Today is the day that Jorge's Mom must dread more than any other day of the year. The anniversary of his passing cannot possibly become any less raw with the passage of time.
He'd be in his 30's now. She has to wonder if he would have had kids, what kind of Dad he would have been, what his life's work would have become.
I have a friend who's been missing her boy this long. There are two days in each month, every single month, that bring her to her knees still.: The day that corresponds to the one on which he arrived, and the day that corresponds to the one on which he went home. Every. Single. Month.
I think of Jorge's Mom on the 'thirds.' Not every month, I'm not diligent enough for that. But often. Whenever I catch a glimpse of the little J that Babygirl had tattoo'd on her arm, I say a prayer for his family.
I've thought about them all day today, remembering the chaos of that day eight years ago. (February Third - The Big Day..... Babygirl wanted, for the first time that I can recall, to go back and actually read the blog from that week (her final takeaway: "You shouldn't have let me eat so many pancakes." LOL). Remembering all the details, all of the crazy, all of the joy! And never, ever, ever forgetting what it cost someone else.
DeeDee
Monday, February 3, 2020
Monday, November 18, 2019
Fixing Things. It's What I Gotta Do.......
Let's see....
Since our last little cliffhanger, (Cancelled....) I've spent about 2 hours on phones, off and on, trying to make all of this work somehow. Each call has landed on a different day.
First, a second call to Nemours to see why, after nearly two days, they haven't called back.
Next, and longest, was the insurance company. Finding out what was holding up the Botox was...opaque, to say the least. The number on our pharmacy card reaches the mail-order pharmacy, which is a fairly useless (to us) place. We found out during the Great Transplant Medication Shortage (The Terror of Running Short....) that this is not actually considered to be OUR mail-in pharmacy (We can get 'ordinary' medications mailed to us from there if we want, but it is more expensive than using out local pharmacy. And for 'special' medicines like transplant stuff, we have to use our local pharmacy, 'cause THAT's our ACTUAL mail in pharmacy, even though we just walk in and pick them up. Don't ask me. I'm just The Fixer.). But I had to start somewhere, so....
The very nice lady who answered wasn't sure what the issue was, because Botox is in a Super Special Category that is neither "regular" nor "mail order," so it wasn't her department. "I'm going to need to talk to someone else, and it could take quite a while. If you don't want to listen to the whole thing, I can put you on hold."
Well, honestly, I'm still at work, and I have a lot of charting and dictation to do that I really don't want YOU to listen to, so sure, sounds like a plan. "Do you think I'll have time to run to the bathroom, because I probably should have done that before I called you!" She assured me that if she comes back on and I'm gone, she'll wait for me.
No need to have worried. Fortunately, the Muzak was not too grating, because a full hour after I got back to my seat, she came back on. It turns out that the Botox authorization WAS still attached to Nemours neurology. She could see a record of ONE call from the new neurologist requesting that it be released to them, but no calls from Nemours allowing it to be released.
By the time I had this information, it was too late on Thursday to call Nemours again. Friday I got ahold of the injections scheduler, and she said the reason the provider hadn't called back was because she was concerned that they wouldn't be able to get the Botox, because it had been released to the new provider. Well, damn skippy. "As a matter of fact, no, it has NOT." I filled her in on what the insurance company had said, and she was a bit miffed at them, since she herself had called them.
(So either she never called, or the insurance company made no note of the call and failed to release the medication that my kid needs, making it necessary for her to WAIT an extra three weeks. I'm placing ALL my money on it being the insurance company. I've been playing this game with them for more than a minute now.)
At this point, we are running out of options. I'm going to assume that our appointment with the new neurologist is, in fact, cancelled (something that I confess I have failed to confirm one way or the other since this all began. If I ask her to release the medication now, this will likely backfire badly; and honestly, I don't think I can be polite to the scheduler in the new doctor's office at this point.
So: "Can she be fit in when we are coming down in December? I'll clear my schedule and come a day early, stay a day longer, whatever works."
I got a call at the end of today: She has an appointment.
I admit I cried when I put the phone down. I just needed a minute. I am getting too old for this stuff.
DeeDee
Since our last little cliffhanger, (Cancelled....) I've spent about 2 hours on phones, off and on, trying to make all of this work somehow. Each call has landed on a different day.
First, a second call to Nemours to see why, after nearly two days, they haven't called back.
Next, and longest, was the insurance company. Finding out what was holding up the Botox was...opaque, to say the least. The number on our pharmacy card reaches the mail-order pharmacy, which is a fairly useless (to us) place. We found out during the Great Transplant Medication Shortage (The Terror of Running Short....) that this is not actually considered to be OUR mail-in pharmacy (We can get 'ordinary' medications mailed to us from there if we want, but it is more expensive than using out local pharmacy. And for 'special' medicines like transplant stuff, we have to use our local pharmacy, 'cause THAT's our ACTUAL mail in pharmacy, even though we just walk in and pick them up. Don't ask me. I'm just The Fixer.). But I had to start somewhere, so....
The very nice lady who answered wasn't sure what the issue was, because Botox is in a Super Special Category that is neither "regular" nor "mail order," so it wasn't her department. "I'm going to need to talk to someone else, and it could take quite a while. If you don't want to listen to the whole thing, I can put you on hold."
Well, honestly, I'm still at work, and I have a lot of charting and dictation to do that I really don't want YOU to listen to, so sure, sounds like a plan. "Do you think I'll have time to run to the bathroom, because I probably should have done that before I called you!" She assured me that if she comes back on and I'm gone, she'll wait for me.
No need to have worried. Fortunately, the Muzak was not too grating, because a full hour after I got back to my seat, she came back on. It turns out that the Botox authorization WAS still attached to Nemours neurology. She could see a record of ONE call from the new neurologist requesting that it be released to them, but no calls from Nemours allowing it to be released.
By the time I had this information, it was too late on Thursday to call Nemours again. Friday I got ahold of the injections scheduler, and she said the reason the provider hadn't called back was because she was concerned that they wouldn't be able to get the Botox, because it had been released to the new provider. Well, damn skippy. "As a matter of fact, no, it has NOT." I filled her in on what the insurance company had said, and she was a bit miffed at them, since she herself had called them.
(So either she never called, or the insurance company made no note of the call and failed to release the medication that my kid needs, making it necessary for her to WAIT an extra three weeks. I'm placing ALL my money on it being the insurance company. I've been playing this game with them for more than a minute now.)
At this point, we are running out of options. I'm going to assume that our appointment with the new neurologist is, in fact, cancelled (something that I confess I have failed to confirm one way or the other since this all began. If I ask her to release the medication now, this will likely backfire badly; and honestly, I don't think I can be polite to the scheduler in the new doctor's office at this point.
So: "Can she be fit in when we are coming down in December? I'll clear my schedule and come a day early, stay a day longer, whatever works."
I got a call at the end of today: She has an appointment.
I admit I cried when I put the phone down. I just needed a minute. I am getting too old for this stuff.
DeeDee
Tuesday, November 12, 2019
Cancelled.....
Babygirl is due for Botox injections every 12 weeks, so she should have them November 21. Due to miscellaneous scheduling issues, our new local neurologist set her up for November 25 when she first met him back in August. Shortly after that appointment, his office called me.
"I'm trying to get authorization for the Botox, but your specialty pharmacy tells me that there is already a prior authorization in place elsewhere that needs to be cancelled so we can set one up here."
No problem. I'll call them.
Nemours informs me that cancelling the PA isn't needed, the new doctor just needs to ask the insurance company to transfer it over to them.
I'll let them know.
"I've contacted your insurance and they assure me that the other hospital needs to cancel the PA before we can proceed."
Got it. I'll let them know. In person, since we happen to be going down there.
"We do this all the time, and we know they are wrong, but we'll be glad to call your insurance company and talk to them."
Somewhere in the middle of all of this, I called the insurance to see if I could get a handle on where exactly the problem was. I'm pretty sure they told me the new doctor only had to submit the appropriate paperwork.
I let them know. And that was the last I heard about it, likely about 3 weeks after we saw our Nemours neurologist for her last set of injections at the end of August.
Today I got a message on my phone while I was at work. "We're just letting you know that we don't accept your insurance for Botox. Give me a call and let me know if you want me to put in a referral to the pain management center." Hmmm....refer us to Pain Management, at the hospital where I DON'T work, when my JOB IS PAIN MANAGEMENT at my OWN hospital????
Problem is, we aren't set up for Botox at our center (yet) and the other neurology group doesn't do it at all. And our insurance barely covers the other pain management group - Hubby used to go there and our bills were outrageous.
So I call back. The lady who has been working on the PA is clearly frustrated, and tells me: A) Nemours still has not "released" the PA they have on the Botox, and she has tried NINE TIMES to get the paperwork through, and B) even if she does, our insurance is apparently famous for authorizing it and then not paying for it anyway (which, if you knew that, WHY did you not say so 3 months ago?).
Well. I can hear that she's frustrated, and I understand, but she's at least 10 levels less frustrated than I am. I have a kid whose headaches are already in pre-Botox ramp-up mode and she's been suffering pretty badly for more than a couple of weeks, and the shots as planned were already going to be half a week late. Even if she refers me to the other place, there is NO CHANCE that we will get in in less than a week for those shots.
"I can pay for the Botox. We have a Health Savings Account, it's no problem." "How can you pay for it if I can't even GET it for you?"
Frackin' crap on a cracker. I. Just. Can't. Even.
I put in a call to Nemours Neurology. We have to go to CHOP on December 12, maybe they can fit us in (but by that time we will be THREE weeks overdue). They are checking schedules and will get back to me. Tomorrow I'll call our insurance and have a WTF conversation with them. And if all else fails I'm going to have a come-to-Jesus doctor-to-doctor conversation with a specialist that I've been sending patients to for literally more that 20 years, and let him know that he owes it to ME to take care of my kid, just this once.
I've never called in my chips on a specialist before. But this may be the time.
DeeDee
"I'm trying to get authorization for the Botox, but your specialty pharmacy tells me that there is already a prior authorization in place elsewhere that needs to be cancelled so we can set one up here."
No problem. I'll call them.
Nemours informs me that cancelling the PA isn't needed, the new doctor just needs to ask the insurance company to transfer it over to them.
I'll let them know.
"I've contacted your insurance and they assure me that the other hospital needs to cancel the PA before we can proceed."
Got it. I'll let them know. In person, since we happen to be going down there.
"We do this all the time, and we know they are wrong, but we'll be glad to call your insurance company and talk to them."
Somewhere in the middle of all of this, I called the insurance to see if I could get a handle on where exactly the problem was. I'm pretty sure they told me the new doctor only had to submit the appropriate paperwork.
I let them know. And that was the last I heard about it, likely about 3 weeks after we saw our Nemours neurologist for her last set of injections at the end of August.
Today I got a message on my phone while I was at work. "We're just letting you know that we don't accept your insurance for Botox. Give me a call and let me know if you want me to put in a referral to the pain management center." Hmmm....refer us to Pain Management, at the hospital where I DON'T work, when my JOB IS PAIN MANAGEMENT at my OWN hospital????
Problem is, we aren't set up for Botox at our center (yet) and the other neurology group doesn't do it at all. And our insurance barely covers the other pain management group - Hubby used to go there and our bills were outrageous.
So I call back. The lady who has been working on the PA is clearly frustrated, and tells me: A) Nemours still has not "released" the PA they have on the Botox, and she has tried NINE TIMES to get the paperwork through, and B) even if she does, our insurance is apparently famous for authorizing it and then not paying for it anyway (which, if you knew that, WHY did you not say so 3 months ago?).
Well. I can hear that she's frustrated, and I understand, but she's at least 10 levels less frustrated than I am. I have a kid whose headaches are already in pre-Botox ramp-up mode and she's been suffering pretty badly for more than a couple of weeks, and the shots as planned were already going to be half a week late. Even if she refers me to the other place, there is NO CHANCE that we will get in in less than a week for those shots.
"I can pay for the Botox. We have a Health Savings Account, it's no problem." "How can you pay for it if I can't even GET it for you?"
Frackin' crap on a cracker. I. Just. Can't. Even.
I put in a call to Nemours Neurology. We have to go to CHOP on December 12, maybe they can fit us in (but by that time we will be THREE weeks overdue). They are checking schedules and will get back to me. Tomorrow I'll call our insurance and have a WTF conversation with them. And if all else fails I'm going to have a come-to-Jesus doctor-to-doctor conversation with a specialist that I've been sending patients to for literally more that 20 years, and let him know that he owes it to ME to take care of my kid, just this once.
I've never called in my chips on a specialist before. But this may be the time.
DeeDee
Saturday, August 31, 2019
Letting Go......
Babygirl had her last pediatric neurology appointment two days ago, and her first adult neurology appointment two weeks ago. The peculiar overlap had to do with realizing that we don't need an adult Ubercenter for her headaches, so being turned down by the specialists in Rochester was enlightening and relieving (once I had time to process the idea that there is some area of her health that is no longer so "special" that a local doctor can't manage it). Meeting the new doctor before saying goodbye to the current one was also reassuring from a purely personal standpoint: Babygirl and I both like his style of communication, and is feels comfortable. It makes letting go of the amazing nurse practitioner we've been seeing for 3 1/2 years a just a little easier.
We haven't frequently talked about A.I. DuPont/Nemours Children's Hospital, but since we left CHOP neurology (Snapped.....), our specialist there has been nothing but amazing. She has been patient, communicative, aggressive, and effective. Although Babygirl still has headaches, she has them infrequently and manageably. In other words, she has migraines, but the migraines don't have her.
So although CHOP saved her life, Nemours saved her quality of life, and that is no small thing at all.
Why do you take your kid so far away for her health care? People ask this all the time.
Because you gotta do what you gotta do. This was 24 miles further down the road from where we were already going. I'm grateful that we could do it. So grateful.
DeeDee
We haven't frequently talked about A.I. DuPont/Nemours Children's Hospital, but since we left CHOP neurology (Snapped.....), our specialist there has been nothing but amazing. She has been patient, communicative, aggressive, and effective. Although Babygirl still has headaches, she has them infrequently and manageably. In other words, she has migraines, but the migraines don't have her.
So although CHOP saved her life, Nemours saved her quality of life, and that is no small thing at all.
Why do you take your kid so far away for her health care? People ask this all the time.
Because you gotta do what you gotta do. This was 24 miles further down the road from where we were already going. I'm grateful that we could do it. So grateful.
DeeDee
Thursday, August 15, 2019
Well, Maybe Not ALL Pharmacists.....
I decided to call today and check on the prescription that got sent to the mail order pharmacy yesterday. For those of you who haven't had the pleasure, this begins with you speaking your insurance number to a Robot, who can't understand unaccented English, and then you punch in the numbers, and repeat for the patients date of birth. Then you wait a bit for someone who isn't "helping other customers." By the time they get to you, the Robot has apparently forgotten who you are and you get to start over.
It took a minute for the gentleman on the other end to locate the prescription, and then the fun began.
Him: "We aren't your mail order pharmacy."
Me: "Yes, you are. We get our Botox from you guys four times a year. We used to mail order with you all the time until the local pharmacy got cheaper."
Him: "We do specialty drugs, but your mail order is Loor-dez pharmacy."
Me: "Lourdes is my local pharmacy. They gave us a 5 day supply and they can't get any more. There isn't any in the warehouse and there's a shortage nationwide."
Him: "They just need to order it. It should get there in a couple days."
Me: ". . . . I'm not sure how to say that any plainer, sir. They. Can't. Get. Any. More."
Him: "Ascension is a big organization, ma'am. You should notify your Human Resources Department if your mail order pharmacy is not getting what you need."
Me: "Not sure how that will help me right now sir, but I'll certainly take that under advisement. In the meantime, i'd be happy to pay cash for this if our insurance won't cover it at your pharmacy. I just need to make sure you have current payment information."
Him: "Let me check....."
Me: "Maybe before you do that, could you see if you have this in stock?"
Him: ". . . . . . . . . . . . We do not.... Do you want me to order this for you?"
Me: "F@*K.,,,, Oh, sorry, sorry. Yes, go ahead."
I suspect there's not a snowball's chance in hell that we're going to get that prescription filled.
DeeDee
It took a minute for the gentleman on the other end to locate the prescription, and then the fun began.
Him: "We aren't your mail order pharmacy."
Me: "Yes, you are. We get our Botox from you guys four times a year. We used to mail order with you all the time until the local pharmacy got cheaper."
Him: "We do specialty drugs, but your mail order is Loor-dez pharmacy."
Me: "Lourdes is my local pharmacy. They gave us a 5 day supply and they can't get any more. There isn't any in the warehouse and there's a shortage nationwide."
Him: "They just need to order it. It should get there in a couple days."
Me: ". . . . I'm not sure how to say that any plainer, sir. They. Can't. Get. Any. More."
Him: "Ascension is a big organization, ma'am. You should notify your Human Resources Department if your mail order pharmacy is not getting what you need."
Me: "Not sure how that will help me right now sir, but I'll certainly take that under advisement. In the meantime, i'd be happy to pay cash for this if our insurance won't cover it at your pharmacy. I just need to make sure you have current payment information."
Him: "Let me check....."
Me: "Maybe before you do that, could you see if you have this in stock?"
Him: ". . . . . . . . . . . . We do not.... Do you want me to order this for you?"
Me: "F@*K.,,,, Oh, sorry, sorry. Yes, go ahead."
I suspect there's not a snowball's chance in hell that we're going to get that prescription filled.
DeeDee
Wednesday, August 14, 2019
Pharmacists Keep Capes and Tights in the Back.....
Here's the follow up to Babygirl's medication shortage crisis:
Wegmans pharmacy contacted me yesterday to let me know two different things.
#1) We can't pick up more medication until Thursday because we just got a 5 day supply.
#2) Our insurance won't pay for the medication at Wegmans. We have to mail order it, so #1 is COMPLETELY irrelevant.
Alrighty, then. We are leaving for the beach on Friday. We can't wait for a mail order delivery, and I have no way at all of predicting whether THAT pharmacy has any tacrolimus anyway.
Mentally wincing, I asked, "How much is it if I pay cash?" "Let me run it through with a Wegmans discount card.....It's about $90." "Get it ready. I'll pick it up after work tomorrow." I've paid higher co-payments than that, seriously, so, go for it.
Then this morning, a note appeared on my desk, "Medicine Shoppe called. They have 300 1 mg tacrolimus."
Now, if you read my post from 2 days ago, you'll realize that this was the ONE single pharmacy I did NOT call. But the pharmacy is a block from my new office, and the pharmacist just started working a couple of days at our hospital pharmacy as well. She was on duty for the beginning of my frantic search, so when she put her cape and tights on an flew back to her home base, she checked the shelves THERE. (Keep in mind that this means that this woman had to remember both my maiden name AND my married name, connect them together. AND link it to Babygirl, and then recall where I work NOW. And she's NEW.)
I called her. Three hundred pills is a 50 day supply, plus the 30 days we have waiting at Wegmans. Like the others, insurance won't cover it. "How much for cash?" "$84.50, pharmacy cost." Screw asking anybody else to deal with this at this point - I put my doctor hat on and "called in" the prescription over the phone, and picked them up on my lunch break. And then....
Since insurance didn't cover ANY of that, I got back on the phone with CHOP. This time I reached our nurse practitioner. The transplant team is VERY aware of the problem, unlike the general nephrologist I chatted with on call. She sounded.....tired. Maybe a little afraid. "Do you have enough?" I told her what I'd done and she was frankly relieved. She has some resources, but things are getting tight. I asked her to send a request for a 90 d supply to our mail-order specialty pharmacy. "Do they have any?" she asked. "I don't know. I hope so."
So. Here I am, contemplating the fact that, by the grace of God, I am in a position where I can throw down $200 for an emergency expense and not worry about what I'm not going to be able to pay for this week, or whether we'll eat. By the grace of God I have a pharmacist who went the extra miles needed to make sure that Babygirl has what she needs to weather the crisis, and that I can smooth the path a little.
And I'm saying prayers for those who can't. Because somewhere, I am ABSOLUTELY certain, there is a mother weeping RIGHT NOW because she cannot, cannot, cannot solve this problem.
DeeDee
Wegmans pharmacy contacted me yesterday to let me know two different things.
#1) We can't pick up more medication until Thursday because we just got a 5 day supply.
#2) Our insurance won't pay for the medication at Wegmans. We have to mail order it, so #1 is COMPLETELY irrelevant.
Alrighty, then. We are leaving for the beach on Friday. We can't wait for a mail order delivery, and I have no way at all of predicting whether THAT pharmacy has any tacrolimus anyway.
Mentally wincing, I asked, "How much is it if I pay cash?" "Let me run it through with a Wegmans discount card.....It's about $90." "Get it ready. I'll pick it up after work tomorrow." I've paid higher co-payments than that, seriously, so, go for it.
Then this morning, a note appeared on my desk, "Medicine Shoppe called. They have 300 1 mg tacrolimus."
Now, if you read my post from 2 days ago, you'll realize that this was the ONE single pharmacy I did NOT call. But the pharmacy is a block from my new office, and the pharmacist just started working a couple of days at our hospital pharmacy as well. She was on duty for the beginning of my frantic search, so when she put her cape and tights on an flew back to her home base, she checked the shelves THERE. (Keep in mind that this means that this woman had to remember both my maiden name AND my married name, connect them together. AND link it to Babygirl, and then recall where I work NOW. And she's NEW.)
I called her. Three hundred pills is a 50 day supply, plus the 30 days we have waiting at Wegmans. Like the others, insurance won't cover it. "How much for cash?" "$84.50, pharmacy cost." Screw asking anybody else to deal with this at this point - I put my doctor hat on and "called in" the prescription over the phone, and picked them up on my lunch break. And then....
Since insurance didn't cover ANY of that, I got back on the phone with CHOP. This time I reached our nurse practitioner. The transplant team is VERY aware of the problem, unlike the general nephrologist I chatted with on call. She sounded.....tired. Maybe a little afraid. "Do you have enough?" I told her what I'd done and she was frankly relieved. She has some resources, but things are getting tight. I asked her to send a request for a 90 d supply to our mail-order specialty pharmacy. "Do they have any?" she asked. "I don't know. I hope so."
So. Here I am, contemplating the fact that, by the grace of God, I am in a position where I can throw down $200 for an emergency expense and not worry about what I'm not going to be able to pay for this week, or whether we'll eat. By the grace of God I have a pharmacist who went the extra miles needed to make sure that Babygirl has what she needs to weather the crisis, and that I can smooth the path a little.
And I'm saying prayers for those who can't. Because somewhere, I am ABSOLUTELY certain, there is a mother weeping RIGHT NOW because she cannot, cannot, cannot solve this problem.
DeeDee
Monday, August 12, 2019
The Terror of Running Short.....
I went hiking with friends on Sunday. I was enjoying a sunny, woodsy adventure laced with a ton of girl talk, when my I got a text from Hubby. Now, the kids send text messages all the time, as if I have no predictable job or other activities, but Hubby generally waits for a face-to-face, so I pulled it up.
"The pharmacy only has 40 tacrolimus and can't order any more because manufacturer is out or behind."
Um.....What??
"Call Monday. There are none in the warehouse."
Well. This is alarming.
Let's back up a little, since it's been a LONG time since we've had to talk about medications.
When Babygirl's own kidneys died when she was 11, she went on dialysis: Very restricted diet, painful nightly machine hookups, misery. And statistically a poor life expectancy. Most dialysis patients live 5-10 years.
When she got her kidney transplant at age 12, that improved her odds somewhat. A deceased donor kidney averages 10-15 years, and the quality of life is better. But there's a catch: You have to stay on medication for the rest of your life (or until the donor kidney dies) to keep your body from rejecting the kidney. If you miss about three days in a row, you can pretty much kiss the kidney goodbye. Babygirl, like most transplant recipients, is on a cocktail: Mycophenolate (Cellcept), tacrolimus (Prograf) and prednisone. So far it's working beautifully.
But what do you do when, for some reason, there is a nationwide shortage of one of your medications?
Tacrolimus was noted by the FDA on its official website to be at risk for shortages in May of this year (due to a lack of availability of one of it's ingredients, apparently). According to this FDA website, it was expected that this shortfall could become critical by the end of July....and here we are, right on schedule.
So, when I had the chance today, between patients, during lunch, and after patients (paperwork be damned for a bit), I confirmed with our pharmacy that they could not, indeed, get this drug anytime soon from their suppliers. The 40 pills we have are all we are going to get. Babygirl takes EIGHT of these daily. We have a few left of last months' supply. We now have about a weeks' worth of a medication critical for keeping the donor kidney alive.
I called the transplant team by 10 AM to see if they could come up with a backup plan. The unthinkable happened. For the first time in almost 9 years, no one called me back.
Well, frack.
Back on the phone. CVS? about 3 days available, no warehouse supplies. Walmart? Nope. Walgreens? No can get. Wegmans? "We have about 3 days' worth, but we can order more tomorrow." "Are you sure??" The sweet young man was somewhat taken aback by my doubt, but he double checked. "We have 3 suppliers. Two are completely out but I can get 240 tablets from the third if you can get me a prescription." Oh HELL yes I can get you a prescription.
I think.
I squashed my immediate reaction, which was to call back as my physician self and give them the prescription over the phone. I called the transplant after-hours on-call doctor for the first time in YEARS (and the only time when Babygirl wasn't actually ill). The nephrology fellow called back in less than 5 minutes, and I explained the situation to her. Apparently we are the first to hit this wall, so she was appalled when the overall implications hit her. She immediately called in the prescription for us. Because we got a 5 day supply yesterday, our insurance is making us wait until Thursday to pick it up. I confirmed with Wegmans that they had indeed actually put the order in (THAT lady was a bit snarky about it, but hey, my kid's life is at stake here, so suck it up lady and just check, okay?), and we'll have a one month cushion, enough to get us through to our next appointment with the transplant team.
I came home and had an ugly cry. My eyes are still pretty swollen.
The FDA knew in the middle of MAY that this shortage was coming. Since 1988, over 750,000 people have received organ transplants in the US. Assume that some are no longer living. Some do not need anti-rejection medication (corneas, tendons), but most DO, and that's a lot of people who are at risk of some pretty severe, potentially fatal, consequences if one of the major anti-rejection medications just disappears from the market. It's not like blood pressure medication, where there are 40-60 reasonable alternatives. In this field there are maybe 8-12 drugs, and you have to be on three of them at once.
Why didn't the FDA act?
In this specific case I can't speak with certainty. But in the case of many, many recent medication shortages the issue is Hurricane Maria. Puerto Rico was the source of many of our affordable generic medication, and many of our medical supplies (you know, those cute little IV bags that piggyback your antibiotics to grownup IV bag? Those were in short supply for a YEAR or more after that hurricane). Puerto Rico has had 3 governors in the last month, and parts of the island are approaching the second anniversary of the storm with no restoration of electricity or water. And, apparently, building new drug factories on the mainland takes time?
Our failure to see beyond ourselves politically is coming back to bite us medically.
DeeDee
"The pharmacy only has 40 tacrolimus and can't order any more because manufacturer is out or behind."
Um.....What??
"Call Monday. There are none in the warehouse."
Well. This is alarming.
Let's back up a little, since it's been a LONG time since we've had to talk about medications.
When Babygirl's own kidneys died when she was 11, she went on dialysis: Very restricted diet, painful nightly machine hookups, misery. And statistically a poor life expectancy. Most dialysis patients live 5-10 years.
When she got her kidney transplant at age 12, that improved her odds somewhat. A deceased donor kidney averages 10-15 years, and the quality of life is better. But there's a catch: You have to stay on medication for the rest of your life (or until the donor kidney dies) to keep your body from rejecting the kidney. If you miss about three days in a row, you can pretty much kiss the kidney goodbye. Babygirl, like most transplant recipients, is on a cocktail: Mycophenolate (Cellcept), tacrolimus (Prograf) and prednisone. So far it's working beautifully.
But what do you do when, for some reason, there is a nationwide shortage of one of your medications?
Tacrolimus was noted by the FDA on its official website to be at risk for shortages in May of this year (due to a lack of availability of one of it's ingredients, apparently). According to this FDA website, it was expected that this shortfall could become critical by the end of July....and here we are, right on schedule.
So, when I had the chance today, between patients, during lunch, and after patients (paperwork be damned for a bit), I confirmed with our pharmacy that they could not, indeed, get this drug anytime soon from their suppliers. The 40 pills we have are all we are going to get. Babygirl takes EIGHT of these daily. We have a few left of last months' supply. We now have about a weeks' worth of a medication critical for keeping the donor kidney alive.
I called the transplant team by 10 AM to see if they could come up with a backup plan. The unthinkable happened. For the first time in almost 9 years, no one called me back.
Well, frack.
Back on the phone. CVS? about 3 days available, no warehouse supplies. Walmart? Nope. Walgreens? No can get. Wegmans? "We have about 3 days' worth, but we can order more tomorrow." "Are you sure??" The sweet young man was somewhat taken aback by my doubt, but he double checked. "We have 3 suppliers. Two are completely out but I can get 240 tablets from the third if you can get me a prescription." Oh HELL yes I can get you a prescription.
I think.
I squashed my immediate reaction, which was to call back as my physician self and give them the prescription over the phone. I called the transplant after-hours on-call doctor for the first time in YEARS (and the only time when Babygirl wasn't actually ill). The nephrology fellow called back in less than 5 minutes, and I explained the situation to her. Apparently we are the first to hit this wall, so she was appalled when the overall implications hit her. She immediately called in the prescription for us. Because we got a 5 day supply yesterday, our insurance is making us wait until Thursday to pick it up. I confirmed with Wegmans that they had indeed actually put the order in (THAT lady was a bit snarky about it, but hey, my kid's life is at stake here, so suck it up lady and just check, okay?), and we'll have a one month cushion, enough to get us through to our next appointment with the transplant team.
I came home and had an ugly cry. My eyes are still pretty swollen.
The FDA knew in the middle of MAY that this shortage was coming. Since 1988, over 750,000 people have received organ transplants in the US. Assume that some are no longer living. Some do not need anti-rejection medication (corneas, tendons), but most DO, and that's a lot of people who are at risk of some pretty severe, potentially fatal, consequences if one of the major anti-rejection medications just disappears from the market. It's not like blood pressure medication, where there are 40-60 reasonable alternatives. In this field there are maybe 8-12 drugs, and you have to be on three of them at once.
Why didn't the FDA act?
In this specific case I can't speak with certainty. But in the case of many, many recent medication shortages the issue is Hurricane Maria. Puerto Rico was the source of many of our affordable generic medication, and many of our medical supplies (you know, those cute little IV bags that piggyback your antibiotics to grownup IV bag? Those were in short supply for a YEAR or more after that hurricane). Puerto Rico has had 3 governors in the last month, and parts of the island are approaching the second anniversary of the storm with no restoration of electricity or water. And, apparently, building new drug factories on the mainland takes time?
Our failure to see beyond ourselves politically is coming back to bite us medically.
DeeDee
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