How Can I Get the Best Prostate Cancer Care No Matter Where I Live?

How Can I Get the Best Prostate Cancer Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients ensure they get quality care even if they live in rural areas? Noted experts, Dr. Petros Grivas and Dr. Yaw Nyame share advice and discuss how to receive optimal care no matter your geography or financial status. Learn about resources and digital tools you can utilize to ensure better care no matter where you live. 

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Transcript:

Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, your host for today’s Patient Empowerment Network program, and we are so happy that you’ve tuned in. Today we’re going to be talking about how prostate cancer patients can truly get the best care no matter where you and your family live, we’re going to talk about things like how can I remove roadblocks in my care to gain access to state-of-the-art treatment? Will my insurance limit me if I wanna get a second opinion as a care partner, how do I best advocate for my loved one and is a clinical right for me? The answers to some of these questions we receive revolve around awareness, feeling empowered to ask questions and connecting to the right resources at the right time. In this program we’ll be learning just that as we meet our experts. It is my honor and privilege to be joined by Dr. Petros Grivas, Associate Professor and clinical director of the genitourinary cancer program at the University of Washington. And Dr. Yaw Nyame, Assistant Professor in the Department of Urology at the University of Washington. Thank you so much for joining us today, gentlemen. 

Dr. Nyame:

Thank you for having us. 

Dr. Grivas: 

Thank you so much for having us. It’s an honor and pleasure to be with you. 

Dr. Nicole Rochester: 

It is my honor as well. Please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team on the best options for you. Now, let’s take a few minutes to set the stage and give a brief overview of barriers in the way of achieving equitable prostate cancer treatment. Doctors Nyame and Grivas, we know that location, socioeconomic status, insurance, financial hardships, lack of urologists in rural areas, geographic distance services and access to transportation all play an important role in the outcomes for patients and families facing a prostate cancer diagnosis. So, I wanna start with our first question, and we’ll start with you, Dr. Grivas, what are some of the barriers that prostate cancer, let me do that one again. What are some of the barriers, both prostate cancer patients and their care partners face when seeking care? 

Dr. Grivas: 

Thank you so much. These are really important discussions, and I’m glad we’re doing this program. I think you covered a number of those barriers in your introduction, and I would definitely agree with all of them because many of them are important. The number of those factors have to do with the location of the patient as you mentioned, patients regardless of race, if they live in a rural community, then they have less communication or contact with a medical care system, and that’s in all reality there’s data suggesting that a cruelty to states this access to care issue is becoming more and more noticeable, and the distance involved in some ways to get a medical facility, let alone a specialized medical facility, specialized in-person culture. It can be a big problem. The other issue that we have seen many times, again, in some communities more than others, is healthcare literacy and the preventive mindset as I call it, and that again, can transpire across races, but maybe even more intense in some of the populations. And when I talk about health literacy and preventive mindset, it’s about the relationship, an individual of the healthcare system, and sometimes the distrust, right, that may take place and also the, I would say comfort that the patient has to enter and access a medical care system that they can allow the providers to take care of them, and these are real, I would say, examples that we have seen based on having this concern of letting sales be taken care of in a medical system, competing problems and barriers include financial contraction, that’s a big one. 

Insurance coverage. We know that patients who… I would say social determinants of health may have not very good coverage, and this may be restricting award medical facilities that they can access, and also the cost of care, co-pays, for example, when diagnostic tests or acute interventions for orderly available agents can be a big carrier and no compliance can be diminished with co-pay. Of course, you mentioned many other factors, transportation issues, finding coverage of work, getting day off work can be a problem for some patients, and also the cost of transportation or lodging or parking sometimes can be a problem or even the anxiety to go to a big city and deal with a traffic of course. So there are many factors, of course, but I think we have to have a systematic approach how to catalog them and address them in a comprehensive way, and I think there are some improvements and we can talk about them today, for example, telemedicine and others, but I think the list is long, and we have to keep an open mind and engaged patient advocates in cataloging those barriers. Maybe Dr. Nyame can comment further in that regard.  

Dr. Nicole Rochester: 

Thank you so much, Dr. Grivas, yeah, you covered a lot of ground, and I appreciate that Dr. Nyame I’d love for you to either add to that list or maybe expand based on your perspectives. 

Dr. Nyame:

Dr. Grivas didn’t leave me with much to cover, which is great. I think what you hear, in his answer to that question is that this is really a social issue, and I think when we talk about inequities in health, we have to recognize that race in this country, and many places around the world really reflects a social construct, and so the things that really predict how people are going to be able to utilize our services and how well they’re going to do reflect that greater social context, and so to me… You have to meet the patient where they are. And the strength of the relationships that you can build between the healthcare system and the communities that are at risk, especially the ones that have the highest disproportionate risk of bad outcomes or not being able to utilize services is important. And so the barriers include all the things we talked about, but a lot of them that we’ve talked about have been very much healthcare-facing, so we talk about transportation, what we mean that in the source of transportation to our facilities or we talk about money, but we talk about money and the ability to pay for our services, we also miss the other ways in which those social barriers and factors impact the ability to prioritize one’s health. 

And so that is a really big problem. And something that we also need to put in the context of this conversation. I think when we take the covers off and we really see what our patients’ lives are like, sometimes we recognize that it’s not just about their ability to utilize the services that we provide, but that there are bigger issues at hand that also need addressing. Those aren’t in Dr. Grivas and I’s domain, but I think we have to understand those things to meet our patients where they are. 

Dr. Nicole Rochester: 

Absolutely, I really appreciate that both of you have really focused on those social determinants of health. I appreciate you mentioning racism, and the fact that the patients being able to prioritize their health, I think historically in medicine, we have blamed our patients for not taking care of themselves, so to speak, without a full appreciation of all of these barriers that both of you have just identified, so I really appreciate that. 

So we started slightly to talk about solutions, but let’s shift to solutions and what are some of the solutions that you all recommend for some of these barriers, and like you said, as physicians, a lot of that is going to be out of your purview, but I’d love for each of you to suggest any solutions for our patients and care who may be facing some of these barriers, so this time we’ll start with you, Dr. Nyame.  

Dr. Nyame: 

This is an area where I think we need to do better in collecting information to understand where the need is, and so I think there is a very much a need for translational health services or patient-centered research, where we do the simple thing, if I was gonna open up a lemonade stand in the middle of Seattle, I’d probably ask a few people what their needs are around lemonade before I open the stand, and I think in medicine, we often offer our services and solutions without having had that simple conversation of What are the needs? I think in addition to that, we have to understand that equitable care might mean offering additional services for certain populations, so for us at our cancer center, for instance, we’ve recently instituted a patient navigator program, something that’s been around for a long time, and other sites but it’s allowing us to do that, go through that exercise of providing some equitable care by helping people coordinate appointments, find their way to financial resources that might support them, and just to be there as a support in the very difficult time of having a new cancer diagnosis, so I think that’s a well-proven and well-established method for helping people get access to care. 

The other thing I’ll add is that we make decisions, I think as humans, we make decisions through community, and sometimes that’s our partner, sometimes that somebody at the gym, sometimes that’s a co-worker, and there are a lot of really fantastic patient advocacy networks that exist that can help people find this new community, and I think cancer patients share a very unique bond and in a very unique way to communicate with one another because they’re living through this particular diagnosis, and so for in the case of prostate cancer, especially prostate cancer in black men, you have the Prostate Health Education Network, you have Zero Cancer, you have Us TOO, you have the Prostate Cancer Foundation, probably leaving some advocacy groups off and I’m probably gonna get in trouble, but I think that there’s that opportunity to reach out to others and just learn… What did you go through, what worked for you? How can I meet my goals of care through just conversation with other patients and survivors, and I’ll try to leave something for Dr. Grivas to the conversation ’cause clearly I could go on and on. 

Nicole Rochester: 

Dr. Grivas? 

Dr. Grivas: 

I’ll tell you that I am learning every day from Dr. Nyame. He’s fantastic work in this important topic, and I think he covered the answer so well, if I can just add a few more things just to expand on this sorts. And these are things that already he’s doing in his programmatic development in our institution as well. I think one of the important things we have to acknowledge is the issue of systemic racism and implicit bias that I think you referred to Dr. Rochester. I think the more we talk about, the more transparent we are with it, the better because we can think about what are unconscious or subconscious thoughts that we may have, you know this patient doesn’t care about themselves. Why should we go the extra mile to help them? We should go the extra mile to help them because this patient may have less inside of the situation, and they need more resources and as a healthcare system, we should try to earn that patient, right? We should not let that patient go because every patient matters, right? And I think every life matters. I think that’s important. I think overall a systemic issue to discuss. The other thing is getting our sense of the community, and I think the examples of studies we have done in the clinic and other areas that we try to utilize the wisdom and the help of local leaders in those communities for example, underserved populations go to local churches or barber shops or gyms as Dr. Nyame mentioned and collaborate, work with the local leaders and see how we can have a dialogue with the patients there. How can we establish this trust that may be missing, how we can convey that health is important, and prevention is important, and treatment is important, how can we help with financial constraints, right? How can we get patients to the cancer center without them having to worry about how to get there, how can we reach out and have screening in the present county screening in the community, if it’s indicated then access to care telemedicine, and that brings an issue, do the patients have equipment for telemedicine, a computer, we take it for granted, but it may not be. So given those resources, organizing some local centers with this Men’s Health Day, just to get people in a room and educate them, but also learning from them what are the barriers to take it into account, not talk down to them, but learning with them and from them. 

The other thing is research and that will have to do a better job to include an offer in an equitable manor clinical trials to our patients including patients from different races and we are doing, I think, overall, okay, but we are not doing enough, we have to do better in order to provide this opportunities to our patients and the role of patient navigators is great. We can set examples, and we have patients who feel much more comfortable when they have a patient navigator. Sometimes if it happens to be in the same race with a patient then the patient feels more comfortable. They have someone that they can trust or it will be easier to talk to, and I think we should definitely improve and work harder to provide access to research inequitable manor to our patients. The last point I would say is, patient co-pay assistance programs and foundations, I think we can definitely include more resources to our patients, philanthropy, foundation support and state programs in order to give those patients the resource they need again to achieve this holy grail, which is equitable health care. 

Dr. Nicole Rochester: 

I love that you all are focusing on equity, which as we know, is giving every patient what they need in order to achieve their optimal health, and as both of you have stated, that’s very different than equality, and so this concept that we really have to meet our patients where they are, and that some of our patients may be a little bit more than others, and that’s okay, in fact, that’s really what we have to do in order to eliminate these disparities, so I really appreciate both of your thoughts and that’s a great lead in to our next segment, which is really focused on racial and ethnic disparities, and both of you have kind of touched on this a little bit already, so we know that there are as with every other type of cancer and every other disease, there are significant health disparities with BIPOC patients, and so Dr. Nyame, I’d love for you to talk about specifically with prostate cancer, some of the disparities that you see in your practice and in your research, and then what are some things that patients of color can do to protect themselves from these inequities? 

Dr. Nyame: 

This is a very important topic for me, it’s something that I am very passionate about, and as Dr. Grivas alluded to am doing a lot of research on, and I think the statistics are so grey. Black men are 80% more likely to be diagnosed with prostate cancer. So the average man in the United States has a one and nine lifetime risk of being diagnosed prostate cancer, that’s probably one in six or one in seven black men. Black men are twice as likely to die from prostate cancer compared to men of other races and ethnicity in the United States, and a lot of this is driven by the social milieu and factors that we’ve talked about today. What troubles me is when we talk about these statistics, I fear that that in of itself is crippling for some black men. If I have this diagnosis and I’m not gonna do well. Why should I do anything? And I can tell you that the literature and all the research that we do, and it gets refreshed every 10 years or so, someone will do the study and it shows that if we have Black men and men of other races or white men, and we give them the same treatment for the same level of disease, that the outcomes are actually very similar, and a better way to state that for me is if you’re diagnosed early and you get the treatment that you should get irrespective of your race, it seems like outcomes can be quite good. 

And so a lot of what we see with regards to prostate cancer inequities are driven by lower treatment rates and probably an impact of lower quality care. And when I say that, what does that mean? Well, do you get your care at places like the Seattle Cancer Care Alliance or the Cleveland Clinic, or John Hopkins or MD Anderson, where you have providers who are expert and do a lot of prostate cancer care, or are you being seen by someone in the community who I guarantee is an excellent clinician, but doesn’t have the same resources and the same expertise in the sense of being focused on one disease process or one set of cancers, for instance, we are genital urinary cancer specialist, a fancy term for being cancer doctors of the plumbing system, but because that’s all we focus on, we know a lot about the process we know what works, and we know what the standards of care. So I think when you can get the right treatment at the right time, and you can get it from teams that are really specialized in this, that our outcomes are going to not care about what your self-defined races when you check box. 

The problem is, how do we get… How do we close that gap that exists currently that doesn’t allow people to get that care, and I think we’ve talked about rurality, so I think… I grew up in Oklahoma, and I could see that if you are in the sticks in Oklahoma and you’re not near a cancer center, like something down in Dallas, that your care might be impacted, but… Especially if you have to travel a lot and it’s expensive. But we have major US cities like Los Angeles where you may share a zip code with a millionaire but use very different health services, so it’s not always a reflection of how far you have to travel, but it also is factors about how welcoming institutions that provide high quality care can feel for populations like our BIPOC populations who sometimes have been the subject of medical experimentation and lower quality care sometimes because they might not get shuttled to the same services historically, and I think we have a lot to undo to rebuild the trust that is required to have black men not be fearful of seeking care from us, but be trusting. 

Dr. Nicole Rochester: 

Absolutely, and certainly the COVID pandemic has really brought that whole mistrust and distrust to light, so I appreciate you touching on that. We’re going to move to talk about treatment access, and I love how this conversation is flowing because so many of these elements have already been discussed, so we’re gonna talk about treatment access for prostate cancer patients, and we know that sometimes the barriers that patients face, as you mentioned actually limit their access to quality care and to appropriate treatment. So, Dr. Grivas, how can we ensure that a patient’s geographic location doesn’t dictate the quality of care that they receive? 

 Dr. Grivas: 

A very important question for sure, and I think as you point it out, we have tasked upon this before, but I think it is definitely much more to be said and done. More importantly, I think the location has to do with multiple differences in social constructs, right? The location of the distance from a cancer center with expertise is one thing at the time to get to the cancer center is related to that, and also the social support that the patient may have, if for example, a particular treatment, for example, a clinical trial, the requires a weekly visit to the cancer center, is that the feasible thing for the patient who lives miles and miles away in the rural areas of Oklahoma as Dr. Nyame mentioned or somewhere else. Can we design a clinical trial that are more friendly to these scenarios that require less frequent visits. Can we provide, if possible, funding for housing closer to the Cancer Center, and there are examples of cancer centers doing that. They provide temporary housing for the patient to be able be close the cancer center, so they don’t even worry about going back and forth across the state lines sometimes. 

The other thing, of course, is insurance coverage, and again, this can have some relation to location, and it’s something we have to think about, how can we help our patients who have significant copays because of the recommended insurance to that location being supported by foundation or all other funds that the cancer center or the state, or again, other foundations, we have. The other issues about diagnostics and treatments, there has been some interesting discussion about particularly prostate cancer, about access to what we call next generation sequencing, which is a diagnostic test aiming to profile or fingerprint the cancer DNA to look for particular mutations that the cancer may have that may lead to a particular treatment options. 

If, for example, mutation A is present, can we use a drug X that might be relevant in that context of a mutation and a recent data that was presented at ASCO 2021 showed that if you look at those mutations, they’re not very different between, for example, white and Black patients, there are similar types and frequencies of mutations. What is different is access to the test and, of course, access to the [inaudible] of the test. So I think we have to do a better job bringing ourselves to the community, extending our opportunities to the patient to get connected with the healthcare system, and they’ll build bridges to bring the patient and closer to the cancer center offering those tests. Work with patient navigation to help patients understand the significant value of the follow-up, but also provide them with a way that there’s equitable access to diagnostics and treatments. 

 Dr. Nicole Rochester: 

Thank you, thank you so much, Dr. Grivas and you’ve touched on something that I’m going to ask Dr. Nyame to elaborate on which is these fancy tests and these new technologies and things, and what we know is that a lot of times the patient themselves, if they are not aware of these particular tests, then because of all the disparities that we’ve talked about, they may not even be offered to them. And so a question for you, Dr. Nyame, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options and diagnostic options that Dr. Grivas just spoke of? 

Dr. Nyame: 

You know that’s very challenging because Dr. Grivas, and I see this in our clinical practice, we have patients who are very savvy, that’ll come in and say that I’ve heard that there’s a PSM in San Francisco. Do you have it in Seattle? If you don’t have it in Seattle, I’m gonna go to San Francisco. And for every patient I had like that, who might be, Hey, have you read this latest article, I can have someone who has no idea of what’s going on with their diagnosis, and so how we create opportunities to bring those patients and know very little up to somewhere close, maybe not quite to the demanding the PSMA or a fancy scan level, but sophisticated enough to feel empowered in their health decision-making as something where I think we need to do research because we know that certain tools, navigation, advocacy groups can help in that arena, but I think that we need to understand what the tools are that patients want. What’s interesting is when you query patients, which we’ve done in a study and you say, What are the most pressing issues for you in your prostate cancer diagnosis, whether it’s in the localized setting or in the advanced or metastatic setting, the one thing that has resonated over and over again, irrespective of race is I need help making decisions, I need tools that will make it, me more efficient in how I make my decisions. And so I think without punting the answer too much, we need to do better, and I think part of that starts with listening. I do think that providers can be trained to provide that information in a more efficient manner. We do not… We as clinicians, are built into a system where the number of patients we see really correlates with how we get paid, and there’s not a doctor that doesn’t go to work excited to educate and build relationships with patients, that’s not the case, but there is a time crunch and I feel like in situations where there is a bigger gap and knowledge and understanding, we often don’t have enough time and built into our day to have the discussion, so for me, for a lot of my patients who I feel like have a lower understanding of what’s going on with regards to their prostate cancer diagnosis, it’s really important for me to build into our visit the understanding that whatever we don’t cover can be addressed at a later time and that we don’t have to make a decision with that at particular visit. So when I think about this, it’s sort of like your favorite barbershop or your favorite grocery store, your favorite sandwich place, the relationships matter. 

And I think when we talk about empowering patients to be advocates for themselves in their clinical visits, I think there needs to be an understanding from patients that if it doesn’t feel right, that they have options and to take their time in the decision. Prostate cancer, unlike other diseases, that Dr. Grivas and I treat doesn’t have to have the dial turn to 10 or 11 right away, and we need to make a decision because time is extremely sensitive, even in our most aggressive localized settings, which is what I treat, we have the opportunity to take weeks, if not months, to come to a decision. 

Dr. Nicole Rochester: 

Thank you, thank you so much, I appreciate that. And certainly as a physician who’s also a health advocate, I strongly agree with what you said about if the relationship is not working, that there are options, and I know that that may not always be the case depending on where patients live, but I regularly encourage my clients to sometimes you have to look somewhere else, sometimes you have to get a second opinion or maybe even fire your doctor if the relationship is not mutually beneficial, so I appreciate you sharing that. Dr. Grivas, do you have anything to add in terms of how patients can take a proactive approach to their healthcare and how they can build this confidence we’ve been talking about and express their concerns to their medical team? 

Dr. Grivas: 

I think Dr. Nyame covered it so well. I think it’s critically important for all of us to recognize that the finding out the why is probably the key to answer those questions, why there is this distrust, why someone is not paying attention so her own health because they have to try to make ends meet and keep family fed during the day time, and they don’t have time to think about their own health as Dr. Nyame mentioned before, at the same time, empowering the patient that they are the center of this relationship. 

Why doesn’t Dr. Nyame go to the clinic in the morning is because of patients, so our training is patient-centered and our practice is patient-centered and our research is patient-centered, so the patient should feel that right from the door, that this is a service to them. And we’re doing what we’re doing to help their life being longer, longer survival, as we call it, or better, better quality of life, and listening to the patient’s needs is important because of the time crunch that Dr. Nyame mentioned before, I think many of us, probably all of us are within situations where we don’t have enough time to listen advocate, what the person have to say, that’s why I think it’s important to have opportunities for separate visits and utilize better other mechanisms, exact mechanisms, patient navigation I think it’s a critical part of our care, social workers, case managers, financial counselors, nutritionist, genetic counselors, looking at genetics in for the disposition to cancer which is much more common than we think occurrences sometimes we be higher in some certain populations. Having this service available to patients, can help a lot because they will give them knowledge, and knowledge is power by itself, so give them the center, we’re here for them. Why they’re here, it’s because we want to help them and giving them also resources, they need to get now let’s information, when they feel they have more knowledge and they feel that they have control, they can communicate back and give feedback of how we can do better and also, what are the priorities of their needs, so we can address those, what matters to the patient, and this can apply to base and care, and also is what questions we’re asking? Research should be defined by patient priority, so all of those factors should be a dialogue with a patient, I think advocacy groups can be a great liaison to help us disseminate this concept and help again, empowering the patients. I struggle believe that explaining the why and giving knowledge, the data points in a simple and lay manner, can patients think being more in control. 

 
Dr. Nicole Rochester: 

Absolutely, thank you, both of you. I love the patient-centered focus, that is something that admittedly, we’ve gotten away from that to some degree in medicine because of the time crunches that both of you have mentioned, and I love that you said knowledge is power. So as we close, I’d love for each of you to share maybe a couple of key questions that patients, our care partners facing prostate cancer should ask of their treatment team to ensure that they’re receiving appropriate care. 

So we’ll start with you, Nyame. Any key questions that patients should be asking their care team when they seek treatment or diagnosis of prostate cancer. 

Absolutely, I think that there’s a long list. Actually, I’ll tell you, my new prostate cancer diagnosis visits are usually my longest because there’s a lot to consider. I do think depending on what you’re having done and what you’re being considered for, so let’s say in the localized setting, prostate cancer is confined to the prostate, and you’re thinking about treatment like a surgery or radiation therapy, you really want to know what that center and what that provider’s experience is because we have a lot of supporting evidence that the more people doing this… No one’s going to be surprised by what I’m about to say, but the more that someone does is the better they’re gonna be at it. Okay, and so making sure your team has a good experience with what you’re seeking to have done is important, and I think it’s well within your rights as a patient to understand that, so I think advocate for that. Secondly, I think basic questions, just to understand the relationship, I think… I like it when patients wanna know a little bit about me because I’m gonna be… They’re gonna be in my hands, and so again, the importance of that relationship building and your visit is crucial. 

Lastly, I think when you come to the visit, have a list of questions based off of what you’ve researched and write them down, I find my most sophisticated patients or crossing off questions as I’m talking, ’cause they came prepared and so that preparation… The act of doing a little bit of reading, there are a lot of resources, the Prostate Cancer Foundation, for instance, has a very nice patient guide that’s written by patients and language that’s really digestible and edited by experts, and so going through that and coming with your list of questions, I think is a really important thing for your visit, and those are just a few things I can think of that can lead to a meaningful clinic visit and exchange. 

 
Dr. Nicole Rochester: 

Excellent, I’m a huge fan of questions and being prepared for visits, what about you, Dr. Grivas are there one or two key questions that you feel patients or their care partners should ask? 

Dr. Grivas: 

Great answers by Dr. Nyame, I totally agree. I think started with the basics, What this diagnosis means for me, what is the current extent of the cancer, we call the states, and what is the outlook, what is the overall prognosis or at least estimate of the outcome, that’s a reasonable question to ask and again some places more detail, some others may not, and it’s important for us also to ask the base and what they want to know, how much they want to know, I would take in things of them, they want to know the entirety of the information because it makes… Help them make decisions. The other, I think it’s important point, what are the treatment options and what is the intent of the treatment, what are we trying to achieve by giving treatment, are we trying to cure, eradicate or eliminate the culture, are we to prolong life, are we trying to improve quality of life or are we just trying control the cancer, so what are the goals of the treatment and what are the metrics of success, so what will be a successful outcome of that treatment? How do we measure that? And I think it’s also important. 

Two more points, I would if I may. I think, again, going back to the importance of genetic counseling even more in prostate cancer, I think we recognize the importance in the aspect of patient treatment because some treatment options may depend on finding mutations. But also the importance of the family, how much can prevent cancers in the brother family, close and extended family, if we find the mutation, can we set this mutation for other family members and do screening to prevent cancer prevention is ideal if we can do that and I think that’s a good discussion, so the patient can come to the visit if possible, by doing some homework about the family history. It’s hard for of us now, what’s happening in that chasm, right? But we do have the time to be informed of the importance of the question, this can help and expedite in our resources like to genetic counseling. And the last points, research, I want to again make the point, we should all do a better job to offer innovative clinical trials to patients across races, and it should be a very important point again equitable healthcare. And the patient should ask are clinical trials an option for me and do I have a clinical trial option? And I think it’s a great question, and hopefully this can help the patient get to integrative treatment, but also help the field. 

The research would get important answers, and the important answers can be for all the community and the specific populations, if we do trials, clinical trials with only the white patients, do we have the answer for the black patients, or we have the answer for both and other races and ethnicities as well. 

Dr. Nyame: 

And I do wanna take this opportunity to add one more thing because Dr. Grivas was talked about what does your treatment mean for you, and in this discussion about prostate cancer, we cannot talk about what questions do you bring without mentioning the impact, quality of life of our treatments, and I think that sometimes this is the elephant in the room that leads to the decision to not pursue treatment, and so I want to take this opportunity as the urologist to say, This is the time to talk about what treatment is gonna do for sexual function. This is the time to talk about what treatment means for your urinary symptoms and quality of life, a good and healthy discussion around these things need to happen during your visit, because I think sometimes what patients expect to have happen with treatment and reality don’t match. And you have an expert in front of you that can really give you some input as to what to expect, and in a similar vein, when you meet with survivors, these are some of the things that I know patients tell me they’re worried about, and these are people who are living it, that can give you really valuable information on that piece of quality of life, and I hope that those conversations can help us close that treatment disparity that we see between black men and white men with prostate cancer. 

 Dr. Nicole Rochester: 

Such wonderful points. This has been an amazing conversation. Thank you so much, Dr. Nyame and thank you Dr. Grivas for just illuminating so many important issues, just to briefly summarize, we’ve talked about the disparities that exist in prostate cancer, diagnosis and treatment based on geographic location, based on finances, insurance that is access and… Yes, even race and ethnicity, and you all have done a wonderful job providing solutions, we’ve talked about the importance of advocating for yourself and your loved ones, the importance of being educated and doing some research, coming to those visits with your questions, making sure that you form a relationship with your treating physicians and sometimes perhaps seeking someone else, if that’s not possible, so just… So many gems, and I just wanna thank both of you for spending this time with us today, and I wanna thank you all for tuning in to this Patient Empowerment Network program. I’m Dr. Nicole Rochester, and thank you for joining us. 

Dr. Grivas: 

Thank you. 

What Are Common Barriers Breast Cancer Patients Seeking Care Face?

What Are Common Barriers Breast Cancer Patients Seeking Care Face? from Patient Empowerment Network on Vimeo.

What are some barriers breast cancer patients face in their access to care? Host Dr. Nicole Rochester asks Dr. Regina Hampton to share her perspective on obstacles that prevent optimal breast cancer care and how we can help get more patients on their path to empowerment.

See More From the Best Care No Matter Where You Live Program


Related Programs:

What Key Questions Should Newly Diagnosed Breast Cancer Patients Ask Providers?


Transcript:

Dr. Nicole Rochester: 

So my first question for you, Dr. Hampton is, what are the common barriers, breast cancer patients and their families face when seeking care, what are the issues that our patients and families are facing?  

Dr. Regina Hampton: 

I think one of the big issues is having access to a breast center, so a multidisciplinary breast center, and so they tend to be in sort of in larger cities, sort of downtown, and many minority communities in these days can’t afford to live downtown. So they’re living on the outskirts, so they may…while they may have great doctors there, many times those doctors may not be up on the latest and the greatest, they may not have access to clinical trials, and so that really truly is a barrier in that sometimes our minority patients may get sub-optimal care. 

Dr. Nicole Rochester: 

That’s very concerning. I’m glad that you brought that up, that we’re not disparaging the doctors that practice in those settings, but what you said is really important that they may not have access to some of those up-to-date clinical trials and things that we may see at academic centers, so thank you for bringing that to our attention. 

How Can Breast Cancer Providers and Patients Help Address BIPOC Disparities?

How Can Breast Cancer Providers and Patients Help Address BIPOC Disparities? from Patient Empowerment Network on Vimeo.

Can breast cancer providers and patients help address BIPOC disparities? Dr. Regina Hampton provides insight on differences she’s seen with BIPOC patients moving forward after diagnosis and ways patients can empower themselves toward receiving optimal care. 

See More From the Best Care No Matter Where You Live Program


Related Programs:

What Steps Can Breast Cancer Patients Take To Be More Proactive?


Transcript:

Dr. Nicole Rochester: 

Dr. Hampton, you mentioned that you in practice have seen differences in the way that your white patients handle their breast cancer diagnosis compared to your Black patients, and I was wondering if you’d be willing to expand on that just a little bit, what are some of those differences that you’ve seen between those two groups? 

Dr. Regina Hampton: 

So, I noticed that in the white women that I’ve diagnosed, that they just seem to take the diagnosis and are ready to jump on board, ready to move forward with treatment and figuring out what needs to be done. And I’ve found with my African American women, it just, it takes a little bit longer explaining, trying to get them to understand the how, the why, what we’re getting ready to do, and even with that explanation, there’s still some hesitancy. And so, I’m curious to know what is that and why is that? And really hear from the patient’s perspective.   

Dr. Nicole Rochester: 

That’s really interesting because, of course, right now in the midst of the pandemic, that just mirrors what we’re seeing with COVID-19 vaccination, and I wonder if what you’re seeing with your African American patients with breast cancer has to do with mistrust, and what we talked about just related to some of the history regarding the treatment of people of color by the health care system and racism and bias, do you think that there’s a level of mistrust of the healthcare system that may be playing into some of that reluctance that you’re seeing? 

Dr. Regina Hampton: 

Absolutely, absolutely, yes. And I’d just be curious to just hear from that patient perspective, I think a lot of those things, as we saw in the pandemic, we carry those things even though so much has changed from back in the day. So, it’s going to be interesting to hear that from the patient perspective and then to be able to hopefully share that information, and I think it could translate, as you were mentioning in to other areas of health, and see if we could then take that to a broader audience and try and make a difference in these disparities. 

How Can BIPOC Breast Cancer Patients Overcome Health Disparities?

How Can BIPOC Breast Cancer Patients Overcome Health Disparities? from Patient Empowerment Network on Vimeo.

How can BIPOC breast cancer patients help overcome health disparities? Experts Dr. Nicole Rochester and Dr. Regina Hampton share ways to be more proactive with breast cancer screening, in interaction with healthcare providers, and in sharing breast cancer stories.

See More From the Best Care No Matter Where You Live Program


Related Programs:

How Can Breast Cancer Patients Connect to Patient-Centered Care?


Transcript:

Dr. Nicole Rochester:

You alluded to the different care sometimes that patients of color receive. So I want to shift and talk about racial and ethnic inequities, and unfortunately, we know that with every other illness, unfortunately similarly with breast cancer, there’s a long history of women, particularly in BIPOC communities receiving disparate care, a lot of times they are not offered some of these treatment options, maybe they don’t have access to some of the breast cancer centers, so can you just share some information about some of the disparities that we see, in breast cancer? And then I’m curious to know how you specifically address them being a Black woman breast surgeon 

Dr. Regina Hampton: 

So, one of the things to know is that as African American women, we tend to get breast cancer at younger ages, and not a lot of physicians know and can recognize that, so it is very important that when a young African American woman has a breast complaint that that’s taken seriously and worked up to make sure that we’re not missing a breast cancer. So, I think it’s important again to have those conversations talking about family history, because we don’t talk about family history, in our families. I’ve had a patient just come in and say, Yeah, well, grandma had a breast missing, no no nobody said cancer, well they probably should’ve said cancer, so we’ve gotta have those health conversations in our family, so I think it’s important for patients to really be their advocate because many times these young women are dismissed and thought, “Oh, you’re too young,” and I’ve even been kind of fooled myself by some of the young women, so knowing that younger women get breast cancer at younger ages, if you think something is going on, you need to really take that seriously. And then I think it’s also talking about the options, we do tend to get a more aggressive form of breast cancer, but the treatments have changed, and while chemotherapy may be indicated for many patients, it’s not for all patients, and so really taking that time to understand what all the options are, “Well, why are you recommending chemotherapy? What’s going to be the benefit for me? What’s the survival benefit for me? What are the side effects? How this going to affect my sex life? How is this going to affect me and my relationship with my children, with work?” 

So really just asking all of those important questions, I think it’s also important to ask for what you want. I don’t think we speak up enough, there was actually a study that I was looking out that shows that we don’t get offered reconstruction as often as our white counterparts. The disparity is about 24 percent, and that’s really huge. That’s important. So, we really need to ask those questions and to know, well, maybe I can’t get reconstruction at this juncture, but can I get it in the future, there’s a federal law that covers all of those for all breast cancer patients, no matter what color you are, so again, it’s just asking those questions. Sometimes taking somebody and having somebody else ask the questions can be helpful. 

Dr. Nicole Rochester: 

Yeah, making somebody else the bad guy, so to speak. Absolutely, any time I have a conversation about health disparities and health and inequities, honestly, I get a little angry inside because for you to share that statistic that we’re not as often offered reconstructive surgery, that is a huge part of our identity as women. Our appearance, our self-esteem, and I just want to point out for our viewers that unfortunately, as Dr. Hampton has stated. A lot of times, these disparities are sometimes due to lack of knowledge, so Dr. Hampton mentioned that Black women tend to get breast cancer at a younger age, and you need to know that if you’re seeing a breast surgeon or even an internist or oncologist who is not a person of color or who is not up-to-date on that information, they may not know those statistics, but unfortunately, there also is this bias that you’ve talked about as well, and we know that we all have bias, we are exposed regularly to negative images, negative stereotypes of African Americans, Latino, Native Americans, and doctors are not immune to that bias and we carry those biases into the exam room, and so for people of color with breast cancer, it is particularly important that you follow these recommendations that Dr. Hampton has mentioned, and I just love that really all of them center around advocacy and speaking up for yourself and standing up for yourself. Are there any other things, Dr. Hampton in closing that you can think of specifically for patients of color, things that they can do to really protect themselves from these inequities that exist in breast cancer care. 

 Dr. Regina Hampton: 

I think we have to really start at the beginning and being more proactive about our screening, making sure that we’re getting those mammograms, making sure that when we get a mammogram, we’re asking for the best mammogram if there’s new 3D technology, making sure that you get that so that we can find things at an earlier stage, and I think also we have to call it kind of throw out all the myths. We got to let them go people, we got to let them go. And I know there have been some challenges and we have had some historical issues, I think Dr. Rochester and I both agree and acknowledge that, but at some point, we have to move forward and be more proactive and really knock down some of those barriers and not let some of those old things that happen hold us back from the new technologies that are available. So, I think the good thing, we’re in a day and age where most early-stage cancers are not a death sentence and we find them early, we can treat them early, and I think we have to just talk in our community, I’m always amazed that many Black women still don’t share their stories. 

So, you have women who are in the same circle and don’t realize that the person two seats down went through breast cancer, and you all still go to coffee, and she didn’t share her story. And now you’re facing breast cancer, you’re thinking, “Wow, I’m just alone.” And so, I think we have to really share that, not only in our families, but we’ve got to share it with our sisters, because you never know who you’re going to be helping through that journey. I find it interesting that there’s really a difference between how African American women take a breast cancer diagnosis and white women take a breast cancer diagnosis, and we’re getting ready to really look at this, and I’m really excited about it because I really want to know what is it and why is there such a difference? But I think we have to not hide, we have to really share our stories, and sharing your story is going to help somebody else. 

Dr. Nicole Rochester: 

Absolutely, I think part of the hiding and even what you mentioned about the family history not being shared as part of this kind of myth that we have to be strong or that Black women are invincible and that we can’t be vulnerable. And you’re absolutely right, we need to talk about this in our circles, we need to talk about it with our daughters or nieces, all of our family members, so that we’re all educated and empowered.  

Dr. Regina Hampton: 

It’s funny you mentioned that because that’s one of the first things I tell patients to do. I say, “Look, you’ve got to let other people take over, because we’ve got work to do, and kids have got to eat peanut butter and jelly, they’ve just got to eat some peanut butter and jelly, they’ll be all right, but you’ve got to put yourself first.” And I think if we put ourselves first, put our screenings first, we’re good about getting our kids, getting them to their health appointments, we as women have got to get ourselves to our health appointments and put ourselves first, so that we can be there for our families. 

Dr. Nicole Rochester: 

You just reminded me of something we as women, are really good at taking care of our kids and our spouses and other members of our family, but then we do that at the expense of ourselves, and I can say when I used to practice as a pediatrician, we were trained to address postpartum moms, and people realize early on that, hey, okay, they may not have their postpartum visit for six weeks, but they’re taking that baby to the pediatrician in two or three days, and so we would talk with the postpartum moms about screening them for depression and things of that nature, but I never thought about…you literally just gave me this idea that maybe pediatricians should also be checking in with our patients’ moms and asking them about their screening, I don’t know if they would be offended by that, but it truly takes a village, and so maybe we need to be encouraging the parents of our patients and making sure that they’re getting their regular screenings and their health maintenance as well, because you’re right, we will look out for the babies, and we will put ourselves on that back burner every single time. 

How Can CLL Patients Get the Best Care No Matter Geographic Location?

For chronic lymphocytic leukemia (CLL) patients, treatment access has been limited for some Black, Indigenous, and People of Color (BIPOC) patients, non-native English speakers, and those who live in rural areas due to lack of access to technology devices, stable Internet access, and other socioeconomic factors. And though more needs to be done to improve understanding of racial variances in CLL biology and other outcome factors, the COVID-19 pandemic has actually brought about some unexpected changes in access to CLL treatment.

Patient Empowerment Network is working to help improve health outcomes for underserved CLL patients through the Best CLL Care No Matter Where You Live program. Let’s take a look at key learnings from a powerful self-advocacy vignette to advice from an expert panel with the goal of helping CLL patients on their health journeys to gain confidence around treatment decisions no matter geographic location.

CLL Patient and Care Partner Advice

Cancer patients and care partners may encounter some obstacles to patient care and access to clinical trials. But a variety of technology, language, patient monitoring, and support resources have emerged to aid in patient care including:

  •  Telemedicine options including televisits via smartphones, tablets, and computers
  •  Patient portals for requesting prescription refills, reading test results, and scheduling appointments for cancer care
  • Translation services via an in-person interpreter, remote interpreter, and multi-language translation of information for cancer patients
  • Remote monitoring devices for blood pressure, heart monitoring, sleep tracking, and more
  • Online patient support resources including cancer treatment information and online patient support groups

According to Dr. Kathy Kim from UC Davis School of Medicine, “..so there’s been a huge upsurge in the number of hospitals and clinics and practices that have been able to implement telehealth with their patients. But there are other tools that again, have been in development that are now starting to take off under the last year, and those are remote patient monitoring devices, these are either specific medical devices, like blood pressure machines, glucose meters, some heart monitors, sleep monitors…devices that check your oxygen saturation. So, there are many medical devices that are for use in the home, that are either covered by insurance or people can buy them at the drugstore, and what has really come about this year is the ability to connect the data from the device you have in your home to your provider, so that’s been in place, but we really haven’t implemented it very many places, and now lots of places are allowing that connection to happen. So, the patient can use the device in their home and get it connected to the and have it sent to the hospital or to their doctor, so their doctor can be watching the data and also monitoring them, so that’s one really wonderful piece of progress that we’ve had in the past year.” And additional tools to help improve patient care will continue in the future.

CLL Patient Self-Advocacy Experience

Sharing the patient perspective, CLL patient William Marks discusses some of the details of his patient journey. From his diagnosis to getting connected to Dr. Awan via televisits during the COVID-19 pandemic, William shares the value of getting a second opinion, lifestyle improvements he made, and things he found helpful in taking charge to get the best CLL care possible.

William took charge of his care when he didn’t feel comfortable with his first opinion, “I had an oncologist, they wanted to do a treatment on me that I really didn’t agree with, and I found a doctor who first started out saying, “We don’t want to do this right now, we just want to kind of see what happens” and then to me, it turned out successful.”

And William took a proactive approach to his care, “I started from the beginning, I started doing everything. I started reading everything I could, I started trying to research everything, I changed my eating habits, I lost weight, I did everything I could personally, but I knew that the CLL that I had, I could not conquer by myself and alone. And so that’s when I knew, you can do everything you can, you can take all the herbs and supplements and everything you can, but then CLL is something that you really like you said, you need someone who specializes in it to know…but I’m really doing real well after six years, and I do believe that Dr. Awan saved my life.”

If you or a loved one is a CLL patient, tune in to the webinar replay to learn helpful advice for improving access to the best and latest CLL treatments no matter location or circumstances, receiving free CLL remote consultations, taking an active role in your care, working as a team with your CLL specialist, and supporting the CLL patient journey.


Resources

Increasing Treatment Access for Every CLL Patient No Matter Location

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

How Can CLL Patients Mitigate Distance and Technology Barriers to Care?

Sources

Stephanie Williams, MD , Amy A. Ayers, MPH , Michelle A. T. Hildebrandt, PhD , Lorna H. McNeill, PhD , Christopher R. Flowers, MD, MS (2020). Strategies for Overcoming Disparities for Patients With Hematologic Malignancies and for Improving Enrollment on Clinical Trials. Oncology. Accessed May 26, 2021. https://www.cancernetwork.com/view/strategies-for-overcoming-disparities-for-patients-with-hematologic-malignancies-and-for

Christopher R. Flowers, MD, MS and  Barbara Pro, MD (2013). Racial differences in chronic lymphocytic leukemia: Digging deeper. Cancer. Accessed May 26, 2021. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3834561/

How Can We Address Noted Disparities in Multiple Myeloma?

How Can We Address Noted Disparities in Multiple Myeloma? from Patient Empowerment Network on Vimeo

What can patients and healthcare providers do to improve health disparities for myeloma patients? Expert Dr. Joseph Mikhael explains the communities that need more outreach about myeloma and those he views as vital to educating about myeloma risk and symptoms for earlier diagnosis and better health outcomes.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 
How Can Myeloma Patients Take Disease Ownership and Connect With Resources?

How Can Myeloma Patients Take Disease Ownership and Connect With Resources?

What Are the Benefits of Telemedicine for Myeloma Patients?

Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

 

Transcript:

Dr. Joseph Mikhael:

Well, I have to tell you, this is a very personal issue for me, disparities in multiple myeloma, and I have the privilege of being involved in many programs and platforms to try and address this. And like with any major consideration, there isn’t a simple solution, it is going to take a multi-fold solution that has many parts. The first part that I think is critical is engagement of our communities, whether it is the Black community, the Hispanic community, even though in more rural areas or patients uninsured, we really require a kind of an engagement that’s real to build trust, to build confidence, this is stemmed from years of mistrust and understandably, so that we have to re-build.

I try to do that personally in my practice, but advocate for it on a larger sphere. Secondly, I want to empower my patients to learn and for communities to learn, whether someone has myeloma might have my load or as already myeloma, and I don’t have it might have it, or do you have it? Those patients need to be educated about myeloma so that they can understand who’s at risk and facilitate a more early and a more accurate diagnosis. Thirdly, I believe very much so, in educating the primary care world, the majority of patients with myeloma are still diagnosed by a primary care physician. They may ultimately see a hematologist-oncologist to confirm that, but the suspicion comes at the primary care level. And so I’m involved in multiple programs to educate primary care docs to think about myeloma, as I like to say, “If you don’t take a temperature, a patient won’t have a fever, you need to look for it.” And so if there are certain signs or symptoms that may include bone pain, significant fatigue, signs that we see like protein in the urine or a low hemoglobin or kidney dysfunction, these things need to push us to look for multiple myeloma. And then lastly, to look at disparity as an important area of work across the whole board that we need to better access to have better access for clinical trials and for the therapies that we know will benefit our patients, and that’s on us as physicians. But it’s also on the community at large, our regulators, our insurance companies.

Those are the kinds of things that I’m working on so that we can make a long-standing difference and really start to reduce this currently awful disparity in multiple myeloma.

 

Why Is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

Why is Multiple Myeloma Diagnosed Much Later in BIPOC Patients? from Patient Empowerment Network on Vimeo

How do multiple myeloma diagnosis and treatment differ in BIPOC communities? Expert Dr. Joseph Mikhael details some statistics on BIPOC myeloma patients, factors that can impact myeloma survival rates, and myeloma clinical trial participation rates of African Americans.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 
Is MGUS More Prevalent in BIPOC Communities?

Is MGUS More Prevalent in BIPOC Communities?

 

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Can We Address Noted Disparities in Multiple Myeloma?

How Can We Address Noted Disparities in Multiple Myeloma?

 

Transcript:

Dr. Joseph Mikhael:

We know that multiple myeloma is a unique disease in the African American, in the Black community, really for many reasons, primarily the disease is twice as common in Blacks than it is in Caucasians, we don’t fully understand all of the rationale and the understanding of that, the science behind that, but we know it’s just twice as prevalent.  What’s perhaps most disturbing is that despite knowing that it is twice as common, it is often not recognized and not recognized in time. The average time to diagnosis from the onset of symptoms to an accurate diagnosis is significantly longer in the African American community than it would be in the Caucasian community, and that’s an unfortunate reality. And that along with the treatment that individuals have access to, we’ve learned, unfortunately, that African Americans are less likely to receive triplet therapies or the combinations of chemotherapy that are so important, transplant that we know is stem cell transplants are very important in the treatment of myeloma, and access to clinical trials. African Americans constitute somewhere between 17 percent to 20 percent of all myeloma patients in this country, but actually, only reflect about 5 percent to 6 percent of clinical trial participation, and all of that has led unfortunately to an inferior survival rate in African Americans compared to Caucasians.

We’ve seen huge advances in survival in myeloma over the last decade, but for every 1.3 years gained by Caucasian patients, we’ve only seen 0.8 years gained in Black patients, so this is a disparity that is disturbing and that we need to address.

The disparity in multiple myeloma is honestly, not only confined to the African American community, we see this in many other vulnerable communities, in particular, the Hispanic community, where we know that the disease is diagnosed at a younger age than we would typically see in the Caucasian community. Also reflective of the healthcare system in our country where many patients of the Hispanic background have less access to healthcare, and this clearly influences outcomes, and so as we study this more and appreciate it more, we come to understand that there are many vulnerable populations by virtue of race, by virtue of insurance status, by virtue of a documented status, all of these things, unfortunately, have a significant impact in a patient’s survival with multiple myeloma. COVID-19 has really affected so many things in the medical community. But thankfully, one of the things that we have not significantly seen, apart from for a period of time, reduced access to clinical trials, we have been able to maintain the supply of our key agents and treatments that we use in multiple myeloma. So I’m very thankful that I have not had to delay or cancel my patients’ treatments by virtue of a supply chain issue, we’re very grateful that that supply chain has pretty well been maintained after out the pandemic, and we trust will continue to be maintained.

Health Equity and Myeloproliferative Neoplasms (MPNs)

Health Equity and Myeloproliferative Neoplasms (MPNs) from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share their thoughts on how health equity can impact various MPN patients. They focus on a big factor in equity and MPN patients being location. Unfortunately, not everyone may have access to a specialist due to their geographic location. Summer who is living with myelofibrosis and her care partner Jeff both admit they were lucky to find a specialist in San Diego. Hear Jeff and Summer share The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

Digital Advocacy and Health Equity for CLL Patients

Telemedicine or telehealth – remote access to healthcare – has become widely used after the arrival of the coronavirus pandemic, especially by cancer patients. But the rise in telemedicine has also brought challenges to the vulnerable populations of Americans over age 65 and to low-income Americans who have struggles getting online. 

Among patients who are over age 65, only 55 percent to 60 percent of them have broadband access from home or own a smartphone. These patients also have challenges with completing information online, with only 60 percent who have the ability to send an email, to complete a form, and to locate a website. Among low-income patients, only 53 percent are digitally literate, and they also have lower rates of Internet use, broadband access, and smartphone ownership compared to other patient groups. 

Empowering Vulnerable Communities

As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) is working to foster change toward achieving equitable healthcare for all. In order to provide practical usage of telemedicine tools, PEN created the TelemEDucation Empowerment Resource Center for chronic lymphocytic leukemia (CLL) patients and their loved ones. Another resource, the digital sherpa™ program, helps cancer patients and their families become more tech-savvy by learning to use technology to their advantage during their cancer journey and beyond.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to CLL patients:

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits:

  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time so that you aren’t rushed when your appointment time arrives.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late.
  • Try your best to remain flexible and to be patient.
  • Try to write down your questions before your appointment to keep on track about things you want to learn during your visit.
  • Remain focused on the main purpose of your visit as much as possible. Polite small talk is fine but keep it to a minimum so that you can get the most out of your visit. 

CLL Patients Who Benefit the Most From Telemedicine

Not every CLL patient will be a good fit for telemedicine visit. Things to keep as top of mind for telemedicine visits:

  • CLL patients who are on active surveillance from their care providers are a natural fit for telemedicine. They can get periodic blood tests from a local laboratory, and the results can be sent electronically for their CLL specialist to evaluate.
  • Patients with high-risk genetic features or rapidly progressing CLL are not the ideal patient for care via telemedicine.

In the time of the coronavirus pandemic, remote monitoring has become part of standard healthcare terms. Some things for CLL patients to know:

  • Though it may be a new healthcare method for many patients, monitoring has actually been used for decades in the care of CLL patients and others with suppressed immune systems.
  • Remote monitoring is used to reduce the risk of infection to those with reduced immune system function, such as those with cancer and CLL.
  • Remote monitoring is a completely safe medical practice for CLL care when a patient’s blood work is monitored on a regular basis. Always ask your doctor if you’re unsure if you’re a candidate for remote monitoring or if you have questions about the frequency of your blood tests.

How Telemedicine Can Improve CLL Care

Now that even more CLL patients have become accustomed to using telemedicine care tools, CLL experts are looking to the future. Looking ahead:

  • Telemedicine can help CLL patients who live in very remote areas to gain access to clinical trials that weren’t accessible to them in the past.
  • CLL therapies will continue to improve for patients as a higher percentage of CLL patients participate in clinical trials.
  • The improvements in remote monitoring will bring more tools for CLL patients to do routine things like sending their heart rate and other things to their care provider in real time. 

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools are gaining both in usage and numbers, CLL patients can feel hopeful about improved care and treatment toward the future. As a step in that direction, take advantage of the resources below and continue to visit the TelemEDucation Empowerment Resource Center for informative content about CLL and telemedicine.


Resources for Telemedicine and CLL

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

What Subset of CLL Patients Should Utilize Telemedicine?

Will Telemedicine Be Part of Routine Management for CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

What CLL Population Will Benefit Most From Telemedicine?

Remote Monitoring

TelemEDicine ToolBox Visit Checklist

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Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Activate More Remote Monitoring for CLL?

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

What CLL Symptoms Can Be Monitored via Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

digital sherpa™ program

The Value of PEN: Bridging the Digital Divide

Bridging the Digital Divide from Patient Empowerment Network on Vimeo.

 Empowered patients who have access to knowledge and information about their illnesses, have better health outcomes, but with many of the best healthcare resources available online, a digital divide has formed among patients. Tech savvy patients are at a definite advantage, while some of the most vulnerable cancer patients, those 65 and older, don’t have the technical skills to access online resources. Patient Empowerment Network (PEN) is changing that with their Digitally Empowered® programs. The fifth and final video of the Value of PEN series highlights the digital sherpa Program, which is designed for people who are not tech savvy. The program helps older, disadvantaged patients and actively trains them, so they have the confidence to access online healthcare resources that are potentially lifesaving.

The digital sherpa® Program is a real advantage for patients, says PEN Board Member LaWanda Byrd. She explains that the program helps to bridge the digital gap so that patients can utilize all the technology available to them. She says many patients are not aware of the technology options and applications available. Through the program, patients are empowered to be more informed and more involved in managing their own care.

Patients don’t need to feel overwhelmed by learning the technology. The digital sherpa® Program is designed for people who aren’t tech savvy so that they can become tech savvy enough to get the information they need, says Board Member Scott Riccio. Access to more information helps patients make better decisions about their healthcare. 

PEN is improving health equity for vulnerable cancer patients through Digitally Empowered® programs. The free programs at PEN are available for all patients, no matter their age or circumstances, and they help provide better health outcomes for empowered patients. Watch the video and find out how you can get involved and get empowered through PEN.

Checking the Pulse on Multiple Myeloma Health Disparities

Even before the coronavirus pandemic arrived, health and patient support organizations made resolute efforts to examine and address health inequities for multiple myeloma patients in Black, Indigenous, and People of Color (BIPOC) communities. Diverse Health Hub and the Patient Empowerment Network partnered to help improve health outcomes for underserved myeloma patients through the Diverse Partners in Your Myeloma Care program. With a tumultuous year filled with the killing of George Floyd, social unrest, and coronavirus health disparities for BIPOC groups, these issues prompted us to focus on where things stand with multiple myeloma health disparities. We’ll take a look at what we know, what we’ve learned, and what help and resources are needed to continue advancing care for BIPOC myeloma patients.

Disparity Facts About BIPOC Myeloma Patients

  • Both Black Americans and Latina and Latino Americans show a myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, more frequently than others—.88 percent in Black Americans, .44 percent in Latina and Latino Americans, and .22 percent in white Americans.

  • Although multiple myeloma is diagnosed at a younger age in both Black Americans and Latina and Latino Americans, both groups are less likely to receive a transplant and start treatment later than patients of other races.

  • Black Americans are actually known to have less aggressive myeloma, which should show better health outcomes—yet that is not the case.

multiple myeloma diagnosis.png

Learnings About BIPOC Myeloma Patients

Black and other BIPOC patients often have mistrust of doctors and researchers due to past experiments like the Tuskegee Study and Henrietta Lacks – whose now infamous immortal HeLa cells were taken without her consent. “If I were to walk into any community, African American community, or underserved community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African Americans contributing, being donors, African Americans participating in trials. It all feeds over into everything that’s done in the African American community or underserved community in regards to healthcare,” says patient navigator Diahanna Vallentine.

Barriers to care must be overcome according to Dr. Sikander Ailawadhi from the Mayo Clinic, “Myeloma patients who are African-American and Hispanic typically get to the right treatment much later. In a lot of cases they may not get to the right treatment at all. We also know that the burden of cost of care is much higher for minority patients.”

Improvements are happening in care as explained by Dr. Ajay Nooka from Emory University School of Medicine, “What’s really interesting in this meeting is that there has been a lot of large database integrations, including one database called the National Cancer Database (NCBD) where people have looked at 20-year history of how these treatments have panned out. Which of the minority populations or which subset of patients gained the most benefit over the last 20 years? And we see minorities have gotten a lot of improvement and a lot of access to care over the last 20 years, but that’s not the end of the story, we have to catch up a lot more.”

The Path to Health Equity

Although the additional focus on health inequities has started to improve access to care, there is still a critical need to raise awareness about the treatment gaps for myeloma patients in BIPOC populations. How can myeloma patients get the best care no matter where they live when factors like age, geography, socioeconomic status, ethnicity, gender, and insurance type heavily influence the path to better health outcomes?

Some valuable steps that patients, community leaders, and healthcare providers can take to improve care include:

  • Support organizations providing educational materials to patients that are target specific BIPOC groups

  • Patients and advocates making the BIPOC voice heard by asking for funds from community and political leaders to improve care

  • Healthcare providers developing relationships and partnerships with political leaders and support organizations to continue building momentum in improving patient care

  • Patients taking advantage of social workers and patient navigators at their clinics and support organizations

  • Patients, advocates, and healthcare providers working to increase clinical trial participation

  • Healthcare providers integrating cultural competency as a universal approach in the healthcare model

Resources like myeloma patient resource guides, informational graphics, and the Myeloma Coach section on the Myeloma Crowd website provide valuable information for patients. And though trust of clinical trials by BIPOC populations remains an issue, there are initiatives like Diversity in Clinical Trials Benefits Everyone. BIPOC patients can take action working together with medical researchers to increase clinical trial participation to improve and refine myeloma treatment developments for specific patient populations. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” program is a public health initiative designed to remove the barriers that prevent inclusive access.

Participating in clinical trials not only will improve myeloma treatments down the line but also provides a minimum of standard of care treatment at no cost to the patient. It’s a win-win for both the patient who participates in the study and  also helps the progression of treatment for BIPOC patients diagnosed with myeloma in the future. Though progress has been made, patients, advocates, community leaders, and healthcare providers must take action to continue an upward movement to achieve equitable care that BIPOC myeloma patients deserve. Take advantage of the resources below and continue to visit our Multiple Myeloma Hub as we publish more on health equity developments for multiple myeloma.

Resources to Learn About Improving Myeloma Health Disparities

Disparities Around Health Technology Access for Subset of Myeloma Patients

Good News for Myeloma Treatment Today – Still Addressing Race-Associated Risks

2020 Shaping Up to Be a Big Year for Multiple Myeloma Treatment

How Can a Myeloma Patient Advocate/Financial Advisor Help

Is It Possible to Achieve Health Equity in Multiple Myeloma?

Are Myeloma Clinical Trials More Critical for African Americans?

A Multiple Myeloma Advocate’s Uphill Battle to Care

What Do Disparities in Multiple Myeloma Look Like?

How a Second Opinion Saved a Myeloma Patient’s Life 

Myths vs. Facts: Myeloma Health Disparities Care Infographic

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? Resource Guide

Diversity in Clinical Trials Benefits Everyone

Sources

How Can a Myeloma Patient Advocate/Financial Advisor Help? Patient Empowerment Network website. https://powerfulpatients.org/2020/08/17/how-can-a-myeloma-patient-advocate-financial-advisor-help/ Accessed October 19, 2020.

Is It Possible to Achieve Health Equity in Multiple Myeloma?

Is It Possible to Achieve Health Equity in Multiple Myeloma? from Patient Empowerment Network on Vimeo.

How can health equity be achieved for underserved communities in multiple myeloma patient care? Watch as a panel of myeloma experts explains.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

I want to ask each of you to answer a question. So how can we achieve health equity in the care of multiple myeloma patients sooner rather than later?

Diahanna Vallentine:

I think we all appreciate the fact that the African American or underserved communities do not have enough people that are either willing or know that we need to go into those communities the way they are, meet the people the way they are, so that we can provide them with education, with resources, that are available. I think that is one of the first steps. And fortunately, or unfortunately, with the racial problems we’re having in our country right now, a lot of governors and mayors are opening up opportunities that we got to get into the communities. And I think this might be a great opportunity for the myeloma community to perhaps step up and say we would like to be presented or represented in the community when there are funds and when the interest is really high. I think that if we could establish a foothold that way, then we can just go on and work toward lessening that gap and disparities in the undeserved communities.

Dr. Sikander Ailawadhi:

Diahanna, that was really nicely put. I think what I can add to that is that we basically are already seeing a lot more discussion, a lot more focus coming up to this topic of racial disparity in multiple myeloma at different levels. So, what we need to do is continue to build upon that momentum, continue to build the relationships so that there is actually a combined force from various aspects. I would love to do telehealth going forward, but like Dr. Usmani brought up, if there is not enough reimbursement or leadership or legislation to support all of that, then our wants and needs may not be served fully. So I think developing those relationships, developing those partnerships and moving forward as we’re gaining momentum to address this particular question, this particular issue is extremely important. And I feel it is more hopeful and exciting in the future as compared to where we’ve come from.

Jenny Ahlstrom:

I would just reiterate what Diahanna said. I think it’s in building the programs that are simple enough for everybody to understand and utilize that makes just the usability of them as available as possible, and then building that relationship in those communities where the needs are. I totally agree with what Diahanna’s saying, you need to take the programs to the people where they are and not to expect them to come to your programs.

Dr. Saad Usmani:

I agree with everything that has been said on this topic. And I have to say that this is going to be a two-way dialogue, a two-way partnership. That’s the only way that this can succeed moving forward. Racial disparities are an inherent part of our everyday life, whether it’s in healthcare, whether it’s in other interactions we have with each other, and there’s a lot of historic perspective and context to that. This is not going to be a quick fix, this is going to be a long-term process. But it will have to be a partnership. And I’m talking on a broader level with myeloma care and better survival outcomes for all myeloma patients as the goal. But then looking at the overall societal goals as well, and trying to see how we can remove the inherent biases that everyone has and develop more fruitful productive relationships going forward in our respective geographic regions, but overall in our country as well. I think that’s the overarching theme and tone of the conversations we’re having in the country right now, and it certainly makes sense to do that for myeloma care as well.

Rebecca Law:

I want to take the time to thank each and every one of you for joining me today. On behalf of the Patient Empowerment Network and Diverse Health Hub, I am Rebecca Law. Thank you.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma?

This video was originally published by Diverse Health Hub here.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

Dr. Pavlos Msaouel broaches the disparities that exist for patients with Renal Medullary Carcinoma (RMC). He contends that RMC afflicts a very vulnerable population, that is young African Americans. The disparity exists due to the young age of these patients who aren’t part of a work force with health insurance. Secondarily, this has caused RMC to be underdiagnosed, preventing optimal treatment for patients.

On a global scale, Nigerians face the same disparity, as traits of RMC affect a large number of the population. There are virtually zero reports of its existence and patients again are underdiagnosed. Dr. Msaouel argues we need to research questions that answer where and how RMC affects particular populations in order to equalize the disparity of underdiagnosed patients. Currently the US is gathering data and creating RMC patient communities and advocates. Dr. Msaouel stresses this research is needed on a global scale as well.


Transcript:

Rebecca Law:

Dr. Msaouel, what disparities exist for patients with Renal Medullary Carcinoma?

Dr. Pavlos Msaouel:

Now that is a wonderful and very important question because there are certainly disparities in caring for individuals with RMC (Renal Medullary Carcinoma). Think about it these are people who are young and young people in general — you know they do not have necessarily for example, in the U.S. that kind of insurance when they’re in their twenties or teenagers that they will have later in life or even you know are not part of the work force in that sense. But it’s even more challenging if you think that the vast majority of individuals with RMC are young African Americans. So, this is a disease that particularly afflicts a very vulnerable population, so there is no doubt that health disparities afflict individuals with RMC and this may be part of the reason why for many years this was an underdiagnosed disease.

Dr. Pavlos Msaouel:

We are finding out now that this cancer is more common than we originally thought. It’s still a rare cancer, there is no doubt about that, but it is more common than we originally thought to the point that nowadays in our clinics we see about 1 new case, 1 new patient with RMC per month. So that’s certainly more common than the about 100 cases that have been published thus far in the literature—there are many more that we do not know of. And think about it also in a different way, from a more global perspective. So, there is about let’s say 3 million individuals in the U.S. who carry the sickle cell trait. Most would be African Americans, other ones will be Caucasians so there are many different people who can have the sickle cell trait, but it’s mainly African Americans, but there are 300 million people in the world that carry the sickle cell trait — mainly in Africa.

Dr. Pavlos Msaouel: 

So, let’s take for example, Nigeria – there are many people in Nigeria who have the sickle cell trait yet how may reports are there about the existence of this cancer in these countries, essentially almost 0 and so that is a disparity in itself. This is a cancer that can be difficult to diagnose especially if you do not know about it, if you’ve never heard of it, but even if you do – even if a physician or healthcare personnel knows about this cancer it still needs specific tests to be done and many of them cannot be done in most countries so that’s also a disparity.

Dr. Pavlos Msaouel:

So the mere fact that this cancer cannot be diagnosed in many countries in the world is a disparity in itself, so if we were able to correct this and understand more about where it happens and how often it happens we know much more nowadays thankfully through the work of many people in the U.S. now that are becoming passionate about helping individuals with RMC (Renal Medullary Carcinoma) so we are gathering a lot of data, a lot of information, we have patient communities in the U.S., we have patient advocates that help immensely in the U.S, but this is very likely a global phenomenon, so that’s a disparity that will need to be addressed.

Myths vs. Facts: Myeloma Health Disparities Care Infographic

MythsFacts_Diverse Partners in Your Myeloma Care.pdf

What Do Disparities in Multiple Myeloma Look Like?

What Do Disparities in Multiple Myeloma Look Like? from Patient Empowerment Network on Vimeo.

How do health disparities in minority populations with multiple myeloma play out? Expert Dr. Sikander Ailawadhi from the Mayo Clinic joined to discuss data about African Americans and Hispanic Americans with myeloma. Watch as he shares the average age of disease onset, how their symptoms vary, transplant rates, new treatment rates and more.

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

Dr. Ailawadhi, for our audience who might not understand what health disparities in myeloma look like, can you give a high-level definition and overview, please?

Dr. Sikander Ailawadhi:

So, there are disparities at a lot of different levels, just taking the case of multiple myeloma, specifically. So, for example, patients from different racial and ethnic backgrounds tend to present in a different way. So, African Americans present with the diagnosis at a much younger age. The presence of the myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, is seen much more frequently in African Americans. Even I would say include Hispanics into that, because Hispanics also get diagnosed at a much younger age. The disease presents very differently, for example, African Americans will present much more frequently with anemia or kidney dysfunction, but they will present with much lesser bone fractures in multiple myeloma.

So, those are disparities in how the disease presents or how it becomes kind of evident. Now, when we talk about disparities, one of the very stark shades of disparities in myeloma is how treatment is given or made available to patients, especially when we talk about racial minorities. So, there has been a lot of literature looking at this, and it has been seen that patients who belong to racial and ethnic minorities, they do not get access to the same kind of treatment in the same timely fashion. So, for example, African Americans and Hispanics are much lesser likely to get a transplant when it comes to myeloma treatment. Now again, I don’t want to say that improvements have not happened. The rates of transplant, rates of new drug use, have increased across the board for all races and ethnicities, but when we compare, the rate of that increase has been much slower in African Americans.

In fact, one of the studies that we looked at, some national data, it took Hispanics a little more than 100 days from the time of diagnosis to get to initial treatment with bortezomib (Velcade), which is a cornerstone drug and is used almost across the board for initial therapy. So, the treatment, there are disparities. And similar, there are some outcome disparities. While on the face of analysis, it’s been said several times that races or different racial sub-groups will have similar outcomes, I think the important thing to understand is that biologically, African Americans have a less aggressive disease, which means that if given the right kind of treatment, African Americans are supposed to in fact have a slightly better outcome than even whites. And there’s one large analysis that came out of the VA system from the Dana-Farber group last year, which was actually highlighting that, because they were able to show that in an equal access system like the VA, African Americans actually had better outcomes, or better survivable. So, there are disparities at the time of presentation, at the time of how treatment is received, how timely is the treatment, and in fact also, outcomes. Because I would say that having an equal outcome for a racial minority is not necessarily lack of disparity, that may actually be underscoring the disparity.