Kathy M., AL

Our world was turned upside down on April 8, 2024, when my mother, Patricia C. Moore, a fun, feisty and vibrant 73-year-old wife, mother, grandmother and great-grandmother, was diagnosed with lung cancer. She had no noticeable symptoms beyond recurring pneumonia. From that moment, fear, uncertainty and sorrow walked with us daily, but so did faith, love and strength. I became more than her daughter; I was her advocate and primary caregiver, alongside my sister, LeTonya.

Caring for my mother went far beyond managing doctor appointments and medications. It meant ensuring she was never alone. Some days were filled with laughter and creating memories, while others were spent with the harsh reality of watching her body give out, though her spirit never did.

Navigating the medical system was our greatest challenge. The emotional toll was overwhelming. I felt helpless at times, questioning whether we were making the right choices, but I also found strength in being there for her. We faced the expected challenges: doctor visits, preparing for treatments and exhaustion. However, the unexpected ones were the most challenging: insurance denials, overwhelming costs and a lack of additional Medicaid coverage.

As we prepared for her cancer treatments, access to dependable, research-backed information from the National Institutes of Health and the Centers for Disease Control and Prevention was invaluable. Their information empowered us to make informed decisions as we worked with her doctors. Despite my mother’s lifetime of hard work, starting at 19 and retiring at 68, our household was overwhelmed by medical expenses exceeding $300,000, even with insurance coverage. Our insurance provided some assistance, but it was not enough. It covered certain hospital stays and medications but left us drowning in out-of-pocket expenses. This raises a critical question: What happens to those without such support?

Thanks to research funded by the NIH and CDC, we gained a deeper understanding of the potential benefits of radiation treatment and other emerging therapies for her condition. Unfortunately, complications, a stroke, pleural effusion and blood clots prevented her from ever starting treatment. Had she not faced these obstacles, she could have significantly benefited from the treatment options these institutions have helped develop.

On July 3, 2024, my mother was admitted to the hospital once again. We believed, as always, that she would return home. But this time was different. She had double pneumonia, and her lung cancer had progressed to stage 4. That evening, as I walked into her room, prepared to stay with her, she said, "Kathy, you're going to get the pillow and blanket?"—her usual request when I stayed overnight. But the head nurse denied me because I was not a state-approved caregiver. We had been working on a Medicaid waiver since early June. Still, she was ineligible due to homeownership and marriage, despite her and my dad’s Social Security being their only source of income. Had she been approved, she would not have been alone that night. Having Medicaid would have given me peace of mind. It would have allowed me to be with her in her final moments, providing the dignity and comfort she deserved.

I kissed her, told her I loved her and promised to see her tomorrow. Thirty minutes after I arrived home, the hospital called and said she was not responding. By the time we got there, she had suffered two cardiac arrests and was brain-dead. Just 30 minutes earlier, she had been talking to me. On July 5, 2024, after many prayers, our family made the heartbreaking decision to remove her from life support.

Living through this journey has been one of the most challenging things I have ever faced. Still, if I could offer advice to others navigating a similar path, it would be this: Cherish every moment, advocate fiercely and do not be afraid to ask for help. Cancer is more than just a disease; it is a battle that affects every aspect of life, and no one should have to fight it alone. Educate yourself, seek second opinions and utilize every available resource, including research from the NIH and CDC. Most importantly, never stop fighting for your loved one’s dignity and care.

I am sharing my story because my mother’s struggle was not unique; families across the country are facing the same challenges. My goal is to ensure that no one else has to endure the same heartbreak due to financial barriers or lack of access to care. I want lawmakers to understand that cutting Medicaid and reducing funding for NIH and CDC research is not just about a fiscal budget; it impacts real people, real families and real lives.

Losing my mother was devastating, but what is even more heartbreaking is knowing that other families will face similar crises, made worse by financial barriers and inadequate access to care. The proposed cuts to Medicaid and reductions in funding for the CDC and NIH threaten the ability of families like mine to get the care they desperately need. These institutions are lifelines, not luxuries. Their research saves lives. Their funding ensures that patients have access to the most effective treatments available. Their existence means that dignity and comfort are not privileges afforded only to the wealthy.