Tag Archive for: Dr. Eugene Manley

Dr. Eugene Manley: Why Is It Important for You to Empower Patients?

Dr. Eugene Manley: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Drawing from his experiences interacting with patients, survivors, and caregivers, Dr. Eugene Manley emphasizes the significance of providers meeting patients “where they are” emotionally, mentally, and logistically.

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Transcript:

Dr. Eugene Manley:

So, you know, I talk to patients here and there and I’ve talked to survivors and I talk to caregivers of families, of people that have had family members that have, unfortunately, passed away from lung cancer. And the key thing they always say is they, you have to meet people one where they are and not where you want them to be.

So that means you have to really listen to what they need and say break down the jargon, be comfortable, ask, answering the questions because the patients don’t know any of this stuff when they go in. And pretty much when you are hit with a cancer diagnosis, there are 10 other thoughts going through your mind beyond just the cancer. 

Like, how am I going to pay for rent, food? Can I tell my family? Do I…will I lose my job? Will I lose my insurance? There are many, many other thoughts, and then it’s like, well, how much time do I have left? And then that’s where you even start thinking about, okay, what are my options? So you have to really walk with them.

I think a key part in this that we often don’t have are those nurse navigators are really, really key in this stage is they help really translate and walk the patient from dealing with the clinician into all the stuff that’s going to be going downstream. So just really, really critical to listen to the patients and try to have that ear and really think what’s in their best interest and not dismiss them.

How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities

How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities? from Patient Empowerment Network on Vimeo.

How can biomarker disparities be overcome by data collection? Experts Dr. Joshua Sabari from NYU Langone and Dr. Eugene Manley from SCHEQ Foundation discuss the status of biomarker data sharing, biobanks, and improvements that can be made toward the future.

Download Resource Guide  | Descargar guía de recursos

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Hope Unleashed: Advancing Therapies for Defiant Mutations in Lung Cancer

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Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer

Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer

Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help

Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help

Transcript:

Lisa Hatifeld:

Are there any national or international databases that collect information from those biopsies, like a biopsy data bank of some kind so they can look at this disparate group of mutations? Or is it just institutional, like if an institution collects that tissue, they keep that information? I’m just wondering if that could help in any way with the disparities we see in those biomarkers.

Dr. Joshua Sabari:

Yeah, it’s a great question. AACR American Association for Cancer Research, a nonprofit, has started a biobank called the Genie Biobank, where you can input clinical as well as genomic information from patients. But to be honest, it’s very scattered. I mean, most of the databases that we have are individual institutions. There is very little sharing of data from institution to institution. There’s very little sharing of data from pharmaceuticals to institutions and vice versa.

I think everybody really needs to work in and pitch in together here that this is a common theme that comes up at a lot of our national meetings is how do we get everyone on the same page as opposed to everybody working in their different silos. It would be very helpful if all genomic data at every institution was available to everybody, but you can understand how that could be both confidential as well as proprietary. So, unfortunately in 2024, we don’t have broad biobanks or databases that are available publicly for consumption of investigators.

Dr. Eugene Manley:

And I think on top, beyond there not really being a massive biobank, there are still differences in what we can capture in race/ethnicity in the U.S. versus Canada and Europe. Sometimes they don’t even consider race as a category, which sometimes people think race is a social construct, but at the same token, there are distinct disparities we see in the U.S., because we capture this data, and it’s hard to then do this globally when we aren’t able to capture all it does.

But if you think about it, if you look across there are even genetic differences across each of those countries, we just don’t routinely think about it. So it’s really, we need to work on developing one, but it takes time, money and groups willing to work together, and we just, unfortunately, are not there yet.


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Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help

Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help from Patient Empowerment Network on Vimeo.

How can lung cancer research and precision medicine help with biomarker disparities? Experts Dr. Joshua Sabari from NYU Langone and Dr. Eugene Manley from SCHEQ Foundation discuss testing factors that need improvement, patient groups that show disparities, and how clinical trial participation can move research forward.

[ACT]IVATION TIP

“…we really have to more universally test everyone equally to really have an impact on outcomes.”

Download Resource Guide  | Descargar guía de recursos

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Hope Unleashed: Advancing Therapies for Defiant Mutations in Lung Cancer

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Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer

How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities?

How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities

Transcript:

Lisa Hatifeld:

So, how can advancements in precision medicine be made more inclusive and equitable to ensure that biomarker-driven treatments benefit diverse populations equally? Second part is, what do you see as the most pressing research priorities in understanding and mitigating these biomarker disparities?

Dr. Joshua Sabari:

So I think first and foremost, testing is key. I mean, educating clinicians, healthcare providers, that every single patient, no matter what clinical characteristic that may be, age, sex, ethnicity, race needs to be tested broadly with the same mutational sort of profile or same biomarker profile. Having somebody in your office who never smoked, those patients generally will have broad panel and next generation sequencing. If you have an 85-year-old patient who is a former heavy smoker, the rate of mutational testing comes down.

So I think we need to remove that bias, that those clinical biases that we have, that we carry with us on a day-to-day basis. We need to test all patients with lung cancer regardless of any clinical characteristic. And what I tell my fellows, my residents, and what I talk to patients about is really all you need is lungs to develop lung cancer.

We need to remove that stigma and when we remove that stigma, we will be testing more broadly in our practices. There are also a lot of systemic biases, a lot of racism that exists, that prevents clinicians, I believe, from doing the best thing for their patients. And if you look at clinical trial enrollment in this country and that’s something that we do need to improve in order to develop better treatment options for our patients, particularly our patients of Latin American descent or Black Americans in the United States.

We need to enroll more patients of more diverse backgrounds onto our trials. Otherwise, we’re only limiting our treatments to specific or small percent of our patient population. So to be honest, I don’t know how well our EGFR inhibitors work in Black patients. I know it’s approved and we utilize it, but we don’t have nearly as much data prospectively treating novel therapies.

A lot of our trials have inclusion rates as low as 2 percent to 3 percent. And we know that our Black patient populations make up 13 percent to 15 percent of our practices. So I think more needs to be done to align our enrollment on trial, I think from institutional policies as well as governmental. So the FDA has really made a forceful statement here to pharmaceutical companies that if your data is not inclusive of a U.S. patient population, this will have ramifications for approvals in the future.

So a lot needs to be done in the sense of education both from the healthcare provider and…but also from the patient, and to really motivate patients to enroll in trials. And one positive that I’ve seen from the patient support groups, the advocacy groups, particularly EGFR Resisters Group, for example, we’ve seen a tremendous sort of push for patients to enroll on trials, again, to benefit themselves as an individual patient diagnosed with EGFR mutant lung cancer, but also to help those who come before or after them in their journey with lung cancer.

Lisa Hatfield:

And, Dr. Manley, do you have anything to add to that?

Dr. Eugene Manley:

I think he hit most of it, but I will say that you have to test everyone because there are people that have risk factors for lung cancer and those that don’t. And like, one of the leading risk factors is history of smoking, but there’s a significant population of specifically Asian females that don’t smoke. Even recently, that have been showing that Black women that don’t smoke also have increased rates of lung cancer. And these are, we don’t know why.

So we still need to be able to test all these patients across all the indications and maybe cross-reference with stress income, socioeconomic status and really try to determine maybe if there are certain specific drivers and what we didn’t talk about. We know that there are some epigenetic changes that may occur due to stress. We also know that there are some changes in tumor mutational burden, some stuff out of MSK. And I think there is some stuff that even shows differences in the immunomarker frequency and response in Black populations. So, we really have to more universally test everyone equally to really have an impact on outcomes.


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Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer

Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer from Patient Empowerment Network on Vimeo.

How can biomarker disparities be minimized by lung cancer partnerships? Expert Dr. Eugene Manley from SCHEQ Foundation discusses individuals, lung cancer partnerships, and how partners can work collaboratively toward improved biomarker disparities and health outcomes.

Download Resource Guide  | Descargar guía de recursos

See More from [ACT]IVATED NSCLC Biomarkers

Related Resources:

Hope Unleashed: Advancing Therapies for Defiant Mutations in Lung Cancer

Hope Unleashed: Advancing Therapies for Defiant Mutations in Lung Cancer

Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help

Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help

How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities?

How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities

Transcript:

Lisa Hatfield:

Dr. Manley, how can partnerships between researchers, healthcare providers, community organizations, and policymakers be leveraged to address biomarker disparities and improve health outcomes for marginalized groups?

Dr. Eugene Manley:

I think partnerships are key to really moving the needle across the whole spectrum. You need the patient advocate groups, which are patients, caregivers, survivors. You need the researchers that are doing the studies. You need the physicians, researchers, surgeons that are doing the treatment surgeries follow-up. You need the histologists that are doing imaging and staining. And so, and then you need to really have an activated ecosystem that can really use stories and storytelling to translate this information to those that are writing policy. Because policy usually only gets changed through strong stories.

So you have to tell the story of your lung cancer, your diagnosis, your journey, and how…what did and didn’t work. And then the compelling story is usually what get laws passed. Often the use of webinar series where you have patients speaking about their experience are way more impactful because then they’re really bringing their life story to that journey. And that’s really key. So I think the partnerships at all levels are important, but you all need to be on the same page with what you’re trying to do and who you’re trying to impact.


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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.

Download Resource Guide  | Descargar guía de recursos

See More from [ACT]IVATED NSCLC Biomarkers

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Understanding Non-Small Cell Lung Cancer: Types, Biomarkers, and Treatment Insights

Understanding Non-Small Cell Lung Cancer: Types, Biomarkers, and Treatment Insights

Navigating Lung Cancer Biomarker Testing | Challenges and Solutions for Timely Access

Navigating Lung Cancer Biomarker Testing | Challenges and Solutions for Timely Access

When Should Lung Cancer Patients Receive Biomarker Testing?

When Should Lung Cancer Patients Receive Biomarker Testing?

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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