Tag Archive for: Hispanic patients

What Are Myeloma Risk Factors for Veterans and First Responders?

What Are Myeloma Risk Factors for Veterans and First Responders? from Patient Empowerment Network on Vimeo.

Veterans and first responders may come into contact with myeloma risk factors, but what are they? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses environmental risk factors for 9/11 first responders and veterans, average age of onset for different veteran racial groups, and proactive patient advice.

[ACT]IVATION TIP

“…if you notice that anything is off, you’re not feeling well, or the lab, something is wrong with your labs, make sure to mention that to your physicians, they can first diagnose the correct thing, if something is going on. And two, if you actually have a diagnosis of cancer, I think talking to your teams that there are probably resources out there to help with a couple of things, I think one, even financial resources.”

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Transcript:

Lisa Hatfield:

Dr. Patel, a lot of patients wonder what might have caused my myeloma, and there are some environmental factors that are known to have the association with myeloma, like Agent Orange exposure, and now we’re seeing an increased instance of myeloma and other blood cancers in the 9/11 first responders. For patients who might have concerns about this, do you have any suggestions or thoughts on that?

Dr. Krina Patel:

Yeah, I’ve actually quite a few patients that come up to me that were in previous wars or veterans, and the first thing I talk about is the 9/11 first responders. So people ask me if this they’re born with myeloma, that’s the number one question, and I say, you know, likely not, most people do not have genes that they were given by their parents, that causes myeloma.

All of us have different susceptibility to cancer based on how our immune system repairs itself, how our plasma cells repair themselves, the micro-environment, but it’s also our exposures, and we know that there’s certain exposures like Agent Orange, as well as those first responders that went in here in terms of epidemiology, in terms of the number of patients that ended up with myeloma at a younger age, a much younger age. They’re in their 50s, for the most part, that tells us that this was not something that those folks are going to get. This really was based on that exposure, and that’s the hard part of saying that something causes something.

I think we know with 9/11, the numbers were so high that this was a…listen, this is something wrong, that whatever they were exposed to during that process led to their plasma cells becoming myeloma at a much younger age, and it seems that a lot of them had more aggressive disease than the indolent slow-growing myeloma.

We see that a lot of patients get. The other big question I get is, How can we say that something caused this, and then again, it comes back to how many people are exposed and then how many people actually got that disease, and that’s why it becomes so hard. But I know a lot of my patients think about Roundup or different petrochemicals and things like that that they’ve been exposed to, and I know that the government and folks are looking into it because a lot of my patients are getting letters from us and things like that just to say, “Listen, I was exposed to this, could this have caused my myeloma?”

And again, the majority of patients are not exposed to things at that level that really tell us that that’s what caused their myeloma, but I do think that if you are exposed to something like Agent Orange or major petrochemical spill or something that is worthwhile noting at least, even though I most likely won’t be able to tell you it definitely caused the myeloma. We do know that there are environmental exposures that are more likely to lead to cancer, you know, we have these hot spots in the U.S. where especially those petrochemical companies are, where there’s a much higher level of just cancer diagnosis, not just myeloma up to cancer in general, compared to other areas where we don’t have those industrial companies existing.

Lisa Hatfield:

Do you happen to have any tips for patients who maybe were a part of 9/11 event or even veterans or first responders of any type, any tips for them in general?

Dr. Krina Patel:

Yeah, I think that the activations have here is that if you notice that anything is off, you’re not feeling well, or the lab, something is wrong with your labs, make sure to mention that to your physicians, they can first diagnose the correct thing, if something is going on. And two, if you actually have a diagnosis of cancer, I think talking to your teams that there are probably resources out there to help with a couple of things, I think one, even financial resources.

When stuff like this happens, usually there are some financial resources that pop up, and two, the mental aspect of this. You got this while you’re doing something you’re supposed to be doing and helping others, and really finding patient groups which are out there as well, so that you get the resources for just the ability to talk to someone about what happened and being able to go through that process as well.

Lisa Hatfield:

Dr. Patel, are there any notable trends or patterns of the presentation and progression of myeloma and other blood cancers in veterans and first responders that differ from civilians?

Dr. Krina Patel:

Yeah, that’s a great question. I honestly don’t know if there’s been anything published that shows a difference, I tend to see my veterans are a little bit younger in general, average age for myeloma, 70 for Caucasian patients, it’s 65 for Hispanic patients and 66 for African American patients, right? So a lot of my veteran patients have been in their 50s, just a little bit younger than what I’ve seen with most other patients, and then in terms of patterns, not necessarily.

We think, oh, is it more aggressive? Is it not. I do have patients with aggressive disease, but I have patients that come in with MGUS or smoldering disease that eventually turns into myeloma isn’t necessarily high risk or aggressive, but again, I don’t know any data that’s out there that’s published, I think that would be worthwhile. But I will say my patients tend to be on the younger age.


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Equity in Action | Addressing Biomarker Disparities in Lung Cancer

Equity in Action: Addressing Biomarker Disparities in Lung Cancer from Patient Empowerment Network on Vimeo.

How can biomarker disparities be reduced in lung cancer patients? Experts Dr. Joshua Sabari from NYU Langone and Dr. Eugene Manley from SCHEQ Foundation discuss approaches that are being used for community engagement and further interventions that can be used to reduce disparities.

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Transcript:

Lisa Hatfield:

So, Dr. Manley, are there any promising approaches or interventions aimed at reducing biomarker disparities that you’ve currently been exploring or are advocating for?

Dr. Eugene Manley:

I will take several angles on this. One thing is there has to be much more community engagement and involvement and really going to community groups, whether they’re faith-based, whether they’re barbershops, really going out where people are and letting them know about lung cancer, lung cancer disparities, biomarker testing, what you can do. The other way is also going to conferences where there are more diverse scholars that are attending. So a lot of these are STEMM meetings. They may not be specific in lung cancer, but if you can go out there and get the word out about lung cancer and the disparities, then they can go back to their families and talk about, you know, screening and testing and making sure that their family members are aware.

And then, you know, we just published a paper recently that shows the upstream part of biomarker testing is where are we starting at with our cell line? We just did a review of all the lung cancer cell lines. Of over 800 cell lines, majority were European-based. Only 31 cell lines in total were from Black African American populations. None were from Hispanic, none were from Native American, Pacific Islander, none from Alaska Native.

So just think about this. If that is our starting material for all of our biomarker testing and TCGA and databases, then everything we’re developing is on a population that already has great access and outcomes. But they don’t have the greatest disparities. So then you’re getting through doing all these trials, and then you have biomarkers, and you have immunotherapies coming out, and then you’re seeing adverse events in these diverse populations at the end because you don’t have the starting material.

Lisa Hatfield:

And, Dr. Sabari, after hearing Dr. Manley’s comments about that, how do you…or do you know of any approaches or interventions that are aimed at reducing these biomarker disparities? Because maybe they aren’t being acknowledged yet. Maybe they’re only being seen in certain populations.

Dr. Joshua Sabari:

Yeah, I think Dr. Manley hit it on the head. First off, we don’t even know the correct or true numbers for certain mutations in specific patient populations. And I just read an article about patients from Latin America, different rates of EGFR, ALK, and other mutations. You can imagine a study population from Africa, for example. And then obviously studying a population of Black Americans here in the United States as well.

We know that most of the cell lines, most of the data that we’ve had, particularly TCGA  (Tumor Cell Genome Atlas) is from a Caucasian or North European patient population. So I think we need to do better in that sense. I think equally as important, are clinical trial enrollment needs to diversify. Again, it’s mostly women. It’s mostly Caucasian women. We have very, very low rates of Hispanic patients enrolled on clinical trials, Blacks enrolled on clinical trials.

So I think we need to do better in that sense. One thing that we’ve really pushed for in academic medicine is to at least report who is being enrolled on trials so that we can understand is this data generalizable to my own clinical practice? And oftentimes if you look at the clinical characteristics of patients enrolled on the trial, it likely does not match what you see in your own practices.

So we need to do better in that sense. So I think the FDA, and especially pharmaceutical companies, are clearly looking to expand and broaden their inclusion criteria and also access to patients so that we can actually have a more diverse patient population that represents our country enrolled on these trials.


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Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

For early stage lung cancer treatment, what are root causes of racial disparities? Expert Dr. Samuel Cykert from UNC School of Medicine discusses key findings from UNC research and proactive advice to patients to help reduce disparities.

[ACT]IVATION TIP

“…even in advanced disease, there are some excellent responses to these therapies, so getting back to what do I say to patients, don’t feel doom, be enthusiastic about, I really want treatment. I really want to go ahead and see what you can do for me. And even if that involves research testing and protocols. So enthusiasm is important. And the other thing that’s important is, again, because of some of these implicit biases I mentioned, actually asking positive questions to the clinicians and staff saying, I feel really good about going ahead and doing what I can do, how do you think I’ll do? Enlist them as part of your team, get rid of their gloom and doom too.”

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Transcript:

Lisa Hatfield:

Dr. Cykert, could you elaborate on the key findings or insights uncovered by the UNC research team regarding the root causes of racial disparities in the treatment of early stage lung cancer patients, and also …how do these findings contribute to our understanding of healthcare disparities and inform future interventions in lung cancer?

Dr. Samuel Cykert:

Yeah, and first of all, I want to make a statement up front that in doctor’s treatment of lung cancer and other cancers and other chronic diseases, there is not malevolence here, okay, because doctors go to medical school, the vast majority go as idealists, and so I think it’s really important not to place blame here, but there’s a way that the system is set up, both in terms of health insurance, economics, other socio-demographic factors, where people of color are disadvantaged.

And then you add to that an element of implicit bias, we all have implicit bias, different kind of implicit biases, and in a study that we published in the Journal of the American Medical Association in 2010, we showed that clinicians who take care of lung cancer tend to not want to take risks on patients who aren’t like them, who they don’t feel comfortable communicating with, and so Black patients who had two or more significant comorbidities at the time of surgery virtually never got lung cancer surgery, whereas white patients with two or more comorbidities still did.

So a lot of that had to do with the clinician side of thinking, well, I don’t know if, I mean, you’re kind of sick to start with, and I don’t know how well you’d do, and so the clinician isn’t aggressive in explaining things about surgery and pushing toward surgery, where with a patient that’s like them, when there’s a family member in the room saying, “Doc, Doc, what are you going to do about dad’s cancer?” Then in those cases, the clinical decision making is more aggressive, and so that was a big thing, and another thing that we discovered is if Black patients felt that the shared communication, that the discussions were poor, they were much, much more reluctant to go to surgery, so there’s a communication thing, making sure that people are understanding each other.

And you have to remember a lot of times when people hear the word cancer, they automatically shut down and they start listening, and then on top of that, if the communication and the connection is poor, then the listening and discussion is even worse, so those were two big areas where we found that Black patients were disadvantaged even beyond the socio-economic stuff. As far as interventions go, based on that, based on two things, based on that 2010 trial and based on a community group that I’ve been a part of through the years called the Greensboro Health Disparities Collaborative in Greensboro, North Carolina, that community group has pointed out three ways to overcome disparities in cancer and other medical care.

One way is real-time transparency. When you think about it, all the studies that show disparities in cancer are studies that look at data that are four or five or six years old. Well, if you have cancer and the data are four or five, six years old, if you don’t act on it, you’re dead, and so we need to use real-time data, and there’s no reason we can’t do that today with electronic health records and all the digital data floating around health systems, we can create real-time registries in order to take better care of cancer patients. So that’s one thing.

The second thing that the collaborative pointed out was accountability, I mean, the primary care doctor can’t say, well, it’s the oncologist. The oncologist can’t say, well, it’s the surgeon. The surgeon can’t say, well, it’s the radiation oncologist and the primary care doctor. We can’t diffuse responsibility. We have to have accountability. And so the way we put together accountability in our intervention is we gave feedback to the cancer care teams, and we not only said, this is how well you’re doing with patients completing surgery and patients completing their other treatments, we break it down by the disadvantaged group, so we say, here’s how your white patients are doing, here’s how your Black patients are doing, here are how your Hispanic patients are doing.

Whatever the disadvantaged group is, we compare. And the other great thing about doing that is when you get, for instance, quarterly quality data about how you’re doing with treatment in different groups, you can sit in the room and you can start saying, well, what’s going on here, why are these differences existing? And in one of our studies, for instance, Cone Health in Greensboro noted that in one particular geographic area, transportation was horrendous and patients missed a bunch of appointments, and then they created their own transportation van when scheduling appointments, and the disparity went away, that was based on the transportation problem. Okay? So by looking at those things in real time, you can iterate and decide how you’re going to fix that. So that’s the second thing, accountability.

And the third thing that the group brought up was communication. Doctors often talk in medical jargon. Patients don’t understand. Patients don’t understand and they interpret the conversation in the wrong way. That fosters mistrust, and also, you have that idea that I mentioned earlier, that patients don’t process things after they hear the cancer word, and so instead of just communication right now in this acute setting, you need engagement and re-engagement, and that’s where we brought in a specially trained navigator who was aware of these communication problems, who was aware of particular problems that might affect patients of color, and that navigator would use that knowledge to engage and re-engage patients over time, to bring them back into care.

And just going back to one of my earlier points on real-time transparency, in our studies, we actually built a real-time system where we followed patients over time, and if a patient missed an appointment, an automatic warning would come up that said to the navigator, you need to re-engage the patient, but the other thing we did to deal with implicit bias and clinical inertia is we set time limits in the system.

So if care wasn’t progressing the way we thought it should progress on a time scale that was actually established by medical stakeholders in that community, if, for instance, if the patient didn’t get a follow-up visit or a test within 30 days, bam, a warning came up. If the patient didn’t get a biopsy within 60 days, a warning came up. If they weren’t scheduled for surgery or definitive care within 60 days, a warning came up.

So we not only engaged the patient when the patient was missing, but we engaged the clinical team and said, did you really mean for these delays to happen? And with our intervention, in terms of completing care, we went at baseline from 70 percent, compare completion, 70-ish percent for white patients, compared to 60 percent for Black patients, to almost perfect care for everyone. In over 300 patients, it was 95 percent and 96 percent completing their care. So that was just a phenomenal improvement because we had real-time transparency, accountability and communication.

Lisa Hatfield:

Those are incredible statistics on how you can build this system to help eliminate some of those disparities in healthcare. Would you have any activation tips from the patient perspective? I mean, you explained this so well, do you have any tips for patients?

Dr. Samuel Cykert:

Yes. I mean, patients…first of all, patients are in a situation where lung cancer, the narrative around lung cancer over time has been one of nihilism and doom. And people think once I have the diagnosis of lung cancer, I’m dead and there’s nothing I can do about it. Well, in early stage, non-small cell lung cancer, the cure rates have gone up, especially with adjuvant chemotherapy, and now it looks like it’s going to happen with some neoadjuvant biological and chemotherapy, so things are getting better and better.

And even in advanced disease, there are some excellent responses to these therapies, so getting back to what do I say to patients, don’t feel doomed, be enthusiastic about, I really want treatment. I really want to go ahead and see what you can do for me. And even if that involves research testing and protocols. So enthusiasm is important. And the other thing that’s important is, again, because of some of these implicit biases I mentioned, actually asking positive questions to the clinicians and staff saying, I feel really good about going ahead and doing what I can do, how do you think I’ll do? Enlist them as part of your team, get rid of their gloom and doom too.


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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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How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

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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AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups

AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups from Patient Empowerment Network on Vimeo.

What factors contribute to AML diagnosis disparities? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses disparity factors in underrepresented patient groups and patient advice for newly diagnosed AML patients.

[ACT]IVATION Tip

“…I would recommend that they take notes of their conversations with their providers, that they include through their caregivers, family members, and conversations about the care, bring them to visits. There is a lot to learn in the process of an AML patient. And it is all right to ask questions again and again. It is encouraged to ask questions until their understanding of what is going on and what the plan is. Patients really are their best advocates or should be their best advocate and should never assume.”

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How Do AML Patients and Outcomes Differ by Population Groups?

How Do AML Patients and Outcomes Differ by Population Groups?

Transcript: 

Lisa Hatfield:

Dr. Taveras, are there differences in the stage of AML at diagnosis between underrepresented compared to other racial and ethnic groups, and if so, what factors contribute to these disparities?

Dr. Sara Taveras Alam:

So when we think of cancer stages, we usually refer to stage I through stage IV. Stage I being the cancer is localized to where it started, for example, breast, lung cancer, just in that breast, just in that lung, small and as things spread farther and farther from where they started, then you have stage II, stage III, stage IV, so for AML, it is a blood cancer, so technically, it’s all through our body, since our blood goes through the body.

There may be patients that present with no complications from their AML, and we’re assuming that they present it properly from when their diagnosis, from when their disease started. And other patients that may present with some complications from their acute myeloid leukemia already, so there the assumption is that acute myeloid leukemia has been ongoing for some time, but it is really hard to really determine when the acute myeloid leukemia started unless the patient had been undergoing very frequent blood work previously.

We do know that patients who are Black tend to present with AML at a younger age, and we’re not sure what factors contribute to that. We also know that they may be at higher risk of complications during treatment as our Hispanic patients.

We also know that their diseases may be more resistant to treatment and associated to mutations that are more aggressive. So those are the factors that contribute. 

A lot goes into the treatment responses for our patients, and we want to achieve a remission and maintain a remission, and these patients require frequent healthcare visits and they may have barriers to that, depending on their work, childcare, transportation, there may be many barriers for these underrepresented patients that they themselves don’t feel as though the healthcare team needs to know about, but it is very important for us to know about these barriers so that we can do our best to address them and the patient can receive the care that will ultimately give them the best chances of survival and response to treatment.

Lisa Hatfield:

Dr. Taveras, do you have any general tips for patients who receive a diagnosis of AML?

Dr. Sara Taveras Alam:

Yeah, so for any patient with a new diagnosis of cancer and especially acute myeloid leukemia, I would recommend that they take notes of their conversations with their providers, that they include through their caregivers, family members, and conversations about the care, bring them to visits. There is a lot to learn in the process of an AML patient.

And it is all right to ask questions again and again. It is encouraged to ask questions until their understanding of what is going on and what the plan is. Patients really are their best advocates or should be their best advocate and should never assume. They should ask when they don’t know what the plan is or when they want to make sure that things are going in the right track.

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AML Clinical Trial Participation Disparities | Impact on Access, Outcomes, and Inclusion Strategies

AML Clinical Trial Participation Disparities | Impact on Access, Outcomes, and Inclusion Strategies from Patient Empowerment Network on Vimeo.

What are AML clinical trial disparities, outcomes, and solutions for inclusion? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses patient factors that impact access, underrepresented patient groups, and patient advice for improving clinical trial access. 

[ACT]IVATION Tip

“…inquire if there are clinical trials available at the institution where you’re being cared for, not all institutions do have clinical trials available, and that is okay, but you should be informed and given the opportunity to look into other facilities if clinical trials are available and have the ability to do so.”

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Transcript: 

Lisa Hatfield:

Dr. Taveras, so this is kind of a three-part question regarding disparities in acute myeloid leukemia. So what are the disparities in clinical trial participation among AML patients, and how do these disparities affect access to innovative treatments and outcomes, and then kind of a third part to this question, how can efforts be made to increase diversity and inclusion and clinical trials for AML? 

Dr. Sara Taveras Alam:

Thank you. This is a very important question. Unfortunately, disparities exist in the outcome of AML patients based on different factors, social-economic factors, racial factors, ethnicity, and unfortunately, it has been proven that in clinical trials, the non-Hispanic white population is the predominant population study, so unfortunately, our African Americans or Black patients and our Hispanic patients are underrepresented, and this may impact whether or not the treatments that are getting put, being studied and being utilized in AML patients are appropriate for these patients who were not included on the clinical trials.

I do see that there is an intentional effort to recruit patients from minority groups in institutions where trials are available; however, one caveat is that unfortunately, some of those underrepresented populations don’t necessarily have access to the institutions that are leading the clinical trials. I’m in Houston, and we actually have a county system here in Houston, where leukemia trials are available, and that is really a blessing, because it’s not something that is very common. So throughout my training, when I did go to a county hospital, I was able to see Hispanic patients and African American patients being given the opportunity to participate in clinical trials that may impact the long-term treatment of other patients and those treatments being studied in the population that was using them.

My activation tip for this question is to inquire if there are clinical trials available at the institution where you’re being cared for, not all institutions do have clinical trials available, and that is okay, but you should be informed and given the opportunity to look into other facilities if clinical trials are available and have the ability to do so.

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How Can Myeloma HCPs Overcome Unforeseen Practice Related Barriers?

How Can Myeloma HCPs Overcome Unforeseen Practice Related Barriers? from Patient Empowerment Network on Vimeo.

What are some solutions to myeloma patient care barriers? Expert Dr. Craig Cole from Karmanos Cancer Institute discusses barriers and solutions he has encountered with his patients and how patient comfort levels with clinical trials have improved.

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Transcript:

Dr. Nicole Rochester:

Dr. Cole, I’m going to turn the conversation back to you. As a physician, I know that often, there are some barriers just as part of our everyday practice that can hinder our work. And so I’d love for you to speak to any unforeseen or outdated practice related barriers that you feel may hinder your work, and the work of your colleagues specifically as it relates to myeloma trials. And then if you could also share some potential solutions to those barriers.

Dr. Craig Cole:

Yes, super good question. I love this question. There are a lot that are out there that I…barriers that I hear providers talk about at other academic centers and in the community. One is that patients don’t want to go on clinical trials that they…and some of that is subconscious bias. Sometimes those are true, true bias. We know the FDA knows all the drug companies all, and I think every myeloma provider knows that there have been horrific disparities in the enrollment of patients in clinical trials based on race and age and ethnicity that the FDA looked at some of the data of trials that were going for FDA approval, and found that over the past 10 years, and that in those trials, that only 4 percent of the population of the trials were Black.

While in the United States, the number of Black myeloma patients is about 20 percent, over 20 percent of the myeloma population. So that’s a huge disparity. And what I hear is that while older patients and Black and Hispanic and Asian patients don’t want to go on clinical trials, and that’s not true. That’s been shown in multiple clinical trials that actually, the patients of different ethnicities and races actually are more likely to go on clinical trials than other racial groups. And so I think that it’s really important to keep that in mind that patients really…that really the ownership of getting a patient on a clinical trial is really on us to present the clinical trial option to them with every single conversation that we have.

Some of the other barriers to clinical trials is, and Ms. Gleason had mentioned this, what they do at through the Emory system is that, well, the nurses and the other staff in the cancer center aren’t aware of the clinical trials, that when a patient goes through the clinic, they talk to more than just the provider. They talk to the treatment nurses, they talk to the intake people, they talked to the MAs, they talked to the scheduling people.

And there was a study that was done a few years ago in looking at patients who were given consent forms and declined clinical trials. And they found that a lot of patients declined clinical trials, well, because they said that, well, their doctor didn’t want them on the trial. And when they looked further into that, they saw that, well, the doctor offered them a clinical trial, but when they discussed the clinical trial with a nurse practitioner, when they discussed that trial with a treatment nurse or the MA or any of the other staff, when they didn’t know about the clinical trial, that was considered well, if you don’t know about the clinical trial, it must not be good for me. And then they withdrew from the trial.

So just like what they do, what Ms. Gleason had said, we have an all-in approach. We make sure that the treatment nurses, the MAs, the intake people know what we’re doing, know about our clinical trials, because that’s the fun part about what we do. The fun part is when we say, look, my goodness, this four-drug therapy had a 100 percent response rate. That shouldn’t be left in the physician compartment. It really shouldn’t be left in the provider compartment. That excitement should be clinic-wide. And when you have that all-in approach where everybody’s involved, everyone’s excited about clinical trials, it produces a culture of clinical trials that everybody wants to be part of, and the patients then can jump on that bus and feel comfortable participating in the trial.

Dr. Nicole Rochester:

Wow. Thank you for elucidating that. Both the issue of the health disparities that we see in clinical trials and the need to diversify that clinical trial patient population, some of those biases that exist, as well as really lifting up this idea of creating a culture of clinical trials.I love the language that you use for that and the idea that everyone throughout the entire clinical encounter needs to be both aware of, and excited about the clinical trials that are underway. 


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