[PODCAST] Ep 84: Increasing Clinical Trial Access for Blood Cancers

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Clinical trials are the best instrument to advance treatment for blood cancers, but numerous challenges exist around trial identification, enrollment, and participation. We’ll hear perspectives from a community provider and patient advocacy organization on immediate—and forward-thinking—solutions to help this population better access clinical trials, including a tool from the Leukemia and Lymphoma Society to help patients identify cancer clinical trials that may be a fit.

Guests:

Ethan Binder, MD
Hematologist and Oncologist
Presbyterian Rust Medical Center
Rio Rancho, NM 

“I try to help patients understand their disease, how clinical trials fit into the picture, and give them a sense of what’s in play.” 

Leah Szumita, MS, RN
Director, Clinical Trial Support Center
Leukemia & Lymphoma Society
Rye Brook, NY

“We are here to help. Any member of the healthcare team can refer their patients to us. We provide patients and the team the most up-to-date information possible.”

This podcast is the first in a series from the ACCC Community Oncology Research Institute (ACORI).

Related Resources:

• ACCC Community Oncology Research Institute

• ACORI Call to Action Summit: Activating Equity in Community Oncology Research

• ASCO-ACCC Joint Research Statement

• Clinical Trial Support Center (CTSC)

• Leukemia & Lymphoma Society

• Research & Clinical Trial Resources at ACCC

• Ep 60: Advancing Clinical Trial Equity

 

Transcript

Leah Szumita, MS, RN: It is challenging, time-consuming work to determine what clinical trials your patients may be eligible for. And so, what I'd love to tell listeners today is that we are here to help.

CANCER BUZZ: That's Leah Szumita. She'll be back later in the show. On this episode of CANCER BUZZ, better access to clinical trials for patients with blood cancers. Welcome to CANCER BUZZ. I'm your host Summer Johnson. In the U.S. someone is diagnosed with blood cancer every three minutes. We know clinical trials are the best instrument to advance treatment for blood cancers, but patient enrollment has many challenges.

Today, we're going to break down those barriers on both sides—from the provider and from the patient. And then we'll explore a unique resource available to fill in care gaps. Dr. Ethan Binder is a hematologist and oncologist at the Presbyterian Rust Medical Center in Rio Rancho, New Mexico.

Ethan Binder, MD: It's a very big challenge helping patients identify appropriate clinical trials and also, you know, frankly, just getting them to where they need to be. I practice in Albuquerque, New Mexico, which is somewhat isolated in terms of a lack of big academic centers nearby. So, you know, it adds this whole layer of complexity of not only identifying an appropriate clinical trial, but you know how to get somebody there is a big challenge.

CANCER BUZZ: I understand there's probably a lot of time and resource challenges when it comes to researching the appropriate clinical trials for your patients. Can you talk about what that typically looks like for you?

Ethan Binder, MD: Yeah. Yes. So, you know, researching appropriate clinical trials for patients really isn't built into your day. And so often in a community setting, you know, you're seeing patients from the very beginning of the day at eight o'clock in the morning and often seeing patients through lunch until the end of the day. And so, you know, part of the challenge is just figuring out where you can, you know, have some time to look for things, whether it's looking at clinicaltrials.gov, whether it's exploring clinical trials through some of your institutions that you frequently send patients to for say, transplant, referrals, things like that.

And so, yeah, you have to figure out when you're going to kind of do all this and in the course of your day, and often a lot of times it comes after regular work hours, on weekend, when you're, you know, trying to identify a patient who really is in very desperate need of a trial and meaning the standard of care treatments or are lacking versus there's something really exciting that you really hope that your patients can participate in. To, you know, just patients who are really motivated for doing something that's not standard of care, even if they have good standard of care options.

CANCER BUZZ: Are there any others on your team who are also searching for trials?

Ethan Binder, MD: So, we do have some clinical trials open. So, we do participate in clinical trials. Unfortunately, you know, we don't have this huge expansive clinical trial program, but we do have clinical trial coordinators, research nurses, and research coordinators who are very much willing to help out. And so even though their primary job is to focus on the trials, we have open at our own institution. I can reach out to them and say, “Hey, I've got a patient with a large cell lymphoma who is now or say it like a CLL who transformed into how to Richter's transformation. Can you help me start searching around to see if there's anything regionally or even outside of the Southwest that may be applicable for the patient?”

So, we know, fortunately I do have some resources to help with that task.

CANCER BUZZ: What are the biggest challenges that patients face with clinical trial enrollment?

Ethan Binder, MD: By far the biggest challenge is most of the time when we're sending people for clinical trials, we're sending them out of state. So, they're going to be traveling to Denver, to Houston, to California, to Phoenix—and that's a huge burden on a lot of patients and their families. They just don't have the financial resources to do all the commuting. It's exhausting often, you know, we're talking about clinical trials and second, third, fourth line of therapy, depending on what the status of their disease and how symptomatic.

So just the physical ability and of getting to, and from these various institutions for clinical trial evaluation. And then if they're on a trial that, you know, requires them to be there very frequently for treatment, for example, that's a big, big challenge.

Certainly, you know, there are some financial help, for some patients, but a lot of times that burden is on them to shoulder. And I think, unfortunately, that really excludes a number of patients from being able to participate because of the, those resources or if they're working and trying to work through their treatment, how do they do that and not lose their job? I mean, these are all really big challenges in this kind of setting.

CANCER BUZZ: How do you discuss clinical trials and these challenges with your patients?

Ethan Binder, MD: So, I try to help patients really understand their disease and then how clinical trials fit into that picture. So, certainly you've got diseases that we've got great standard of care. They're hopefully going to have a long either remission or cure, and then you have diseases or phases of disease that the standard of care are certainly lacking. So, you try to help people understand, you know, what the goals of a clinical trial are that there's lots of different ways of clinical trials are done. Obviously, you can have randomized trials, you can have early phase, late phase trials.

And so, we're really helping people understand that this is not a one size fits all. And you know that sort of the devil's in the details. And oftentimes the ability to really provide a very nuanced—about a specific trial—is going to come down to the clinical trial site. So, you know, you're trying to at least give some kind of breakdown about how this sort of works, that they have to be screened. There is certain criteria that have to be met, that it ends up being oftentimes a little bit more complicated than you'd hope, but at least giving them that sense of what's in play.

CANCER BUZZ: I'm sure you've spent a good amount of time thinking about your patient population. What are some solutions that would help these particular patients better access clinical trials?

Ethan Binder, MD: Yeah, you know, I think one of the things that is apparent is having everyone be treated at a big giant tertiary or academic center is not really an ideal model for some of the reasons we talked about before. And some of this concept of sort of decentralizing some of the clinical trial opportunities, common IRB, and opening things that community sites is I think really how this is moving. So, I think the challenge is going to be for community programs to form effective partnerships with oftentimes larger institutions, learning how to sort of piggyback on some of their resources. We're never going to have, and frankly doesn't make sense to have, you know, each individual site have their own IRB and sort of reduplicate all of the bureaucratic and administrative issues.

I think we have to figure out ways to sort of decentralize this and, and I think that's starting to happen. You starting to get some sense that places are really interested in helping patients participate, whether they can do a telemedicine visit as a screening visit for a clinical trial, instead of having a patient travel for that initial visit, things like that, I think are going to help patients in the future. You know, there's sites and centers like MD Anderson, who are starting to think about, you know, can we open up our trials to community hospitals and having those kind of discussions between institutions? I think that's where the field is moving and that's where clinical trials are moving.

CANCER BUZZ: The Leukemia and Lymphoma Society has created a solution that helps individual patients sift through the weeds and identify clinical trials that may work for them. You heard from Leah Szumita earlier in the show, she's the director of the organization’s Clinical Trials Support Center.

Leah Szumita, MS, RN: I think it's really important to emphasize that clinical trials really are the key step in advancing cancer treatments, but despite this, the enrollment rate for cancer clinical trial participation in the United States is very low. It's only between 5-8% of eligible patients actually participate. And what is even more troubling is that almost 20% of cancer clinical trials in the U.S. close because they do not find enough patients. So, we know there are lots of reasons for this and, you know, predominantly the clinical trial landscape is really overwhelming for patients and healthcare providers to navigate.

I like to say that wanting to enroll in a trial and actually enrolling is not a straight path. There are so many different bumps in the road that make it really challenging. And so, there's lots of different variables that factor into that. There are patient specific barriers and there are also barriers for providers and institutions.

CANCER BUZZ: What are some of those patient specific barriers?

Leah Szumita, MS, RN: There are many myths about what clinical trials are and what it would mean to participate in a clinical trial. So that's a huge barrier right there that needs to be addressed with education about what clinical trial enrollment and participation really involves. Another important obstacle is health insurance and other financial constraints that really makes, unfortunately for some folks participating in a clinical trial, very difficult, if not impossible.

Another barrier is where the clinical trials are located. Oftentimes the clinical trials are in the large academic cancer centers. And for those folks who don't live in those areas and live in more rural areas, it's even more challenging to get there and participate.

CANCER BUZZ: Can you tell us a little bit about the Clinical Trial Support Center and how it's set up?

Leah Szumita, MS, RN: The Clinical Trial Support Center—or the CTSC—at the Leukemia and Lymphoma Society is a free service that offers one-on-one trial navigation to patients, caregivers, or healthcare providers. We're a group of 10 nurse navigators with extensive ‘hem-onc’ experience who work directly with patients, their caregivers or healthcare providers to identify potential clinical trials, and then overcome the barriers to enrollment that I just mentioned.

My team is comprised of amazing nursing experts. We have pediatric and adult nurse practitioners, pediatric and adult BMT and cellular therapy, nurses, clinical trial research nurses, and other advanced practice nurses. And we have a Spanish speaking nurse navigator as well.

Patients can come to us three different ways. Patients find us on their own either through calling our information resource center, which I'll talk about or through our online referral form. But the third way is that any member of the healthcare team can refer their patient directly to us.

CANCER BUZZ: Walk us through that process when a patient contacts you.  

Leah Szumita, MS, RN: No matter how a patient is referred to us, the process is the same. A dedicated nurse navigator will reach out to the patient and complete a thorough assessment, not only of past medical history treatment and diagnosis history, but an educational assessment on what their understanding is of their available treatment options, including clinical trials, but what are their goals of care? And then also a psychosocial assessment to determine what resources are available for that patient to participate in a trial that may take them away from home frequently or for a prolonged period of time.

The nurse navigator takes all of this information into account and does the deep dive into the clinical trials. We're very fortunate to have developed a proprietary database that incorporates everything available on clinical trials.gov, but then allows us to augment and edit that information based on what we learn when we're doing continued outreach on behalf of our patients. What we're doing is really providing patients and their healthcare team with the most up-to-date information possible.

The nurse navigator is going to comb through these clinical trials and create a very individualized list of potential options. This will not be a 20-page printout, but it's a refined list of potential options that take into consideration all of the patient variables I mentioned before.

CANCER BUZZ: What are the goals of the service?

Leah Szumita, MS, RN: What I hope to emphasize is that we don't receive any incentive to get a patient to enroll in any clinical trial. The goal is not to enroll every patient into a clinical trial because we know that's not always the best next step for a patient, but really what our goal is, is to increase the opportunities for participation. You know, facilitate informed decision making between the patient and their healthcare team and minimize the barriers that that patient and healthcare team may encounter. It's really about working in collaboration with the patient and their healthcare team.

We want to be seen as an extension of the healthcare team to really help as a resource to, you know, do that time consuming, work of searching through the clinical trials and overcoming different barriers.

CANCER BUZZ: Do you have any specific examples for us of patients that you've helped?

Leah Szumita, MS, RN: Oh, I have so many. I'd be happy to share. One, one that comes to mind is the mother of a young adult. She was in her early twenties who had been referred to the Clinical Trial Support Center. And her daughter had been diagnosed with Hodgkin's lymphoma. That was primary refractory to two lines of therapy. And so at the time that we received the referral, the healthcare team had already started a third line of therapy and she was scheduled for a ‘pet scan’ to evaluate the effectiveness of that treatment. The hope was that she was going to be able to proceed with auto transplant, but in the event that she was unable to achieve remission with this third line, her healthcare team really wanted to have a potential fourth therapeutic option.

And that included the possibility of clinical trials. So initially the clinical trial search was based on refractory disease, but fortunately the ‘pet scan’ came back showing that her Lymphoma had been responsive to the third line. Ashley, one of our amazing nurse navigators who was working with this mom and daughter quickly pivoted and completed a trial search for maintenance therapy post-transplant and the patient and her family had lots of questions, understandably. They had significant reservations about pursuing a clinical trial as opposed to pursuing standard of care maintenance therapy post-transplant and Ashley was really able to help support this family through this decision process.

She did help the patient obtain some second opinions and ultimately the family opted to enroll into a clinical trial that was close to home and close to her community cancer provider. And so the fantastic news with this scenario is that nearly two years after her transplant, she remains in remission. And I actually have a quote in an email to Ashley, her mother shared, “We are so appreciative of your support, patience, and most importantly, your navigation and research, we are extremely fortunate to be able to turn to you when our options seem non-existent, your documentation was insightful and helpful, and words cannot describe how we feel.”

So, this was, you know, a wonderful success story, but we have so many other amazing interactions with patients and their family and their healthcare team where we've been able to help support them through what is a very challenging and overwhelming process.

CANCER BUZZ: What can we do as community cancer professionals? How do we get in touch with your service?

Leah Szumita, MS, RN: Well, I think something that's important is, we want clinical trials to be discussed at every change in treatment. And, you know, it's important to appreciate that clinical trials exist across the entire spectrum of disease, whether it's newly diagnosed to relapse, refractory, to maintenance and remission into survivorship. It is challenging, time-consuming work to determine what clinical trials your patients may be eligible for. What I'd love to tell listeners today is that we are here to help.

We have several different ways that any member of a healthcare team can refer a patient to us. I'm pleased to let you know that we are in a formal collaboration with the American Society of Hematology (ASH), where we are their primary navigation service. So those members can directly refer their patient to us via the ASH-portal, but any member of the healthcare team, regardless of ASH membership or not. As I mentioned, physician nurse, social worker, nurse practitioner, physician assistant, any member of the healthcare team can refer their patient directly to us on our website www.lls.org/CTSC.

CANCER BUZZ: You can find a link to the Clinical Trials Support Center in the show notes. Thank you for joining us for today's episode of CANCER BUZZ. This podcast is the first in a series from the ACCC Community Oncology Research Institute (ACORI). In the next episode in this series, we'll explore policy efforts around clinical trials. We certainly hope you're enjoying the show. And if you are, we'd love it if you would follow and share the episode with your colleagues. Until next time, for the entire CANCER BUZZ team, I'm Summer Johnson.

CANCER BUZZ: CANCER BUZZ is a resource of the Association of Community Cancer Centers.