IMF Chief Medical Officer Discusses the Inaugural Iceland Cycling Expedition and Blood Cancer Awareness

PE: At the end of this month, the IMF will begin its inaugural Iceland cycling expedition as a part of blood cancer awareness month. Can you briefly explain the goal of the biking tour?

Mikhael: The goal of the ice expedition, as we call it, or the Iceland cycling expedition, is really twofold. One, to raise greater awareness of myeloma and how it impacts people all over the world, in particular, certain populations over others. Second, to raise funds for the research that we are doing to try and improve outcomes in myeloma. The ice expedition is based in Iceland for lots of reasons, but one of the things that the IMF does is in partnering with others for research is really try to do research that otherwise could not be done, and Iceland was selected, with partners at the University of Iceland to do this incredible project called I Stop MM, which is an acronym for Iceland screens treats or prevents multiple myeloma. It was a program that was the largest in myeloma, screening 90,000 individuals to better understand multiple myeloma.

Multiple myeloma is a relatively rare condition, maybe 2% of all cancers, but its precursor, or pre-malignant condition is actually really quite common in almost 5% of people over the age of 40. So, we want to understand what causes myeloma or what genetic connections we have to myeloma, and what causes patients with that pre-malignant condition to develop myeloma? This program is really meant to look at that comprehensive strategy of screening patients with multiple myeloma in Iceland. Iceland works because it has a unified healthcare system where we can look at variables that otherwise we couldn't look at, and more people have had their genome sequenced in myeloma than any other place. We’re very excited about this program and very excited about being able to have people in Iceland and across the whole world know more about multiple myeloma.

PE: Can you discuss why it’s so important for events like this that support multiple myeloma research and raise awareness and why this help is needed?

Mikhael: It’s fundamental to do programs like this for a whole host of reasons. In a disease that is relatively uncommon, accounting for 2% of all blood cancers, it's really important that we have a collaborative effort to better understand it. No one institution, no one clinic, no one hospital, can answer the questions that we really want to answer in multiple myeloma, and that's why the IMF has such a broad reach and work of research across the world. It's also important because myeloma is not a condition that is easily diagnosed. One of the things that leads to unfortunate outcomes in myeloma is that most people have the signs and symptoms of myeloma for a long period of time before someone makes the connection that they may have it. The average patient actually sees their primary care doctor three times with signs and symptoms consistent with myeloma before the diagnosis is made because the symptoms are general things like extreme fatigue, bony pain, and a low red blood cell count if it’s been tested. Those are general things that could have lots of different causes.

Raising awareness in the medical community is very important. This way, patients can think about the signs and symptoms, doctors can make the connection and order those tests in time to make the diagnosis, and then ultimately, of course, it's important, because we know it's going to affect the lives of our patients. If we can better understand this disease, if we can figure out how to follow patients carefully when that precursor condition, or M Gus, as we call it, has been discovered. M Gus stands for monoclonal gammapathy of undetermined significance. It's a mouthful, just basically means that someone has this abnormal protein in their blood that could grow or could never grow. We want to know what makes it grow and what causes patients to develop myeloma. That’s the ultimate goal of this strategy.

I think the last comment I would like to make about this is that Iceland, no pun intended, is the tip of the iceberg in that it's one country that is a very important test tube to study because it has that unified system, because people have had their genome sequence, so we can learn from it, but we know it's a very monochromatic country in the sense that the majority of patients are Caucasian, and yet we know myeloma adversely affects multiple populations, and individuals like myself of African descent, were at twice the risk of developing myeloma, and a black man or black woman diagnosed with myeloma today is expected to live half as long. We hope that the findings of Iceland can spur the work that we're doing in other places now, where we're looking to screen the African American population, of the Latino American population, and better understand how it impacts different populations.