Dr. Mikhael: Hello, my name is Dr. Joseph Mikhael, and I serve as the chief medical officer of the International Myeloma Foundation.
Anna: Awesome. And how would you describe the present state of myeloma treatment and research?
Dr. Mikhael: The present state of myeloma research and treatment is actually remarkable. It has changed so dramatically over the last, at least, 20-25 years that I've been involved in it. I would describe the current state as progressive and hopeful. I choose those two words carefully. Progressive, one, because it is rapidly changing. I don't know if I've ever seen a time where we are seeing so much improvement and so many new therapies coming in. I mean, there's an FDA approval every few months it seems. And so, the rapidity of the progress in myeloma is really quite remarkable. And more specifically, this means that we're bringing in new immunotherapies. We're bringing them earlier into the disease course and it's resulting in deeper and more durable responses for our patients. But not only that their disease is responding, but that we're providing it in a way that allows them to maintain more of their quality of life. And that's probably why I use the word hopeful, or that's why I use the word hopeful because it's now affording us the opportunity to give people a better quantity and quality of life, and that quantity is being expanded more than we've ever seen before.
We've just had a recent study showing that patients with very advanced myeloma treated with CAR-T cell therapy had, a third of them, completely disease free five years later. Something that we didn't even, we could never have imagined previously. And on the other spectrum in frontline therapy with our new approaches of being more intense upfront, we're actually now seeing patients expected to be in remission for over a decade of their initial therapy. So really, it's amazing how fast things are progressing, but also how much more hopeful we can be through this.
Anna: Absolutely. That's remarkable. And where do you see organizations like the International Myeloma Foundation contributing in the fight against myeloma?
Dr. Mikhael: Well, I'm a little biased here by being someone who works for the IMF, but I really think the IMF is uniquely positioned more than any other organization on the planet to help move the agenda of myeloma forward. And what I mean by that is I see the IMF as really being the convener of myeloma, that it brings together the patient population, the provider population, industry, and indeed our regulatory authorities in one place. Not only does it bring us together, it brings us together in a way to allow people to perform at their highest level. I've sometimes said that the IMF is kinda like the Olympics, the convener of the Olympics. Why are so many records broken at the Olympics? They're broken because people are given the opportunity to perform at their highest level. And so great things can happen at one cancer center or one institution or one university, but when we bring everybody together and have the opportunity for that kind of collaborative work and collaborative research together, it really expands the opportunity of research and can do things that otherwise could not have been done. Furthermore, it allows the patient voice to be prominent throughout that activity.
So not only do we have all of the experts in myeloma through the myeloma through the International Myeloma Working Group, we have more patient support groups, of course, than any organization all around the world. And that to me is the magic sauce, is bringing that patient voice, that patient influence into the agenda of education and research going forward.
Anna: For sure. That makes a lot of sense. And as a physician, how do you patients on your community events shape your understanding of myeloma?
Dr. Mikhael: I mean, I think these events, which frankly were really in many ways designed and first innovated by the IMF, really have changed the way patients approach their disease. What do I mean by that is that, Susie Durie in the earliest of days over 35 years ago said, “we should empower patients to ask their doctors the right questions.” Not that they're questioning per se their doctors, but they're empowered with information. They're empowered with the latest and greatest in the disease to be able to have a more fulsome conversation, which has led ultimately to the beautiful principle of shared decision making. And so, these educational events are absolutely fundamental in giving patients the education, the information that they need about the disease in general, about their specific scenario to be able to have that more intelligent and fulsome conversation with their health care team so that they can get the best care possible. And it's a privilege to be a part of that.
To me, looking out as I share these things internally, it's a challenge for me to make complicated things straightforward, but I love doing that. But then externally, as I look out of the crowd and I see a little, literally, light bulbs going on over people's heads as they get it, as they understand it, it's inordinately gratifying because I know that it's not just about this day and that they feel good about something and that they've learned something, but they carry back into their treatment pattern that information, that education, and it empowers them to have a better outcome.
Anna: That's great. Thank you. And do you think there's a need for greater participation by physicians in patient events and vice versa?
Dr. Mikhael: Unequivocally, yes. I mean, I think we as physicians were very well trained in our training, and we are trained in it in communication. There's no doubt. But I think there's something unique about being in a whole room of patients when we are the ones that are outnumbered. Typically, when patients are coming in the clinic one by one, we generally, if you will, outnumber them or the healthcare team is greater than in number than the patients. So, I think being in this setting, people get to see and understand, physicians get to see and understand a different perspective that they can learn from patients what are really on the minds and hearts of patients, not just the questions that they hear in clinic, but in a global sphere. It also has them understand, I think, the varied experience of our patients, that some have very positive outcomes, some have challenging outcomes, and so it sensitizes us more to it. Similarly, for our patients to see physicians outside of the traditional clinic or hospital setting is very valuable. They see us as humans, you know, not just doctors, but they also see a different side of us, an opportunity to ask questions that are not in the middle of that pressurized clinic where we have such little time. Here, we have more opportunity to explore ideas, explore concepts. And it's allowed me as a physician to better appreciate how I educate my patients even in the clinic, that I know that I can do it in a way that's more patient friendly and supportive.
Anna: That's great. Thank you so much. And any advice on how physicians can better engage with patients and how patients can be better prepared or informed about their treatment journey?
Dr. Mikhael: So for the physicians, I would say take time to learn the resources that are available to patients outside of the ones that are directly provided by the clinic. Go to the IMF website at myeloma.org and learn about the support groups in the area that you work, because inevitably, patients are gonna be there and you can direct them to that. You you're not being an advertisement for it. You're just trying to find further support for your patients. We know that when patients are involved in a support group, they do have better outcomes. They feel more supported. They're more likely to participate in trials. They're more likely to be adherent to their therapy. So, support groups are an important part of what they do. But also, the other resources available, whether they're online or in print, or other educational fora, like events like our patient family seminars or regional community workshops. I think is incumbent on the medical team to know what's available to patients in their area because they can't provide everything. I can't, in a single visit of a new patient and then follow-up visits, give them all the education that they really require for their journey, and in this way, it's a shared process.
For patients, I think it's incumbent on them to learn as much as they can about their disease, to be prepared, to use the resources available to them, and of course, the IMF, we have so many resources to them. We even have a specific resource of questions to ask your doctor. So, we want to lead the witness, your honor, like, give them help so that when they go into the into the doctor's office, which can be so intimidating and frightening for them, to understand their disease better so that they can be better partners with their health care team.
Anna: Absolutely. And is there anything else we didn't touch on today that you'd like to share or discuss with us?
Dr. Mikhael: Well, I can't help but always come back to a topic that is very near and dear to me is that as we seek to reach out to every single patient with myeloma, you know, our vision is where every patient can live life to the fullest unburdened by the disease. There's a special emphasis on every patient, and there are patients who can't make it to seminars like this. There are patients that don't have as easy access to myeloma experts or clinical trials. In fact, myeloma is the most disparate cancer within the African American community, where a black man or a black woman are expected to live half as long as the same aged white man or white woman with myeloma. So I always wanna take the opportunity to raise awareness of that disparity and, of course, how the IMF is trying to address that. But the IMF can only do so much. Everyone has to be involved in this, and everyone has to appreciate the nature of those health disparities and work towards finding ways to reduce it. Because we have seen that when given equal access to therapy, all patients can do better with multiple myeloma.
Anna: Absolutely. Well, thank you so much. We really appreciate your time.
