This is not “the best health care in the world”

(This is my daughter at age 6 weeks old, on a ventilator. Just to give you a visual)

Strap yourselves in, folks, because today I’m talking health care.

I know, this is an author website. But I’m also well aware that any post I write about Julianna and Down syndrome touches some visceral spot in my readership. I accept this without fully understanding it.

So let’s talk health care, because as a disability mom, we’ve got a lot of experience.

Health care is one of the fringe culture war issues. Periodically someone gloats, “America has the best health care in the world! Show me what other country in the world you can get (fill in the blank)! People come here from all over the world! Why would anybody want those evil single payer systems?”

Well, it’s true that American medicine is brimming over with innovation.

But that’s not the same thing as having a great health care system.

A health care SYSTEM is how you ACCESS medical treatment. And our health care SYSTEM is a mess. It has been for decades. Some people want to point fingers at the ACA, but the ACA was an attempt to fix a problem everyone already knew was there.

The trouble with health care as a policy issue–like every other contentious issue–is that until it touches you directly, you just don’t really care. And by “directly,” I mean you, yourself, are the one sitting on hold for hours waiting to argue fruitlessly with insurance flunkies who have no authority; making two phone calls because the bills are so convoluted even the first level billing people can’t tell what you’re actually being billed for; argue with doctors.

Unless you actually walk the path yourself, you just can’t get excited about the health care system. It’s working fine for you, ergo it must be fine for everyone.

So this post is for those of you who are blessed to have had basically healthy lives, as I and all my sisters did.

Here are a handful of examples of what we’ve experienced.

Example #1:
When Julianna was two, Alex four, and Nicholas a newborn, Julianna got sick. I called the doctor for an appointment, was given one at nap time—EVERYONE’s nap time. But what can you do? You take what you get. So I showed up at naptime with three small children in a double stroller. Baby needed Mommy because nursing and naptime. Toddler needed Mommy because sick and naptime. Preschooler needed Mommy because bored and naptime.

We spent two excruciating hours alone in an exam room. More than once, I considered opening the door wide open so everyone in the clinic could suffer through the screaming, wondering if it might speed things up.

At the end of two hours, the doctor came in, barely apologized, looked at Julianna for two minutes, and told me to come back tomorrow.

Photo by Andrea Piacquadio on

By then, she’d been admitted to the hospital. (Here is how that story played out. And here, and here. That’s about 1/4 of the posts about that hospitalization.)

If this were a restaurant, you would never, ever pay for that lack of service. But in our health care system, the doctor will always get paid, no matter how little service is provided. That’s how it works.

Example #2:
In 2021, our insurance was billed $52,000 for Julianna alone. But the amount the plan actually paid was $12,000. Now, that right there should tell you we have a problem in our health care system. Because if it actually costs $12,000, why is it getting billing at $52,000?

Example #3:
You can probably intuit that if our insurance was billed $52,000 in 2021, Julianna had a lot of appointments. In her life, she has seen:
-GI specialist
-orthopedic surgeon
-soon-to-be PT (she dislocated her knee before Christmas)

Right now, five of those are active, and three of them want to see her every three months. One of them wants to see her every two weeks.

Imagine having to pull your kid out of school for that many appointments, even though she is dependent on routine and consistency to be successful in school.

This fall, I finally put my foot down and said, “You guys are going to have to coordinate these visits. I am not pulling her out three different days of school every three months. They need to be on a single day.”

The receptionist looked at me and said, “We don’t do that. That’s not our responsibility.”

Aware of the strain on health care workers in the pandemic, and in gratitude for them, I have been trying to be super nice at all times. But I confess: that day I was not.

Photo by mohamed abdelghaffar on

We have been in the ICU and had doctors have conversations around us and do procedures without telling us what they’re doing. (More than once.)

We had a doctor tell us Julianna HAD to have an MRI and that she had to come back to see him afterward specifically and only to read the MRI, even if it’s all clear. Even though most of our doctors prescribe tests and only call us in if the test indicates a problem.

We were told she almost certainly had celiac disease, and it was destroying the lining of her small intestine, yet we shouldn’t change any dietary things AT ALL until she had an endoscopy—and then took six weeks to go from blood test to specialist appointment and another five weeks to get an endoscopy scheduled, because they only do pediatric anesthesiology one day per month.

Does this really sound to you like the “best health care in the world”?

I don’t think so.

Folks, I am grateful that we have access to incredible innovations that save lives. (Though it would be nice if people would, y’know, take advantage of them. Cough-cough-Covid vaccines-cough-cough.) I am grateful for rock star nurses–you are my heroes! I am grateful for the fabulous doctors who talk to us outside work hours and bend over backwards to make the system work for us when it’s clearly stacked against us. Heroes!

But America… it’s time to be honest with ourselves.

This is NOT the “best health care in the world.”