Tag Archive for: healthcare disparities

Improving Biomarker Testing Access for Rural Lung Cancer Patients

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

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

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

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Transcript:

Lisa Hatfield:

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

Dr. Samuel Cykert:

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

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

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

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

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

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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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Roadblocks for Black and Latinx Patients From CAR T Trial Access

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

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

[ACT]IVATION TIP

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

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

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

Transcript:

Lisa Hatfield:

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

Dr. Sikander Ailawadhi:

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

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

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

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

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

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

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How Are Myeloma Therapies and Clinical Trials Becoming More Accessible?

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

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

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Transcript:

Lisa Hatfield:

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

Dr. Sikander Ailawadhi:

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

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

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

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

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

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

Why Do Some Myeloma Patients Experience Chronic Kidney Disease?

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

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

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Transcript:

Lisa Hatfield:

Why do some myeloma patients experience chronic kidney disease?

Dr. Sikander Ailawadhi:

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

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

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