Health care is a topic everyone seems to be talking about these days, and unless you’ve been living somewhere without internet access, you’ve likely heard the ongoing debates from our elected officials about its future. I have numerous thoughts about how the health care of countless Americans can be decided by a handful of individuals (and yes, their demographic background is important to acknowledge). Instead of diving into that discussion, however, I’d like to recount my experience with my daughter’s time as a Medicaid recipient.
It all began on March 23, 2007, when my daughter, Lily, who was almost two, received a diagnosis of a brain tumor. At that time, my husband and I were both employed—he had been at his job for five years, while I had been with mine for nine. I had recently transitioned to part-time work after Lily was born, feeling fortunate to have flexible hours. Our family enjoyed substantial health benefits from our employers.
However, as the reality of Lily’s medical needs set in, it became clear that I would need to leave my job to care for her. After her initial surgery to remove the tumor, she experienced a relapse just six weeks later. This led to another urgent surgery and the initiation of chemotherapy, which would require frequent hospital stays lasting between three to seven days, twice a month, for an uncertain duration. We had to make some financial adjustments, but we managed.
While many cancers have established treatment protocols, my daughter’s condition, a papillary meningioma, lacked such guidelines. Unfortunately, there hasn’t been enough research on this type of brain cancer; most available information is anecdotal, leaving us in the dark about the path forward. As her doctors indicated, the absence of a definitive plan was both a blessing and a curse. They could try existing treatments with hopes of success, and we joined them in that hope.
Initially, Lily’s treatment showed promising results. Her lung lesions disappeared, and there were no signs of tumor growth in her brain. The relief we felt outweighed the challenges she faced from chemotherapy, which one oncologist friend likened to using a “sledgehammer” to fight the disease. Each treatment cycle involved a five-day hospital stay, followed by a period at home where we battled neutropenia and faced additional hospitalizations for IV antibiotics to prevent infections. Out of the month, two weeks were spent in the hospital, one week recovering, and one precious week of relative health where we could enjoy playful outings to parks or the zoo.
This routine continued for six months, filled with uncertainty as we wondered whether the treatment would still be effective or could become too toxic. Ultimately, the treatment took a toll; Lily’s kidneys began failing under the chemotherapy’s strain. The medical team recommended halting the current protocol to harvest healthy cells, followed by one or possibly two stem cell transplants to combat her cancer.
This series of events occurred before the Affordable Care Act came into play. Despite our gratitude for the insurance we had, we were silently calculating expenses. Each hospital visit echoed with a mental tally of costs, and we were acutely aware of the looming $2 million lifetime cap on our insurance. While we focused on Lily’s recovery, the financial anxiety lingered in the background.
Then, as we prepared for the stem cell transplant, we faced a major setback: our insurance denied the procedure. Fortunately, during this time, living in a state where insurance was mandated for children, we received guidance from the hospital to apply for Medicaid through Illinois’s All Kids program. They assisted us through the application process, and each month, we received documentation that granted Lily access to the treatment her oncologist recommended. It was her Medicaid card that provided the access we desperately needed during her transplant and recovery, as our insurance explicitly excluded coverage for stem cell procedures.
The cost of Lily’s single stem cell transplant exceeded $600,000. We were immensely relieved that Medicaid covered this expense for two main reasons: it meant we wouldn’t lose our home or financial stability, and it kept us safely away from the looming insurance cap. That short period when we relied on Medicaid alleviated the pressure of approaching that cap before Lily even turned three.
I vividly remember when the Affordable Care Act was passed and later upheld. Although it came too late for my daughter, who had passed away before its enactment, I rejoiced for countless other families battling pediatric cancer. I celebrated that these children could no longer be denied coverage due to pre-existing conditions. I was thrilled they could remain on their parents’ insurance until age 26 and wouldn’t face lifetime caps. These measures are crucial for improving quality of life and transcend political affiliations.
While some policymakers advocate for “personal responsibility” and suggest seeking jobs with health benefits instead of relying on Medicaid, the reality is that many Americans face catastrophic illnesses and work in jobs that don’t provide adequate pay or health coverage. My own experience as an upper-middle-class mother showed me that Medicaid was essential for our daughter when our private insurance failed us.
We stand on the brink of reversing progress in health care in America. Medicaid supports vulnerable individuals—parents and grandparents in nursing homes, veterans, children, and those battling mental illness or addiction. You may never have needed Medicaid, but you can’t say you never will; life is unpredictable.
I urge you to reach out to your senators today. Let them know that Lily sent you.
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Summary
This narrative illustrates the profound impact of Medicaid on my daughter’s health care journey during her battle with cancer. It highlights the unpredictability of medical needs and the importance of accessible health care, especially for families facing critical health challenges. The Affordable Care Act brought significant protections for patients, but the fight for comprehensive health care continues.