On Halloween night of 2016, after a weekend spent trying to figure out why my 10 year old daughter felt crappy, with vague symptoms like weakness, nausea, clammy skin, stomach ache, and frequent urination, I took my still costumed daughter to the local urgent care with a suspected UTI.
Instead we were sent to the best children's hospital in the area with a diagnosis of Type 1 Diabetes.
In case you've never experienced this sort of life-changing chronic diagnosis in your life, there is really no way to express the emotional, physical, and financial stress you just were gifted. Type 1 Diabetes is the sort of illness that never goes away, requires 24-7 intervention, a level of medical and dietary knowledge akin to approximately a 2nd year med student, and a determination and fortitude akin to that of a finely honed marksman.
But, that isn't what this post is about. This post is about how the American healthcare industry (includng but not limited to the hospital system, medical billing systems, health insurance industry, pharmaceutical industry, pharmaceutical benefit system, and durable medical insurance system) tried it's best to kill my child, and continues to do so to this day.
My daughter was just 10 years old, had just finished trick or treating, and was dressed in her black and purple butterfly costume: The frilly black and purple skirt, the black top with sparkly heart on it, the huge black and purple wings and the eye mask and long antennae headband. She had her bag of candy, and our family dog was at her side, a black lab/sharpei mix I had painted to look like a skeleton.
That was the last moment of her normal childhood. From that point on, she was a medical burden.
No, I never called her that. No one ever called her that. But now, 10 years later, as we celebrate her 10 year diaversary (it's a thing among diabetics), we had reason to discuss the time in her life when she had to be admitted to an inpatient pediatric psychiatric ward for suicidal ideation. And, I came to a startling realization.
Our medical industry in the united states isn't just killing poeple by denying care, and making access so expensive people avoid doctors...they are killing children by making them feel like their existence is destroying their families.
I made a lot of mistakes as a parent. I never realized that one of the biggest ones I made was allowing my child to overhear my interminable calls with doctors, insurance companies, pharmacy benefit managers, durable medical suppliers, peer to peer review managers, pharmacies, and all of the rest of the bullshit americans accept as part of getting care in our country. I allowed her to overhear discussions between her father and I about medical debt, setting up monthly payments, how early in each year we hit our deductible, then our out of pocket maximum, and how long it would take to pay down each bill added to the pile.
Looking back on the time in her life when she seriously did not want to exist anymore, she said not only did she have an alarmingly long list of methods of self-harm she had considered, but she sincerely felt that our lives would be better if she stopped being such a strain on them.
This was obviously a painful conversation, but I firmly believe in being open and honest with my adult children, and this was another one of those. It hurt. And, as the days passed after that conversation, and I thought about it over and over, I realized I was very much responsible for her feelings of self-hatred. I was responsible for letting awareness of the hassles I was dealing with to be known to a child.
oh, that hurt. that hurt a lot.
But I sat with it, and talked about it with friends, and family. And I apologized to my adult child. I am sorry. I never should have allowed her to become aware of that part of her care. It wasn't her fault. None of it was her fault. And I allowed myself the luxury of ranting about my hassles, of having phone conversations in the car while she was with me, of discussing payment plans and collections notices.
Oh.....what a moron I was.
But I don't lay full responsbiliity for this on me. I reserve a large portion of my rage, of my regret, of the blame, on the abortion passing as a healthcare industry in the united states.
We were uninsured when she was diagnosed. Her hospital bill, for 5 days in patient, was $13,000. Her first prescription pickup was $1,600 - 2 kinds of insulin, syringes, glucose gel, alcohol wipes, glucometer, test strips, lancettes, ketone test strips. Today, that would probably be closer to $3,000, or probably more.
We had psychiatry appointments starting immediately, at an office 90 minutes away by car. Pediatric Endo appointments every 2 weeks for a few months, also 90 minutes away.
We got her insured within a few months (thank you ACA, for allowing a kid with type 1 diabetes to be able to get health insurance...). We didn't qualify for any assistance programs. As self-employed, we made too much money...at least on paper. So, we had to buy the best insurance we could find, and pay the rest out of pocket.
What does that mean? the best insurance we could find? I honestly don't remember anymore, so much has happened since. But I know we had a $550/mo premium, with a $3,000 per family deductible. The next year, it went up by 80%, and our deductible went up to $8,000 per family. By 2020 we were paying $1,800 per month for a $11,500 family deductible policy, and getting anything covered took multiple phone calls, letters, faxes, emails, and weeks of wasted time.
She was approved for an insulin pump shortly after the start of 2017, just 2 months after diagnosis. We started researching, and settled on an option, and worked with the endo and the rep from the manufacturer to get it approved by insurance.
it took 4 months. 4 months to get approval. an uncountable number of phone calls, faxes, calls to the doctors, requests for prior auths, appeals....but we got approval.
Then the durable medical supplier lost the paperwork, and insisted we didn't have approval, so we had to go over it all again.
A few months later, I made the decision to get her on a continuous glucose monitor. Not having it was literally killing me - you have to get up multiple times every single night to test your kid's blood sugar. If she were to drop low, she could die in her sleep , without anyone knowing something was wrong. So you act as your child's medical monitor, and you get very good at moving silently, using a lancer to prick a finger (or a toe), test the blood sugar level. If they're high, you prep a syringe, inject your child. if they're low, you wake them up enough to drink juice, or soda. You stay up, and return, and test again in 15 minutes. You repeat this process until her blood sugar stabilizes.
I had to have the monitor, for my own sanity and health. I wasn't sleeping. I now had 3 jobs - my full time job, primary caregiver to my child, and manager of her healthcare/insurance. That took 3 months to get approved. Then we had to schedule training, and she hated it.
Within a year, she was diagnosed with epilepsy. Another year, she had an acute appendicitis, in patient stay for appendectomy. Then the psychiatric problems started, with anxiety, depression, adhd, then IBS, with multiple inpatient cleanses, a colonoscopy, and an endoscopy.
And the call from the school, she's considering self harm. she has a plan. she has to get to an inpatient facility for evaluation.
If you have never had to face the reality that your child wants to end her own life, count yourself very very fortunate. Because it is sincerely one of the most horrific things to endure on this earth, imho.
And, don't get me started on how horribly THAT system is set up. oh. my. god.
Now, 10 years in on this roller coaster, I'm realizing that the American healthcare industry has oh so much more than the deaths of millions through medical neglect to answer for. So much more than the bankruptcy of millions. than the loss of opportunity by families like ours, who can no longer afford family vacations, or to upgrade their homes, or send their kids to college.
They are killing our children.
It is a well understood complication of Type 1 Diabetes that rates of self-harm, depression, and suicide are very high. The field of pediatric endocrinology has made great strides in the last 2 decades in mitigating that tendency, by changing treatment plans, by incorporating psychiatric care from the moment of diagnosis, by teaching parents what not to do when trying to get your child to comply with the constant strain of day to day care. Children learn young that they are worn out. That they just want to be normal. So many convince themselves they aren't really diabetic, and discontinue all of the day to day things they MUST do to stay alive. It's known as burn-out, and it is very very common. Parents are taught to watch for it, and if their endo is good, they are taught how to handle it the right way.
If the endo is bad....but I digress.
So you have a child that is already dealing with this level of stress, day to day, with a disease that is often unpredictable. what worked yesterday may not work today. Puberty hits and all of the normal routines go out the window, because puberty hormones cause wildly unpredictable things to happen to insulin absorption rates and glucose levels. Puberty backs off, and suddenly you have to start over learning all new routines again.
And the constant fight to get the care you need.
Your insulin pump is no longer covered by your policy - you have to change. Your insulin is no longer covered, you have to change. learn a new medical device. New insurance provider, so new durable medical provider. new generation pump, so have to upgrade, but new pump isn't approved for durable medical, so you have to go through pharmacy benefit. insurance benefit doesn't cover through pharmacy, so need to appeal. new medication for ADHD isn't approved for under 16 year old yet, so file for excepton. Need a blood draw to test for celiac, but she's developed a severe phobia of IV's and blood draws, so require special assistance. The driving, the hospital stays, the prior authorizations, the denials of coverage, the surprise billing.
It never. ends.
The US Healthcare industry has so much to answer for. I will never be out of debt. I will never trust a doctor or pharmacy to be able to help me without me having to put hours of work into the process.
And I will never forgive the harm done to my child. Not if I live to be 100. Not if SHE lives to be 100. Because if she does live that long, it won't be because of them; it will be because of me, and because of her...and despite every single thing they could do to try to kill her.







