The third IU Grand Challenges webinar about the Precision Health Initiative (PHI) took place this week, focusing on progress in studying and treating multiple myeloma, which is a cancer of the plasma cells in blood. This webinar featured Rafat Abonour, MD, who leads the IU Precision Health Initiative multiple myeloma disease research team, as well as Dorothy Frapwell, a multiple myeloma patient and retired IU general counsel. IU Vice President for Research Fred Cate served as the event’s host.
Part of the multiple myeloma team’s efforts since joining the Grand Challenge include starting the Indiana Myeloma Registry. They are currently enrolling 1,000 multiple myeloma patients from across the state to donate biospecimens, like blood and saliva, and take a questionnaire. Researchers plan to evaluate the patients’ genomic and environmental data to advance clinical trials aimed at developing potential treatments or cures. Abonour said adding the right people to their team has also been an important part of their work.
“The Precision Health Initiative has contributed to several major recruitments that have changed the way people look at Indiana when it comes to multiple myeloma,” said Abonour, who is the Harry and Edith Gladstein Professor of Cancer Research at IU School of Medicine.
Abonour said they realized the importance of looking for new ways to treat patients, including finding innovative ways to fund their efforts. One of those programs is Miles for Myeloma. When he first came up with the idea, Abonour said he wanted to do more than a standard 5K race: since multiple myeloma is a unique disease, they needed to create an event that was just as unique. Now each fall, Abonour goes on a two-day cycling event across the state with other myeloma researchers, caregivers and family members of myeloma patients, and some patients themselves, to raise money for research. Since 2005, Miles for Myeloma has ridden 2,500 miles and raised more than $6.3 million for research.
Frapwell also shared her story as part of the webinar. She was diagnosed with multiple myeloma in 2005. When she received the news, she didn’t even know what the disease was. After receiving various kinds of treatments, Frapwell had a good outcome, but started relapsing a few years later. There were more new treatments available for multiple myeloma patients at that time than there were when she was first diagnosed, which she was able to use. This pattern repeated itself later, which Frapwell said shows the value of new discoveries and developments for multiple myeloma patients.
“I had almost no side effects [with the third round of treatments,]” said Frapwell. “There are many more drugs available now than there were when I started this journey.”
The COVID-19 pandemic is also an important part of all research conversations and that includes these quarterly research webinars. Frapwell mentioned that she has lived with myeloma for so long now, that it has become a part of her daily life. That was until COVID hit. Now, with multiple myeloma as an underlying condition, the threat of contracting the coronavirus, along with her disease, has meant a constant state of worry.
“This fear underlies the reason why we all need to get vaccinated,” said Cate. “Because we don’t just get vaccinated for ourselves, but for those we love too.”
“I wish all Hoosiers would get vaccinated,” added Abonour. “It’s depressing to see our state’s vaccine rates so low.”