Profound Gratitude for the Excellent Care with Deep Concerns about Affordability
Carol
State: Colorado
Congressional District:
Diseases
Blood Disease, Cancer
Issues and Challenges
Carol has encountered: Medicare / Medicaid Issues
My Story
Hello, my name is Carol, and I was diagnosed with multiple myeloma, cancer of the bone marrow plasma cells, in 2018. My story is one of profound gratitude for the excellent care I have received and deep concerns about the affordability of the treatment I need.
I was healthy, active, and fit before my diagnosis. In 2017 my running pace suddenly plummeted, and I started to tire easily on hikes. At my annual exam at the end of the year I told my primary care provider, “Everything is hard now. It’s like someone flipped a switch, and I find myself wondering, ‘Whose body is this?’”
My primary care provider could have easily brushed off my vague complaints. But she didn’t. She asked questions and took the time to listen, and she determined that I was describing an acute change. She wrote, “Patient is reporting fatigue” in her notes, and she ordered bloodwork. She investigated, following the trail of my only symptom, fatigue, and quickly referred me to a hematologist when my bloodwork showed abnormalities.
A C-T scan revealed innumerable lesions, tiny holes, throughout my bones. A bone marrow biopsy showed 50% of the cells in my bone marrow were cancerous—myeloma cells. Devastating news, and it was hard to accept or even understand the damage that was taking place in my body.
But in hindsight, this is where my gratitude kicks in. I began treatment immediately. I had access to the very best care and a team of myeloma specialists who helped me manage everything from side effects to arranging time off from work.
I received the standard treatment at the time: a three-drug combination including a steroid; twice-weekly injections of a myeloma drug; the oral medication commonly used for myeloma (Revlimid), and a stem cell transplant.
One day shortly after I started treatment, I logged into my insurance account, and I was shocked when I saw the claims for my three Revlimid prescriptions. Each 14-day supply of the medication cost $9,700. That’s $692 for each pill I took.
My treatment plan after the transplant would include long-term maintenance therapy, using Revlimid to keep me in remission, for years possibly. The cost that lay before me was staggering. Nights I was awake with side effects I would worry. We had good insurance, but with my health in such a fragile state how could I hold on to a job and insurance coverage? Were we headed for financial catastrophe?
The cost of the Revlimid to sustain me had a price that simply wasn’t sustainable. We call it financial toxicity when the cost of treatment deeply affects patients and their families. Lives are upended. Patients suffer financially, emotionally, and physically.
I worked hard to regain my strength, so I could return to work and hold on to my insurance. It wasn’t easy. After the initial treatment and the stem cell transplant, I was weak, easily fatigued, and suffering side effects. I began maintenance treatment with Revlimid on a monthly 21-day regimen that carried a $15,000 price tag.
Most days I went to work with the heavy feeling that I was incurring a debt I could never repay. Over the seven years that I have been in remission the price of Revlimid has continued to increase. When the generic Lenalidomide became available in 2022 I was elated. Finally, the price of my medication would be reasonable. But the cost of Lenalidomide has remained equal to the price of Revlimid. It was essential for me to hold on to good health insurance until I was eligible for Medicare in 2024.
Now that I’m on Medicare my concern about the cost of Revlimid continues as I see each monthly $19,000 claim for 21 pills. That’s $904 for each pill.
The 2025 Medicare cap limiting prescription drug costs for patients to $2,000 annually has been a tremendous relief to me and to so many myeloma patients. Finally, there is a safety net for us.
But that doesn’t address the burden of the cost to Medicare. Over the years Revlimid has landed on the list of the top ten most expensive prescription drugs for Medicare. In 2022 Medicare paid $5.9 billion in Revlimid claims, far more than it paid for drugs that are more commonly used by vastly more people on Medicare.
Revlimid does not qualify under current guidelines for Medicare price negotiations because there is a generic available, but the generic isn’t offering price competition. Surely there must be a solution for such uncontrolled pricing. Patients need this vital, life-saving medication. But the cost is taking a heavy toll on patients and on Medicare.
My Motivation and Inspiration
I have been blessed with access to excellent treatment and support from an amazing team of specialists. I am motivated to do all I can support other myeloma patients.
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