Winning the Battle of the Botox......

Yesterday at work I did what I have not done since Babygirl was on the transplant list: I excused myself from an active patient visit when my phone rang. "I'm so sorry - my child is ill, and this is her doctor!"

The snarky lady from the neurology office began with a very respectful, "Hello, is this Dr D?"  

Amazing what playing the puffed-up "Do you know who I AM?" card does for you. (Although, to be honest, do I really need a TITLE to be respected? What exactly is that about? There are some days of the week when being Babygirl's mom is more complicated than being a doctor has EVER been, and that deserves respect, right? And what about the idea that we are ALL created in the image of God? Maybe God has some snark, and I need to respect THAT.) Be that all as it may....

She informs me that they are working on getting the Botox authorized by our old insurance, since, she still insists, it is Babygirl's PRIMARY insurance.  She knows this because her new insurance has refused to cover the Botox.  She starts the steamroller process, but I'm out of time and patience so I interrupt as politely as possible.

"We got a call from her new insurance last night letting us know why they were not going to pay for the Botox. She just has to try 2 preferred medications first."  Ms. Snark, surprised, said, "That shouldn't be hard. Her chart has a long list of everything she's tried." Me, shocked, thinking, "The Snark actually READ her chart??" Aunt Mary would have said, "Well, I'll be dipped in dirt!"

"Yes, but not THESE medications.  She needs to try Emgality and Aimovig, but the kidney doctors won't let her use them."  "Is that in the notes? Do you have copies?"  Well, I don't have copies, but I"m pretty sure I said it to the new doctor, so it might be in his note, and our family doc might have it, and for sure the pediatric neurologist has it. In any case, the appeal form needs to say that, one way or the other.

"I'll look into it and let you know. But the doctor said to let you know that one way or the other we are doing the injections on the 4th."

When I got home for the evening, Babygirl was getting a call from her insurance.  The Botox is approved, and needs to be called in to our pharmacy!  Whoot!  That means it should come in at her usual copay of about $3.  

Amen, and amen. And a good nights' sleep.

DeeDee

How Does the Formulary Work?.......

 Babygirl, livin' her best life with her favorite grown people LOL

Last year, Babygirl "graduated" from pediatric neurology to adult neurology. We met the adult neurologist, liked him, scheduled her for her Botox, three months in advance of when she needed to get the shots.  Remember this story?  (Cancelled.....) Two weeks before the appointment, they let us know that they wouldn't take our insurance for the Botox injections, leaving us SCRAMBLING to get her taken care of. Thankfully, pediatric neurology stepped up, and we were okay until her new insurance kicked in.

We tried, REALLY tried, to tie her neurology with her new kidney doctors in Rochester, but the group there is insistently NOT taking new patients, and the next nearest group is an hour farther away, almost to Buffalo. Too far, unless we want to start paying for hotel rooms (which, of course, we will if we must!).

So we started again with the local guy.  I called ahead, told them specifically what type of insurance she now has.  I called her insurance to make sure Botox is covered. When we were there on June 9th I made absolutely SURE that they had all of her cards, all of her data.  I made a point of reminding them of what happened last time and asking politely, honest, that they work ahead of time to make sure it didn't happen again. 

Today (!!!) their office called to let me know that they wouldn't be able to do her botox on September 4th because our insurance wouldn't cover it. 

....W...T....

I listened while the same woman who told me this crap last time steamrollered over all attempts I made to speak up and finally just waited until she finished her rediculousness with "so she'll have to go back to where she's BEEN getting her shots or go and see Dr Khan at pain management." (Once again - the pain management group at the hospital I DON'T work at. The one our insurance doesn't cover, that used to cost hubby about $1000/visit until our hospital opened their own pain management office.) 

Breathe.

So. "Do you actually know who I am?" Well, you are Babygirl's mother. "Yes, and I am also Dr D, so I know how authorizations work. Did you get authorization from her NEW insurance?" No.  Your old insurance is her PRIMARY insurance.  "I assure you it is not.  All of her medications are being paid for by her new insurance. I told your office this when we scheduled the appointment. AND if they, for some reason, do not pay for this, I will, as I told you last time, PAY CASH."

I took a moment to explain to her that a 21 year old cannot "go back to" a pediatrician for any more shots, and unless she could guarantee me an appointment with Dr Khan by September 4th and the he would, indeed, take our insurance, then they were obligated to keep their committment to Babygirl.  

I also took the low road and told her that I did not wish to have Babygirl's headaches relapse, and go back to a time when she did not find life worth living. 

Her tone was less aggressive by the end of the conversation. She said she would discuss it with the doctor in the morning, and call me back tomorrow. 

After I got home, I got a call from Babygirl's new insurance: Botox isn't covered.  You can appeal by calling...

So we called. The customer service representative was polite, and told us that she had to try 2 preferred medications first.  "Tell me what they are.  I'm sure she's tried them."

Emagality, and Aimovig. 

Well, CRAP.  These drugs are relatively new, monthly self-injectables, immune modulators.  Her last neurologist wanted her on Aimovig, but the kidney doctors, both pediatric AND adult, said NO.  I'm a doctor, and I'm not sure what the objection is, exactly, but no means no, so...

I explained this to the nice lady, who said that out doctor needs to explain why she can't use them on an expedited appeal form, which she faxed to his office while we were talking.  

But here's the thing. Botox retails at $1544 ($1200 at Sam's) a vial, and you need 2 for the injections, which are done every 3 months. The doctor also charges for performing the injections. Babygirl's old neurologist told us that the hospital she worked for got Botox in bulk for about $150/vial.  Aimovig averages $715/month retail ($600-$650 with GoodRx), and the dose frequently needs to be doubled. Emgality retails at $726 - $929 ($559 with coupon), but the first month is always a double dose. So techincally, on paper, in retail, the newer meds are cheaper. But in reality, the Botox can be obtained for far less if the insurance company is bargaining for it.  They were paying Nemours about $1500 total for Babygirl to get her injections.  Three months of Aimovig is over $2000, and the Emgality is even more. 

It seems that the purpose of the formulary here is to funnel money to the drug companies and not the doctors, but that may be a bit of paranoia on my part. 

DeeDee

Socially Distant Vacay...

When the Covid-19 epidemic hit, my employer told essential workers to cancel ALL vacation/PTO plans from March to the end of August, and to be prepared to conitinue to cancel as needed.

Well.  First up was a late April/early May trip to visit Citygirl in California. That was CLEARLY not going down, so I called and cancelled flights and let the office know to go ahead and schedule patients. By the time I would have taken that trip, the epidemic was in starting-to-slow-down-but-still-terrifying mode.

This week, Babygirl and I were supposed to be on our annual mission trip. In our state, the epidemic is reasonably controlled, and my employer is encouraging "self care."  In other words: Take some time off if you need it.  Well, I never cancelled this vacation, but the Apalacia Service Project cancelled the entire summer for safety. So we opted to do some home projects.

And we took a trip.  We went to the Catskills to try Rail Explorers.  I described it to someone as "An entertaining form of torture for overachievers."  I was recovering from the leg stiffness at the time, LOL, but the actual activity was really quite fun. It's eight miles of self-propelled pedaling on a railroad track.

And we hiked Bushkill Falls, another overachieving effort, accompanied by my sister-in-law.

In the night in between, Babygirl and I rented a small cabin and camped together for the first time in ages.   I had to think hard to remember the last time, and I'm not really sure - maybe when we took that trip down the coast to Florida?  She would have been 14? 15?

I pulled out our camping bin, to get out the camp stove and fuel, and, at the last grab, took along the camping tool box, still loaded from the last trip, without even looking to see what was in it (good thing, too!  We needed the lighter to light the stove!), It contains all the miscellany that one needs: A can opener, a wine/beer bottle opener, matches, band-aids, cloths pins, knives, flashlights, multitools, hammer, and....

A thermometer.  

In the Covid world, this probably should travel with everybody.  But it's a testament to how blase we are about Babygirl's post-transplant life that I didn't thinks to include one in my bag, because there clearly was a time when I would NEVER have considered walking out the door for an overnight adventure without one. It's not that we aren't protective, or careful, or vigilant.  It's that a lot of that weight falls to Babygirl's clearly now-adult self.  If she didn't remember to bring her medication, it isn't because I didn't remind her, it's because it's her job and she forgot.  About the only thing I do these days is make sure she's up on her refills. She keeps track of blood work, medication sorting, travel medication, all of that. She has begun staying on top of some of MY stuff.  

I need to remind her to add a thermometer to her overnight bag, for future trips.  And then we are good to go.  

It's both a good thing and a sad thing to not be so intensely necessary. 

Deedee

Shortages and Social Distancing....

We are blessed to be among the probably less than 10% of people in the world whose lives are thus far minimally impacted by the COVID-19 epidemic.  Hubby is disabled, as is Babygirl, so they were home the majority of the time before the lockdowns began.  I was working "part-time," limited to only 40 hours/week, (so although technically I could be called up to work in the ER if needed, it wouldn't increase my hours), and I was the first sent home to try telemedicine.  My coworkers pointed out that I'm the oldest provider in the office, but I also know very well that they were also protecting Babygirl.

Our income didn't change.  We didn't lose health insurance. Our housing is stable.  We are able to stock food and supplies.  Mostly.

I'm not a hoarder, but I usuually have a 24 pack of toilet paper in the bathroom cabinet, until it is nearly gone, and then I buy another. We were just at that point when the TP crisis of 2020 hit.  We never ran out, but we did have to get by with an inferior brand LOL.

Ditto on the hand soap.  We aren't allowed to use bar soap, because it can harbor bacteria dangerous to transplant patients, so I have refillable soap dispensers in the bathrooms and kichen, and buy big refills.  Those ran out right as the apocalypse was starting as well.  So did our antibacterial wipe stockpile. It was all a matter of timing. 

My first Apocolyptic journey to Walmart, back what seems like a year ago but probably more like maybe late February, I stopped an associate and asked where the hand soap was.  Her reply was classic:  "If it's for a surface or an epidermis, we don't have it."

Well, then.  Since dialysis we've been pretty aggressive hand washers, so this is not the best of news.  But I'm creative.  The soap dispenser in the downstairs bathroom is a foamer (because the grandkids pump ANY liquid soap dispenser about 100 times each and this wastes WAY less soap), and I've learned how use the liquid hand soap mixed with water to make that work.  I've used the last bit of soap in any bottle in there: Shower gel, dish soap, hand soap, shampoo..... Shampoo!  I switched aisles and found my favorite scent of Suave cheap clear blue shampoo, and Voila!  Hand soap! Hubby actually likes it better. More foam. 

I managed to score a bottle of Lysol cleaning solution (the same stuff that Clorox wipes are made from basically) and refilled my wipes container with (very patiently layered so they'd come out one at a time) paper towels.  They work okay.  But what REALLY works is when you add 1/4 cup of that Lysol to a package of baby wipes! (Label them.  Label them. Label them.  Wiping your bum with them will NOT prevent coronavirus infection. But I'm not sure what they would do to an actual baby's bum.)

For us, supplies have gotten a bit easier to aquire because Sam's Club has opened from 8-10 AM on Sundays for medical professionals, hospital employees, and (I think) first responders.  God bless them. It decreases Babygirl's risk tremendously.

People still do not seem to understand the nature of what we are fighting.  I went to a store recently because I had to.  Everyone had masks, but many did not seem to understand that they have to cover your NOSE as well as your mouth.  What if you sneeze??  While I was in line, a group of 3 young people were right on my heels.  I turned and explained that I had someone their age at home with no functioning immune system, and asked them to please step back.  They complied, while stating that they themselves weren't concerned about the virus.  I agreed that the odds were in their favor, but they weren't wearing masks to protect themselves, but to protect Babygirl and those like her. 

Then the man behind them, in his 50s-60's piped up with a dismissive, "Don't believe everything you hear on the news."  "Sir, I'm a DOCTOR.  I don't believe what I hear on the news.  I believe the scientific evidence and the CDC."

It all made my brain hurt.

DeeDee

New Insurance.....

When Babygirl turned 18, we applied for disability for her.  Now, most people under are turned down as a matter of course on the first try, but...If you fail the vision test, and add in all the rest of her struggles, I guess you qualify.  Because she is over 18, this gets her a small income of her own, and, because she is over 18, it makes her officially "poor."  So, after some difficulty with the system, she qualified for Medicaid, supplementing our private insurance.  The problem is, Medicaid is state-based, so it covered anything here in OUR state, but not her out-of-state care, which was, until recently, the majority of what really cost the most.  Even her transplant medications, since they were written by out-of-state providers, were only covered on OUR insurance, not her Medicaid, so her co-payments and deductables remained unchanged, and high.  If it had been all on her, it would have taken half or more of her disability income to pay for it.

But, after two years on disability, one becomes eligable for Medicare (we "Aid" the poor, we "Care" for the elderly and disabled).  So, suddenly, she got a Medicare card (which we had, temporarily, when she was on dialysis.  We apparently also "Care" for those in renal failure.)  But when you qualify for both Medicare AND Medicaid, interesting things happen. 

First, let me explain Medicare. Medicare has 4 parts.  Part A covers 80% of your hospital stays, and everybody over 65 automatically gets this.  This is, by itself, crappy insurance.  It won't pay your doctor, or your medications, and, if you are in the hospital for 2 days and get a $10,000 hospital bill you will owe $2000.  Multiply THAT times a few more days. 

Part B covers doctor's visits, or at least part of them.

Part C covers home health care/PT/ and some other miscellaneous things.

Part D covers prescriptions, or part of them.

Parts B, C, and D have to be purchased by the consumer.   Yes, YOU have to pay for them.

Now, there are some reasonable plans out there, and there are price breaks based on income.  And if you qualify for Medicaid, then Medicaid will buy your B and D plans (although they may cut a deal with the cheapest, meanest most Satanic insurance company ever to make a dime off your Granny's back, but hey, poor people shouldn't complain, right?).

So, Babygirl has new insurance, and we didn't get an up-front choice as to which Satanic flavor she got. And by some clerical error, we never got a prescription card.  So we just kept going to our pharmacy and using my insurance, until I our pharmacy about her new plan.  Horrified faces.  Apparently we've been committing some sort of fraud.....

So we finally got ahold of the new plan. And it turns out, according to the witless wonder that we spoke to, that her transplant medications are considered a hospital benefit and not a prescription benefit so we have to change pharmacies, because ours doesn't bill Medicare B, only D.

So, we have the new transplant team send new prescriptions to CVS, who have assured us that they bill Medicare B.  We have 5 transplant related prescriptions.  I get a call from the new pharmacy that 2 need to be ordered and they will let us know when they are in.  A few days later I get a text that 2 prescriptions are ready.  This repeats a couple days later.  But since I'm waiting on 5 prescriptions, I just sit tight.

Then, a phone call:  "Are you coming to pick up those 2 prescriptions or do you want them delivered?" I asked about the others, and the woman said, "Oh, look, there are more, but they were filed. I can get those filled in 15 minutes." 

Babygirl and I put a dog on a leash and walked a mile to the pharmacy.  She waited outside. And waited.  And WAITED. 

One prescription was ready, 90 day supply. One of the ones that needed to be ordered STILL needed to be ordered, would tomorrow be okay? The other one that needed to be ordered ALSO still needed to be ordered, but was out of stock, so they couldn't order it. They had 70 out of 90  days available, if they used 3 different manufacturers. Was that okay? The fourth had a 22 day supply in it, for no reason that anyone could determine, and they had to re-do it to make a full 90 day supply, would I mind waiting?  I completely forgot at that point that there was supposed to be a 5th medication.  I have to check on that when I go to pick  up the remaining bottle. 

What. A. Cluster.  We are in the middle of the Zombie Apocolypse. Avoiding people is the name of the game here. I was the only person in the store when I got there, and FIVE sets of people came and went for prescriptions while all this was going on.  If I had accepted home delivery, the whole order would have arrived a complete mess with no explanation, and ...... do I stick with these yahoos or start over somewhere else???? Oh my dear Lord.

Oh, and despite the fact that I was assured by Babygirls's Medicare D plan that they DO NOT cover her transplant meds, THEY FRICKIN paid for them.  Not the B, but the D.  So, does that mean I can go back to my regular pharmacy???????

And Babygirl's response to all this was classic, polite, optimistic Babygirl:  "Well, they got ONE of them right!"

That's a low bar, Babygirl.  A really LOW bar. LOL

DeeDee

The Zombie Apocalypse.....

Three Sundays ago I stood in the pulpet of my church, and told our largely elderly congregation what they needed to hear but did not yet fully understand: We need to stay away from each other to be safe.  I resigned, temporarily, as choir director, and told them that I would not be back until the epidemic (then not yet officially a 'pandemic') had made it safe for me to do so.

Within days, I was also working from home.  A year ago it would have been unthinkable to have a visit with a patient with no hands-on contact. Now, I have to use my ears, my intuition, my gut. I have to ask patients to tap their own sinuses and report what it feels like without being able to SEE the grimace that tells me that there is a problem under there. Video is coming.  I need "Webside manner" training, and I'm supposed to wear my stethescope and a white coat.  I have perfectly terrible bedside manner (which is why a certain type of people love me LOL), I don't OWN a white coat and WTH am I supposed to do with a stethescope during a VIDEO visit for crying out loutd?

Covid-19 is reshaping a lot of our world. I'm a natural introvert, living in a house full of introverts.  We miss eating out. Otherwise, life is good.  But there is a lot of anxiety and uncertainty in the air.  Some people's hearts are simple dripping with fear.

I'm not sure what to do about that.  It isn't that we, ourselves, have no reason for fear.  Hubby and I are asthmatic diabetics. There's some risk there. Citygirl, Jujubee and Curlygirl all have asthma. And Babygirl.  Well.  Her immune system is suppressed on purpose, so, there's that. 

But....

The one solid lesson I have learned, being Babygirl's mom, is that I have no control whatsoever over the future. None. What is coming, is coming.  I can do what I CAN do:  Make sure there is plenty of soap in the house, make masks for people to wear, keep our food sources safe, and maintain agressive social distancing.  But in the end, I will have to deal with what I get, and worrying about it ahead of time will change precisely nothing.

That doesn't mean my mind doesn't go there. I had a serious kick-in-the-gut thought yesterday.  Babygirl is technically an adult now. If she gets any kind of sick, I won't be allowed to be with her in the ER, or for any hospital admission. NO visitors are allowed at all anywhere right now, except for "beginning of life, and end of life." And even then, it's only one. One visitor for new moms, or for the dying. Not one at a time:  ONE ONLY.  THAT might just about kill me.

DeeDee

Nothing is Wrong In Rochester.....

Babygirl and I went for her routine kick-the-tires, check-the-oil, 3-month doctor visit.  Except it wasn't quite....routine.  For the first time in 8 years I had to turn north instead of south (and I swear if Google hadn't been scolding me the ENTIRE time I WOULD have gone south!), and we went for our first visit with the transplant team at University of Rochester, Strong Memorial Hospital. 

We drove right past University Hospital in Syracuse, a closer alternative. We plan to never darken their doors again unless no option exits otherwise, since our last experience there was less than positive (Week Seventeen - The First Surgery.....), as you can read if you desire.

Google took us to the hospital, but not to parking. We bumbled through a private lot, let Google lead us into the ambulance bay (!!), and  finally found our way to the 6th floor of the parking garage (parking here is more affordable than at CHOP, $6/visit at the worst with no need to validate. If you forget to validate at CHOP you can get hit with $24!).  We had left early to allow for the bumbling, and got to our appointment with plenty of time for the endless paperwork that a first visit to a megaceenter entails. In the proscess, we discovered that her Medicaid is not valid.  It's always something.

The appointment was the usual: Weight (but no height measurement - they were content to let her just tell them!), blood pressure, pulse. No urine test (which is interesting. One of her medications can cause severe birth defects. A pregnancy test was mandatory (if not necessary) at each and every visit at CHOP since she turned 13).

A nurse practitioner student took her history, and spent endless time getting her extesive medication list into the computer.  A nurse practitioner confirmed it all.  A social worker came in to see how she was handling the transition, and to give us resource information if we needed it.  And then came....The Doctor.

It was a bit of a Soap Opera moment, actually. He's tall, dark, and almost as handsome as he thinks he is.  "Why were her doctors seeing her every three months?  When our patients have stable transplants for 8 years, we see them annually!"

He's clearly a man who knows his value and isn't used to getting questions from patients and their moms.

"Well, rejections are most common at age 14 and 18, so they are pretty rigid about compliance in their adolescent patients, most likely aimed at improving the odds that they WILL have a stable transplant at 8 years."

Ahem. But we had questions, most of which had nothing whatsoever to do with her kidney follow up. We know the kidney is doing fine.

"Her pediatric nephrologists were unable to clear her to use CGRP inhibitors to prevent her migraines. I was hoping you had enough experience with them to allow her to use them. Oh, and she needs a referral to neurology. We are still driving to Delaware to get her Botox done because we can't find a more local provider to do it."

It's kinda fun when you get to explain a new class of medications to a blank-faced Uber-Specialist because he has Never Heard Of Them. (Short explanation: They are injections of antibodies that scavenge the inflammatory by-products specific to migraine headaches to prevent recurrences. Similar medications are used to treat elevated cholesterol, allergies, and several other issues).  Because they involve modifying the immune system (sort of?), he was concerned, and wanted to veto.  I refused to let him unless he did some research first. He agreed.

He put in a neurology referral and instructed us to call if they refused to take her so he could speak to them (they have already refused a referral from our primary care doctor).

He did a thorough exam, told us he wanted her to do monthly blood work at home, and then announced that he would see us in a year, but that the nurse practitioner would be back in to send in our prescriptions because "she's better at that than I am." So kind of you to notice.

When she returned, she asked about follow up and was appalled to here the 1-year plan.  "On a patient just transferring from pediatrics?  We need to get to know you first! We usually do every 3 months for a while.  Babygirl was clearly relieved by this.  We scheduled follow up for June, but can adjust based on neurology, if/when we get that apppointment.

We stopped at an outlet mall on the way home, walked 2 miles and did some shopping. We discussed politics, tax distribution, the importance of elections that DON'T involve only presidents, health care, and listened to both current music and Pandora's Chicago channel.

When we pulled up in front of the house, I looked at her and said, "I just drove 7 hours. You'd think we'd have gotten farther away!"

DeeDee