There are obstacles in taking control of our lives. In every step forward an often dumbfounding impediment that threatens further progress.
One recent Friday, we receive a message from one of our children who is having a medical emergency. It’s 9:06 in the morning in Sicily which means it is 3:06 AM where she lives in America. Not an ideal time anywhere in the world to have an emergency, but especially not ideal for a college student living in a town she didn’t grow up in, amongst people who don’t know her well and know even less about the health crisis she was presently facing. It is definitely not ideal for a parent either to be so far removed, physically, from the situation.
The message alone is unusual as our daughter is taking full advantage of our move to another continent and—ahem, speaking of obstacles—dissolution of our occasional (my word choice) monitoring, management and motivation, to find her own footing in life. In other words, we don’t hear from her a whole lot. Which is fine. Because as hard as it is to accept, it does highlight an essential role of being a parent: to never get enough of our kids, but at the same time want them to have the freedom to do as they will. Which is all to say, her text catches us off guard. The early morning timing of it ramps our attention to Defcon 2. Nuclear annihilation is imminent.
It reads: Pump crapped out in the middle of the night.
The pump she’s referring to is an insulin pump, a delivery device used in the treatment of Type One Diabetes, and the time stamp, middle of the night, refers to the indeterminate amount of time she’s been without this vital, life-sustaining remedy. It’s not exactly uncommon for things to go sideways with this disease—it’s only been in the past hundred years that we even knew of insulin. Prior to that, people with diabetes didn’t live long. Even so, though the situation is not yet emergency room, threat-level Fucking Hell, it could turn so very quickly.
But this is not a story about diabetes, though it shapes the background of what I’m about to share. It’s about care and suffering and the responsibilities others have to provide for the first, thus mitigating the latter. It’s about compassion and empathy. It’s about helping people in need.
If you’re not familiar with Type 1 Diabetes, you can read more about it by going back to the origins of this newsletter, when it was a blog called Without Envy: raising a child with diabetes to live life to its fullest. But all you need to know is that without insulin people—all people—those with or without diabetes, will become very sick and eventually die. Not a question of if, but when. Therefore, any situation arising that inches the needle even a little bit in that direction people with diabetes, and their caretakers, tend to take things very seriously. Such as a pump crapping out in the middle of the night.
Briefly, this is what needed to happen: Without a pump, Lia, our daughter, would have to fall back on manually administering insulin through a syringe. This can be done with the same insulin used in her pump, but for only a short period of time. Longer term care, say, while you work through the challenges of a malfunctioning pump, requires the use of a second type of insulin, one developed precisely for this purpose. Which she did not have. She should’ve, but that's another thing.
The first call, of course, was to the maker of the pump, which after an hour of insanity to confirm it was actually not functioning properly, offered to overnight her a ninety day loaner. It’s 2 a.m Friday. The replacement would arrive by noon the next day. Perfect, ding-ding-ding. Things would be back to normal within the next thirty-six hours or so.
Now for the long acting insulin to keep her blood sugars level until it arrived. So she calls her Endocrinologist’s office, whose overnight answering service apparently feels her emergency does not warrant notifying the physician on call and suggests she call back during normal business hours. Thud.
From 3:30 AM to 9:00 AM Lia's blood sugars steadily climb while her body, craving energy from glucose to keep all her organs functioning, begins burning fat instead. This biological process dumps loads of these tiny little dynamic molecules, called ketones, into her blood stream. If untreated, ketones cause a person with diabetes to fall very ill and eventually… well, you get the point.
At 9:15 AM, I text Lia back: Did your Dr provide a prescription? I don’t see it online.
I thought she did, Lia replies. That’s what the receptionist told me when I called. So, if not I’m just gonna cry and start dissolving. If I can’t find a pharmacy that has them (which is very likely around here, hardly anybody ever has diabetes supplies and I don’t know why). I feel like death now.
This issue with medical supplies is a huge one, especially in America. Even before covid. From pandemic-related computer chip delays and pitifully slow production; to the flat-footedness and underfunded failure by the dismally low-profiled Strategic National Stockpile (has anyone else heard of it?) to approximately forecast crises, which seems by its very name, the sole purpose of its existence; to structural problems with supply chains; all of which drove prices higher and forced health care providers into a bidding war with each other and the federal government.
A bidding war? For medicine? It’s capitalism in prime time and you don’t have to think very hard to figure out who looses in that equation. We are balancing the books on the backs of the poor.
Once the prescription gets all straightened out, or so we think (read on), Lia learns that pharmacy is out of stock of the insulin she needs. Which strangely doesn’t even matter, because her insurance is balking at paying for it anyway because, according to their records, Lia seems to use a lot of insulin and they had just paid for a prescription not too long ago. The time, in case you’re keeping track, is two o’clock in the afternoon. Twelve hours since she first discovered her pump had stopped working.
The pharmacy continues to offer the apologetic, We’re working on it, for the rest of the day.
The next morning, Saturday, she texts us again. It’s 1:04 AM and consists of this one picture.
These are the ketones I mentioned, which are elevated and making her feel miserable. They are what lead to emergency room visits. Getting rid of them is not simple, nor is it all that difficult. It just requires administering insulin. So I check on the pharmacy website and do not even see a prescription for the insulin the situation requires. I call them, the only in her area open at 5:30 in the morning. The pharmacist there confirms there is no prescription, but he does have a vial on hand. He just can’t hold it for her. I need a prescription, he says.
We are now more than 24 hrs since Lia requested said prescription. I call the doctor’s office and speak to the same answering service Lia spoke to the day prior and somehow manage to explain the situation without losing my fucking temper. Within a few minutes, the on call physician calls me back. She seems to understand everything I am telling her and tells me she’ll input the prescription immediately.
Meanwhile, I’ve received an email from the shipping company regarding the replacement pump. It’s not expected to deliver Saturday by noon. Nor Sunday, nor Monday. Because it was shipped 2 Day Business Air and not Overnight Saturday Delivery, it won’t arrive until Tuesday evening. Which means, for Lia, this situation with the prescription is not going away anytime soon.
The conversation that ensued:
Lia: Would calling the pump manufacturer do anything to help speed that up?? I at least want to yell at them because what the fuck. I have diabetes…
Because what can you say to your child? Yell. Get angry? Scream at them? Sad as it sounds, learning to be in control of your life also means learning to exist in the world as you find it. Unpromising jobs. The soaring cost of living. Relentless discontent for the future that’s exploding right in front of their faces. Where is there room for young people to figure out who they are, where they stand, and what they can and can’t expect from the world, when really what they feel like doing, and have every right in feeling, is to blow up their own lives in search of radical change. In all honesty, I am torn between telling Lia to let them motherfuckers have it! or quietly seek shelter in this quote from Albert Camus: Blessed are the hearts that can bend; they will never be broken.
Then this comes, at two in the afternoon on Saturday: Your prescription is not yet ready for pickup. An issue, the pharmacy says, with insurance. Of course. That hungry, little miserable shit-slinger, coming on the tail of some eight hours of…nothing. Of just waiting. In the end, as always, the insurance gets fed, or not. Who really cares? The collapse of that thieving bunch would not be the worse thing to see happen in an apocalypse.
After hours and phone calls and one delay after another, the prescription is given the green light. Only the pharmacy doesn’t actually have it on hand, so they sent her to another one miles away and it is there where this saga ends. But not before she suffers one final, in-your-face frustration. They had the insulin, but no syringes to administer it (seriously?). Fortunately, we had stockpiles of those.
Forty-eight hours after the problem arose, Lia, having come up short again and again, having been forced to weather the shortcomings of others, finally had the one thing she needed to take care of her own health. After trying and failing. Expecting one thing and finding another. After tears and cuss words and the shedding of all useful understanding of how anything in the universe works, she still did not throw her hands in the air and say, Ah, to hell. Just fuck it.
But why, why all this trouble? Why the problem with the pump, with the shipping to save a buck? Why the mis-read by her physician, who above all else must be a good listener? Why the problem with the pharmacy, of not having stock on hand, of not having better customer service, of not stopping for one fucking second to consider what must that person on the other side of the phone or counter be going through? Why the problem with insurance? When did patients become a profit center?
Right after Lia was diagnosed more than a decade ago, I had a family member tell me this was her burden to bear—I disagreed, she was ten at the time, but whatever. It was more a plea from me seeking family support, which comes without asking for it, or doesn’t come at all. But yes, now that she’s older, this is definitively her burden. If not the inflicted, who else is going to bear it? Responsibility should not be mistaken for blame, however, so why are we making it harder on her?
It begs the question: How might it have all gone differently if what happened to her there happened instead in Italy?
In terms of incompetence, people are the same the world over. We think we know more than we do and don’t like admitting to it when it turns out we don’t. Pharmacists are people. Doctors are people. Medical device makers are people. People make mistakes. Or lack the training or knowledge to make good decisions. Or just don’t care.
Whatever the reason, let’s put that aside. Smart people make bad decisions and care-less people make life-threatening ones. Shame on us, but this isn’t the point. The point is why are we making matters worse with a business model that favors compensation ahead of care? Here, in Sicily, we might have had the same issues with the pump, the physician, the prescription, the pharmacy, all of those situations involving a person might have played out in exactly the same manner. Who knows?
Some figures that might offer some insight (you can skip these if figures make your eyes go numb. And besides, you probably already know just how poorly America's healthcare system compares to other developed nations): According to the WHO, Italy's healthcare system is consistently ranked among the best in the world (#2 as of 2015. The US is at 37, pinched between Costa Rica and Slovenia). Life expectancy is the 4th highest among developed countries (83.4 yrs) and the world's 8th highest according again to the WHO (82.8 years in 2018). Spending on healthcare hovers around 9.7% of GDP and while the US spends more than Italy, or any other country, the percentage of uninsured adults in America is about 13%. The number of underinsured is much higher. Leading to this 2021 survey which suggests nearly 40 percent of U.S. adults have a medical-related debt. Further, due to these financial challenges, decisions regarding a visit to a doctor or receiving specialist care can come down to cost, leaving many people without the care they need. Since 2014, the percentage of U.S. adults who go without health care due to cost has been around 35 percent.
The direction these percentages lead to is the possibility that our daughter, or someone like her, might choose to do nothing about a crapped out pump. Because to do anything would have put an unbearable strain on her finances and quality of life, for years or possibly longer? Is that the burden we intend?
No? Then for fuck’s sake, let’s fix it. The Italian state has run a universal public healthcare system since 1978. Healthcare is provided to all citizens and residents by a mixed public-private system. The public part is the Servizio Sanitario Nazionale, which is organized under the Ministry of Health. Our own personal experience with it so far has been acceptable. I can assure you it didn’t take two days to get the necessary medicine. It took an hour, perhaps, and that was just to treat a rash, not something as serious as diabetes.
Would it have been more difficult getting insulin? Maybe, but probably not. Once the “people” problems got ironed out there would be nothing else standing in the way. Certainly not the question of who was going to pay for it. She would certainly have not suffered any longer than she had to.
Does that mean hours shorter? I don’t know. But I do know that hours matter in the world of treating type one diabetes. I hope we never have to find out. But, sitting here today, I can tell you I hope if we do, she’s finding her footing a little bit closer to home.
To learn more about Type One Diabetes and how it affects a person's life, or to donoate to fund the research seeking better ways to treat and one day cure this chronic dissease, please visit JDRF.
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