Podcast Transcript for Breaking Barriers and Dispelling Misconceptions in Transplantation

Host, Rachel Schollmeier: Hello and welcome to this episode of ASTCT Talks. I'm Rachel Schollmeier, content coordinator with ASTCT. And today I'm joined by ASTCT's President and Chief of the Adult Bone Marrow Transplantation service at Memorial Sloan Kettering Cancer Center in New York and a Professor of Medicine at Weill Cornell Medical College.  Dr. Perales, it's great to have you, and welcome.

Guest, Miguel Perales, MD: Well, thank you Rachel. Great to be on today,

Rachel Schollmeier: So to start out, misconceptions are very present in our field, particularly among community oncologists and general internists.. Do you have a personal story about where you have experienced these misconceptions?

Miguel Perales, MD: I think that's a great question, and I'm sure many of us have patients we can think of where we have come across these types of misconceptions. This has been true historically in transplant, but also increasingly today we see that in CAR T cells. So I think that's really something that as physicians who take care of these patients, we need to be aware of.

I think part of the issue is the fact that many of these colleagues of ours who treat patients with the primary disease, either oncologists or internists, were probably trained at a time where the complications of these treatments, particularly allogeneic transplants, were significantly more severe than what we see today. We had fewer treatment options for these complications. In their mindset, their only exposure to transplant, for example, was a month on the inpatient service where you see a lot of acute complications or patients being readmitted with complications, as opposed to being able to see the long-term survival of these patients.

The patients that I and many colleagues see in our clinic every day, you know, patients 10 years out or 15 years out who essentially are coming in once a year, almost for a social visit to share with you, you know, pictures of their grandkids and kids and graduating and wedding and things like that. And that's what you don't really see during your training as an intern or a resident or even as a hem-onc fellow.

I have one particular example from several years ago where I saw a patient with lymphoma, pretty aggressive lymphoma, lymphoblastic lymphoma who was in his mid to late fifties at the time. His referring lymphoma doctor sent him to see me and basically told him, you know, transplant is probably the only option, but I don't think many patients survive. And the patient relayed that to me during the initial visit. And I said, you know, I'm not surprised that that's the conversation you had. But I do think that transplant is the curative treatment for your disease. It's probably the only curative treatment. And I recommend that we proceed.

Fast forward, this patient went through the transplant, did well, and achieved a very good outcome. Obviously had some of the typical complications we would see early on. And once he was further out from transplant, decided to do, sort of check off his bucket list. And every time I would see him in clinic, he would either be coming back or going off to some exotic trip. And he did, for example, he climbed Madripitru, he went to the Galapagos, he did the safari, sort of all the typical things that many people have on a bucket list. And he would tell me about these trips.

And I would say to him, it's great that you're doing these trips. It's fantastic. I'm very happy to hear this. I want you to do me one favor. Each time you go on one of these trips, I want you to write a postcard and send it to your lymphoma doctor so he can see how you're doing and how you're really living life after the transplant. And this obviously was back in the day when we didn't have email and people didn't post on Instagram and social media, so we were still sending people postcards.

For me, that sort of really captures this idea that our patients can actually do extremely well and have very productive lives, both in terms of going back to work and going back to life. And that's the notion, I think, that many of the physicians who refer the patients don't necessarily appreciate.

Fast forward to 2023, I think, now that we have cell therapy available, the idea of who's eligible for transplant, who's eligible for CAR T cells, for example, and the patient with aggressive lymphoma. Most of us actually think that the CAR T cells are safer than autologous transplant, and actually there are data to support that. There's now an FDA label for one of the CAR-T products, Liso-Cell, which is actually specifically for patients who relapse early and are not eligible for an autologous transplant.

And what we know is that we've treated patients into their 80s with CAR-T cells, where we may have some doubts about necessarily doing the same approach for the target's transplant, which is cytotherapy. And so I think some of these patients are not even being referred to us because, again, CAR-T cells are relatively recent and approved in 2017. Many people who are trained and take care of these patients in the community have never actually seen a patient go through CAR-T cells, and even less in a patient who's had successful treatment with CAR-T cells.

And so I think we really need to provide more information to the colleagues that we work with about the fact that outcomes have improved over time for allogeneic transplant, autologous transplant, and that we have new cell therapies. The transplant or CAR-T physician is the one who's best positioned to make a decision about what's an appropriate treatment. And we'd rather see a patient where we can say, unfortunately, we agree with the local physician that this may not be the best treatment for you. Let's sort of not even see that patient in the first place.

Rachel Schollmeier: And the other primary barrier we see in our field is access. What are your thoughts?

Miguel Perales, MD:  Yes, I think, obviously, one issue is the referral to the treatment center in the first place. Another issue that comes up is also sometimes patients, you know, who are far away, they don't want to travel, don't want to relocate for treatment.

But one of the main barriers that we also know has been an issue historically for transplant and has continued to be an issue in the patient population that was eligible for CAR T cells is access to care, you know, based on insurance and based on socioeconomic factors. And that continues to be a major barrier.

I mean, there are publications on this, for example, in myeloma. If you look at CIR data and the number of patients in any specific area of the country being diagnosed with myeloma, and you can sort of calculate how many patients based on that should be treated with an autologous transplant. And you see that the statistics, you know, based on the CIBMTR reporting clearly demonstrate that a large number of patients who technically should have been referred for transplant and treated with a transplant actually never get to the transplant center.

And I think part of that is certainly access issues related to insurance and socioeconomic factors. And even sometimes patients who are referred, it's very hard to do the transplant or the cell therapy because of some of these barriers. And so there's definitely a patient population that we're not able to serve because of these issues.

Rachel Schollmeier: What is ASTCT doing to address challenges around misconceptions and/or barriers to access?

 Miguel Perales, MD: I think the society has really taken a two-track approach, and I have to call out here one of our major partners in this, which is the National Marrow Donor Program/Be the Match and CIBMTR, where we really have this mission to increase access to these life-saving treatments for our patients. And as we said, there are both misconceptions and issues around barriers to access. So what can we do about misconceptions? I think a lot of it has to do with education, both for patients and physicians, about how the field is rapidly evolving and to make them aware of this rapidly evolving field so that they can refer the appropriate patients and we can provide life-saving treatments.

In terms of the specific access issues, there is a major initiative currently underway where again the ASTCT and NMDP have partnered on what we've termed the ACCESS Initiative. And this is really taking a comprehensive look at the barriers that prevent patients from getting these life-saving treatments. We're looking at issues such as poverty, insurance, socioeconomic factors, and all the things that come into play here, and seeing where we can actually act.

Some of it is going to require changes in policy, talking to the federal government, but also at the state level because there are different policies around Medicare, which is federal, and around Medicaid, which is a state program. For example, in some states, you can transplant patients over the age of 60 who are Medicare recipients for lymphoma, while in other parts of the country, you cannot. The fact that you have that difference even at the Medicare level based on different regions makes no sense. And that's going to require policy changes or discussions with the federal government and CMS.

So I think we're really taking this comprehensive approach to see what we can do, both at the level of the society and in our partnership with NMDP, to improve on this. This effort is led by Stella Davies, one of our former ASTCT presidents, and Jeffrey Auletta, one of the senior scientific directors at the CIBMTR. This is not going to be fixed overnight, obviously, but I hope that we will be able to make progress and provide these treatments to our patients.

Rachel Schollmeier: What can members of our community do to help address misconceptions and barriers to access?

Miguel Perales, MD: I think this is really an area where we need to partner with the members of the society who are seeing these patients because they have that direct connection with the network of physicians that they work with. And so we all need to, our own centers, talk to the physicians that we partner with in the community and provide information and education around what is an appropriate patient and when should a patient be seen. And I think this means going out and talking to local physicians, meeting with them and really discussing these issues and these clinical issues. I think historically, maybe academic centers have not done necessarily the best job in terms of partnering with local physicians and I think we need to do better and I think that there are certainly differences and we can learn from the centers that have been very good at this and sort of see how we can improve these communications with our partners. Because at the end of the day, I think every physician taking care of a patient wants the best outcome for that patient. And so I think we need to partner with the referring physicians and work towards that goal.

 Rachel Schollmeier: Well, thank you so much, Dr. Perales, for joining us and sharing your story and perspectives. And we're grateful to have had the opportunity to learn from you and excited about the remarkable strides that lie ahead for ASTCT.

Miguel Perales, MD: Thank you.

Tags: Allogeneic, Transplant, Autologous, president message