Posts by Kathy Missel
In 2023, my life changed with the words no one is ever prepared to hear: “You have cancer.” I was diagnosed with multiple myeloma, a rare cancer of the plasma cells. Soon after, my doctor prescribed Revlimid, a medication that is essential to my treatment. When the pharmacy called, they told me my copay would be $3,000 a month. My immediate response was simple and heartbreaking: “Don’t fill it.”
I later learned that without insurance the medication would cost more than $250,000 a year—for a drug that costs only pennies to manufacture. Thankfully, I was able to secure a copay grant, but the experience opened my eyes to a painful truth: many patients never receive that lifeline. Too often, access to life-saving medicine depends not on need, but on cost.
My diagnosis also revealed another challenge in our healthcare system—access to quality care in rural communities. I live in a rural area and was diagnosed in my local emergency room. After reviewing my MRI, the doctor briefly told me I had cancer and that I had an appointment with an oncologist the following week before leaving the room. In that moment, I felt scared, overwhelmed, and alone. I ultimately chose to travel nearly two hours each way to receive the care and support I needed.
These experiences transformed me from a patient into an advocate. Through my work with Patients Rising, I speak out about the urgent need for affordable medications, stronger patient protections, and better access to care—no matter where someone lives.
Every patient’s story is different, but together our voices matter. Advocacy matters because real people are living these realities every day. I believe citizens must be part of the conversation about healthcare reform—because the people most affected by the system should help shape its future.
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