A multiple myeloma survivor shares his story, including how patient assistance made a positive impact.
The final day of Patient Assistance & Access Programs (PAP) spotlighted an individual by the name of Michael Riotto, who has quite an inspirational story which he shared during his presentation, “Finding the Silvering Lining—Hear, See, and Feel the Influence of Patient Assistance.”
He was living what many would describe as a standard life in Bucks County, Pa., working 60-hour workweeks at a retail department store. In 2011, After his day off in in a week in a half, he decided to take his 13-year-old son and his friends to the Jersey Shore, where he gets badly tumbled in a wave after body surfing.
After feeling major discomfort in his neck, Riotto drives home, deciding to hold off on calling his primary doctor until the next morning. After tests at a local hospital confirm that “whatever you’ve got, we can’t handle it here,” he gets taken to the Hospital of the University of Pennsylvania as a trauma patient, where doctors note that his bones are “mothy,” due to lesions in his bones. A bone marrow ultimately confirmed that he had multiple myeloma (also known as myeloma) at the age of 51, a cancer of the plasma cells in the blood.
“It moves so fast,” he said. “There was no time to think about how we're going to pay for it, what we're going to do, nothing else. It was literally survival at that point. … I can distinctly remember right off the bat walking into a local oncologist’s office, getting ready to get my first induction therapy.”
That was when the office requested $792 out of pocket, even before therapy began. Thereafter, once he had enough stem cells, the moment came for his autologous stem cell transplant on Dec. 29 of that same year. There were moments prior to this when the going certainly got tough—including when he was in the critical care unit—but Riotto carried on and is now in remission.
He noted that the silver lining through this difficult journey was the opportunity for him to volunteer his time through advocacy by coaching three different organizations (including 23 different Myeloma patients), along with engaging in patient legislative advocacy.
“So many things happened throughout my life, and it gave me the ability to give back tremendously through peer-to-peer education. It gave me the ability to advocate,” he said, while also crediting PAN Foundation and the Leukemia & Lymphoma Society (LLS) for providing him with patient assistance services.
“So many people ask me, ‘why do you advocate Michael, why do you give up your time, and do this all as a volunteer?’ As Kevin [Hagan] mentioned, I do it for LLS, I do it for patients’ rights, and I do it for the International Myeloma Foundation, for the PAN Foundation. Maybe a little bit selfishly, but maybe someone out there might get a law passed that might help me. But in the end, I do it for all those who can't. Those who won’t or are just unable to. So I'll share my voice for them, and that makes a difference.”
Reference
Riotto M. Finding the Silvering Lining—Hear, See, and Feel the Influence of Patient Assistance. March 21, 2024. PAP 2024. Philadelphia.