Mackenzie – Pennsylvania-CMA

Mackenzie – Pennsylvania-CMA

When Mackenzie wouldn’t stop screaming when breastfed, we tried everything. Different formulas, different approaches. No one knew what was wrong.

As it turned out, she was allergic to a small amount of milk protein. After 8 weeks of daily calls to my insurance, and exhausting all levels of insurance appeals Mackenzie was finally drinking the right formula. Her demeanor changed immediately.

I was holding a happy child in my arms for the first time. We could take her outside. We played together. We laughed together. Her happiness was contagious.

But then our insurance company switched. We went for a refill, but were denied. This started a seven-week process where I spoke with 18 durable medical equipment companies; I spent two days calling companies.

The information I received was inconsistent, however. Some people said it would be covered, even after I called back several times to double check. Then, they ended up denying the service because it was not deemed “medically necessary.” People laughed at me. Insurance companies laughed at me, at my daughter, and our plight.

We then went through the process for an appeal trial. But we were denied. Now we’re going to external appeal. I feel as though I’m on a hamster wheel. Just when I think I have the knowledge I need to bring about change, my information is “lost,” and I’m forced to resend the letter of medical necessity and prescription.

No one will cover children’s food, if it’s not life or death. But there is nothing else for her to try. Nothing else out there. No alternatives. Changing formula risks hospitalization. A GHI bleed out. Her health is jeopardized with any changes.

We simply don’t qualify for insurance. And pre-existing conditions mean we pay $450 every two weeks. But she needs it. She’s not in severe pain anymore. She’s no longer crying.

All because of a formula change. One little change that changed my daughter’s life.

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