I found myself sitting on the bathroom floor as my husband gently lifted our 4-year-old son’s limp body from my arms, carrying him to the living room. We worked together in a painful routine we had come to know well: one of us cleaned the blood from his face and neck while softly holding his tiny fingers, while the other pressed towels to his nose to stop the bleeding that was seeping from his eyes, which were wildly rolling back in his head.

Just as the color was fading from his face, leaving it a ghostly pale, the bleeding subsided. We had survived another crisis.

Hot, wet tears streamed down my cheeks as I glanced at my husband, who was holding our youngest child. Our eyes met, and we collapsed into one another, cradling both children—the most precious and defenseless individuals in our lives, the ones we would do anything to protect.

Five years later, we continue to depend on the dedicated specialists at Phoenix Children’s Hospital in Arizona, the only fully pediatric-focused hospital in the state, to assist our son, who was diagnosed with a brain malformation and a cyst at the base of his brain.

On October 30, along with countless other families, we learned that Blue Cross Blue Shield (BCBS), our insurance provider, was no longer covering expenses for the children’s hospital.

BCBS covers a third of the U.S. population, and over 25% in Arizona, meaning their decision to drop coverage for Phoenix Children’s Hospital—ranked among the best in the country—will greatly limit access to vital health care for many children and their families.

Blue Cross denies $21 million in claims

The U.S. health care system, initially created to assist patients, has let us down. According to Phoenix Children’s Hospital, BCBS rejected over 10% of claims last year, leading to a loss of more than $21 million for the hospital.

Many of these denials were considered unjustified and pertained to medically necessary procedures. Phoenix Children’s Hospital reported that the most frequent reasons for denials include claims of lack of medical necessity, the use of out-of-network providers, and administrative mistakes. This situation not only forces patients to pay out-of-pocket but also raises critical questions regarding the extent of insurance companies’ influence over patient care.

The U.S. medical insurance market is valued at around $1.5 trillion, with CEO salaries at leading companies averaging over $19 million.

Despite their significant profits and an increase in denials, insurance companies persist in raising premiums and out-of-pocket expenses, escalating the financial strain on families.

Last year, they allocated nearly $160 million to lobbying efforts aimed at swaying health care policies in their favor, giving a troubling connotation to “blood money.” BCBS alone contributed over $20 million to these efforts.

Insurance isn’t the solely critical issue. The complexity of the health care system and access to specialists has become troubling challenges.

We often drive more than two hours to reach Phoenix Children’s Hospital, frequently enduring waits of over six months for appointments. We’ve had to educate ourselves about insurance—deciphering explanations of benefits (EOBs), understanding denials, grasping medical codes, and managing pre-authorizations. We have accumulated knowledge in medical terminology and the symptoms associated with our son’s condition. We confront schedulers for earlier appointments, contest doctors’ suggestions of reaching a dead end in treatment, and advocate for our son’s treatment to focus on more than just his symptoms.

Now is the time to reform health care

As a family of four, with boys who are now 9 and 6, my husband and I, both educated professionals in the medical field and insured by BCBS, find ourselves without any additional insurance options to help resolve these issues.

Even with our educational backgrounds, we face challenges in navigating the intricacies of the health care system, and my heart aches for those who lack the same resources.

The capability or insight to contest the system often leaves individuals feeling more exposed and disoriented.

Currently, the nearest in-network children’s hospital is in San Diego, which involves over a seven-hour journey each way. This distance brings about higher expenses for travel, accommodation, and meals.

We also face unpaid leave from work, missed job opportunities, and the significant toll it takes on our mental well-being and family dynamics.

We will compile our son’s medical history from a fragmented system and undergo redundant tests with new specialists as we navigate the intricacies of an unfamiliar hospital. We will have to explain to our child why he must leave a hospital he was comfortable with, with no assurance that we won’t face similar challenges again.

As we ponder this situation, the central question remains: How will we manage to secure medical care for our children?

In light of significant technological advancements and the results of the recent election, there has never been a more opportune moment for our nation to prioritize health care reform. There are numerous potential starting points, but here are a few crucial steps I propose: Make insurance companies accountable, guarantee transparent coverage, and demand fair pricing.

We should also consider implementing advanced technologies in hospitals and by health providers to enhance diagnostics and treatments; improve operational efficiencies; and elevate care standards. By focusing on these areas, we could foster a more effective, fair, and patient-centered health care system.

In this flawed system, our son is merely seen as a statistic, a liability on a balance sheet that impacts their profits.

To us, he is everything, bravely facing the challenges before him. He’s a child who still shows affection with hugs and goodnight kisses, even as he is forced to mature too quickly in a system designed against his favor.

No one anticipates or plans for this situation, yet many families find themselves at the mercy of a deteriorating health care system. However, we accept whatever assistance we receive because there is nothing we wouldn’t do for our children. We must strive for better outcomes—for our nation, our children, and the future ahead.