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HCP Roundtable: Overcoming Practice Barriers to Enhance Small Cell Lung Cancer Care

How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer (SCLC)? Dr. Nagashree Seetharamu from Northwell Health and Nurse Practitioner Beth Sandy from Penn Medicine explore actionable clinical approaches and strategies to address the unique challenges in SCLC care.

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer? What strategies can be implemented to ensure that patients with extensive stage small cell lung cancer have access to participate in clinical trials and to receive cutting-edge therapies?

It is my privilege to be joined by Dr. Nagashree Seetharamu of Northwell Health. Dr. Seetharamu is an Associate Professor of Medicine at the Donald and Barbara Zucker School of Medicine at Hofstra Northwell Health, and has established a reputation at the national level through her active involvement and leadership within influential oncology organizations that steer the direction of clinical cancer care and research across the United States and globally. Thank you so much for joining this EPEP program, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

Thank you.

Dr. Nicole Rochester:

It is also my honor to be joined by Ms. Beth Sandy, a thoracic oncology nurse practitioner at the University of Pennsylvania Abramson Cancer Center. In addition to regularly presenting at several national and international nursing and thoracic oncology meetings, Ms. Sandy has published in a number of peer-reviewed medical and nursing journals. Thank you so much for joining this EPEP program, Ms. Sandy.

Beth Sandy:

Thank you for having me.

Dr. Nicole Rochester:

I’d like to start our discussion by talking about current practice barriers in small cell lung cancer care. So I’m going to start with you, Dr. Seetharamu. What are the barriers to implementing patient-centered care in the management of small cell lung cancer, and what are we learning from the existing evidence?

Dr. Nagashree Seetharamu:

Yeah, thank you. It’s a great question. I would start by saying that I think the first thing is really limited treatment advances compared to other types of cancers and clinical trial access. So compared to other types of cancers, including non-small cell lung cancer, we have very, you know, fewer options. Patients, despite all the advances, the outcomes are still suboptimal. Many of our patients present with very advanced disease and have multiple other comorbid conditions. So it makes it difficult to deliver optimal care or to enroll patients in clinical trials. In addition, we do know that palliative care improves outcomes in non-small cell lung cancer. We do not have this data as much in small cell, and there is a stigma around it. People do not avail palliative care options, which are perhaps most appropriate for patients with small cell lung cancer.

Lastly, I think there’s also streamlining the processes. We do have the low dose CT scan, lung cancer screening, fewer patients avail it. With increased availability, increased acceptance and increased uptake, probably we can see more small cell lung cancer cases in early stages that will ensure cure.

Also, there are many of our patients with small cell lung cancer have lapses in supportive, you know, social support, and that’s something that we are working with. There’s also quite a bit of disparity when we talk about small cell lung cancer, and that’s been extensively published. So delays from screening to diagnosis to treatment.

Dr. Nicole Rochester:

Thank you so much, Dr. Seetharamu. So given those barriers that you just outlined for us, how can healthcare providers overcome those practice barriers to actually enhance care for patients facing small cell lung cancer?

Dr. Nagashree Seetharamu:

So I think there…I have a few ideas, a few suggestions. I think first and foremost, is to make sure that the screening program is well-adapted. We still see less than 10 percent of patients being screened, so that is something important. Hand in hand with that is tobacco cessation. So decreasing the incidence, early detection is number one and number two for sure. In addition to that, once patients are diagnosed and are presenting, you know, improving the, or having streamlined processes for diagnosis from the patients enter care to the time they start treatment, reducing the time to treatment is extremely important.

We are really kind of sitting on a time machine, you’re really trying to get things done in a very quick order. So streamlining the processes, whether the patient is in the hospital or presents as an outpatient. Lastly, making sure that clinical trials, if they’re available, making sure that patients are screened for it, making clinical trials available to patients, making criteria broader so that patients can be enrolled. And then ensuring that everyone within a particular health system or network is aware of recent advances, and patients get optimal care wherever they are located throughout the country.

Dr. Nicole Rochester:

Thank you very much. I’m going to turn to you, Ms. Sandy. As a nurse practitioner in this space, what is your perspective regarding the primary barriers to accessing effective patient-centered care for small cell lung cancer? And then similarly, what are some strategies that you believe can be implemented to overcome these barriers?

Beth Sandy:

Thanks, Dr. Rochester. I think Dr. Seetharamu covered a lot of the barriers really, it’s getting patients to treatment quickly. As we know, this disease is very aggressive. So, this is not a disease where a patient might say, “Well, I have a two week trip to Europe planned. I’d like to go there and then start treatment.” Actually, in non-small cell lung cancer maybe, but in small cell lung cancer, it’s so important to get them started very quickly on treatment because of the aggressive nature of the disease. And it is a very chemo-sensitive disease, so they may feel better very quickly.

One thing that we do in our practice is if we see that a patient is coming in who’s newly diagnosed with small cell lung cancer, whether it be extensive or limited stage, many times our nurse navigator is looking at this in advance and we’re pre-starting the chemotherapy before they even get there. Because many of these regimens are a three-day regimen, so we want to make sure that our next three days are available for infusion that we get this patient started right away.  So sort of looking ahead can be really helpful, especially if the patient’s coming on a Thursday or Friday, we’re not open generally on the weekends to give chemo, so we’ll make sure that we get them scheduled that following week. Again, getting these patients to treatment very quickly can help them feel better quickly.

Dr. Nicole Rochester:

Wonderful, thank you both. So I’m going to go back to you, Dr. Seetharamu. What are the gaps in current research regarding patient-centered care in small cell lung cancer, and how can these gaps be addressed?

Dr. Nagashree Seetharamu:

Yeah, I think I alluded to this a little earlier, but the…mean, this is kind of a pitch for funding agencies. I think the funding, first of all, it starts there. I think the funding that is available for other types of cancers perhaps is not so much for small cell. Despite decades of extensive research, we are still kind of stuck in the same regimen that we used to use decades ago, with a few modifications. So, first of all, novel treatment ideas, novel treatment regimens definitely can be hugely beneficial for these patients.

Secondly, it is also making sure that patients are actually able to get enrolled in the studies. A lot of these studies are overly exclusionary for reasons that it shouldn’t be. And, for example, if a patient receives a treatment as inpatient, like Ms. Sandy said, a lot of our patients get treated in the hospital, and they get excluded from the first-line regimens many times. So that’s something that can be accommodated. Clinical trials should be tailored around real world experience, not just based on what might be beneficial in preclinical models or some early experience. That’s the second thing.

Thirdly, I think small cell lung cancer, while we use the same term, I think it’s a heterogeneous disease. Using biomarkers to kind of stratify patients or subgroup patients, and then tailor regimens specific to, for example, when a transformed small cell lung cancer, when non-small cell lung cancer transforms to small cell, it’s still small cell lung cancer. From a histological perspective, it looks very similar, biologically it’s a very different disease. So I think it is important to kind of stratify or differentiate those subgroups and then create clinical trials that are more specific, you know, patient-centric like you mentioned. And I think lastly, mostly it’s important to make sure that the disparities are addressed. The socioeconomic disparities, racial barriers are addressed while we are talking about small cell lung cancer research. I think it should be an integral part of every clinical trial.

Dr. Nicole Rochester:

Absolutely. Thank you for highlighting that, Dr. Seetharamu. So, Sandy, we’ve been talking about the barriers that patients face with regard to treatment. Can you speak to some of the obstacles or barriers that are faced by healthcare providers with regard to treatment for small cell lung cancer?

Beth Sandy:

Yeah. Well, there are a couple ways to look at it. First, if you just look at a clinical trial perspective, sometimes it’s hard for us to enroll patients with small cell lung cancer for several reasons. You know, when we enroll in a clinical trial, a lot of times we need to wait for a slot to open. Well, we don’t have time to wait for a slot when they have small cell lung cancer. Again, it’s a very aggressive disease that’s rapidly moving. So we run into this barrier all the time here because they’ll say, “Well, I have a slot that opened up in three or four weeks or four weeks.” I don’t want to wait that long to treat my patient. So I think when we design these trials, we have to think about those kinds of things.

Another point of putting patients on clinical trials is a lot of trial ineligibility criteria is for patients with brain metastases, but in small cell lung cancer, we know that like up to 75 percent of them are going to develop brain mets over the lifetime of their disease. So it’s not really a real world trial if we exclude patients with brain metastases. So we need to design our trials in a good way.

There are a lot of other barriers that we end up facing. Some of the treatments for small cell lung cancer, especially a very new treatment that’s a BiTE therapy, a bispecific T-cell engager, is very hard to administer. It requires an overnight admission for the first two treatments, it has taken us actually a pretty long time to operationalize how we were trying to give this, so it’s not easy. And we finally have figured out how to give this, but this is a drug that holds a lot of promise for our patients, but it is hard for us to administer, and it’s hard for patients as well, because then they have to say, “Oh, I have to block off an entire day for this.”

So, some of these treatments are not easy. Most treatments for small cell lung cancer are not fancy targeted therapies that can minimize toxicity. These are chemotherapies that can cause nausea, fatigue, lowering of blood counts, the majority of the treatments. So if our patients aren’t healthy, robust, and able to deliver, or we can deliver the treatment, but they’re not able to handle the treatment, that’s also worrisome and can cause a barrier for us. So they’re not easy treatments. We need to really do our best to help support the patient and help figure out from an operationalization, there I made up a word, [laughter] but standpoint on how we can administer these safely, but in a quick, efficient way to these patients.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. So both of you have really done a great job elaborating the many barriers. The barriers that patients face, the barriers that healthcare providers face. Are there any tactical strategies or things that either of you or your institutions have done to actually address some of these barriers, some of the challenges that you all have mentioned?

Beth Sandy:

I mean, for us, our nurse navigator is huge. She is a dedicated lung cancer nurse navigator. She’s looking at these patients in advance, when they’re new patients and really trying to say, okay, if they have small cell, we need to get them in quickly. You know, if our new patient wait is two weeks, she’ll say, “Well, this one needs to be prioritized. We need to see them within a week.” She’ll say, “We need to make sure that we have the ability to treat them within a week. We want to really get on top of that quickly.” So that’s been, I think for us, one of the biggest helps with small cell lung cancer.

Dr. Nicole Rochester:

Wonderful. You have anything to add, Dr. Seetharamu?

Dr. Nagashree Seetharamu:

Yeah, I mean, it’s… similarly I think our navigator program is extremely helpful. In addition to that, I think, I know with the bispecific that was mentioned, you know, the tarlatamab-dlle (Imdelltra), we have a process in place, where it’s very streamlined, patients get admitted. The whole protocol is in place for admission and then subsequent treatment as outpatient.  With larger centers where there are multiple, larger institutions with multiple centers that might be a little smaller and not able to monitor patients while they’re receiving this treatment, we have adapted this approach where the first two treatments are given at the main hub, and that’s also been adapted by a few other institutions in the neighborhood where they refer the patients to us just for those first two infusions and when patients are settled and ready to continue the treatment, they’re able to continue it in a more community-based setting.

So that’s something I think that can be done in those regions where patients are referred to places where you can call hubs where these treatments can be initiated and then continued in their regional places so not to inconvenience the patients.

I think for this particular cohort of patients, social work involvement is extremely helpful, in addition to addressing the support systems, transportation assistance, financial support systems, and then involving palliative care early on has been something that has been extremely helpful. This is a multidisciplinary disease, despite that the majority of the patients are on systemic treatment, it is a multidisciplinary disease. We have multiple, we touch minor patients, touch multiple departments. And again, the role of nurse navigator is extremely helpful, because they can help make sure the patients are not inundated by these appointments.

Dr. Nicole Rochester:

Thank you both. Thank you very much for sharing that. So we’re going to shift a little bit and talk about strategies and innovations that may offer enhanced care for patients and families facing small cell lung cancer. We know that survival outcomes in small cell lung cancer remain challenging as both of you have pointed out, particularly for those with extensive stage small cell lung cancer despite incremental improvements in treatment strategies. For your colleagues that are watching this program, what are some strategies and innovations that may offer improved survival outcomes? Now I’ll start with you, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

I think having your group in place, identifying the providers that are dedicated to this disease. Making sure there are processes in place from early diagnosis through the treatments and seeing multiple providers is in place. Making sure that every treatment, there’s a pathway attached to it, there’s a protocol attached to it so that we are not scrambling last minute. Like Ms. Sandy said, it’s the same issue. It’s a three-day regimen. The first line, we want to make sure that, you know, the treatment starts. We are open on Saturdays too.

So, you know, it has to be Monday through Thursdays. You know, simple things as that may become very challenging. In patients with the brain metastases, making sure that they see the providers also in a very timely fashion. Sometimes the urgency may not be realized by other providers, because they’re not used to just seeing small cell lung cancer patients. Just making sure that that is communicated with teams. Yeah. I mean, just streamlining the processes as much as possible. Empowering the patients to understand their disease and making sure that they ask the right questions and be, you know, willful, you know, like complete participants, partners in the care, are some of the strategies that I can think of.

Dr. Nicole Rochester:

Thank you, Dr. Seetharamu. And certainly with this being in Empowering Providers to Empower Patients, we love that you included that, having the patients as partners. Do you have anything you’d like to add, Dr. Sandy…do you have anything you’d like to add, Ms. Sandy?

Beth Sandy:

You know, I think looking ahead for clinical trials, new drugs, it’s been really hard in small cell. We don’t have nearly the advances that we’ve seen in non-small cell lung cancer as far as any targeted therapies. Dr. Seetharamu talked about this earlier is that maybe we could figure out some of these different subgroups by looking at their pathology and seeing if some of them may respond differently to certain agents. I’m hopeful about some new drugs that are coming down in the pipeline.

There is an anti-TIGIT agent combined with immunotherapy that looks hopeful, that could produce some good outcomes. Combining immunotherapy drugs, combining them with chemotherapy, you know, potentially down the line we’ll see some of these drugs that will get approvals in small cell lung cancer and improve some of our progression-free survivals and hopefully overall survivals. So just continuing to enroll patients on studies. Have studies designed to fit this patient population, which we’ve significantly lacked in the past 30 years in small cell lung cancer.

Dr. Nicole Rochester:

Thank you. Thank you, Ms. Sandy. And you brought up the clinical trials, and so on that same topic, Dr. Seetharamu, do you have anything to add with regard to really improving access to clinical trials for patients with small cell lung cancer.

Dr. Nagashree Seetharamu:

Yeah. I think bringing clinical trials to the communities is perhaps the biggest way to do it. You know, patients with small cell, many can travel, but there are many that cannot.  So it’s important to understand that making it easier for patients to know what trials are available. Right now the options that we have, the websites that we have, it’s hard even for a provider to kind of navigate through it. Making it easier. Advocacy groups, you know, ensuring that patients are tied to advocacy groups, because they get a lot of information from these groups. It’s important. And I encourage patients to join these groups, because it empowers them and kind of unifies their voice.

There are clinical trials that are looking at doing labs at home or in their local centers, so they don’t have to travel all the way to the main center to get the labs done. That can be a huge help for patients. And again, making sure that clinical trials, when they’re designed, they are adaptable to real world, you know. And Ms. Sandy brought this up before, we don’t want trials that only address the cream of the…you know, like just a small proportion of patients. It should be really viable for the larger community. Yeah. I mean, these are some…I am sure there are many other things that can be done, but I think this would be a good start.

Dr. Nicole Rochester:

As we move to our final topic, I’m going to go to you, Ms. Sandy. We’re going to talk about outdated clinical approaches. How can interdisciplinary care teams and integrated care models be optimized to better address the specific needs and gaps in the management of patients? And what are some successful examples of these models in practice?

Beth Sandy:

So when I think of outdated clinical approaches, I think of things like older chemotherapy regimens or ways that we used to manage toxicity that have changed. So, for example, when I started doing this 20 to 25 years ago, we had two drugs, and that was it. There was nothing else really, and you could throw some other chemotherapies, but, you know, really now we have approved agents that have improved survival, so we need to make sure we’re using the right thing. And then I think the other flip side of that is our ability to manage toxicity. Again, we have much better ways to manage things like nausea, things like neutropenia, even fatigue.  We have better ways of predicting and managing these things now than what we used to have.  So we need to make sure that our supportive care is also maximized so that the patients can stay on treatment, because small cell lung cancer is one of the diseases where treatment is really important, that they’re getting as much of the chemotherapy as possible and on time.

Whereas in non-small cell lung cancer, I may be a little bit more, you know, okay with them taking a trip or being delayed or things. But because this is such a chemo-sensitive disease, it’s really important for us, if they want to be aggressive, to make sure that we are maximizing our toxicity management. Otherwise, they’re not going to be able to get these treatments.  And that’s gonna definitely worsen their outcomes. I think also is discussing goals of care with patients. And I think there’s been a big push in the past 10 years with the early palliative care integration into our lung cancer practices. This is another thing that’s really important here, that we are having real conversations with our patients about the goals of their care. With extensive stage small cell lung cancer, our average survivals are a year or two even with treatment.

So, you know, I don’t need to say to a patient on the first visit, like, you know, this is the exact numbers, because I don’t want patients to perseverate over, you know, exact numbers. But I also think it’s important to say, you know, this is something that we can’t cure, and we’re going to try to manage it as long as possible, but it’s an aggressive disease.  So, you know, what are your…what’s important to you? What are the goals that you would like to see? And that would give an open-ended question for patients to say, well, I’d like to be alive in 10 years for this. And when they say something like that, that might be an opportunity to say, well, I hope that that can happen, but I’m really worried with what we know about this disease, that that might not be, you know, realistic. So what do you think in the short term your goals are?

And that may be an open-ended question too, where they might say, you know, I don’t want to be sick or in the hospital. That’s really important that I’m at home, or that I can do this or that. So this is a disease where we’ve been really well-trained just in the past five to 10 years about how to have these discussions with patients that I would say 20 years ago when I started, we weren’t, I don’t think personally I was as good at having these conversations, and I don’t think we were as well-trained in the profession at this. And we found that this has been extremely helpful for a good patient-provider relationship as well as patient-centered care when they’re making decisions along with us.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And certainly as we talk about how to empower our patients, that shared decision-making that you talked about and incorporating goals of care is incredibly important. Dr. Seetharamu, do you have anything to add with regard to shared clinical decision-making or any other advances or things that address outdated treatment?

Dr. Nagashree Seetharamu:

Yeah, I can’t emphasize how important it is to have the goals of care discussion, but I think, you know, even though the treatment regimen has not changed for first-line much, there have been some nuances to it, right?  We are routinely including immunotherapy in first line. We now have some supportive care. Trilaciclib (Cosela) is something that we use for patients to help support and prevent admissions. These are things that may not be done, and there are some insurance barriers. Trust me, we are on the phone a lot of times that we shouldn’t be, you know, trying to get something approved despite clear benefit and FDA approvals. So, yeah, that’s a barrier that I should have spoken about, probably number one.

But that aside, I think, you know, that’s one thing that we see that is done a little differently in the community. I spoke about tarlatamab-dlle (Imdelltra). You know, many people just jump to different treatments because they just feel like it’s not…they’re not able to offer these newer treatments because of inpatient monitoring, what have you. So they may just start from a Platinum-etoposide to giving them, again, the same regimen or jumping to, you know, topotecan (Hycamtin), which we know that, you know, can…there can be better regimens than that. There are some newer agents that people may not…I’ve seen that in underutilization of some of the newer. We don’t have a lot of approvals in this space, but even the ones that have been approved, there’s relative underutilization of it. So I think education of providers in the community setting is helpful.

Dr. Nicole Rochester:

Thank you so much. Well, it’s time to wrap up our roundtable. I have learned a lot. I’ve really enjoyed this conversation with the two of you. And so now it’s time for closing thoughts. So I’ll go to you, Ms. Sandy, what would you like to be your takeaway message? What’s one of the most important things for our audience?

Beth Sandy:

I think one of the most important things is don’t write off your patients with small cell lung cancer. You know, it’s an aggressive disease. It can be hard to manage. They have a lot of comorbid conditions, but some of these treatments can work well, especially the newer agents. And so, you know, really working with your patient to keep them on therapy, but while at the same time understanding what their goals of care are and continuing that discussion throughout your patient-provider journey, and continuing to understand what their support systems are, what is important to them, and then that will help you and the patient make these treatment decisions along the way.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And what about you, Dr. Seetharamu, what are your closing thoughts?

Dr. Nagashree Seetharamu:

Yeah, I agree with Ms. Sandy on everything that she said. I think emphasizing the importance of multifaceted approach to overcome practice barriers, from reducing stigma and improving access to diverse patient populations, improving clinical trial inclusivity, and closing healthcare disparities perhaps are top strategies. And then, you know, for future, it’s just a call to action, you know, for improving funding for clinical trials and to also, you know, try to see if there are programs that can mitigate disparities that we see.

And then we spoke about stratifying patients, you know, making it a more personalized care, just as we do for non-small cell lung cancer these days with all the novel information that we have so far, and making sure that every patient, no matter where they are, who they are, receive optimal care that they should.

Dr. Nicole Rochester:

Well, thank you both again, Dr. Seetharamu, Ms. Sandy, thank you for this incredibly informative conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. I’m Dr. Nicole Rochester. Thanks for watching.


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Equity in Cancer Care: Accessing Lifestyle Medicine for All

 

How can ethical disparities toward equity in cancer survivorship be addressed? Expert Dr. Amy Comander from Massachusetts General Hospital discusses lifestyle medicine and methods and resources to help close disparities in optimal cancer care. 

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Transcript:

Lisa Hatfield:

Addressing ethical disparities in cancer survivorship is crucial for ensuring everyone has access to the best care possible. Is this a much bigger task than experts may realize? I’m getting to the bottom of it with a respected oncologist in this Patient Empowerment Network RESTORE program. 

Dr. Comander, how do you approach the ethical disparities in cancer survivorship interventions, and what steps do you advocate to ensure equitable access to lifestyle medicine and resources?

Dr. Amy Comander:

This is such an excellent question and definitely at top of mind all the time when I’m thinking about our lifestyle medicine program and the various offerings that we have at our hospital. How can we reach out to other communities that may not have access to these tools? For example, two summers ago, I collaborated with a colleague at a hospital in downtown Boston where they don’t really have as many survivorship resources for their patient population.

And we did some group education programs about lifestyle medicine. And I’ll just give you an example. We talked about exercise. And one of the women raised her hand and said, “In my neighborhood, I don’t feel comfortable going outside for a walk. So how am I really going to get this exercise in? I just can’t really walk around in my neighborhood.”

And I think learning from our patients about these concerns is so important. I will say that in that group setting, another woman raised her hand and said, “Well, I went to Target and bought these stretchy bands, and I learned how to do some of these exercises at home. And that’s what I do.” And that led to a really great conversation amongst the participants in the room.

So I do think this is really important. We do need to think about how can we bring these tools from lifestyle medicine to help all individuals facing a diagnosis of cancer. And certainly through the American College of Lifestyle Medicine, the organization that I’m very involved in, we do have an initiative called HEAL. Which is really focused on healthcare disparities and bringing tools from lifestyle medicine to all communities. So thank you so much for asking this important question.

Lisa Hatfield:

Okay. Thank you. You heard it here from Dr. Amy Comander. Thanks for joining this RESTORE Program. I’m your host, Lisa Hatfield.

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients from Patient Empowerment Network on Vimeo.

What are the barriers for rural patients hoping to access biomarker tests? Dr. Samuel Cykert discusses the barriers for underrepresented lung cancer patients in rural areas face in accessing biomarker testing, citing issues like health insurance, economics, and language.

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Transcript:

Lisa Hatfield:

Dr. Cykert, one of the main barriers preventing Black and Latinx patients with lung cancer in rural areas from accessing biomarker testing, and what steps can be taken to address these barriers, including improving awareness, affordability, and availability of testing facilities?

Dr. Samuel Cykert:

Yeah, great, great question. There are several issues here. One is the issue of rural, and the other issue is patients of color who may have barriers of health insurance, barriers of economics, barriers of education, and especially in the case of Latinx folks, barriers of language. So it really is a multiple question, but one thing for sure is we know from past studies that technology diffusion is slow and tends to get out to rural areas later than other areas, and the other problem is treatment volume in rural areas.

So a lot of rural hospitals don’t do bio specimen testing, don’t have the capability of doing that, and so you have this kind of double whammy of low volume testing plus low volume treatment, it’s well-known that surgeons who do more operations, for instance, do better. So given all those factors, I would recommend that rural patients who have presumptive diagnosis of lung cancer, even a suspicion of lung cancer, for instance, a large mass, a greater than 2 centimeter mass on an x-ray or a CT scan, that those patients ask to be referred to the closest high volume center.

I think that’s an important step, and we also have to have close interactions with our rural colleagues so that they’re comfortable of treating aggressively things that are well-treatable in the rural environment and going on to the high-volume centers, the more specialized centers, when things have to be done more aggressively.

When you look at a lot of different healthcare disparities, especially in advanced diseases, a lot of them come from being in areas where technology diffusion hasn’t happened and people don’t have access to the same treatments that they do at higher volume centers.  My activation tip here is, for things like biomarker testing and advanced treatments, you need to go to the closest high volume center.


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Enhancing Lung Cancer Care for Black and Latinx Patients | Tackling Challenges, Implementing Solutions

Enhancing Lung Cancer Care for Black and Latinx Patients | Tackling Challenges, Implementing Solutions from Patient Empowerment Network on Vimeo.

What are challenges and solutions to quality care for Black and Latinx non-small cell lung cancer (NSCLC) patients? Expert Dr. Samuel Cykert from UNC School of Medicine discusses challenges, solutions, and proactive patient advice toward quality care.

[ACT]IVATION TIP

“…for things like biomarker testing and advanced treatments, you need to go to the closest high volume center.”

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Transcript:

Lisa Hatfield:

Dr. Cykert, what specific challenges do Black and Latinx patients with lung cancer often encounter in advocating for themselves within the healthcare system, and how can they navigate these challenges effectively to ensure they receive equitable and quality care?

Dr. Samuel Cykert:

Yes, and in our past research we discovered that there are certain implicit biases and communication biases that affect patients of color, and because of that, I think it’s really important to approach the clinical encounter with cancer care decision-makers with enthusiasm, that meaning making a direct statement that I’m very enthusiastic about getting care for my lung cancer, I’m very enthusiastic about biomarker testing, tailored therapy, surgery and research protocols. So please consider me for all those results, and I know what I said was just a mouthful.

And even if you can remember to just start with, I’m very enthusiastic about getting treatment, and biomarker testing would be good and I’m positive about it, how do you feel about it? Engage the clinician in the conversation so they really know that you’re part of the team and they’re part of the team, and you’re ready to move toward excellent treatment and you’re willing to consider even research stuff.


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Roadblocks for Black and Latinx Patients From CAR T Trial Access

Roadblocks for Black and Latinx Patients From CAR T Trial Access from Patient Empowerment Network on Vimeo.

What are CAR T-cell therapy roadblocks for Black and Latinx trial access? Expert Dr. Sikander Ailawadhi from Mayo Clinic discusses barriers that have been documented in clinical research and solutions and patient advice for overcoming barriers.

[ACT]IVATION TIP

“…please seek out a specialist center that specializes not only in myeloma, but also in CAR T and in clinical trials, and even at that center, seek out the physician who has part an experience of participating in clinical trials.”

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Transcript:

Lisa Hatfield:

Dr. Ailawadhi, there is so much promise around CAR T-cell therapy, but barriers exist. Can you speak to the roadblocks that prevent Black and Latinx patients from participating in CAR T-cell therapy trials that you have witnessed?

Dr. Sikander Ailawadhi:

Lisa, this question about healthcare disparities and access to care, especially based on patient race ethnicity, it’s very near and dear to my heart. I do a lot of work around this and also a lot of research. Not just for CAR T, data has been very clear over years and decades that in multiple myeloma and frankly, in all cancers also. Clinical trial access is dismal when it comes to African Americans and Hispanic patients. Unfortunately, a lot of that data does not even exist about Hispanic patients.

But the publications are very clear with, so we’ve had one publication of ours, and then there has been one other from national data where FDA-approved drugs clinical trials were evaluated. And it was noted that while African American patients make up about 20 percent of the U.S. myeloma population, less than 5 percent of them participated in clinical trials that led to FDA approval of myeloma drugs.

I’m not saying that is specific for CAR T. In recent years when the CAR T trials were happening, the numbers have improved a little bit. They’re still not the same numbers representing myeloma population in the US, but some improvements happened, for sure. The barriers to getting onto CAR T and clinical trials related to such resource and time intensive treatments are multifactorial.

A lot of times they are sociodemographic, patients need to take time away from work. They have to have a caregiver, they have to have appropriate insurance approvals for certain things. They have to be able to go to a center that may be close to them. These centers are hopefully going to be able to bring some other resources like social workers, navigators, et cetera, to help that patient get onto the trial. And then there is sometimes lack of awareness of CAR T, lack of awareness of clinical trials per se, clinical, and there are fears, anxiety, scares around getting on clinical research.

Lots of barriers, I think we can systematically take care of mitigating them. I would again say, just as I mentioned previously in a different context, one simple way of trying to overcome barriers or at least making attempts to overcome barriers, is to get to a center that specializes in CAR T, that specializes in clinical trials and speak with an expert, a physician who has a clinical trial track record.

Patients can research all of this, and if that falls in place, I’m sure some of these access barriers and some of these disparities can be overcome. My activation tip for this question is, please seek out a specialist center that specializes not only in myeloma, but also in CAR T and in clinical trials, and even at that center, seek out the physician who has part an experience of participating in clinical trials.


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How Are Myeloma Therapies and Clinical Trials Becoming More Accessible?

How Are Myeloma Therapies and Clinical Trials Becoming More Accessible? from Patient Empowerment Network on Vimeo.

For underrepresented multiple myeloma patients, what actions are being taken to improve access to care? Dr. Sikander Ailawadhi from the Mayo Clinic explains factors that can limit myeloma care access and shares resources that can help patients improve their access. 

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Transcript:

Lisa Hatfield:

So the question is, myeloma treatment is expensive, with quadruplet therapy options, what measures are being taken that can help patients to have equal access, and I think that we can also add clinical trials to that too. Is there anything being done, or how can you encourage patrons to appeal access, whether it’s the drugs themselves or clinical trials?

Dr. Sikander Ailawadhi:

So absolutely, I think, Lisa, that’s an extremely important question as I mentioned, this area of healthcare disparity in healthcare, inequity, for example, is something I’ve spent a lot of time doing my research my career and publishing in this area. Unfortunately, in today’s day and age, we still have a lot of these disparities that exist, patients may not get access to the right drug or the  right time because of their geographical region, because of their insurance, their education status, socioeconomic status, and sometimes even in other…situations being similar, just their race and ethnicity. Age is an important factor.

Also, I would say there…I think the important part is that it is much more knowledge, awareness and intent to do something about it now, there’s, for example, in the forthcoming clinical trial that should be opening for really diagnosed patients across the country, soon through NCI and stab where the trial has been specifically designed to do it in as close to real world setting as possible, and when we were writing that child, there’s a specific racial, ethnic minority accrual plan that we are writing around it, and that’s not…I would say just that trial, there are trials that are now specifically going in trying to enroll patients as much as possible from the real world and all walks of life. 

And that’s it. I think the bigger question comes, like you started the question by asking the trials are there…we are trying to make a difference for trying to make some changes, changing the inclusion criteria so that patients would even now our accounts can go in, etcetera, etcetera. What about the drugs that are already available at quadruplet therapy, which is a pretty, I would say, demanding approach, because the patient needs to get multiple drugs multiple times, frequent visits back and forth to the clinic, co-payments office with its labs, etcetera. It’s not easy.

Unfortunately, there are certain groups within our society that would have difficulty getting those access, but there are lots of resources that patients and caregivers can access, and hopefully those…help share some of the burden. These are either from the pharma companies or they could be from foundations or societies like the The Leukemia & Lymphoma Society and several other such concerns whose goal is to try and provide an equitable and just access to the drugs and how to get the most evidence-based treatment to every single patient.

So there are quite a few of these efforts in our practice, what we strongly recommend is that the patients, of course, get this knowledge and information through support groups, through their physicians, but also searching for this information online or in a lot of the larger institutions, meeting with the social worker frequently helps gain access to our information about a lot of these resources. So I think a lot of work has been done there, but to bring it down to an individual patient’s level, how can I as a patient get access to something…

I think the patients will have to ask those questions either from their physician, their care team, a social worker, online resources, support groups, that information is out there, we are trying our best to get it to patients that hopefully patients can seek out some of that as well. 

Why Do Some Myeloma Patients Experience Chronic Kidney Disease?

Why Do Some Myeloma Patients Experience Chronic Kidney Disease? from Patient Empowerment Network on Vimeo.

What do multiple myeloma patients need to know about chronic kidney disease? Dr. Sikander Ailawadhi from the Mayo Clinic shares insight about incidence of kidney dysfunction, healthcare disparities, and the importance of timely myeloma treatment.

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Transcript:

Lisa Hatfield:

Why do some myeloma patients experience chronic kidney disease?

Dr. Sikander Ailawadhi:

So at least I think that’s a very important question. Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. And something that I work on quite a bit, and I’m interested in this healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment. Now, I mentioned that these…or we discussed previously that these plasma cells, that normally live in the bone marrow, they produce these proteins and these proteins, heavy chains, light chains are part of our body’s immune system.

But when these plasma cells become cancerous, they produce a higher amount of those abnormal proteins, these proteins circulate in the blood, and they frequently get depositing the kidneys. So when these proteins are very high in number, an amount, these proteins can circulate in the blood and clog up the kidney tubules, and that’s where some chemical reactions also happen and kidney damage can occur. When somebody gets diagnosed with myeloma and they have kidney dysfunction, we have the option of the opportunity to reverse that kidney dysfunction if we treat the disease appropriately and with the right kind of drugs fast enough.

In fact, there is some older data study data, which shows that within the first two months, we are able to reverse the kidney function, then it is no longer a prognostic significant marker. And it’s extremely important if somebody’s kidney function is getting affected by their myeloma, that they need to be treated very aggressively to try and solve it and save that kidney function because the longer the kidney dysfunction stays, it is quite possible that it may become irreversible.