I've been spilling some little splashes of tea on my Instagram stories lately and promised there would be a more in-depth blog post about some of the healthcare drama we've been fighting lately. So here we go:
First of all, I could go on and on about the excruciatingly frustrating aspects of dealing with the healthcare system in general. It's just awful. Awful!
To try and offset the frustration, I'm going to sprinkle some sweetie photos of Damian throughout this OOF of a blog post.
Everything is a fight
Unfortunately, nearly every aspect of Damian's care is a fight. You would think that most of the fights in healthcare revolve around "who is going to pay for it," and a lot of fights do, but I found that most of my frustration actually stems from people passing responsibility. I'm often told "that's not us, that's so-and-so's job" (and they are often wrong - over and over - which results in me hopping around people like a hot potato), or I don't get responses at all, requiring a lot of time and effort on my part to really push and get answers, but then when I finally make contact, the hot potato game begins again.
Maybe it's short-staffing. Maybe it's lack of training. Maybe it's laziness. It's sometimes all three. And in cases of anything government-related, I am highly suspicious that a lot of it is designed to be frustrating on purpose.
Anecdote: I once had a government healthcare person tell me in the midst of another pointless and time-intensive scavenger hunt to get something Damian needed - when I asked the next step I was supposed to take, they responded "I'm actually not sure. Most people give up before they get this far." Yes, they literally said that out loud.
The fight is not just with the government though, it's been with everybody. Insurance. Equipment vendors. Doctors.
Because there are only 8 hours in a healthcare professional's workday, and almost everything we get for Damian requires my full mama bear attention and energy to push it through to fruition (not to mention LONG hold times on the phone), I have no choice but to prioritize the fights and tackle them one at a time.
Priority No. 1
Top of priority at this moment is increasing the dosage of Damian's experimental brain treatment.
(Some of you sent me questions on Instagram when I said I was writing this blog post, so I'll insert them as I write this)
Q: How did you know you wanted the dosage of the drug to increase?
Long story short, this is an experimental drug (Damian was only the 2nd child ever to take it for ASMD and the 1st one to take it as a pill). So no formal clinical trials on humans have been done with it for ASMD and there have not been enough other studies to confidently determine what dosing method or amount works the best.
So... it's kind of a guess.
Our experience with the drug has been a really positive one (I started seeing noticeable affects within 2 weeks of starting it) but it has also been clear after taking it for a few years that Damian is still regressing neurologically. The decline is much slower, but it is still happening.
While we fundraise and fundraise to help speed up the additional treatment development work, I also really want to make sure we are getting the most benefit we can out of the drug we already have access to.
When we first started taking the drug (which I often refer to as "Brain Treatment 1.0"), we began taking 1 pill every 3 days. After 3 months, we escalated the dosage to 1 pill every 2 days. 3 more months at that dosage and we escalated it again to 1 pill every day, which we've been at ever since.
It seems logical to me that the dosing amount should increase again - after all, many medicine's dosing is based off the patient's weight or their age, and Damian has grown SO much! I had our doctor reach out (another long and unnecessary fight) to the pharmaceutical company that owns the drug, and the pharmaceutical company said they'd feel totally comfortable with Damian going up to 2 pills, and even 3 pills a day. Damian has had zero negative side effects and zero safety concerns since starting the drug, so I think increasing the dose is absolutely worth trying.
Quicker said than done, as you'll find out.
The Maddening Process of Escalating the Dose
Because Damian's experimental drug protocol (the written instructions on how to take the drug) only included instructions on escalating the dose up to 1 pill every day, in order to take more, we had to update the protocol and get it formally approved.
The process for that is actually pretty straightforward:
The experimental drug's protocol (in our case, a 20-ish page written document) needs to be edited and revised in a collaborative effort between the pharmaceutical company and the doctor
The updated protocol gets sent to the FDA for approval
The FDA either denies the update or doesn't respond at all (and after 30 days of no response, you can take that as an approval and just move forward)
The protocol gets sent to the hospital's "internal review board" (IRB) for approval*
The protocol is now considered fully approved and the patient can start doing whatever the newly approved protocol says
*In case you're wondering why the hospital has to approve something if the FDA already approved it, it's because the hospital is approving it out of their own interest: "Can our hospital adequately handle what this protocol requires? Are there any risks for us if we agree to do this?"
So the process is simple. Actually getting these tasks done, however, has been maddening. I kind of feel like a mom trying to get her teenager to clean his room when he juuuuust dooooesssnn't waaaaaaaant tooooooooo.
Y'all I tried my hardest to fuel a fire under this doctor and get them to communicate openly with me and complete tasks within very reasonable timelines. I am a very reasonable person. This process may take some effort, but it is not a complicated ask. I almost just went and made a revision of the protocol myself (which in retrospect, I wish I had done - it undoubtedly would've made this process go quicker).
Even that first step - getting our doctor to reach out to the pharmaceutical company (aka writing an email) felt like trying to run a marathon knee-deep in mud. Our doctor would not read an email or write a follow-up email unless I reminded them over and over to continue their conversation. I would LOVE to just talk to the pharmaceutical company myself, but they will not talk to people who aren't doctors.
And why does this doctor just drag their feet?? My honest guess is that the doctor simply doesn't know how to do any of this and needs to be given explicit direction for every. single. little. thing. but is too proud/embarrassed to admit it. If it was just this one doctor who did this, I would simply change doctors. But this is our 4th doctor within this same department! They have all been the same.
So what happened this time?
I don't think I can put out on the internet too many details of what all has happened. And anyway, I think I'm already getting long-winded in this post. It's too much. It's too much.
So much has happened, and yet it's the same thing over and over and over:
Doctor and I communicate and agree on what the next step is
Doctor doesn't know how to fulfill next step (but doesn't tell me that)
I think the doctor is completing the task but don't hear anything. After a reasonable amount of time I reach out, asking for an update
No response
I reach out again (and sometimes again... and again)
I get a response that CLEARLY tells me the doctor has not been working on the task at all and now that I'm being a pain about it, they realize they need to figure out how to even complete the task (or they tell me they are going to do something that I know is the wrong way to go about the task and I realize they don't know what they're doing)
I respectfully suggest to them how to do the task
I reach out for an update
No response
I reach out again
They tell me they've done exactly what I suggested and now the task is completed, and now the doctor and I communicate and agree on what the next step is
And the whole thing repeats. Over and over and over, et cetera, et cetera, et cetera...
They make me so MAD.
I'm
so
tired
of
incompetent
people
in
healthcare.
It should not be this way. Look, if you're gonna be a doctor who doesn't know how to do anything, at LEAST learn how to ask for help. Simply not communicating at all in the hopes that the patient will just stop needing whatever they need is... dare I say, unethical?
So they left me no choice - I had to email the CEO. Amazing how it seems only that one person has the power to light fires under some people.
Y'all, it's still too much: this story, this blog post. On the one hand, I feel like I need to get this written down and out of my body. On the other hand, I'm exhausted reliving this when this story isn't even over yet.
Where are we at now?
After finally ALL the steps of the process of updating the protocol were completed and we got an approved protocol, I asked the doctor when we would start giving the increased dose.
Well, they just got a brand-new nurse care manager at their department, so the doctor off-loaded the responsibility to the manager - the manager who didn't know anything about the drug or the protocol or anything about Damian.
After pushing again for answers on when we could finally start, I began receiving calls... a bunch of calls, from different departments, saying they'd gotten referrals to schedule ultrasounds, MRIs requiring sedation, and all this other stuff that I knew was unnecessary in order to do this dose escalation. I emailed the doctor and asked for a copy of the final protocol, read the whole thing, and saw that they were clearly reading it wrong.
So last Friday, right after a totally different doctor's appointment in a different department, Damian and I went up to talk to the doctor and nurse care manager in person and try to get this sorted out once and for all. They were just going to lunch when I got there. That's fine, I could wait.
After lunch, the doctor had a big meeting. That's fine, I could wait.
Eventually I did get an audience with them (separately, but with both of them), and suffice it to say, I was right that they were misreading the protocol. I *think* they finally got it and we sorted it all out, and we made a plan. A simple, clear plan that the doctor liked, understood, and agreed to. And we set a date for the dose escalation:
Friday, March 7th
Will it actually happen? I am cautiously optimistic. But "don't count your chickens before they hatch," as they say.
But some of the studies that we needed to do shortly before increasing the dose included an ECHO and an EKG (both heart studies) and Damian and I did actually do those this week. So there's that.
More questions from you:
Q: What was the transfer of care like when the other doctor moved?
In case you missed the long video I posted on Instagram stories right after that one long day at the hospital, here's the context behind this question: When we increased the dosage of this drug previously, it was with a different doctor. That doctor moved out of state, and the hospital hired a new doctor that took all his old patients, including us. So the transfer of care was immediate in that sense.
But it was the new doctor that told us we were all set to start doing our infusions (back when we were trying to get that going), and then it wasn't until we were literally on the hospital bed in the infusion center when the nurse found out that the doctor hadn't taken a single step towards actually acquiring the infusion drug (and when I immediately charged upstairs to their office to find out went wrong, I learned this doctor didn't know anything about how to even get it).
I was livid of course, as I had been asking for MONTHS about getting everything ready and had been assured over and over that everything was taken care of. They had MONTHS. And not a single step had been taken.
Everyone then told me it was impossible to go through the process and start those infusions before the end of the year, but I became drill sergeant mama bear and got the CEO and CMO (Chief Medical Officer) involved, as well as reached out to the FDA myself and pleaded with them to expedite their review process, and we miraculously started the infusions two days before Christmas. In that process of getting the chief officers involved, though, I was told I would be transferred to a different doctor. I don't know if that was at the doctor's request or not, but I had no qualms about changing to someone else.
Except that the new doctor turned out to be not much better, obviously, because that is the doctor we have now.
Q: How do you get insurance to cover everything at one location and not have you running everywhere?
We do not... it's actually becoming more and more of a problem for us. For the most part, all our specialty doctors are at CHLA (though a couple of them work out of different locations. One is super close to home, and one is even further from us than the main hospital is). Our pediatrician is not at CHLA. And more and more often we are getting told we have to do different tests and studies done at different facilities (meaning more work for me to schedule appointments, coordinate communication between the referring doctor and the testing facility, then make sure the test results go back to the right doctor, then remind the doctor to call me with the results. Total headache.
Q: We are about to go down this route. Any expert tips on how to make sure the doctor gets the drugs?
May the odds be ever in your favor!
Of course I hope that you have a doctor with common sense and basic proficiency in communicating with others, but I would say the biggest tip I have is to know your doctor's plan so you can have reasonable expectations.
Ask the doctor for the plan and make sure you understand it:
Me: "What's the process of getting the drug?"
Doctor: "Well first you have to __________"
Me (writing down everything): "Oh, how long does that take?"
And with every doctor, whether I highly trust their competence or not, I always keep notes and repeat back to them the action plan after I have a conversation with them:
"Can I repeat the plan back to you so you can tell me if I understand this correctly? You said..." then I read off the bullet points I have written down - including dates if applicable, and always include WHO is doing what.
"You are going to call _________ today and ask for them to _________. Then you'll email me by Wednesday and let me know what they say. Is that right?"
Having that conversation at the end of every visit with a doctor is critical for us. And then, if I don't receive that email by Wednesday like we agreed on, I feel confident contacting the doctor with, "Hi, I'm checking in about your call with _______. Did they __________? Thanks!"
And... if worst comes to worst and you have to call for "reinforcement," having those notes written down = receipts.
------BREAKING NEWS, NEW DEVELOPMENT, HOT OFF THE PRESS------
Well, I'm glad I don't count chickens before they hatch.
As I was writing this blog post, I got another call from CHLA. The nurse care manager told me we couldn't do the dose escalation this Friday.
Cue loud buzzer noise: ERRRRRRRR. Wrong answer! Nope! Not acceptable, try again!
I made sure I knew exactly what they were saying and what they were "doing" to rectify the situation and it honestly didn't pass the sniff test. They are making this WAY too complicated (still) and it doesn't need to be. They said they can set the date for later in the month, but the new "plan" they gave was too mushy and the dates they mentioned were too vague and on top of that, when I asked the manager to keep me updated on a daily or every-other-day basis, they refused, saying they were way too busy to do that.
Nope. I've been playing this game for nearly 2 years now trying to escalate this dose. I know they'll just keep pushing it off again and again if I let them.
So. I guess Mama bear doesn't get to take a rest quite yet.
<3
Disclaimer: Friendly reminder that I am not a healthcare professional and do not have any formal medical education. All opinions stated in this post should not substitute professional medical advice or your own due diligence in regards to your own healthcare.
Also, I know firsthand that many doctors are great at their jobs and we absolutely LOVE those doctors. But regardless of competency, I strongly believe that in stressful healthcare situations it is critical to remain civil, for many reasons. Maintaining poise, especially when frustrated, often gives you the upper hand. You don't need to lose control of yourself to show someone you are upset, and you don't need to compromise civility in order to get things done.
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