When it comes to health care in America, it’s hard to escape the constant discussions swirling around us. Unless you’ve been living under a rock, you’ve likely heard the debates as politicians decide the future of health care for millions of Americans. I have plenty of opinions about how such a crucial matter can be dictated by a select few individuals (and yes, the demographics of those individuals matter), but for now, I want to share my personal experience with my daughter’s Medicaid coverage.
Let’s rewind to March 23, 2007. My daughter, Lily, just shy of her second birthday, was diagnosed with a brain tumor. At that time, both my husband and I were employed — he had been at his job for five years, while I had dedicated nine years to mine. After Lily’s birth, I was excited to switch to part-time work, feeling fortunate to have good employer-provided benefits.
However, when it became evident that Lily would need extensive care, I had to leave my job. Following her initial surgery to remove the tumor, she relapsed just six weeks later, leading to another surgery and a regimen of chemotherapy that required hospital stays every two weeks, lasting 3 to 7 days each time. Although we tightened our budget, we managed to cope.
Treatment protocols exist for many cancers, providing a semblance of predictability. For example, boys diagnosed with leukemia often have a clear treatment timeline of 3 to 3.5 years. A close friend of mine, whose daughter also faced a brain tumor, learned her child would need weekly chemotherapy for an entire year. However, for Lily’s diagnosis of papillary meningioma, no such established protocol existed. The lack of research meant that while there was no set plan, doctors could experiment with hope.
Initially, Lily responded remarkably well to treatment; lesions in her lungs disappeared, and her brain showed no signs of regrowth. We felt immense joy as she endured the difficult side effects of a chemotherapy regimen that one oncologist friend likened to wielding a “sledgehammer.” Each treatment cycle required a five-day hospital stay, followed by a month of recovery that included subsequent hospital visits for IV antibiotics due to the risk of infection. Out of each month, we spent two weeks in the hospital, one week recovering at home, and one precious week enjoying typical toddler activities like visiting parks and zoos.
We navigated this uncertain journey for six months, never knowing if the treatment would stop working or become too toxic. Eventually, it did. Lily’s kidneys began to fail under the strain of chemotherapy. The medical team recommended halting the current protocol, harvesting healthy cells, and preparing for a stem cell transplant — a daunting endeavor.
This all occurred before the Affordable Care Act was enacted. Even though we were grateful for our insurance, we couldn’t help but keep a mental tally of the mounting costs. Each hospital stay felt like a financial ticking time bomb, inching us closer to our $2 million lifetime cap.
In December 2007, just as we were gearing up for Lily’s stem cell transplant, our insurance denied coverage. Thankfully, we lived in a state where children were guaranteed insurance. The hospital staff guided us through the Medicaid application process for Lily under Illinois’s All Kids program. Each month, a small piece of paper arrived in the mail, allowing us to access the treatment she desperately needed. This Medicaid coverage became crucial during her transplant and recovery, as our insurance had made it clear that anything related to the transplant would not be covered.
The cost of Lily’s stem cell transplant exceeded $600,000. We were immensely relieved that Medicaid picked up the tab, sparing us from financial ruin and keeping us under the lifetime cap. This brief period when Lily was on Medicaid alleviated our worries about maxing out her insurance before she turned three.
I vividly recall when the Affordable Care Act passed and the Supreme Court upheld it. Although Lily had passed before its implementation, I rejoiced for countless families battling pediatric cancer. I celebrated the fact that children who survived would no longer be denied coverage due to pre-existing conditions. They could remain on their parents’ insurance until age 26, and the burden of lifetime caps would be lifted. These changes are vital for ensuring quality of life, transcending political affiliations.
While some may advocate for “personal responsibility” or suggest people seek jobs with benefits, the reality is far more complex. Many Americans face catastrophic illnesses, work jobs without health benefits, or encounter hardships that are often beyond their control. Even as a fortunate, upper-middle-class family, we found ourselves relying on Medicaid when our for-profit insurance failed us.
As we teeter on the brink of regressing in health care access, it’s crucial to recognize the importance of Medicaid. It supports vulnerable populations including parents, veterans, and children. You might never have used Medicaid yourself, but anyone can find themselves in need.
Reach out to your senators today. Let them know that every voice matters, and every child’s life is worth fighting for.
For those interested in more information on home insemination, check out our post on how to use a home insemination kit. Additionally, for a deeper dive into the journey of conceiving after a year of trying, visit this excellent resource on the subject. And if you’re exploring options for intrauterine insemination, the NHS offers comprehensive insights.
In conclusion, my family’s experience with Medicaid during a critical time in our lives highlights the importance of accessible health care for all. It serves as a reminder of the unpredictable nature of life and the value of standing up for health care rights for everyone.