I Paid $3,000 So My Son Could Hear and Aetna Said It Didn’t Count It
What my son’s story reveals about a system that counts costs—but not patients
I have spent more than a decade listening to patients and families share stories about our health care system. Stories of delay. Denial. Frustration. Financial strain.
But it is different when it is your own child.
My 12-year-old son has lost 75 percent of the hearing in his left ear because of a cholesteatoma. He has already been through three surgeries. At one point, his doctor told us it was one of the peskiest cases he had ever seen.
After the most recent surgery failed to repair the damage, the path forward was clear. My son needed a hearing aid. Without it, he would continue to struggle to hear clearly in school, in conversations, on the baseball field, and in everyday life.
So we did what any parent would do. We got him a hearing aid. Seems like a simple process. A kid needs a hearing aide, insurance should cover something, right?
Wrong.
First, we waited several weeks for the insurance company to even tell the audiologist it was not covered. I was not surprised.
Second, we had a consult and got the sticker shock. It cost $5000-$7000 thousand for a set of hearing aides. The silver lining was he only needed one hearing aide so, after finding the right one for our son we were on the hook for one hearing aide at the rock bottom price of $3000.
Even though my husband and his employer pay more than twenty-five thousand dollars a year in premiums. Not one dollar was covered by our insurance company, Aetna.
And here is the part that still gets me: not one single dollar of that three thousand dollars counted towards our annual deductible. It did not count toward our eighteen-thousand-dollar out-of-pocket maximum.
According to Aetna, that $3000 was not a healthcare expense at all.
Tell that to my son whose face lit up when he started really hearing out of that ear for the first time. Those of us who have full hearing do not realize the amount of work our ears do together. I cried watching him.
We were fortunate. We have a Health Savings Account. We have been disciplined about setting aside a little money each month into the account. That HSA is the only reason we were able to afford the hearing aid without going into debt.
Without it, this would have been a very different story.
And that is the part I cannot stop thinking about.
Because in our case, the care my son needed was real. It was prescribed. It was necessary. And yet, in the eyes of our insurance, it was as if it did not exist at all. My son’s hearing simply did not matter to Aetna.
Moments like this are a hard reminder of something I say often: if you are not acting as the CEO of your own health care (or your family’s), no one else is going to step in and do it for you.
So what happens when you do not have a fallback?
What happens if that $3,000 hearing aid goes on a credit card at 29.99% interest?
That is the reality for a lot of families. And in that moment, neither the credit card company nor the insurance company is asking whether the expense was necessary. They are not asking whether a doctor prescribed it. They are certainly not asking what it means for your child’s future.
At Patients Rising, we have been digging into this through our Medical Bankruptcy in America series. And the more I look at these cases, the more convinced I am that a significant portion of what shows up as “credit card debt” started exactly like this—healthcare expenses that insurers decided, often arbitrarily, did not count as healthcare at all.
You can spend thousands on care your doctor says is necessary. But if the insurance company decides it is not covered, it does not move you any closer to your deductible. You are on your own.
And this is exactly why so many Americans are frustrated, exhausted, and done with the system as it exists today.
Recently, a national survey put numbers behind what so many of us already feel.
In February 2026, Public Opinion Strategies released the “Fund the Patient” survey of one thousand registered voters. The results were not surprising to anyone who has lived through a moment like ours.
Eighty percent of voters say the health care system is either in crisis or has major problems. Nearly half say it is failing their own families. Three-quarters believe it is failing most Americans.
And when people think about their biggest financial pressures, health care is right there at the top. Premiums. Deductibles. Prescription drugs. Fifty-nine percent of voters say these costs are among their top concerns when trying to make ends meet.
When asked who is responsible, voters were clear. Insurance companies rose to the top across the board. The frustration is not partisan. It is shared.
But what stood out most to me was not just the frustration. It was the clarity around what people actually want instead.
The message is simple: Fund patients, not the system.
Eighty-four percent of voters responded positively to that idea. And when you think about it, it makes perfect sense.
Because what people are really asking for is control.
Eighty-three percent said this approach is about giving individuals more choice in their health care. Eighty-one percent believe that when funding goes directly to patients—so they can choose their doctors, their treatments, and their coverage—the quality of care improves.
Only a small fraction saw it as expanding government control.
That is not what people are asking for.
They are asking for a system that actually works when their child needs to hear.
The same survey showed overwhelming support for expanding Health Savings Accounts. Nearly four in five voters view them as a good option, and more than eighty percent want broader access.
That is not theoretical to me. That is real.
Our HSA was there when our insurance was not.
At Patients Rising, we have always believed that change starts with patients. Not as a talking point, but as a reality. Patients and caregivers who understand the system, who speak up, and who turn their experiences into action.
This survey confirms what we are hearing every day. The country is ready for something different. People are tired of a system that feels designed for everyone except the person who actually needs care.
If you are reading this and thinking, “That happened to me too,” I want to hear your story.
Have you paid out of pocket for something your doctor said was necessary, only to be told it did not count? Have you fought with an insurance company over care your family needed?
Share it. Talk about it. Because the more we bring these stories into the open, the harder they are to ignore.
And if you are at a point where you want to do more than share and you want to turn that frustration into something constructive check out the organization I co-founded, Patients Rising. We are building a community of patient advocates where patients and caregivers learn how to speak up, engage, and turn that frustration into something that matters.
It is time to start funding patients over systems, but just as importantly, it is time to start listening to patients. The systems we have today are built and run by layers of bureaucracy, and too often the patient’s reality is the last thing to be heard, if it is heard at all. Real people. Real families. Real consequences. That has to change. Because when patient voices are ignored, the system drifts further away from the people it is supposed to serve. Let’s start making sure those voices are not just included, but impossible to ignore.
Disclosure: I serve as an advisor to the Fund the Patient.