And I do not want to die of asthma when we all know what drugs I need to not do that.
Day February 4, 50ran out of Formoterol and YupelriFebruary 61called Kingsland pharmacy RE: FormoterolI was told they sent prior authorization to the clinic. I was told to call insurance to expedite. called the clinic (x7211) to ask for helpI was told I’d hear back. I did not hear back. called the insurance to expediteI was told we can’t expedite because no request had been made. received call from Direct Rx RE: YupelriI was told they were awaiting prior auth (PA). received call from Christine to confirm that I’d switched insurance at start of the yearI was told, “Oh, well no one told me.” “We thought you had PA through Sept 2023.” We then discussed that we do not need to pursue PA for Nucala, an injectable monoclonal antibody because I’m getting a new monoclonal antibody from Dr. Lele. Christine called later to inform that Dr. Lele confirmed, No Nucala.February 72sent patient portal message to pulm I informed that I’m out of both meds.February 149sent patient portal message to pulmI informed that I’m still out of both meds. I requested the name of the asthma scale to see what my score was. received call from Christine I was told we need formulary exemption for Yupelri and appeal denial of PA for Formoterol. called the clinic (x7211)I was told Christine will call back EOD with progress. I did not hear back.February 1510received call from Cindy in clinicShe wanted my help to work the PA for Nucala. I explained AGAIN that we are not pursuing Nucala and advised to see her colleague’s notes. She tried to hang up on me, but I stopped her and asked about the drugs I still need. She said she’d look into it and get back. I did not hear back. I sent my call notes from above to the patient portal. I think they’re instructive here. Thanks for that, Cindy. I’m not sure if you’re the Cindy I spoke with on the phone this morning. I wanted to capture our call notes here to assist in returning my asthma to controlled status. 1) I reiterated that Christine spoke with Dr. Lele and confirmed that we will not pursue Nucala. I will not be taking it. Work on a prior auth for Nucala can stop. 2) I stated that Christine advised last week that, according to my understanding, we are A) awaiting BCBS to execute a formulary exemption for one nebulizer solution and B) pursuing an appeal of the denial of prior auth for the other nebulizer solution. 3) I informed that, without these drugs, I am returned to the previous protocol on which I first met Dr. C, which he called inappropriate, and my asthma “severe and uncontrolled.” 4) I have retaken the ACT assessment tool. I think it was 5 when I met him. It is 10 today. I miss daily functionality. I miss the ability to simply wash my hair. Or fetch the mail. Or fold and put away clothes. 5) You stated that you would connect with Christine after our call and let her know that I am awaiting update and guidance as to what I can do to expedite these processes. 6) I stated that I have already spoken with the insurance and was told that, last week, that there were no claims yet to expedite. 7) We are still in cedar season and not outside the possibility of another freeze event. I don’t want to meet any of you as an inpatient. Thank you so much for helping. I did not hear back.February 1712called the clinic (x7211)“This user is not accepting phone calls at this time.” called the Specialty Clinic contact centerI spoke with J, I asked for and was given the name of the Specialty Clinic’s Office Manager, Elizabeth Langbine? but was given no way to contact her, and was deftly averted from leaving a message for her. I was told Christine would call me back. I did not hear back. called Kingsland pharmacyI inquired retail price in case I might pay out of pocket. $239.99 for 15 days. I decided to wait one more week. called the clinic (x7211) again “This user is not accepting phone calls at this time.” called the Specialty Clinic contact center I spoke with Je, I was told she was sending a high priority message to them. I did not hear back. called the Specialty Clinic contact centerI spoke with G who put me on multiple brief holds while he attempted to call the clinic. He called four numbers from his internal extension and nobody answered. It was at this time that G agreed to take a message for the Office Manager. In fact, it was G who talked me into this action because I was afraid of retribution. G, a kindly older gentleman, by his voice, assured me that he could see from the notes in my file and, indeed, his own time with me, that I had tried everything I could and that escalating to the Office Manager was the only logical next step. I learned that her name is Elizabeth Langley, not Langbine. I did not hear back. called the insurance againI was transferred to the pharmacy benefits provider, which makes me wonder if the last time I called I had spoken to somebody who was in a position to give me true, correct, and up-to-date information. I was told that I’d need PA for formoterol and formulary exemption for Yupelri, which we already knew. I was told that they’d last heard from the clinic on January 31. sent patient portal response to my PCPResponding to their auto-generated form that I lower my cholesterol with diet and exercise, I said that I can’t exercise if I can’t breathe. And I can’t breathe until I get my meds. Requested help in getting meds. Karen M. read Cindy’s notes and we both agreed that it looked like progress was being made. We were wrong, Ms. Jennings.February 2015called the clinic (x7211)I was told they’d get Christine to call. I took my regularly scheduled call with my PAYING client, at which time…… Christine called and left VM from the Nurse’s Triage Desk in Austin, who’ve only recently been tasked with helping out the Specialty Clinic. Until then I thought she was C's nurse. called Christine backI left msg with Je to get Christine to call back.10:14 AM inexplicably, Cindy called insteadI was told she was calling my other phone number. I advised that I do NOT HAVE another phone number and asked her to please remove it, which was glibly ignored. I advised that C coded me as COPD in order to qualify for the Yupelri and that it needed a formulary exemption as per the insurance. Further advised that I cannot tolerate HFA and that Formoterol needed to appeal the PA, per the insurance. I was told that she’d just resubmit with that new info. It was not new info. Resubmitting does not solve the problem of providing supporting material as requested by the insurance. I did not know this at the time to tell her how to do her job. Nor should I have to. Cindy asked me to have my pharmacies resend the PA forms. called the local pharmacy, per request aboveI asked them to re-fax the PA form. was calling the specialty pharmacy when I received call from ChristineI was told she was “doing it electronically, hopefully it will be faster” and that she’ll wait to hear from the doctor. With regards to what remains unclear. I think she said she was going to “pend” the prescription to him again with the COPD code. But I don’t work there and I don’t know the industry or Corporation jargon. I shouldn’t have to.February 2116called the insurance again Attempting to confirm, from that end, their receipt of the two PAs or Rxes or to at least ascertain progress, if any. The insurance company’s contact center software failed multiple attempts to transfer the call to the pharmacy benefits vendor and so, I tweeted at the insurance company, andI almost immediately gained one dedicated Customer Loyalty representative who worked these two meds with me daily since. Her name is Darla.February 2217call with DarlaI was told she sent emails to Prime Therapeutics and the Texas Pharmacy. She sent the emails marked as “escalated” and sent follow up as we spoke. was told “I really thought I’d hear back yesterday.” February 2318call with DarlaI was told that Darla was told that it takes 24-48 hours to load if it comes in over fax. Notwithstanding that Christine said she was sending it digitally on February 20. February 2419call with DarlaFinally received confirmation of rec’t by Prime Therapeutics. Receipt of PA or Rx, unclear. Why am I not speaking directly with them? Because they weren’t even sending phone calls to them. patient portal message to pulm I detailed everything I had heard from Darla which should have given enough info to Get Me My Meds. I did not hear back. multiple calls to Pulm and Specialty Clinic Contact Center not itemized here, but… … I asked each contact with whom I spoke, “What do they want me to do if and when I’m not able to control my severe asthma at home? Should I call an ambulance? Should I give myself an epipen? Should I have a friend drive me to the Emergency Department?” I spoke with Cindy about getting a prescription for prednisone. We discussed the well known negative considerations of taking such a powerful drug. Cindy called in a prescription for prednisone as well as methylprednisone. I decided that safe was better than sorry and started a round of steroids that afternoon. Even if it means my feet are going to break again. February 2419took 20 mg prednisonePrednisone is known to leach calcium resulting in brittle bones. I already have a history of fragile breaks. Administrative incompetence becomes violence. I resent having to resort to these last ditch measures to stay alive. February 2520took 10 mg prednisoneFebruary 2621took 10 mg prednisoneFebruary 2722took 10 mg prednisoneFebruary 2723called the clinic (x7211)“The user at this extension is not accepting calls at this time.” called the Specialty Clinic Contact CenterI spoke with Marie. M asked if I was calling about the Nucala. I advised AGAIN to remove Nucala. M found and deleted, finally, the extraneous phone number from two screens. She read me the progress notes from various parties, which are, like these, abbreviated, informal, incomplete and poorly done. Judy called to reschedule appt I asked her if she knew when I’d get my meds. She and I have already spoken about same. She said, Let me see if I can get Cindy on the line. Cindy came on the line, gave me the case number from when she sent the PA again on the 23rd. Direct Rx called RE: YupelriI am awaiting call back from “somebody in the copay department” at specialty pharmacy (2.27). Recap so far: I’m being told by the BSWH MF and BCBS that each is waiting on the other. I’m breathing poorly in my little brisket smoker and entirely am entirely too spun on this inane rotisserie to say with any certainty who’s doing what to whom.February 2824took 5 mg prednisoneI have added these dosing notes because they are of my own devise based on 45 years as an asthma patient. It is remarkable that Cindy called in both prednisone and methylprednisone without further instructions to the patient. February 2825called the clinic (x7211)Clinic answered. Kathleen was bemused that I’m still trying to get these meds. Kathleen said she’d have somebody call me with progress notes within 30-45 minutes. Kathleen called back before her lunch break“Did anyone call you about that?” “No, ma’am. No ma’am, they did not.” Kathleen said she was talking to Judy who would be talking to the doctor and to tell her what I needed so that Judy could tell the doctor. I did not hear back.March 126took last 5 mg of prednisone March 126paid local pharmacy cost plus for 15-day supply of formoterol ($239.99)I took first dose of formoterol since February 4. It will take a week to wind back up in my system. But I won’t be better until I get my other med. called Kingsland Pharmacy RE: YupelriI was told that it takes multiple days to receive from their suppliers, if they have it in stock, and is $2000 retail for one month. I do not have those kinds of funds, Ms. Jennings. Sometime during this week, I remembered that I have expired Spiriva on hand and began supplementing with that in place of the Yupelri. Ms. Jennings, I should not be dosing myself with expired meds from my own closet because I’m untrained to do the work that your staff won’t. called the clinic (x7211)“This user is not accepting phone calls at this time.” called the clinic (x7211)“This user is not accepting phone calls at this time.” called the nurse triage line I spoke with Marie for 20m. I was told that she would send a summary of our call and her notes to the Office Manager for the Specialty Clinic, Elizabeth Langley. I was told that both Rx requests had been denied. I was told that Marie will contact Cindy and Christine to compare notes and be working on it. Per Marie, I took a photo of the denial I received by USPS from BCBS and uploaded it to the patient portal. The clinic was clearly carbon copied on the denial. But she said they did not have a copy. I did not hear back from Cindy, nor Christine. To date, I have not heard back from Elizabeth Langley. That’s why I’ve come to you, Ms. Jennings. March 227called the super secret Prime Therapeutics number that Darla got for meI spoke with Stef for 40m. She reviewed everything that’s been done, and not done, on my behalf by the clinic staff. She noted that items 7, 8, 9, 10, and 12 on the PA were both INCOMPLETE and INCORRECT. Where one question asks for a short answer plus chart notes to be attached, the joker who completed the form simply typed, “No.” She said she was going to call the clinic herself on the March 3 and get results for me. I did not hear back.March 328Tezspire injection at Dr. Lele’s office with NurseViLeysha. I asked ViLeysha for any help she could give to get me my meds. She used to be a nurse for Dr. C. She said she would work on getting me my meds. I have high hopes that, by the time you receive this package, Ms. Jennings, I will have meds. However, I did not hear back.
Is it a policy decision to let me die?
Without the benefit of prophylactic medicines, I am left breathless, with chronic persistent severe asthma, uncontrolled since February 6. Without resolution, without communication, I am left with my assumptions.
I am left to assume that the cruel, disrespectful, insulting, dismissive, ineffective, inefficient, egregious, offensive, utterly absurd treatment I have received stems from a policy decision on the part of the BSWH MF not to retain and train enough staff to provide Health Care.
If I don’t die
If you’ll recall, I came to be your customer because Hill Country Memorial couldn’t retain their pulmonologist. I will only be your customer at BSWH MF for as long as you’re able to retain my new pulmonologist.
In my professional experience, the surest way to burn out brilliant individual contributors is to strand them on an island of overwork and undersupport. I am in the process of relocating all of medical care, which currently comprises over six specialties, to your facilities because that’s where Dr. C works. Please don’t lose him.
I loathe to use such high-stakes rhetoric.
I have prepared this in its entirety for the purposes of my heirs, should it come to that. After all, I haven’t died of asthma yet. I am privileged by class and status that I am able to shrink my life down small enough that I can survive with this debilitating condition. I cannot walk to my mailbox and back. I cannot talk and walk at the same time for lack of breath. And so, I accept that I’m not being hyperbolic to use these terms.
If I end up in the hospital, or emergency room, on an ambulance or in the morgue, in relation to this demeaning, neglectful run of red tape, I want my heirs, their agents, and designated proxies to have as much information as possible as they decide their next steps.
“Advocating for myself” should at least pay in medicines
It turns out that the medicines I was taking afforded about a one week lead before they ran fully out of my system and left me struggling again. I have lost all the gains I had made. I have lost three weeks of billable time with my client, amounting to $3,000 or more. I wouldn’t blame them, and wouldn’t be surprised, if they are looking for other talent to replace me.
Ms. Jennings, I plan to have this printed and mailed by Monday morning, March 6. It is possible that you’ll receive it as I receive news that meds have finally been cleared. According to my call with Stef of Prime Therapeutics, on March 2, the next steps need to come from your house.
Please help me get my meds.
Please do me the great dignity of a reply.
Please train your people and hire more.
Please know that I cannot let this go, on pain of death.
Do not call. I do not have the breath for that.