Background:
I noticed I was running low on my Tibsovo AKA Ivosidenib on Monday. I normally get a call from the pharmacy (Biologics by McKesson (BBM))
when it is time for renewal. It goes something like this:
when it is time for renewal. It goes something like this:
Biologics: Time for your renewal, any of your meds changed or have you been hospitalized?Me: NopeBiologics: Should we use the card on file?Me: YupBiologics: Great it will ship out tomorrow and you will get it the next day
(there is actually a LITTLE bit more like verifying my ID but you get the gist)
The Hunt for a Renewal
But I didn't get my call when I expected it. So I call and leave a message on Monday night when I notice. They have a place to leave a VM and get a call back the next day. I never got the message on Tuesday so I call and leave another message but this time I also put a reminder in my calendar to call them during working hours which would be Wednesday (my last day of supply). I called at 8:30 in the morning and I was told by McKesson that Dana-Faber Cancer Institute (DFCI ) was contacted multiple times requesting a renewal but DFCI never returned their call or rejected the request (I can't remember TBH). This request went out twice on September 25th and once on October 8th. During this time I never got a call from DFCI nor BBM warning me of a problem.
BBM informed me that I would need to get the prescription renewal from DFCI. 'No problem' I think to myself and call my Neuro-Oncologist's (NO) office. But they don't pick up so I leave a message on the electronic gateway
Their response was shocking at least to me:
So this was shocking for a few reasons:
- DFCI was holding my medication hostage (ok this might be a little overly dramatic....but it doesn't feel like that to me at the time) until I get these tests that no one told me I needed to get leading up to the renewal. This feels a bit like they are holding my life and well being hostage jumping through this hoop (again with the drama...sorry, but not that sorry).
- I was at my NO for my normal check in and MRI review less than 3 weeks ago where I got an EKG and bloodwork done. It had been less than 3 weeks since that visit. On this visit to the NO I was told that I would need to go in for Bloodwork and EKG every month. Great that would have put me at October 19th for the next round of bloodwork and EKG. But this representative is now saying that I have to have it now in order to get my medication....WHAT!?!?!?!
At this point I am close to panic and decide I must run out to get the EKG and Bloodwork done ASAP. So I run out of work (fairly embarrassed BTW) to get through the hoops that I need for this life saving (sorry, but again not THAT sorry that I view it this way) medication.
I take mad notes when I am in listening to something important....in fact I took notes during my September 19th visit and none of this came up. You will have to forgive the fact that:
- It is in mark down (as that is the native format of Obsidian (my note taking tool of choice for non-work))
- It is my raw notes you will find plenty of typos
- It has MRI report results intermixed with live notes from my conversations, so might be a little confusing but you get the point...which is I take notes on what is being said in important meetings.
But also looking at the post review notes I see:
No mention of anything being out of cycle, risk of not having a renewed prescription or any other problem that might impact my treatment.
Blaming me for taking a vacation
Perhaps this is just my interpretation that I am being blamed for this debacle because I took vacation. This was the post that I got just this morning:
But I got everything cleared beforehand, no mention of any danger from going on vacation:
Later I directly asked if I did anything wrong:
Why I am upset
I take my treatment VERY seriously.
I am trying to push the odds in my favor in any way that I can. I am exercising more than I ever have, I am on a Keto diet b/c there is SOME evidence it MIGHT be helpful, I am staying away from sugar and sweets, I put a process in place to make sure that I take my medication when I am supposed to (see picture below), I wait for 2 hours after dinner JUST IN CASE my meal MIGHT be considered "high-fat" and interfere with my medication's effectiveness.
The most important thing to push the odds in my favor is me taking my medication. The fact that I was not notified that there might be an issue that needed to be fixed and then I was blamed for it b/c I took vacation is very upsetting.
DFCI is World Class
But this didn't feel like world class to me....I guess I am just more disappointed.
Defending rather than owning and fixing
My NO called me and will be looking into the issue to see what happened and what could be done to fix this. I was very reassured by that. The staff on the other hand are seeming to try to defend and protect. To be fair it is a very natural response. I get it and when I am blamed for something like this my instinct is to do the same thing. I would have been MUCH less upset if there was a recognition from the staff that there is a gap and that they will work to fix the gap and report back what has been put into place.
- This article I found with the help of AI (thank you perplexity.ai) Medical errors: Honesty is the best policy
- And this podcast I heard a while back (now this is no where NEAR the impact of what happened to these patients but it is about the perspective and working to take ownership and fix issues) The Sunday Story: When Hospitals Don't Say Sorry It is a good listen to not just anyone in the medical field but anyone that works with customers where mistakes can happen. Here is one quote from that program: "Now, disclosing is a big step, but Julie and other thought leaders understood an apology goes only so far. To really make care safer for everyone, hospitals needed to fix the underlying issue. And she told the staff the source of the problem in most cases was poor communication and a bad process, not bad doctors and bad nurses."
Problem Thesis
So I believe that there is gap that needs to be filled in order for this to not happen again. It seems like it could be one or more of the following:
- Some missing process when requests from the pharmacy is rejected.
- Someone didn't pickup the requests from the pharmacy.
- Someone did pickup the requests from the pharmacy but the requests were mis-handled
- No one (DFCI and BBM) notified either the NO nor the patient that there was a rejection that needed to be addressed.
- There is a missing process or check when someone goes on vacation to sync checks on required tests (EKG + Bloodwork)
- There is no supply of Tibsovo at DFCI in case there is some problem with fulfillment / shipping etc.
- Someone other than my NO can cut off my supply of my medication.
- The instinct to blame from the staff won over taking ownership and working to analyze the circumstances and brainstorm solutions.
Suggested Solutions
I love it when my team comes to me with solutions rather than problems....so here are my suggestions:
- A review of the process when rejections to the pharmacy happen. The NO and/or patient should be informed and allowed to take steps to correct.
- A review of the specifics on the requests sent to DFCI on Sept. 25th. Where they actually received and rejected or ignored. If ignored there is probably some process improvement that can be made.
- The vacation process needs to be enhanced with an analysis of testing cycles and the creation of a remediation plan for cycle disruption.
- Some sort of notification or alert if any pre-requisite for medication is not fulfilled within a certain reasonable time frame to be able to correct.
- DFCI should have a minimal supply of medication in case there is some future miscommunication or other procedural gap that is encountered (hopefully this is rare and there are not many of them)
- Only a patient's NO should cut off or refuse medication.
- An in-service or similar with a review of the findings from the Harvard article and podcast (or similar material) linked earlier.
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