I sat on the bathroom floor as my husband lifted our 4-year-old’s limp body from my arms, carrying him into the living room. We worked in tandem, a terrible dance we had memorized to a song on repeat: one cleaning the blood from his face and neck, softly gripping his small fingers, the other holding towels to pinch his nose while simultaneously catching the blood that flowed from his eyes, which were shaking and rolling toward the back of his head.
Just as the sun-kissed hue started to drain from his face, his skin turning a dull pale, the bleeding stopped. We had made it through another episode.
I felt each hot, sticky tear roll down my face as I looked up at my husband holding our other child, the youngest, in his arms. We locked eyes and collapsed into each other, holding between us our children, the most important, the most vulnerable people in our lives, the ones we would die for.
Five years later, we still rely on dedicated specialists at Arizona’s only fully pediatric-focused hospital, Phoenix Children’s Hospital, to help our son who was diagnosed with a brain malformation and cyst at the base of his brain.
On Oct. 30, along with thousands of other families, we received notification that the children’s hospital system was no longer in-network with our insurance provider, Blue Cross Blue Shield (BCBS).
BCBS insures a third of the U.S. population, and over a quarter in Arizona, so their decision to no longer provide coverage for Phoenix Children’s Hospital (PCH) – one of the nation’s best children’s hospitals – will severely affect access to essential health care services for thousands of children and their families.
Blue Cross denies $21 million in claims
America’s health care system, once designed to help patients, has failed us. BCBS denied more than 10% of PCH’s claims last year, the hospital said, resulting in an annual reduction of more than $21 million.
Frequently, the denials were arbitrary and involved medically necessary services, according to PCH.
In general, the most common reasons for denials are lack of medical necessity, an out-of-network provider and administrative errors. That leaves not only patients covering costs themselves but also deeper questions about how much insurance companies should be able to intervene in patient care.
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The medical insurance market is estimated at $1.5 trillion, with salaries for CEOs at top companies averaging more than $19 million.
Despite high profits and increasing denials, insurance companies continue to raise premiums and out-of-pocket costs, placing a heavier financial burden on individuals and families.
Last year, they spent nearly $160 million on lobbying efforts to influence health care policies in their favor, giving a new meaning to blood money. BCBS was the top contributor at more than $20 million.
Insurance is not the only issue. Navigating a complex health care system and access to health care and specialists are growing concerns.
We travel more than two hours to Phoenix Children’s Hospital, often waiting more than six months for appointments. We have become self-taught experts in insurance – understanding explanation of benefits (EOBs), denials, codes and pre-authorizations. We amassed backgrounds in medical terminology and symptoms. We negotiate with schedulers for earlier appointments, challenge doctors who say there is nothing more they can do and advocate for the treatment of the person, not just their symptoms.
Now is the time to reform health care
We are a family of four, the boys are 9 and 6 now, and my husband and I are well-educated, college graduates, working in the medical industry, both insured by BCBS. So there is no secondary or coinsurance option for us to use to solve this problem.
Even with our backgrounds, we struggle to navigate the complexities, and my heart breaks for those who don’t have the ability or knowledge to challenge the system, leaving them more vulnerable and lost.
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The closest in-network children’s hospital to us now is in San Diego, more than a seven-hour commute one way. With that distance comes increased costs for travel, hotels and meals.
Then there is the missed work, unpaid days off and the overarching impact to our mental health and family.
We will gather all our son’s health records across a disparate system and repeat tests with new doctors while we again navigate the complexities of a new hospital. We will have to explain to our child his unfair fate and why we had to leave a hospital he knew, with no promise it won’t happen again.
Meanwhile, the question going through our minds remains the same: How will we continue to get medical care for our children?
With key advancements in technology and the recent election, there is no better time for our country to make health care reform a top priority. While we could literally start anywhere, here are some key things I think we should do: Hold insurance companies accountable, ensure transparent coverage and require fair pricing.
Other ideas include adding more advanced technologies for hospitals and providers to improve diagnostics and treatment; increasing operating efficiencies; and raising standards of care. By addressing just some of these areas we can create more efficient, equitable and patient-focused health care.
In this broken system, our son is just a number, a debit on a profit and loss statement, the red that deducts from their margins.
To us, he is everything, doing his best with the cards he was dealt. He’s a kid that still hugs and kisses his mother good night, while being forced to grow up too fast in a system where the odds are already against him.
No one asks or plans for this, yet many families are here, at the mercy of an ever-failing health care system. But we take what we can get, because is there anything we would not do for our children? We must do better ‒ for our country, our children and our future.
Kelsey Denham lives in Arizona with her two sons and husband. She has worked in health care and life sciences for 10 years and is passionate about innovation and transformation in the health care and medical industry.
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