The Insurance Battle

How to Fight for Your Kid's Health

Maybe you know the feeling: you’re sick with worry about your child’s illness. Then a medical professional offers hope: a new medication, a treatment program, a specialist. Your spirits lift like a helium balloon! Your child will be okay. 

Then you get the cold, hard news. 

Your insurance refused to pay for the solution that could help your child heal.

If you’ve ever ridden the insurance rollercoaster, you might have experienced a multitude of feelings: frustration, hopelessness, grief, and resignation. Hopefully, your child got the treatment they needed. Regardless of the outcome, you aren’t alone in navigating insurance battles. 

Photo by 2Photo Pots on Unsplash

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Our Family’s Latest Battle

My daughter has been sick for more than a year with several complex health conditions.

This summer, she was diagnosed with yet another condition that makes it hard for her to eat. This is especially dangerous for a kid with a history of eating disorders.

There is one medication that can significantly ease her symptoms, but our insurance company has refused to pay for it.

Instead, they insisted she try several other (cheaper) medications, against her doctor’s advice. Her doctor knew that those medications would make Ellie feel worse, because of how the side effects interact with her other health conditions. 

So we’ve spent the past three months in a battle while Ellie lost too much weight, her condition worsened, and her shelves filled with prescription medications that don’t work for her. My husband and I wrestled with buying the needed medication out of pocket from another country, where it’s moderately cheaper. Our doctor continued to advocate for our daughter to the insurance company, who continued to send us rejection letters.

Maybe you’ve been there.

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The Challenge for Families

This is the dilemma of navigating insurance in America, especially for teens with health challenges. Our relationship with our insurance company plays a significant part in our decisions about what kind of treatment we choose for our child. 

Sometimes we hit the insurance jackpot. It’s easy to locate skilled providers within the plan. In the best scenario, our insurance agrees to cover every medication, doctor appointment, and even higher levels of care. Our kid’s needs are so expensive that we hit our deductible (or the out-of-pocket max), which means everything is covered. It’s almost like we’ve won a trip to Disney World!

But many of us hit roadblocks. We may have only been able to afford subpar insurance. Maybe we struggled to find a skilled therapist or specialist within our insurance’s limited network. Maybe our insurance rejected the one medication that means the difference between deep suffering and basic functioning. Somehow, administrators who have never met our kids nor understand the complexity of their medical history have the power to override the doctor’s opinion and refuse to cover a life-changing treatment. 

Then we are stuck between a rock and a hard place. How do we get the care our kids need? Do we sacrifice their college fund or our retirement nest egg to enroll them in a treatment program? If we don’t have any savings, do we take on extra jobs or borrow from family members to find a way forward for our kid? Or do we accept the limitations of the treatment we can afford and hope it’s good enough?

These are the questions our family has faced. They’ve felt especially challenging in our daughter’s sickest moments. 

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Fighting for Eating Disorder Treatment 

Three years ago, Ellie’s eating disorder was out of control. Despite her participation in an Intensive Outpatient Program, Ellie was purging eight times a day and refused to eat solid food. So her therapist insisted that she needed a higher level of care and suggested residential treatment.

About ten days into “Res,” our insurance pushed back hard. Ellie wasn’t dangerously underweight, and the strict boundaries of the treatment center had forced her to stop acting out with her eating disorder. They wanted to discharge her immediately.

The treatment team and I knew Ellie needed more time to heal after being deeply entrenched in her eating disorder. We were thankful for her progress made possible by the strict boundaries and supportive environment of “Res.” But she was at the beginning of her recovery journey. Ironically, Ellie’s willingness to cooperate worked against her in the insurance company’s eyes. 

My husband and I, with the support of our families, Ellie’s treatment team and our praying friends, fought back successfully. Ultimately, Ellie stayed two more weeks (which we negotiated, week by week). 

To this day, Ellie says this about treatment: “I hated Res. But I needed Res. I should have been there even longer, but insurance cut me off. If I could have stayed longer, it would have helped.”

Sadly, many families lose their battles with insurance around eating disorder treatment. Ellie told us many stories of teens who left treatment suddenly because insurance pulled their approval with just a few hours’ notice. Some of my friends’ teens never started a partial or full hospitalization program, because insurance denied coverage. Still others never enter the doors of a therapist’s office because of the limitations of insurance coverage. 

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Tools to Use

No matter what our teen’s health condition is, they deserve the treatment that will give them life. As parents, we need tools to help them get it. Here’s a few key principles in navigating these choppy waters.

Start with Self-Care

Even though insurance battles are incredibly stressful and often lead to feelings of hopelessness, we have more power than we realize. We can start by taking a deep breath, asking for a hug, and considering our options. Often, our best first step is to take care of ourselves to get centered. Nothing productive happens when a parent screams on the phone to an insurance administrator. Our family begins a stressful insurance negotiation with prayer, both to calm ourselves down and to remember that God is in charge. We invite our friends to pray as well.

Build a Team of Advocates

In negotiating for Ellie’s needs, it helped to remember that we weren’t alone. We consulted Ellie’s doctors to understand our options and to ask them how they would advocate for our daughter. Many therapists and doctors play hardball with insurance every week (especially those who work in treatment centers). Talking with Ellie’s doctors, who were unperturbed by the negotiation, gave me confidence that we would find a solution.

Our family won two more weeks of residential treatment by partnering with many skilled advocates. My husband and I begged the treatment team to help us make a case. They spent an hour drafting a convincing proposal of why Ellie needed more time, which bought us another week. When we had to fight for a fourth week. I worked with Ellie’s psychiatrist to identify more options. With my parents’ financial support, we said that we as parents believed Ellie needed treatment enough that we would pay for it out-of-pocket if necessary. This enabled our doctor to do a doc-to-doc procedure, in which she advocated directly to the insurance company’s doctor to make her case. This bought us a fourth week of insurance coverage. 

Know Our Options

In every insurance battle, we have choices. I’ve tried to pause long enough to read the paperwork to learn why our claims were denied and how we could prove medical necessity. We learned how we could use our voices as parents to press the insurance company. Often, my husband Peter contacted the insurance company to talk directly about our daughter’s case. 

Some families enter a formal internal appeals process with the insurance company, which requires supporting documentation and letters from doctors. It’s an extended process that requires patience. But it can be effective. If the internal appeals process is rejected, a parent can request an external review. 

Finding other parents who have navigated similar situations has also given us ideas. I’ve found camaraderie and wisdom by connecting with folks in our community or in private Facebook groups. Talking with friends who are doctors or lawyers has also offered a helpful perspective. 

Access Helpful Resources

If you are fighting an insurance battle for a teen with an eating disorder, several organizations offer valuable resources. Project Heal is a national nonprofit focused on providing equitable treatment for eating disorders. Their insurance hub offers incredible help for navigating insurance issues. They also offer other resources, such as one-time cash grants and meal support. 

The National Eating Disorders Association (NEDA) offers letter samples to help you communicate effectively with insurance companies, based on real-life situations that other parents have faced. They counsel parents to be polite and professional, while outlining the critical nature of your child’s situation. 

For general challenges with insurance, the Patient Advocate Foundation tries to eliminate obstacles in healthcare by providing case management help, financial aid funds, and co-pay relief. They have a series of articles about appealing an insurance denial.  

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Hope for the Future

This past week, while leading a training session at a conference a few states away, I found my phone buzzing with the most enthusiastic text my husband has ever sent. Amid many exclamation points, I could hear him whooping for joy.

“Insurance finally approved Ellie’s medication!”

I excused myself from the session, asking my co-leader to take over. Outside the bathrooms, I sat on a bench and wept. Waves of both gratitude and hope, along with weariness and relief, hit me at once. 

Peter, Ellie and I jumped on a three-way call to celebrate together. Later, Ellie sent us a selfie, with the new medication in her uplifted hand like a trophy. Together, we had helped our daughter win an insurance battle. And we all had the scars to prove it.

Ellie’s journey may continue to be long and bumpy, but at least now she has what she needs to move forward. That’s my hope for every family: that we can all access the healing resources our kids need to find their way to flourishing.

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I’d love to hear your stories. How have you navigated insurance challenges? What have you learned? How have patience, persistence, and prayer helped you along the way?

Grateful for your companionship on the journey,

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