Video
Overcoming Barriers to Early Diagnosis in Multiple Myeloma
Author(s):
Expert perspectives on how to improve the early detection of multiple myeloma within patients belonging to racial and ethnic minority groups.
Transcript:
Joseph Mikhael, MD: There's obviously so much that we can talk about here. We can sadly talk all day about the disparity but let me summarize 5 top things are coming to mind or coming to the forefront. I know they're not exhaustive I'm going to give each of you a chance to try and help us with the solution to these 5 and I'll kick off number 1 to help us. Number 1 is the time to diagnosis. Number 2 is the time to therapy. Number 3 is access to specialized centers. Number 4 is appropriately the four-ts, right? Access to triplets, transplants, trials, and CAR-T, and Dr Tondre told me he likes my acronym of 4-ts so we're going to keep it. And then lastly number 5 was the physician bias. Thinking about those 5 and you can choose as we go through who wants to cover each but I'm going to start with the time to diagnosis. Appropriately I am little biased by my work in the IMF because this is a big part of what I do every day and we've created this empower program as we call it. It's sort of a play on words M-Power standing for we want to empower patients and communities to change the course of myeloma because the current course of myeloma is obviously inappropriate. What we're doing is a public campaign in multiple cities and nationally across the country to raise awareness around myeloma. Those things that Craig was talking about. It's people who have signs and symptoms even the lay public. Even if they've never heard of myeloma can think could this be myeloma? Could I be at higher risk? Do I need to go see my primary care physician? But also, as sort of a bi-modal approach, not just doing the deep engagement with the community. Which by the way we do with both the medical and non-medical communities. Working with the National Medical Association and Black Nurses Association. With fraternities, sororities, churches, barber shops. We're trying to go where people generally are to raise this awareness. At the same time, we're going deep into the primary care community to raise awareness around exactly what we've talked about. How do I know if my patient may have myeloma? How do I distinguish diabetes from myeloma? What testing should I do? We're still seeing a lot of people just doing serum protein electrophoresis. And Craig said it himself you need to add the light chain. You're going to miss at least 20% of people if we haven't done light chain measurements. Those kinds of things I think can at least help reduce that. We're trying to do some work now looking kind of like you did Sikander over time looking at the first claim of a symptom that could be related to myeloma to the claim for myeloma itself and seeing with time if we're bridging that gap and shortening that time in between. In this first potential at least solution, we're seeing that this isn't just about what we do in the clinic. This is what we're doing in the community. This is what we're doing in the medical field at large and what we're doing in the hyper specialized oncology and myeloma clinic. That's my suggestion for the time to diagnosis. Maybe Sikander, I'll turn to you for the time to treatment. You noted the problem. You saw that 102 days, for example that you've quoted, what should be our thoughts around solving that problem to some degree and shortening the time from diagnosis to therapy? And you conclude a little bit of access to that therapy, of course.
Sikander Ailawadhi, MD: Joe, this is truly a multifactorial problem, because like you said, we can make the diagnosis. How do we get the right treatment? And frankly, I could talk about this, and we could touch upon every single thing that we've talked about so far. How do we change the physician bias that the patient may not have money to afford that drug? How do we get the appropriate resources to the patient to overcome their social determinants, their poor social determinants, so that they are able to come in for that injection of bortezomib, which the Hispanic patients took 102 days too, but we don't have a setup that this can be delivered at home? Frankly, I can tell you that for one of the questions that's most commonly I've heard from patients, when they say, Oh, so it's just an injection? Can I give it myself? Can a nurse come home and give it to me? No, they can't. You're going to have to come in all the way here. These are challenges of how we can- or what are we facing, what is a patient facing. But I can say that is smaller but significant piece is when patients get diagnosed, even those who come to let's say, our larger cancer centers, academic cancer centers that all of us love to teach. Teach our patients, teach the fellows, the residents, the community. Very frequently, the patients don't have an understanding about their diagnosis. We all love to say, we want the patients empowered. We want the patients to be their own advocate. But if the patient doesn't know what to ask, they're not going to be able to ask that. We did a study recently where we just surveyed every single patient who was walking through the door and was new to Mayo, just asking them series of things. Focus on clinical trials, focused on their diagnosis, etc. And I can tell you, one of the major differences that came for African Americans was that they had a significant higher lack of awareness about their diagnosis, about the trials, about basic stuff that we talk about, and we think should be so obvious. I really think the first thing of course, I cannot change the patient's insurance, or overnight change the insurance setup in this country, or the access to that drug. But if I can do one thing is to make sure that the physician is aware of the fact that if they don't treat the patient timely, the patient's going to have more morbidity. If the patient doesn't get the triplet, their overall survival is going to be compromised. If a patient has high risk disease and you don't treat it with multiple drugs, you're going to make the patient die sooner. The physician needs to know. When the patient gets the diagnosis and the caregiver with their caregiver, they need to know. If I don't get access to an academic center, even for a single time consult. Not everybody can get treated with Irene or with Craig or with you or with myself. Patients need to stay and get treated where they are. They have their infrastructure, their social support system, their caregiver, their circle of care. But if they get a consult, they're going to get more empowered. They're going to get more knowledgeable. They need to know about drugs. In my mind that one piece of making everybody, the patient, the physician, the caregiver, the advocacy group, the society aware about this disparity and a module that can drive home these points, that's got to be the first baby step but in the right direction.
Joseph Mikhael, MD: Very good. Well said. You're even getting the thumbs up from Craig. I mean, obviously, we'd love to incorporate all of that into each of these disparities and I am dividing them up only so that we can try and look at them at different angles, but they clearly absolutely overlap.
Transcript edited for clarity.
