Health care is a topic that resonates with nearly everyone, especially as political leaders grapple with its future. It’s astonishing to think that the well-being of millions hinges on the decisions made by a select few. While I have many thoughts on the matter, I’d like to share a personal story about my daughter’s time as a Medicaid recipient.
On March 23, 2007, my not-quite-2-year-old daughter, Mia, was diagnosed with a brain tumor. At the time, both my husband and I had stable jobs—he had been with his employer for five years, and I had been at mine for nine. I felt fortunate to have transitioned to part-time work after Mia’s birth, allowing me to balance my career with family life. Our employer-provided health benefits were generous, which made the impending challenges easier to navigate.
However, it soon became clear that my work commitments would have to take a backseat as Mia’s medical needs escalated. After her diagnosis and the initial surgery to remove the tumor, she relapsed just six weeks later, necessitating another urgent brain surgery and a regimen of chemotherapy that required 3–7 day hospital stays twice a month for an indefinite time. We tightened our belts, but we managed.
Many cancers have established treatment protocols, which provide some predictability. For example, a child diagnosed with leukemia typically undergoes treatment for about 3–3.5 years. My friend, who cares for her daughter with a brain tumor, learned that her child would need a new chemo regimen weekly for a year. However, for Mia’s specific type of cancer, papillary meningioma, no clear treatment plan existed. The lack of extensive research meant that we were often left to hope for the best.
Initially, Mia’s treatment showed promising results. Lesions in her lungs disappeared (a consequence of metastasis), and there were no signs of tumor growth in her brain. The relief we felt during those early months was immense, despite the harshness of the chemotherapy regimen, which was described by an oncologist friend as a “sledgehammer.”
Each treatment cycle required a five-day hospital stay, followed by a discharge home, and then a return for IV antibiotics due to the risk of infection. Out of every month, two weeks were spent in the hospital, one week recovering from the chemotherapy, and one precious week where we could enjoy normal activities like going to the park or zoo. This routine continued for six months, but we knew it could change at any moment due to toxicity or a recurrence of the cancer.
Unfortunately, after six months, the treatment took a toll on her kidneys, leading the medical team to recommend a stem cell transplant. This procedure was a significant escalation in her treatment—akin to comparing a marathon to a 5K.
All of this unfolded before the Affordable Care Act came into effect. While we were grateful for our insurance, the mounting costs were daunting. Each hospital visit, each treatment, and even the smallest supplies were adding up, and we were conscious of our daughter reaching her $2 million lifetime insurance cap.
Just as we were preparing for the stem cell transplant, our insurance denied the procedure. Fortunately, we lived in a state where insurance for children was mandated. With guidance from the hospital, we applied for Medicaid through Illinois’s All Kids program. Each month, a small slip of paper arrived that allowed Mia to receive the treatment she desperately needed, acting as a key to her recovery during this critical time. The cost of the stem cell transplant alone exceeded $600,000, and Medicaid’s coverage alleviated the financial strain on our family.
I vividly recall the day the Affordable Care Act was passed and subsequently upheld by the Supreme Court. Although it came too late for Mia, who had passed away before its implementation, I celebrated for the countless families affected by pediatric cancer. The legislation ensured that children like Mia would not be denied coverage due to pre-existing conditions and could remain on their parents’ insurance until age 26. It eliminated the burden of lifetime caps—critical changes for families like ours.
While some political figures advocate for “personal responsibility,” the reality is that many Americans face challenges that are often out of their control. The notion of separating the “deserving” from the “undeserving” does not reflect the truth of those grappling with catastrophic illness or inadequate wages. My family, despite our middle-class status, found ourselves in need of Medicaid when our for-profit insurance failed us.
As we stand on the brink of potential regression in health care access in America, it’s crucial to remember that Medicaid serves many vulnerable individuals—children, the elderly, veterans, and those facing mental health challenges. You may not have utilized Medicaid yourself, but life is unpredictable, and circumstances can change.
I urge you to reach out to your senators and advocate for health care policies that support all Americans. Your voice matters.
For more resources on pregnancy and home insemination, check out this excellent article on WebMD. And if you’re considering family planning options, you might find our guide on at-home insemination kits helpful.
In conclusion, my daughter’s journey through Medicaid was a challenging yet enlightening experience that underscored the importance of accessible health care for all families.