Tag Archive for: Black patients

Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?

Bladder cancer research insights show disparities for specific groups. Expert Dr. Shaakir Hasan from Beth Israel Lahey Health discusses highlights from his research study, the value of seeking medical attention and second opinions, and proactive patient advice. 

[ACT]IVATION TIP

“Just do your own research, find what’s available, discuss these options with your provider, look at multiple providers, and get multiple opinions if you can to kind of feel more comfortable with whatever decision you end up making.”

See More from [ACT]IVATED Bladder Cancer

Download Resource Guide | Descargar Guía

Related Programs:

Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers

Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers

Addressing Disparities in Bladder Cancer Diagnosis and Treatment

Addressing Disparities in Bladder Cancer Diagnosis and Treatment

Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors


Transcript:

Lisa Hatfield:

Dr. Hasan, your study found that certain demographics, including Black and female patients have reduced survival rates. So can you speak a bit about the study and what you think can be done to improve outcomes for these groups?

Dr. Shaakir Hasan:

Sure. So, I think that when it comes to the overall prognosis, the overall, you know, outcomes, the results as to how likely you are to get cured, survive is actually not so different. It’s a little different, but not so different among different groups, be it female, be it African Americans, the bigger issue is that they’re being diagnosed at a later stage. And that just makes care a lot more difficult. So, I think that’s the take home message there is that, going back to, I should just say, the biggest issue here is to look at preventive medicine and to kind of detect these symptoms early, detect bladder cancer early if it’s there, because that will eventually lead to better outcomes regardless of whatever group you belong to.

So, that does mean seeking medical attention early. That does mean addressing things like blood in the urine or just anything that’s off in your genital urinary system to address that early. Now, as far as reduced survival rates stage for stage, which is another thing that we showed, it could be a multitude of things. It could be that certain groups, demographic groups, just are predisposed to worst acting cancers. They could be more aggressive tumors. But there’s also certainly a lot of evidence that shows that certain ethnic groups just don’t get the same care, period.

Maybe they don’t have as much access insurance-wise. Maybe they don’t have the same coverage or they’re not seeking some of the expert care that’s out there. And so that certainly can contribute to worse outcomes, period. We’ve seen this in many different cancers. So, what I would say, what can be done to prevent this? I will again, encourage that those really advocate for themselves and say, look, do your own research, hop on Google and just bladder cancer treatments, plain and simple. And you’ll find a multitude of opportunities of different types of treatments. And you should ask your provider about them. The second you do that, they know you’re engaged. They’re going to engage back with you, and it’ll be much more of like a partnership in your management and your care.

And that will ultimately get you better results. I think another thing one can do is don’t, you know, in the business, in medicine, we call this doctor shopping, so to speak, but it’s not a bad thing, seek other opinions, be comfortable with your physician and be comfortable getting different opinions and seeing what’s all out there because, and we won’t be offended. I encourage all my patients to go get as many opinions as they feel comfortable with, because at the end of the day I want you to be comfortable with your management.

I want you to know what’s out there and you might just have a better fit, whether it’s location, you just like the position better. You like the facilities better, the opportunities, the nursing staff, whatever it might be, there’s going to be a better fit for certain patients in certain areas and you should explore that. So, I think regardless of your economic background, your ethnic background, your gender do this and then you, we kind of, so to speak, level the playing field for whatever type of care you get.

Start with doing your own research, you know, try to find what’s available for you, and you might not understand it all, but that’s okay. Just do your own research, find what’s available, discuss these options with your provider, look at multiple providers, and get multiple opinions if you can to kind of feel more comfortable with whatever decision you end up making.

Addressing Disparities in Bladder Cancer Diagnosis and Treatment

Bladder cancer disparities have been examined for several decades. Expert Dr. Shaakir Hasan from Beth Israel Lahey Health discusses patient groups that show disparities and patient advice to advocate for optimal care.

See More from [ACT]IVATED Bladder Cancer

Download Resource Guide | Descargar Guía

Related Programs:

Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers

Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers

Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?

Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?


Transcript:

Lisa Hatfield:

Dr. Hasan, what are the most significant disparities that you’ve observed in the treatment of bladder cancer among different demographic groups?

Dr. Shaakir Hasan:

Yeah, so you know, unfortunately, we did find, and actually, before I even start, let me preface this by saying there was a study done about three decades ago, the early ‘90s, that looked at the diagnosis and prognosis of bladder cancer patients in the ’60s, ’70s and ’80s. And they found that there was a worse prognosis for African Americans, particular other minorities, but mostly African Americans, both when it comes to diagnosis, like they were diagnosed later, and then their outcomes, they had worse survival, worse cure rate. And I’m sorry to say that we repeated the study, they use theory data. It’s a national database, and we use the National Cancer Database, NCDB to do a similar study, looking much later. So we did this a few years back. And so we’re looking at the 2000s, 2010s, up to 2020.

Unfortunately, we actually found the same results. The overall prognosis is better, because the overall treatment and management is better. But the differences, unfortunately, still remain. So, Black patients were almost twice as likely to be diagnosed in later stages, i.e., stage IV, incurable stages than their white counterparts. And that obviously means that they’re going to, there’s going to be worse outcomes when it comes to cure rates and survival, overall survival. And so we still do see that today.

Lisa Hatfield:

Okay. Thank you for that information. I also have a follow-up question to that, because I read your study a little bit and learned a little bit more about some of the factors that lead to a later diagnosis. So if you have a patient sitting in front of you who is afraid maybe to, maybe they’re going in, they have blood in their urine, which is a symptom, could be a symptom of bladder cancer. Their PCP has told them originally, well, it might just be, you might be on your period, it could be something else, they go in once or twice, a patient is afraid to confront their doctor or say, you know, is there any way we can follow up on more, maybe they don’t want to offend their doctor, maybe they’re just afraid to do it. Do you have any piece of advice for that patient, just so they don’t get diagnosed in a later stage, if that is the reason why they might be diagnosed later, what would your advice be to that patient sitting there?

Dr. Shaakir Hasan:

Yeah, totally. So I think one would be surprised. First of all, never worry about offending your doctor. You know, that’s one thing that I start with. And it’s, and I say that a little tongue in cheek, but I actually mean that because there have been plenty of times where your doctor’s not trying to be dismissive, right? They’re not trying to just, obviously, you never want to be the one that missed something. You never want to be the one that bladder cancer, right?

And so you might just not be thinking about something at that moment, you might really be sitting there and going, oh, look, it’s very likely not this because I know my list of diagnoses. And I know like, what’s more common and what’s not, that’s part of my job. And so it’s not so much, you know, the attempts to offend or miss something. But the second you bring it up, the second that you advocate for yourself, far more likely, we’re far more likely to act on it.

And that’s just kind of a universal principle. There might be something that they missed, there might be, maybe you’re perimenopausal, and you haven’t had menses in a couple years, and the doctor just missed that. There could be something that you, you know your body, you should advocate for yourself in those situations, do not worry about offending, because honestly, you’re not like, I can’t really imagine I couldn’t, I’ll admit, there definitely been times where someone asked about something that I wasn’t thinking about, not intentionally. And I just Oh, yeah, of course, we’ll look into that. There’s no offense, you know, taken. So I wouldn’t worry about that.

And even if they were offended, this is your body, it could be life or death, you shouldn’t worry about that. The second thing I want to mention, though, is that, you know, it’s probably not as likely that everyone is seeking medical care, and then one is just being dismissed certainly is possible. Certainly, we do have evidence of that happening, and unfortunately in different situations, but it’s probably more a reflection of certain people will have primary care and certain people just don’t.

If you don’t have insurance, for example, you’re not as likely to go have a routine checkup. And these routine checkups, they’ll check the urine, they’ll do urinalysis, and you might not notice blood in the urine, but they can tell it microscopically. But if you’re not routinely doing this, as a screening process, then you’re not going to detect it. And so I think one recurring theme in healthcare in general is just preventive medicine. And I think that we really have to work hard to implement that for all groups. And certainly, there’s a disproportionate lower primary care coverage of certain minorities and socioeconomic groups that we really have to do better at. And I think that will translate into detecting more bladder cancer earlier for whatever ethnic group you want to.

How Does Insurance Status Impact Cervical Cancer Diagnosis?

 Health insurance status has some clear impacts on cervical cancer stage at diagnosis. Expert Dr. Shannon MacLaughlan from University of Illinois discusses key points from her cervical cancer research findings.

 

Related Programs:

Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy

Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy

What Steps Can Patients Take to Combat Cervical Cancer Disparities?

What Steps Can Patients Take to Combat Cervical Cancer Disparities?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, how does your research highlight the role of health insurance status in influencing the stage at which cervical cancer is diagnosed among different racial and ethnic groups?

Shannon MacLaughlan:

Well, we found that patients who have private insurance or Medicare are much more likely for their cervical cancer to be diagnosed in an early stage than an advanced stage. We already knew going into this particular work on the SEER database, we already knew that there were some inequities that broke out by race and ethnicity, such that Black patients, Hispanic patients, and Native American and Alaska Native patients were more likely to present with an advanced stage cervical cancer than their non-Hispanic white counterparts. And it turns out that having insurance can mitigate that discrepancy.

Now, that research is really designed to teach a system that we have to do better. That research is hard to package into something for a particular person to do differently in their life. It’s easy to say, “Go get insurance.” But we all know that in real life, it is not that easy. So what’s really going on here is that screening programs are effective in populations who are getting screened, and insurance is a marker of someone who has access to primary care and preventive care and the ability to focus on health at all. 


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Do Black and Latinx Veterans Face Unique Lung Cancer Challenges?

Do Black and Latinx Veterans Face Unique Lung Cancer Challenges? from Patient Empowerment Network on Vimeo.

What unique challenges do Black and Latinx veterans face in lung cancer? Expert Dr. Drew Moghanaki from UCLA Health explains the importance of trust, second opinions, and proactive advice for the best care.

[ACT]IVATION TIP

“…for anyone who might have some trust concerns. No one owns you as a provider that you have to get care from them. If you’re comfortable, you can ask for a second opinion. If not, it is absolutely okay. Patients all the time are getting second and sometimes even third opinions. And I strongly recommend getting another opinion if you’ve got any questions or doubts, because that trust alliance is so important to get the best lung cancer care…”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED NSCLC Veterans

Related Resources:

How Can Advanced Lung Cancer Be Explained to Newly Diagnosed Veterans?

How Can Advanced Lung Cancer Be Explained to Newly Diagnosed Veterans?

Lung Cancer Strategies for Veterans | Research and Care Insights

Lung Cancer Strategies for Veterans | Research and Care Insights

Insights into Veteran Healthcare | Perspectives from VA and Civilian Systems

Insights into Veteran Healthcare | Perspectives from VA and Civilian Systems

Transcript:

Lisa Hatfield:

Dr. Moghanaki, what specific challenges do veterans from the Black and Latinx communities face when trying to access healthcare services, and what are we learning from these challenges, and how is that information shaping care for veterans facing lung cancer?

Dr. Drew Moghanaki:

Well, this question just reminds me that healthcare is complicated, especially lung cancer care. And the most important thing for anybody getting care, regardless of what social, economic background or ethnic background they may be from, is to find a team that you trust and who you know will care about you. And that’s the best way to make sure you get the best treatment. I myself as a physician. I’ve also been a patient at times.  And if I don’t trust my care provider, I basically ask for a change. And I know that can be difficult.

And so here’s my activation tip for anyone who might have some trust concerns. No one owns you as a provider that you have to get care from them. If you’re comfortable, you can ask for a second opinion. If not, it is absolutely okay. Patients all the time are getting second and sometimes even third opinions. And I strongly recommend getting another opinion if you’ve got any questions or doubt, because that trust alliance is so important to get the best lung cancer care, because it’s not going to be a one-time visit. You were talking about relationships that can last months or even years to get the best treatment for your lung cancer.


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Combat and Courage | A Veteran’s Lung Cancer Battle

Combat and Courage: A Veteran’s Lung Cancer Battle from Patient Empowerment Network on Vimeo.

Derrick, a resilient veteran and lung cancer survivor graciously opens up about his journey, detailing his experience from initial screening and diagnosis through to treatment. He candidly discusses crucial aspects of lung cancer care for veterans and offers insights drawn from his journey. In Derrick’s own heartfelt words, he emphasizes the importance of empowerment through knowledge, stating, “It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.” 

Download Resource Guide  |  Descargar guía de recursos

See More from [ACT]IVATED NSCLC Veterans

Related Resources:

What Do Lung Cancer Patients Need to Know to Build a Treatment Plan

What Do Lung Cancer Patients Need to Know to Build a Treatment Plan

Persistence in the Face of Dismissive Healthcare: One Patients’ Journey

Persistence in the Face of Dismissive Healthcare: One Patient’s Journey 

What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access?


Transcript:

Derrick:

Being ACTIVATED in your lung cancer care is a necessity, take it from me. 

After my friend who I served with in Iraq was diagnosed with lung cancer, I knew that it was time to get  serious about my lung cancer screenings at the Veterans Affairs Hospital. As a lung cancer survivor, I want to share my story as a Black military veteran. Lung cancer is the leading cause of cancer-related death in veterans, and Black veterans are less likely to complete lung cancer screening.  However, a recent VA report showed that Black veterans receive equal or superior care through VA hospitals in comparison to Black patients in the general population.

I was already 52 when I received my first lung cancer screening. I only learned later that I should have started receiving screening at age 50 at the VA. It was winter when I went in for my screening. I’d had a nagging cough but didn’t think twice about it. It was a winter season with multiple respiratory viruses circulating at the time. I was shocked when the radiologist informed my doctor that they found a spot on one of my lungs. I felt like I wasn’t old enough to have cancer.

I was really nervous about it beforehand, but I had surgery to remove the tumor from my lung. I felt fortunate to have my friend I served with to talk with about lung cancer, but I know not everyone is this fortunate. I’m sharing my story in the hopes that it will help other veterans. I continue to receive regular scans of my lungs and urge other veterans to start your lung cancer screening on schedule. Ask your doctor or VA administrator if you’re unsure about when you should start. It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.

There have been a lot of recent advancements in lung cancer diagnosis and treatment. I hope that sharing my perspective will make a difference for other veterans. We served proudly for our country, and we deserve the best lung cancer screening and care as part of the respect that we earned.

Stay [ACT]IVATED with these tips. 

  1. Don’t allow stigmas to keep you from getting the best care, now is the time to get the right care no matter how you got the cancer.
  2. Ask your care team questions to learn about treatment options and what to expect during and after treatment.
  3. Ask if a clinical trial may be a potential treatment option for you.
  4. Stay abreast of lung cancer treatment options and research advancements

Whether it’s combat in war or fighting cancer, no matter who you are, being proactive is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Empowering Lung Cancer Patients: Embracing Hope, Treatment, and Teamwork from Patient Empowerment Network on Vimeo.

What does the future of non-small cell lung cancer (NSCLC) treatment and care look like? Expert Dr. Samuel Cykert from UNC School of Medicine shares his outlook about the future of care and his advice to patients to help build emotional support.

[ACT]IVATION TIP

“…don’t give up, and one thing I’ve heard from patients over time, particularly among Black patients, there’s a tremendous faith community, and understanding that tremendous faith, faith is excellent, but also use that faith to understand that your belief in God, your interaction with God, God is using those doctors and those healthcare professionals to help you, so it’s not a solo effort, get everybody on the team.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

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

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

Transcript:

Lisa Hatfield:

If you could give one suggestion to patients out there who may not be following up with their appointments, perhaps also in addition to the racial disparities? The unfortunate stigma surrounding lung cancer, and I wonder sometimes if that’s a barrier to continuing treatments or going to appointments, you could give one suggestion or sentence of encouragement to patients to seek out those high volume facilities if they’re diagnosed, if there’s a suspicion of lung cancer and to continue with treatment, what would your message be to those patients?

Dr. Samuel Cykert:

My message to patients, really it’s two-fold. On the medical side, lung cancer deaths are falling, all cancer deaths are falling, and they’re falling because of earlier detection, but they’re also falling because of these new treatments. And so it’s really, really important, particularly if you’re physically able, if you have a good functional status and you’re able to walk around and do things, it’s important that you really, really consider aggressive treatments because lung cancer isn’t an immediate death sentence anymore.

It is true that there are some lung cancers that are not curable, but with some of the new biologic treatments and chemotherapy regimens, people can live years with a good quality of life, even with some advanced lung cancers. So my advice on that side is don’t give up, and one thing I’ve heard from patients over time, particularly among Black patients, there’s a tremendous faith community, and understanding that tremendous faith, faith is excellent, but also use that faith to understand that your belief in God, your interaction with God, God is using those doctors and those healthcare professionals to help you, so it’s not a solo effort, get everybody on the team.

Lisa Hatfield:

Great message. Everybody on the team, I like that. Thank you, Dr. Cykert, and I appreciate all of your answers, and I’m hoping that this message, what people are watching that, understanding those statistics from your research, people who sometimes miss appointments or have transportation issues, maybe this will inspire them to continue finding ways to get there and to keep going, to keep fighting it and getting everybody on their team, I appreciate your message a lot. Thank you.


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How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care? from Patient Empowerment Network on Vimeo.

With non-small cell lung cancer (NSCLC) precision medicine, what are disparities and strategies to equitable access? Expert Dr. Samuel Cykert from UNC School of Medicine discusses disparities, strategies to overcome disparities, and proactive patient advice toward optimal care.

[ACT]IVATION TIP

“…I know you do electronic health records, and as soon as this visit is done, you have data about my visit, so have you thought about creating a real-time registry to see how I’m progressing with my care and see how others are progressing with their care, whether to make sure that we don’t have missed appointments and to make sure that I’m not falling behind where I should be.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

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

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Transcript:

Lisa Hatfield:

Dr. Cykert, are there any disparities in access to biomarker testing for Black and Latinx patients with lung cancer compared to other racial or ethnic groups, and if so, what strategies or initiatives can be implemented to address these disparities and promote equitable access to precision medicine?

Dr. Samuel Cykert:

Yeah, biomarker testing followed up by precision medicine is really fairly new in the last half-dozen years, so there haven’t been a lot of studies done looking at how well we’re doing in different groups, but there’s a journal called The Journal of Clinical Oncology and precision medicine that published such a study in 2022.

And what that showed…and again, keep in mind that in a lot of…as they do in a lot of database studies, they are a couple of years behind, but what they showed in looking at the cases of over 20,000 patients, is that on first time testing, we talked about initial biopsies, when the initial biopsy is tested, there is actually about a 7 percent difference between Black and white patients with the white number being only 37 percent and the Black number being 30 percent, so that was low all the way around.

And then if you look at any biomolecular testing at any stage of the cancer, those numbers change to around 55 percent for white patients and 44 percent for Black patients, and I want to point out that for Asian patients and Latinx patients, the numbers were also low, but there weren’t enough patients in the database to achieve statistical significance, but it looks like things are going in the wrong direction there too, and when you think about it, in the state of the right now, those numbers ought to be close to 100 percent for everybody, at least in some of the basic markers like ALK and EGFR and PD-L1.

So there’s a lot of work to do. So there is a disparity. It has been documented, but we’re not getting perfect care to even anyone, and in the ACCURE (Accountability for Cancer Care through Undoing Racism and Equity) Study that I had described a little bit earlier, where we did an intervention, we created real-time transparency through up-to-date electronic health records and digital data of where patients were in their care, we were able to create a real-time registry to know what had been done for every patient, and in the case of precision medicine, this would be so easy, because you basically put every patient that’s had a lung cancer biopsy in the registry, then you have another column in the registry tested for X, tested for Y, tested for Z, and then you have a next column that says, treated for X, treated for Y, and treated for Z. We have the digital information now to do all this in real time, and we have to build the systems to do it.

Lisa Hatfield:

Could you share any examples of successful initiatives or programs aimed at improving the implementation of biomarker testing in lung cancer and what factors contribute to the success of these initiatives, and how can they be replicated or scaled in other healthcare settings?

Dr. Samuel Cykert:

I’ll have to plead my ignorance on this question because I haven’t talked to enough cancer centers on whether or not they’re creating real-time registries for whether all their patients with probable lung cancer are, [a] getting biopsied promptly, [b] getting biomarker testing, and then following those patients over time to see if they’re getting the treatments to match to that, so I know that at my own institution at the University of North Carolina Lineberger Cancer Center, we’re actively talking about building these systems, but we haven’t built them yet.

And so going back to the work that our UNC team has done in partnership with Greensboro Health Disparities Collaborative, we’ve done an intervention with real-time transparency in lung cancer treatment and breast cancer treatment, and real-time quality improvement and audit and feedback for accountability in those treatments and using navigation, particularly for high risk patients to make sure that they’re able to follow through with their diagnosis and treatment.

So with that combination in lung cancer, we got almost perfect care, 96 percent and 95 percent completing treatment, so there’s no reason that the same system cannot be applied to biomarker testing and biologic and immunotherapy, and we need to look at it and implement it and apply it as soon as possible, because when you think about all this, and I’m not just talking about cancer, but when you’re thinking about the whole picture, when you look at, for instance, Black, white disparities, whether it’s in cardiovascular care, whether it’s in diabetes, whether it’s in cancer care, if you look at the result of that in one year, if we brought up care to benchmark levels of the Black community on all those things, we would save 74,000 lives a year.

That’s incredibly impactful. And we need to quicken up the pace of doing this. I’ve been a disparities researcher and intervention researcher for over 20 years, and people really haven’t taken note of really doing interventions until the last five or six years. We need to pay attention, we need to move. It’s important. People’s lives depend on it. And care improved for everyone with these systems, it improved for white patients too. It’s not a zero-sum game.

Lisa Hatfield:

I’m wondering, as a patient, is there anything that I can do or that a patient can do to request or to ask if they use real-time data, that institution to help with the treatment or help with testing or whatever, is there a question the patient might be able to ask to ensure the real-time data is used? Because I imagine it’s not being used as often, so it could be, like you said, there probably isn’t a system in place.

Dr. Samuel Cykert:

Here’s my double activation tip. So at an institution, you don’t know if you have a problem until you look. So the first problem is, as I go back and look behind, am I making sure whether or not I’m seeing disparities, whether it’s a man, woman, Black, white, Latinx, do we have disparities in our treatment application and treatment outcomes in our institution? Because if we look at that, we can start brainstorming on how to possibly fix it, and then the second thing is, I know you do electronic health records, and as soon as this visit is done, you have data about my visit, so have you thought about creating a real-time registry to see how I’m progressing with my care and see how others are progressing with their care, whether to make sure that we don’t have missed appointments and to make sure that I’m not falling behind where I should be.

Lisa Hatfield:

Great, that’s perfect, thank you. Having the patients be…have that accountability too, to ask the question, if that exists, that real-time data, if there’s a way to use that. So thank you, I appreciate that myself personally, so thanks. 


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What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine? from Patient Empowerment Network on Vimeo.

How can non-small cell lung cancer (NSCLC) precision medicine be advanced through urgent innovations? Expert Dr. Samuel Cykert from UNC School of Medicine discusses technology and research innovations and epigenetics.

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

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

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Transcript:

Lisa Hatfield:

In your opinion, what are the most pressing research priorities or areas of innovation needed to further advance the implementation of biomarker testing and precision medicine in the management of lung cancer?

Dr. Samuel Cykert:

Yeah, there are two areas of this, the health services researcher side of me says institutions have to implement systems that follow patients in real time to making sure that they’re getting the testing and treatment that they need from the initial suspicion of lung cancer all the way to biomarker testing and therapies, whether they include surgery, chemo, radiation, biologics or immunotherapy. Those systems need to be areas of priority so that we’re really proactive of not only following patients, but from time to time, whether there are side effects or whether there is confusion, having those systems so we know when to re-engage patients when they’re not progressing along, so on the health services side, we have a lot of just phenomenal, phenomenal new treatments, and we have to make sure that every patient who is eligible is getting those treatments. Okay?

Now, on the other side of things, we’ve talked about racial disparities and other ethnic disparities in care, and one thing that people are observing over time is that in individuals and communities where racism is experienced, where the stress of racism is felt on a frequent basis, we know that outcomes are worse. And part of that may have to do with stress hormones themselves and how stress hormones interact with cancer treatments and hypertension treatment and other treatments, but the other possibility is there is a field called epigenetics, where genes change because of stressors.

And so it’s very conceivable now, in terms of the Human Genome Project, there is hardly a difference in the genome between white and Black people. Genetic race is a social construct, and genetically we’re almost identical, but if we’re experiencing epigenetics, if we are experiencing racism and that grind in daily life, it changes things within us, and so I think it’s important to get enough tissue on the research side from Black patients and other disadvantaged groups to look at the epigenetic part of it, because there may be new genes and new biomarkers we’re not experiencing now that are more prevalent in disadvantaged peoples, and so I think research has to go in that direction too, and even let’s talk about going upstream, maybe if we can prevent the effects of racism. I wish racism would end tomorrow, right, or today, but it doesn’t look like that’s happening. And so, is there any way we can attenuate the stresses of racism so that the downstream effects are prevented?

Lisa Hatfield:

Really interesting point you make about the stress of that. That’s super important. It’s something I hadn’t thought of. So thanks for mentioning that too. 


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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.

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

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

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

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.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

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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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.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

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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Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

Expert Perspective | Aggressive Prostate Cancer Research and Health Equity from Patient Empowerment Network on Vimeo.

What does research show about aggressive prostate cancer and health equity? Expert Dr. Ronald Chen from KU Medical Center discusses advanced prostate cancer research findings, the INNOVATE trial, and advanced prostate cancer disparities.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

How Can Prostate Cancer Screening Access Be Increased?

How Can Prostate Cancer Screening Access Be Increased?

Transcript:

Lisa Hatfield:

Dr. Chen, can you provide an overview of your research focus around improving treatments and cure rates for patients facing an aggressive prostate cancer diagnosis? And also, two parts to this question. What inspired you to focus on the topic of health equity in relation to prostate cancer?

Dr. Ronald Chen:

Well, in terms of thinking about my research on improving treatments for advanced prostate cancer, and I’ll just define that to say, advanced prostate cancer, we usually think of as patients who have prostate cancer that has spread to other parts of the body. And so that’s often very aggressive. And, of course, in that situation, there’s still a lot of room for us to improve treatment so we can extend the survival and also improve the quality of life for these patients as much as we can. So a lot of room for improvement. And really, I think how we get to that improvement is mostly through clinical trials.

There’s a lot of promising new treatments that are more effective in tackling the cancer that also potentially can improve the patient’s quality of life, which is also a very important situation for advanced prostate cancer. And so a lot of my research really focuses on clinical trials to incorporate new treatments or new ways to do treatment for patients with advanced prostate cancer.

I’ll give one example. I lead a national trial that’s sponsored by the National Cancer Institute. It’s called NRG-GU008. We call it the INNOVATE trial. And this trial is specifically for patients who have prostate cancer that has spread to the lymph nodes. And if you have prostate cancer that has spread to the lymph nodes, that’s technically stage IV. And we, again, don’t do as well as we want to for these patients. And what this trial is testing is standard of care which would involve radiation and hormone therapy compared to standard of care, radiation/hormone therapy, plus a new drug that seems to hold promise for prostate cancer.

And, of course, we’re testing to see whether adding this new drug would reduce further spread of the cancer, improve survival, and how it impacts quality of life. And so, that’s a very important effort for no positive prostate cancer patients. And we are trying to enroll almost 600 patients, and so far we’re about 200 patients into it. So it’s an ongoing trial. It’s open across the country. And I really do hope that at the end of this trial, we’ll be able to offer a new option for these patients.

I’m involved in other trials around the country that are testing other treatments for advanced prostate cancer. And a lot of my focus on these other trials is also to sort of assess the impact of these treatments on the patient’s quality of life. I think quality of life is really important. We don’t just want to focus on being more aggressive and more aggressive and more aggressive without accounting for how the aggressive treatment really impacts a patient, how their quality of life is and side effects. And so that’s also another really important focus of my research and clinical trials.

In terms of my focus on health equity, health equity is a really important topic because even though we have pretty good treatment for prostate cancer, we know that not all patients have the same access to treatment, and not all patients have the same outcome with advanced prostate cancer. And so, studying why there is a disparity where some patient groups don’t do as well. We know for a fact that based on multiple studies, that Black patients with prostate cancer are more likely to die from prostate cancer twice as much as white patients with prostate cancer.

So we want to understand why, and once we understand why, we want to design interventions to reduce that gap, so then all patients have the same access and have good outcomes with this disease. And so I think that relates to access to screening. So we can diagnose cancer as early as we can. It relates to access to clinical trials, and that’s another really important aspect of my research focus.

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How Can Gynecologic Oncology Racial Disparities Be Addressed?

How Can Gynecologic Oncology Racial Disparities Be Addressed? from Patient Empowerment Network on Vimeo.

What are some ways that gynecologic oncology racial disparities might be addressed? Expert Dr. Charlotte Gamble from MedStar Health discusses racial inequities in care on different levels and how to start reducing disparities.

[ACT]IVATION TIP

“…understanding how race, racism intertwine with cancer outcomes and access to care, the role that underrepresentation of Black patients on clinical trials has had on the novel therapeutic developments and where these survival gaps worsen when these new drugs are improved or introduced into the system. Because Black patients might not benefit significantly from them, because they have not been represented in the clinical trials as well as they might not have access to these drugs initially when they’re initially rolled out.”

Download Guide | Descargar Guía en Español

See More from [ACT]IVATED Endometrial Cancer

Related Resources:

Navigating Advanced Endometrial Cancer | Treatment, Prognosis, and Lifestyle Strategies

Navigating Advanced Endometrial Cancer | Treatment, Prognosis, and Lifestyle Strategies

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

How Is Gynecological Cancer Care Impacted by Social Determinants of Health?

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Transcript:

Lisa Hatfield:

Dr. Gamble, could you elaborate on the racial inequities in cancer outcomes highlighted in your research, particularly with gynecologic oncology? The article or blog mentions the public health critical race practice, so the framework for understanding racial disparity in healthcare. So how can this framework be applied practically in addressing disparities within gynecologic oncology?

Dr. Charlotte Gamble:

Absolutely. I think within gynecologic oncology, again, addressing people who have cancers of the female reproductive tract, ovary, uterine endometrial, specifically within the uterine cancer space, cervical cancer and vulvar cancers. We have multiple levels of racial inequities. When we talk about what cancer outcomes are, these are things like recurrence rates. How quickly does the cancer come back after it’s been treated for the first time? Survival outcomes. So what proportion of patients who have this cancer are living at 5 years? Surgical complications, at 30 days, how many patients had a stroke? How many patients had to be readmitted? How many patients had a blood clot? And so there are definitely different levels of cancer outcomes within the cancer care in general. And what we see within gynecologic cancers is a couple of different things.

So historically within ovarian cancer, there was a thought that there was not too much in terms of survival. Survival outcomes is kind of by far the most commonly cited cancer outcome that is used as a benchmark in all cancer fields. And looking at five-year survival, basically, how what proportion of patients are alive with their cancer at five years. And historically ovarian cancer is, but thought to not have too much of a difference.

When we talk about basically Black, white racial disparities in the United States, although that has been kind of poked at over the past couple years, and there might actually be pretty significant differences when it comes to ovarian cancers and the regionality in part of the country and how long patients live with in general, because ovarian cancer is oftentimes diagnosed at such an advanced stage. Patients do overall, can overall have such significant issues with getting to that five-year overall survival, regardless of race, that again, everything that is influenced by race or the exposure to racism in this country might be washed out just basically because it’s really, really tough when someone has an advanced ovarian cancer diagnosis.

We do know that oftentimes patients who are Black or have been exposed to racism are less often likely to get surgeries, are sometimes more or less likely to get standard of care chemotherapy. And within the ovarian cancer space, over the past 10 years, we really now frequently use genetic testing and the availability of a drug called PARP inhibitor, a targeted oral chemotherapy drug that is used after someone has completed their initial rounds of chemotherapy to help improve their survival. That had really wonderful results about 10 years ago based on several international trials. The challenge though, is when we have novel therapeutics or novel drugs that we give to patients based on really amazing clinical trials, the patients who are most likely to get it are patients who have higher access to care, who might be a little bit more affluent.

And oftentimes this is disproportionately white patients in the United States. And so some of these racial disparities widen for a bit after novel therapeutics are introduced into the system. When it comes to cervical cancer, what we’ve seen historically, is that this is a cancer that is entirely preventable and entirely through a combination of a lot of screening with Pap smears as well as the HPV vaccine. And historically, again, it tends to be disenfranchised, historically marginalized or minoritized patients that might not complete their HPV vaccination series or be able to get the regular Pap smears because their lives end up being pulled in several different directions. And so they end up getting diagnosed with a cervical cancer that is entirely preventable in 2024, as we just saw this young influencer die of an advanced stage cervical cancer. Things like that really shouldn’t happen.

And again, this, the underlying driver of this, we mentioned the critical race practice, is that race or racism is an underlying driver for everything that happens in the United States based on historical issues in this country. And the patients who are disproportionately affected by this tend to be Black minoritized patients. And so that manifests itself in terms of access to Pap smears, access to HPV vaccination screening. In terms of the endometrial cancer space, I love the example that Dr. Kemi Doll uses that really thinking about endometrial cancer is thinking about reproductive health for women and the continuum of thinking about not only the maternal mortality issues that we see for women of reproductive age.

And this extends into postmenopausal women who are disproportionately affected by high risk, aggressive types, advanced stages of endometrial cancer. And so having endometrial cancer as a continuum of reproductive healthcare and involving that in the maternal mortality conversation is a really, I think, helpful way to frame that, that she’s propagated over the past several years.

And so, when we think about endometrial cancers, one of the things that I mentioned earlier is we have these lovely clinical trials that have shown really amazing improvements in overall survival. The kind of nuance to that though is one, these trials weren’t entirely fully representative of the diverse patient population we care for in the United States. There were not enough Black patients in those trials by any means.

Two, the, those new novel immunotherapy drugs work incredibly well in a subset of patients with endometrial cancer, who have what’s called mismatch repair deficient cancers. It’s just a kind of a specific subset of the molecular profile of these endometrial cancers. And these drugs are almost a golden ticket for these patients and really extend survival. And it’s amazing. What is very concerning is that for Black women, the rates of this mismatch repair cancer is not as prevalent.

And so Black women oftentimes have less frequent mutations that will work with these therapeutic drugs. And what I’m very concerned about might happen is that as these drugs are now the golden ticket for a lot of these advanced stage endometrial cancers that specifically have this mutational difference mismatch repair deficiency, Black women might be left behind because the rate of having a mismatched repair deficiency is less for them, and these drugs might not work as well.

And I’m very concerned that we might see a widening in the racial disparities in these cancer outcomes, specifically survivorship for endometrial cancer. As these immunotherapy drugs are increasingly used in clinical practice, even though we use them for all patients, it’s, they work best in a subtype of patients that are oftentimes disproportionately not Black. And I very much worry that we’re going to start seeing a widening in the survival gap as they did for melanoma, when there were novel drugs that address a melanoma treatment pathways that disproportionately did not work well in Black patients.

In terms of activation tip for this question, oh, I think it’s important to take this question in the historical context of this country and understanding how race, racism intertwine with cancer outcomes and access to care, the role that underrepresentation of Black patients on clinical trials has had on the novel therapeutic developments and where these survival gaps worsen when these new drugs are improved or introduced into the system. Because Black patients might not benefit significantly from them, because they have not been represented in the clinical trials as well as they might not have access to these drugs initially when they’re initially rolled out.


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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?

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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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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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