Losing My Father to Delay: A Son’s Call to Reform Step Therapy for Multiple Myeloma
Bill
State: North Carolina
Congressional District:
Diseases
Blood Disease
Issues and Challenges
Bill has encountered: Step-Therapy / Fail First
My Story
Hello, my name is Bill Kelly, and I was diagnosed with an early stage of Multiple Myeloma in December of 2020. Myeloma is a blood cancer that compromises your immune system and attacks your bones.
I am here to advocate for modifications to Step Therapy, not based on my own journey but based on my father’s death from Myeloma on October 20th, 2024. The ‘slow down & wait’ approach of Step Therapy resulted in his cancer growing undetected for more than 7 months, during which his body was ravaged to such an extent that it could not respond in time to proven therapy. Per the International Myeloma Foundation, early diagnosis is associated with better outcomes and longer lives, as there are dozens of new treatments to delay progression or damage.
Seven months before he passed, I was picking vegetables from a farm where he worked part-time, went to the gym with him, and then went fishing… All of which were pretty much regular, daily activities for my active dad. He had just seen his general practitioner about persistent pain in his lower left hip when the GP prescribed pain relievers and physical therapy.
Four months remaining. My dad had endured increasingly painful, weekly PT sessions. Despite my dad’s regular complaints that the pain was getting worse, not better, the GP would not request an MRI or X-ray until the cycle of PT was complete.
Two months left. I went out fishing with my dad, and he was now walking with a pronounced limp and pain. We still picked vegetables for the senior center and went to the gym, but he didn’t walk as far and skipped some gym exercises. My dad’s GP finally ordered an MRI, which detected a mass on his hip that was now 5” x 2”. Still, more than a month passed while the office sought insurance approval to send him for blood tests. The slow down & wait mentality of Step Therapy resulted in no urgency, despite knowing the tumor had been present and growing for at least 5 months.
Two weeks left. I drove 8 hours to my parents’ house to help my mom get my father to the ER. Only weeks before, I was fishing, farming, and going to the gym with him. Now he was nearly incoherent and too weak to get in or out of a wheelchair. Within an hour at the ER, simple blood tests showed his calcium 20X normal, anemia, and signs of kidney damage… All of the symptoms of myeloma. A SPEP blood test confirmed it. Unfortunately, the cancer was given a six-month head start, and his weakened body could no longer tolerate the chemo required to stop it. Over the course of 2 weeks of chemotherapy and treatment of the complications of myeloma in 3 different hospitals, the cancer gradually took my father away. He passed away in home hospice on October 20th, 2024.
In retrospect, my dad’s GP agreed that he should have ordered an MRI and a simple set of blood tests earlier. The doctors would have seen high levels of calcium and proteins that were damaging his organs. In cancer, early detection and intervention always cost less as the patient is healthier and the disease is less involved.
Since I was diagnosed with myeloma over 4 years ago, I’ve met hundreds of survivors and often remarked that I really hadn’t met anyone that has passed from myeloma. As terrible as it sounds, I felt fortunate to be diagnosed with such a treatable and seemingly survivable disease. Last summer, the loss of my father changed all that. Myeloma is no different from every cancer.
No cancer patients should suffer idly while the healthcare system makes them trudge through step therapy. Doctors should be encouraged to use their knowledge and resources to determine the most effective diagnostics and get to effective treatments faster.
If that had happened with my father, I’d still be planning our next fishing trip.
My Motivation and Inspiration
Greater length and quality of life for those afflicted with blood diseases.
Share This Story
Get the most from every Story
Find A Compelling Patient Story
Share it on social media.
Share Your Story On Our Network
Share your insights, challenges and what keeps you going.