by Teresa C. Davidson
"I dodged a bone marrow transplant, and I am surrounded by rock star physicians and medical scientists!”
When a diagnosis I received in 2001, Polycythemia Vera, transitioned into a more serious form of a rare blood cancer and incurable leukemia, Myelofibrosis, I thought I had no good options. I had been treated by a local hematologist with phlebotomies and oral chemo since 2004. When my blood counts were fluctuating in 2021, a bone marrow biopsy revealed the severity of a fibrotic bone marrow and the ongoing presence of a genetic mutation, impacting healthy blood production. I was referred to a bone marrow transplant specialist who reiterated that a bone marrow or stem cell transplant was the only cure. However, the mortality rate for 70 year-old-me approached less than 50 percent.
I was able to appeal four rejections for insurance coverage of an inhibitor medication that is meant to target the mutation from its irreverent misbehaving. When my husband, Logan, asked the specialist about my timeframe, he pointed out that I had already beaten the odds by surviving for 21 years. “What more do you want?” he asked. What Logan wanted was more time with me! Logan shared his concerns with his dear friend, Harry Warner, whose affiliation with Healthnetwork Foundation opened an unexpected door for me. Within days I was a patient at Cleveland Clinic, with a world-renown Myeloproliferative Neoplasm (MPN) specialist, of which there are not many in the United States or globally.
I read everything I could understand by doctors and educators, and my point of reference became the research of Dr. Aaron Gerds (Cleveland Clinic), with Dr. Kristen Pettit (University of Michigan). When a telephone call came from Healthnetwork Foundation Medical Coordinator, Michelle, her kindness paved my way to an appointment with Dr. Gerds, who is the principal investigator for a number of clinical trials for the treatment of MPNs, and who is focused on developing novel therapies. From there, the patient coordinators for Dr. Gerds, Nicole and Randall, requested my external medical records, set up my lab and doctor visit appointments, then printed and hand-delivered patient information I had emailed. To further enhance our medical visit was the appointment of a liaison, Victoria, to help my husband and me navigate the halls of Cleveland Clinic. Victoria reserved our hotel room at the InterContinental, where we were just a skywalk away from my appointments. To ensure additional comfort, Victoria met us in the lobby, escorted us to appointments for labs and to see Dr. Gerds, offering to wait for us to find our way back.
Meeting with Dr. Gerds was phenomenal. He had a more in-depth analysis of my bone marrow from a previous biopsy. He had a diagnostic scoring system, which in my thousands (truly!) pages of research, I had not discovered. This assessment added years to my previously projected months of overall survival. The dosage of my medication was increased for optimal effect, arranged by the Cleveland Clinic Specialty Pharmacy and already delivered to my home; along with a standing order for monitoring bloodwork in my neighborhood clinic, since I live over three hours away from Cleveland Clinic. I shared my interest in clinical trials and meeting with Dr. Kristen Pettit at the University of Michigan (I was on a waiting list), and by the time I arrived home, Dr. Gerds had shared my records with Dr. Pettit and I was able to set an appointment up very soon afterwards.
I am surrounded by rock star physicians and medical scientists! I dodged a bone marrow transplant and have medicine giving me time. I’m deeply grateful to Harry Warner and Healthnetwork Foundation and Cleveland Clinic. Dr. Gerds is phenomenal, I am heartened that I am now his patient and feel confident to be in his care. This Myelofibrosis Leukemia will not define me.