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
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