MM Whole Patient Support Archives

Multiple Myeloma can unleash a whirlwind of unexpected emotions and experiences for patients and care partners. You are more than just a patient; more than just a treatment plan.

Whether your concerns are physical, emotional, nutritional, or spiritual, we can help.

More resources for Multiple Myeloma Whole Patient Support from Patient Empowerment Network.

The Value of Myeloma Support Groups and How to Join

The Value of Myeloma Support Groups and How to Join from Patient Empowerment Network on Vimeo.

How might joining a support group benefit you when coping with a myeloma diagnosis? Yu Mee Song, an oncology social worker, discusses the value in peer-to-peer connection and shares tips and resources for finding a support group.

Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.

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Transcript:

Katherine Banwell:

Yu Mee, what is the value of myeloma support groups? And how would you encourage someone to join if they’re hesitant? 

Yu Mee Song:

So, it’s – it’s – it’s not for everyone. And you may need to try more than one support group to find the one that’s a good fit for you. But it does provide a sense of belonging and the decreased feeling of isolation, like you’re going through this alone, to be in a group with others who – who kind of – who get you. And I’ve had a lot of people say, you know, it’s really , really hard to talk about this – what I’m going through – with my friends or family they just don’t get it. And it’s so good to see – and  we facilitate some groups here for newcomers to join. And as soon as they, you know, speak about something and the whole group chimes in and, yes, we know what you’re going through and give their – share their story and their experience. And it’s so inspiring and encouraging for them. 

Katherine Banwell:

Yeah. It’s incredibly valuable.  

Yu Mee Song:

They share all sorts of tips on things like side effects and – or how to – how to talk to your doctor about something if you’re uncomfortable bringing it up or, um, even asking for help about, um, you know, for counseling or more emotional support that you may be embarrassed to ask about.  

Katherine Banwell:

How would a newly diagnosed myeloma patient find out about something like a peer-group session or peer support? 

Yu Mee Song:

There may be some local. But now there are many national organizations that you can tap into. I would start, again, like, ask – speaking with your oncology social worker. But I would start with some of the national organizations like Multiple Myeloma Research Foundation, International Myeloma Foundation, The Leukemia & Lymphoma Society, platforms like this the Patient Empowerment Network, or HealthTree.  

So, if you start with any of the big myeloma organizations, they can help guide you. There are patient navigators that can kind of guide to your – provide guidance to what you’re looking for, whether it’s peer-to-peer support, support group, or other resources.  

Why Do Some Myeloma Patients Experience Chronic Kidney Disease?

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

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

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Transcript:

Lisa Hatfield:

Why do some myeloma patients experience chronic kidney disease?

Dr. Sikander Ailawadhi:

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

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

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

Myeloma Patient Profile: Jeff Boero

When Jeff Boero shares his multiple myeloma patient journey, it’s clear that self-education has been a vital part of his experience. He was first diagnosed through his primary care physician who referred him to a general oncology group in the San Francisco area. They confirmed it was multiple myeloma. It soon became clear to Jeff and his wife that he perhaps needed a second opinion, and he was connected with the University of California San Francisco (UCSF) to their multiple myeloma specialist. 

The second opinion changed the approach to Jeff’s care rather dramatically. He was quickly scheduled for a stem cell transplant and subsequent maintenance after that. As Jeff recalls, “Through UCSF, I became eligible for a CAR T-cell immunotherapy trial in 2017. That was very successful and kept me disease-free and medication-free for about 2-1/2 years. And then I relapsed and went on another maintenance program. I became eligible for another clinical trial for a bi-specific T-cell engager (BiTE) that I’m on now and am having good results.”

Jeff was almost in complete denial about his diagnosis for the first 6 months. The diagnosis threw him into a world of terminology and treatment that was completely foreign to him. That sense of his diagnosis feeling foreign also started to lead into a certain level of depression — just not knowing what it is, how is it going to be treated, what it meant to his long-term survival. Jeff remembers, “So, with the encouragement of my wife as caregiver, I became more educated as I engaged in various conversations with specialists and participated in some of the PEN webinars. It  became clearer to me about what some of the options are and what they can be. Being engaged with UCSF really opened up the treatment options. With me becoming more educated and able to speak the language of myeloma, I was starting to understand the diagnosis as it was presented by UCSF. And it led to a much richer engagement in conversation with the oncologist and with the nurse practitioners.” 

As a cancer patient, Jeff views self-education as the key to empowering patients toward better care. It was through self-education that he learned about other options. Before becoming more educated, Jeff was mostly just listening and trying to absorb as much as he could and seemed to remember mostly bad news. According to Jeff, “There’s so much good news around myeloma treatment and available therapies. It was through self-educating and those conversations that my outlook brightened too.”

By patients educating themselves, they can start to ask questions about the clinical trial like: “What is it, and why is it going to show better results than my maintenance therapy?” And in conversation, patients can start to better understand the purpose of the clinical trial. “I think it’s important for patients to understand what they’re trying to accomplish through the clinical trial that wasn’t through their maintenance therapy. What is it about this trial that’s different that we haven’t addressed previously?” But patients can’t ask those questions unless they have at least a basic understanding of their cancer and how the various therapies approach the cancer cell. “But if you listen to webinars and things like that, you’re better able to have those conversations. As a matter of education as these opportunities arise, you’re able to have a much richer conversation with your oncologist and your care team about the benefits that could potentially be derived from the clinical trial.” 

Clinical trials have benefitted Jeff, and he recommends seeking an opinion that is dedicated to research of your specific cancer. Learning institutions have more access to emerging research and treatments that likely won’t be FDA-approved until 2 or 3 years later. “So if you as a patient can be at the forefront of some of these trials, that can be tremendous. I’m on therapies now that didn’t even exist when I was diagnosed. Research is moving quickly.”

Jeff senses some hesitancy among patients about clinical trials. “There’s this misconception that if you join a clinical trial, one group is getting the real stuff, and one group is getting the placebo. And the trials that I’ve been in, everybody gets the real thing, and everybody’s progress is tracked on their response to the real thing.” He knows trials can seem intimidating. Jeff went through his initial clinical trial, because he was almost out of options for conventional maintenance therapy. His cancer burden continued to increase, and he’d been through a number of different treatments. “The CAR T-cell program came up and seemed to be a perfect fit for me. So I did the clinical trial partially out of necessity, but I also had extreme confidence in my oncologist that he was promoting something that he thought would be most beneficial for me. I think it’s a matter of putting trust in your oncologist. Maybe I’ve been lucky, but I’ve had good results and good response to both clinical trials.” He also feels that the sponsoring institution will give an honest appraisal of where the program stands and what the progress and success has been up to that point. 

Reflecting on the value of Patient Empowerment Network (PEN) and other resources, Jeff says, “I’ve gotten so much out of the PEN webinars that are provided and some other organizations. I’m a slow learner in this area but am absorbing as much as I can. I need to hear the same thing a few times before I start to absorb it and fully understand it. So I rewatch the PEN webinars, and it works for me.” He also suggests learning as much as one can but was advised early on to stay away from Google. “There’s so much out-of-date information. Whereas websites like Patient Empowerment Network’s and others have updated information that’s far more relevant. And I also find the navigation on the PEN website very easy to use.”

After meeting patients who don’t have the same level of health insurance benefits, Jeff feels a sense of gratitude. “I had tremendous support from my employer who in essence said take the time you need to get yourself well again. So I have a lot of gratitude for that support, my wife as caregiver, family, social support, my faith community, and for my proximity to UCSF that makes treatment very practical and very possible.” It’s opened his eyes in that regard. There are so many benefits that he has that others don’t have. “I’ve joined various support groups initially to gain support. Now things have come full circle, and I find that I’m at the other end of the conversation to give people comfort in what they could possibly be doing to improve their situation.”


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Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion? from Patient Empowerment Network on Vimeo.

When is the best time to seek a second opinion? Dr. Joshua Richter discusses the benefit of seeking a consult with a myeloma specialist to optimize your care.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More from Thrive Myeloma


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Transcript:

Katherine:

Randall writes, “I was diagnosed last year with myeloma, and my first treatment worked, but now I’ve relapsed. Is it too late to consider a second opinion or a consult with a specialist? Would that change anything?   

Dr. Richter:

It’s a phenomenal question. There have actually been studies to show that if you engage with a myeloma center at least once within your myeloma journey, you do better than someone who has never done that. So, it is never a bad time to seek out a specialist. And one of the good things that came out of COVID is telemedicine. So, if there’s not someone right in your area, reaching out to some of our advocacy groups to help connect you to physicians like me or any of my colleagues, we’re more than happy to see anyone, I’ll see you with an MGUS that’ll never bother you, as will all of my colleagues and people who work in myeloma.   

If you’ve had one prior line, 15 prior lines, anywhere in between. So, I think it’s always a good idea to see a specialist because he or she is more than happy to work with your local doctor to optimize your treatment without having to necessarily go to another center.

How Long Will Myeloma Maintenance Therapy Last?

How Long Will Myeloma Maintenance Therapy Last? from Patient Empowerment Network on Vimeo.

Dr. Joshua Richter, a myeloma specialist, reviews the goals of maintenance therapy and discusses the timeline for this type of treatment.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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Transcript:

Katherine:

Isaac sent us this question. How long does the average myeloma patient remain on Revlimid? And is there a suggested time period? 

Dr. Richter:

Really great question. It depends upon the setting we’re looking at, and for the most part, a lot of people are probably asking about the maintenance setting. So, after initial therapy or after transplant, we put you on Revlimid. How long do we keep you on? The American adage has always been, “More is better,” so as long as you tolerate it and as long as it works. Outside of the U.S., they’ve done a couple of studies looking at one year and then stopping, or two years and then stopping.  

And in a big trial that got presented a year or so ago, they compared the two years then stopping versus just staying on, and the people who just stay on do better.  

So, now the current thinking is just keep you on long-term. What’s going to change that in the long term is we’re starting to use a technology called MRD, minimal residual disease, so, doing a marrow and trying to find one in a million or one in 10 million cancer cells.   

And then, there’s something called sustained MRD meaning if you do two MRD analyses at least 12 months apart and they’re both negative, we call that sustained MRD-negative.   

And, there’s a hint that some people on maintenance Revlimid who have sustained their MRD negativity, they may do just as well stopping versus staying on it. We don’t know exactly who that is yet, but that’s going to be better understood in the next few years.  

Thriving With Myeloma: What You Should Know About Care and Treatment Guide

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Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

Equity Rx Crowdsourced Resource

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How Can Healthcare Systems Better Approach Whole Person Care?

How Can Healthcare Systems Better Approach Whole Person Care? from Patient Empowerment Network on Vimeo.

Healthcare systems can take steps toward better whole person care. Dr. Nicole Rochester and Aswita Tan-McGrory share solutions that can help overcome trauma and lack of trust to work toward healing.

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Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?


Transcript:

Dr. Nicole Rochester:

So we’ve talked about all the things that need to happen in an ideal world, but as you described earlier, the system in which healthcare is provided in our country is dysfunctional, it’s broken, and so as someone with your background, what are some of the solutions? What are some of the things that healthcare systems and organizations can do with all these limitations that we’ve all been talking about today?

Aswita Tan-McGrory, MBA, MSPH:

This actually came from my colleague who’s a psychiatrist, and we did a webinar together, and she mentioned this, and I just really loved it as a solution which is talking as a pathway to healing, when we think about…a lot of what I heard today, the big thing is a lack of trust between a patient and a provider or a patient and a healthcare system, there was so much trauma in our communities that we don’t talk about, and so I would say that like…

One solution is, we as a system need to talk about these challenges more openly or more…I mean I have this sign behind me it says, “Get comfortable being uncomfortable to talk about racism.” But I think also within our own communities, we need to talk more about the challenges, the things that we just sort of tolerated that are not okay anymore, and getting mental health care, acknowledging that we are disproportionately attacked when we go out on the streets, all of those things, we need to more openly talk about, and that is a pathway to healing, which I think this country really could use. And so my solution is simple but difficult, but probably cheaper than any other solution that I would offer to fix the issues. I think we just need to start there, yes, we can do many things, but I think talking about this as a pathway to healing would go a long way.

Dr. Nicole Rochester:

Wow. Talking as a pathway to healing. That is powerful.

Advice From a Cancer Survivor for Better Whole Person Care

Advice from a Cancer Survivor for Better Whole Person Care from Patient Empowerment Network on Vimeo.

 How can better whole person care be achieved by patients and healthcare providers? Dr. Nicole Rochester and Sasha Tanori discuss ways that care can be improved to work toward optimal patient care.

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How Can Cultural Competency Play a Role in Your Care?


Transcript:

Dr. Nicole Rochester:

If you had some advice that you could give from a patient’s perspective, and maybe you’re talking to a policy maker or healthcare providers, but how can we do better in this area as it relates to whole person care, culturally competent care?

Sasha Tanori:

I would definitely say take your patients more seriously and not just like one-offs, okay, bye. A lot of the time, they just do a couple of tests and they’re like, “Oh well, we can’t find anything, so let’s just move along,” and there needs to be more conversation as well.

A lot of the doctors will come in and talk to you for like you said, 15 minutes, and then it’s like, “Okay, you know, well, we can’t find anything wrong, so just go.” And it’s like, “No, let me explain everything, let me explain how I’m mentally feeling, how I’m physically feeling, how stressed out feeling, how emotionally I’m feeling.” And there are just so many different layers to just one, if you come in and say, “Oh, well, my hip hurts.” Okay, but why I explain more to it, not just okay let’s do an x-ray and you leave. Like there needs to be a lot more conversation going on between the patient and the doctor, there needs to be a lot more understanding where it could also be stress as it relates to work, it could be stress related to family, to love the ones…to kids, to spouses, there are so many different things on top of that, that’s more than just, you know, “Hey, you know like, I just need a prescription,” and you can go. There’s so much more conversation needs to be have then I really wish that a lot more healthcare providers would have that conversation with them, I know they don’t always have the time, they’re busy, but at least a little bit more compassion, a little bit more understanding, going about when it comes to patients.

Dr. Nicole Rochester:

I appreciate that, and you’re right. The time is an issue. And I will tell you as a physician and as somebody who has tons of physician friends, it causes internal conflict within the doctors, because I don’t know any doctor that got into this for any reason, primarily, other than to help patients, and so to be placed in these situations where you know that you’re falling short of providing the care that your patients need is actually quite disturbing.

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments? from Patient Empowerment Network on Vimeo.

What are the effects of stress, anxiety, and depression on physical health? Dr. Nicole Rochester and Dr. Broderick Rodell discuss how personal experiences and environmental conditions can impact patient health and a prostate cancer study that examined prostate cancer cells in Black patients.

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Why Is It Important to Address Whole Person Care?


Transcript:

Dr. Nicole Rochester:

We know that stress and anxiety and depression and all of those things impact your physical health, and as I said earlier, I think traditionally, there’s been this ridiculous disconnection between our minds and our bodies, and we know a lot more now, in fact, there’s a study, there are many studies, but there’s a study specifically looking at prostate cancer by Dr. Burnham, a researcher. And what they found in this study is that they looked at prostate cancer cells from African American patients and white patients, and when they treated these cells with stress hormones, they saw that the Black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy. And so it starts to look at the role of stress and stress hormones, and we know that there’s increased stress among minority communities, among… sorry, urban communities, those who are otherwise disenfranchised, so from your perspective, can you just share a little bit about the connection between stress and physical illness and maybe how you approach that in the work that you do?

Dr. Broderick Rodell:

So, these various patterns we don’t operate, we have a framework that we all operate from, and it’s beneath the surface of our conscious awareness. And so our subconscious mind operating system is there, but that operating system comes from our conditioning, we’re conditioned by our families, by our local communities, our societies. And so, the various structures that are in place are facilitating our conditioning and from our conditioning we…that our conditioning creates our perspective, the framework that we operate from, that’s determine…that’s going to determine how we relate to our experiences. And how we relate to our experiences can be gracefully, or it can be stressfully, just to put it in those two different terms, and so that stress that is created based on how we’re relating to our experiences has a historical perspective, and so we have to address those issues. We can address our familial issues that has a historical relationship and say that maybe the relationship that my mother and father or grandparents had towards their own health is not necessarily to be the most optimal way to do that. And they may have had those ways of relating to their experience, based on their conditioning, based on the suffering that they’ve experienced, environmental conditions that were conducive for that mental framework that they’re operating from, and so we have to work towards transforming that, and again, the place where we have the most power in ourselves, “How can I change myself?”

I have to advocate for myself, and so how do we increase that by increasing our education and learning about ourselves and learning about our mental models that we’re using to relate to our experiences and transforming those mental models to reduce unnecessary stress and tension? Because when we’re under unnecessary stress, we have our epinephrine cortisol, these hormones that are increasing in our body, that’s going to suppress our immune system. It’s going to cause damage in our blood vessels, organs are not going to function optimally, and I think that we’re going to keep finding out more and more about this. I was interested, as you hear that about the prostate, prostate cells in African Americans, why would that be the case? You’ve got generations of hyper-vigilance for historical reasons, cultural reasons, or social reasons. Then, of course, that’s going to get passed on from generation to generation, a sense of hyper-vigilance, a sense excessive amount of stress hormones was floating around in the bloodstream, and it’s going to have a significant influence on how the body is capable of dealing with various illnesses – be it cancer, be it cardiovascular disease, or any other disease that’s associated with, or probably all disease that’s associated with stress these days.

In particular, with cancer it’s very interesting, that relationship and why are these cells dividing and rapidly producing in the way that they’re doing, and how is that related to stress? I don’t think it’s…no, simple relationship there. You can’t just say, “Stress causes cancer.” I’m not saying that at all. But there is a correlation, there is a relationship, and if the thing that we can tackle, we can’t change our genes, but what we can do is change our relationship to our experience. Transform that to reduce the amount of stress or suffering and maximize well-being, and that’s the kind of work that I try to focus my attention on and what comes out of that is, “Okay, I need to work on how I relate to my experience,’ but also “How do I create favorable conditions in my internal system, in my body through the food, in through the exercise that I do, through the literature and I expose myself to, etcetera?”

How Can Cultural Competency Play a Role in Your Care?

How Can Cultural Competency Play a Role in Your Care? from Patient Empowerment Network on Vimeo.

Cultural competency, also known as cultural humility, can help provide better care. Dr. Nicole Rochester and Sasha Tanori discuss barriers to diagnosis and Sasha’s experience as a Mexican American patient in the healthcare system.

See More From Rx for Community Wellness

Related Resources:

Advice From Cancer Survivor to Better Whole Person Care

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

Sasha, from your perspective, and you mentioned you’re a Mexican American, you mentioned that there were significant barriers for you in terms of getting a diagnosis, having to leave your community. So I love for you to share more about that, this idea of cultural humility, cultural sensitivity, and how that played out or maybe didn’t in your experiences with the healthcare system.

Sasha Tanori:

Yeah, I live in the lowest poverty line of California, so there’s not very much out there at all in my area. Just to get my diagnosis, like I said, I had to leave out of my community to go get the community…to go get the diagnosis. Sorry. And when I did that, it was…a lot of it had to also do with your…for me personally, it has to do with like generational. My father doesn’t believe in diagnosis, diagnoses, to him, it’s like every time I kept coming to him and complaining about this issue, he was just like, “Oh, you’re exaggerating.” Or it would be like the typical [passive], “You’ve got to go and put some Vicks on it, and you’re fine,” type of response, and I kept bugging him and bugging him, and he didn’t believe me, nobody believed me because it’s just such a…like I said, I live in a…what’s the word I’m thinking of, I’m sorry. I live in a community that they don’t take things like this seriously from Mexicans. If a white girl was to go to the hospital and say, “Hey, I’ve got bruises.” It’s like, “Okay, let’s do testing right away.” But I kept…and it is a lot of my generational, I think, trauma from my parents or from my dad mostly, that I didn’t even believe myself, it’s just like…

I kept putting it on the back burner. I kept thinking, “No, there’s nothing wrong. No, there’s nothing wrong. No, there’s nothing wrong.” And I wish that I would have advocated for myself a lot sooner. I wish that I would have taken my own problems more seriously because I didn’t…I didn’t think anything was wrong either. I just kept ignoring it, because that’s just how my mind was trained from my community, from my parents or my dad mostly, and finally, once I was able to… Once I started getting really, really serious, I still didn’t get the help, I needed it right away, it was now kept pushing it back on, “You need to lose weight,” or “You’re anemic,” or “You have this blood disorder, so take this medicine.’ Like nobody really took anything I was saying serious, because I also didn’t take it serious, my community doesn’t take it serious, my dad doesn’t take it serious, and that all just comes back to being Mexican. That’s just how it is when you’re Mexican, you don’t really take any of the serious issues serious, you go to work, and you take care of your family. And you put yourself on the back burner.

You put yourself last. And it was really hard. Yeah, but now that I’ve been through everything I’ve been through, I’m seriously, so passionate about making sure that people, especially Mexicans realize, “Hey, whatever you’re feeling, whatever you’re going through, whether it’s physical, emotional, mentally, it needs to come first, no matter what.”

What Is the Importance of Culturally Competent Care?

What Is the Importance of Culturally Competent Care? from Patient Empowerment Network on Vimeo.

Culturally competent care is another way to work toward health equity. Dr. Nicole Rochester and Aswita Tan-McGrory discuss barriers to providing culturally competent care and ways to address the issues.

See More From Rx for Community Wellness

Related Resources:

Advice From Cancer Survivor to Better Whole Person Care

How Can Cultural Competency Play a Role in Your Care?

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

We know that due to structural racism, due to inequities, not everybody has access to fresh fruits and vegetables, healthy foods, not everyone has access to green spaces, nice parks where they can go outside and have safety and exercise, and that’s something that we’re being made increasingly aware of is how these social determinants of health impact healthcare. So I want to move and start to talk about the importance of culturally competent care, or I like to call it cultural humility, I don’t know that we can really ever be competent in someone else’s culture. But I want to talk about how those come together, this idea of being respectful and sensitive and aware of an individual’s culture and how that connects to some of the health inequities that we experience. So, Aswita, I know this is an area of expertise for you, so I’d love for you to chime in.

Aswita Tan-McGrory, MBA, MSPH:

Yeah, I mean, I would love it if every physician or nurse or PA started the conversation, what has been the biggest challenge for you in the last six months? If you ask that question, I mean, well the patient will be like, “Oh my God.” And not around just medical issues, they all align, right? If you don’t have housing, you’re going to have medical stress, like Broderick said. I’m just calm listening to you, so I’m going to guess that you have is really positive vibe that’s probably missing for many of us because we aren’t practicing the things that you encourage. And so I would just say that it’s really difficult in the system like I said, we set up, and we mentioned 15 minutes, doctors don’t feel like they have time to ask that question, but you’re doing it in other ways, we implement social determinants of health screening. Well, that’s really that question, right? But you formalize it because it’s not happening, so now it becomes like a screening question. And I will just say that we’re very narrow-minded in our view. I think I have seen a change in the very beginning when we started the work in our center in 2006, a lot of pushback was around thinking about what happens in the patient outside of our walls. It said,  “Well, I didn’t go to medical school to solve the problem of housing, I didn’t go to medical school to figure out how to get somebody on benefits.” And I think the healthcare system realized it doesn’t matter what you do in the hospital, it will be undone when they get home to a situation where they can’t maintain it, they can’t provide that support, they don’t…

They’re stressed out, they have mental health issues, so I think they’re finally getting there. But I think just acknowledging that the person in front of you has different experiences based on language, education, gender, ability, sexual orientation…I don’t think that’s a bad thing. I think you just need to own it, we’re working on it. So I do it better than others, but I don’t know any healthcare system, honestly, that’s nailed this to the way that we probably should, so…I’m with you, Broderick. We don’t do this very well, and most of my job includes dismantling these systems that we built to benefit the people in power and leave everybody else behind, and so that’s been really the focus in our work.

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care? from Patient Empowerment Network on Vimeo.

What is whole person care, and why is it important to address? Dr. Nicole Rochester, Dr. Broderick Rodell, Aswita Tan-McGrory, and Sasha Tanori discuss the factors that whole person care examines, obstacles of healthcare systems, and how to advocate for optimal care.

See More From Rx for Community Wellness

Related Resources:

How Can Cultural Competency Play a Role in Your Care?

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

So let’s start with a definition of whole person care. Whole person care is defined as the patient center, optimal use of diverse healthcare resources to deliver the physical, behavioral, emotional, and social services required to improve the coordination of care for patients, their well-being, and their health outcomes. So I’d like to start with you, Aswita, and I’d like to know your thoughts on whole person care, and why do you think that this has been such a taboo subject for so long, and also why is it important for us to address whole person care?

Aswita Tan-McGrory, MBA, MSPH:

I think that part of the problem is that our healthcare system is very, very fragmented, so if we think about…we have primary care, then we have specialty care, then we have care in the hospital, and oftentimes there’s no communication, or communication is sort of inconsistent between those pieces. And so we as a healthcare system don’t promote this idea of whole person care, where you would really look at a patient, see them, see them in their environment, oftentimes, we’re seeing patients in our own institutions and we really don’t know anything about what we’re sending them home to, right? Unless we ask or we screen.

So I actually think it starts with how we build our systems in many ways, as a very sort of system that doesn’t really work to encourage thinking about the patient in the whole way, and that means the primary care physician being part of the care team with specialty care, getting that conversation just from an implementation perspective, I think this is a real challenge in our system, there’s other things as well, but I think that’s a big piece towards how do we ensure that for the patient…and I’m sure all of us have had our own experiences in healthcare where we are like, “They’re not talking to each other. Well, why does this doctor not talk to my primary care doctor? Aren’t they like logging into the same system?” And then if you go outside of your system, it’s even more challenging, so.

Dr. Nicole Rochester:

I completely agree, and I can relate to every single thing you said as both a physician and as a former caregiver, I will say as a pediatrician, I felt that this idea of whole person care, even before it was really a thing that’s kind of incorporated in our practice out of necessity, and we know that it’s important for the health of children to be involved in what happens to them at school and what happens to them in their child care setting, what’s happening in their homes.

And so that was kind of my reference point, but when I became a caregiver for my dad and kind of stepped into the world of adult medicine, I experienced exactly what you describe, Aswita. Just this fragmentation providers not talking to one another, and just a lack of appreciation for the importance of our environment and the things that we’re exposed to in our homes than in our communities, and how that is so intricately connected to our health. So I really appreciate that.

Aswita Tan-McGrory, MBA, MSPH:

Yeah, I want to just tag on something you just said is, I work with a lot of pediatricians and pediatric hospitals, and they are the angels in our system, if I can say so, you…and they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on. So I’m totally in agreement, like what you said, and I think it’s because you’re working with kids, you can’t not talk to the parents, not think about what is the school like you know so you’re forced to because of that environment, but that’s really a model that we should be using for all of our patients.

Dr. Nicole Rochester:

I completely agree, completely agree. Sasha, what are your thoughts about whole person care and where are your providers gotten it, right, maybe where have they gotten it wrong?

Sasha Tanori:

For me personally, I can’t speak on every Mexican American, but at least for me personally, it’s definitely been a struggle because where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that. So getting care is…it’s not the easiest. I’ve had to go to several doctors before I even got diagnosed, and I didn’t even get diagnosed in my hometown, I had to be sent to San Diego because they had no idea what was going on. They were like, “We don’t know what’s wrong with you. Go home.” They kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican American, they were just like, “Oh, if you lose a couple of pounds, you’ll be fine.” And I show up at the hospital with bruises on my body and they’re like, “It’s because you’re overweight.” And I’m like, “That doesn’t really make a whole lot of sense.” So yeah, it was definitely difficult trying to find a good healthcare professional who would listen to me, and I had to leave out of my Imperial Valley, out of my demographic to go find the help because…

And even then, they were kind of like, “Well, it could be this blood disease, it could be this, it could be that.”  And they were like, “Oh well, is anyone in your family…you’re Mexican, is there anyone in your family who has this type of illness, do they have diabetes, or this or that?” And I was like, “No, just help me. Don’t worry about them. Don’t worry about my family. Don’t worry about them. Worry about me.” And finally, I think after two months or something of just going to doctors’ appointments, after doctors’ appointments, they finally were able to give me proper diagnosis. But it shouldn’t have to take that many trips to the hospital and seeing this many doctors for them to figure out what was wrong. And a lot of it is because of, like you said, it’s because of the whole inequity of being a person of color, and I’m only half-Mexican. But a lot of people see that part of me first, and I think they automatically start being prejudiced, or they start judging you based on the way you look, the way you talk and stuff like that, so that way. It’s definitely been a struggle, especially being here in the Imperial Valley, we’re so close to the Mexican border. So they just automatically…they’re like, “No,” it’s just straight up, “No.”

Dr. Nicole Rochester:

Wow, I’m really sorry about that, and I appreciate you sharing your story. What about you, Broderick? And you’re a naturopathic physician, you’re a wellness expert, so you probably fully…not probably you fully understand the importance of whole person care. I feel like that’s at the root of your specialty, so maybe you can give us some ideas about how you approach this and why whole person care is so important.

Broderick Rodell:

Yes, thank you. And I do fully understand the various issues and concerns that can arise when you go to a medical doctor and the specialist and not talking to your primary care physician. And so I focus a lot of my attention on the individual and what you can do as an individual to care for yourself, to educate yourself about well-being and help. It doesn’t deny the various social conditions or structural issues there. It’s just that I feel like we have our greatest amount of power, a great capacity to act and taking as much responsibility as we possibly can in our own care through educating ourselves about how our bodies work, how our mind works, how disease manifestation arises, taking advantage of the tools that we have available to us via the Internet and educating ourselves so that we can be advocates for ourselves when we have a conversation with the various medical practitioners. But I’ve also really emphasized what can I do to maximize my health, my well-being, what choices can I make in my life to make my life into a life with maximum wellness and well-being and minimal suffering? And I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities and not give too much power over to medical doctors on a medical system that not always…

Now, I want to say, I’m going to be careful, I say this can be quite incompetent and that incompetence is associated with, I think what was mentioned earlier, a lack of communication. A lack of communication, the way the system is set up, it’s kind of dysfunctional and the various incentives and not enough time spent with patients. And if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not going to have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.

Dr. Nicole Rochester:

I completely agree, Broderick, the ideas that you mentioned in terms of we as patients and family members and communities educating ourselves about our own health and advocating for ourselves as someone who left medicine to become a professional health advocate, I’m all about advocating for yourself, speaking up, understanding what’s going on with your body. And I know that that can be challenging. And some people feel like, “It’s unfair, if I’m sick, the last thing I should have to worry about is fiercely advocating for myself in a medical setting.” And it is unfair to some degree, but as you stated in this system and the system that we’re currently operating in it is absolutely necessary, and I love that you mentioned mind, body spirit. And as a traditionally trained physician, I will admit that we don’t get that connection, that’s not something that is part of our traditional training. And it’s unfortunate that we kind of just see the body over here, and then the mind over here. And we know that we are all…this is all part of who we are, and that if your environment is not optimal, if your mental health is not optimal, if your spiritual health is not optimal, then that’s going to manifest itself in your physical health.

Equity Rx, Cancer Care for the Whole Patient

Equity Rx, Cancer Care for the Whole Patient from Patient Empowerment Network on Vimeo.

What is culturally competent whole-person cancer care, and why is it important? How can patients maximize their well-being for the best possible cancer treatment outcome? A cancer survivor, a naturopathic doctor, and a public health scientist share solutions on how the whole patient should be considered in cancer care.

See More From Rx for Community Wellness

Related Resources:

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?


Transcript:

Dr. Nicole Rochester:

Hello and welcome to Equity Rx, Cancer Care for the Whole Patient. I’m your host, Dr. Nicole Rochester. I’m a pediatrician and the CEO of Your GPS Doc. This is a Patient Empowerment Network program, and I’d like to start by thanking our incredible partners, Triage Cancer, the Leukemia and Lymphoma Society, and CancerGRACE for their support. Today, we’re covering a very important topic, the significance of treating the whole patient while providing medical care, particularly for underserved communities. For me, when we think about self-care in the context of whole person care, it’s often considered to be a luxury, particularly in BIPOC communities, mental health and self-care are not always prioritized, and we know that this is… And we know that this is important as well for those with the cancer diagnosis, so how do we change that? We’re going to be talking about how to remove this taboo and how to encourage meaningful mind-body connections, we’re gonna talk about what has worked and what hasn’t worked, and most importantly, how do we ensure that Equity, Rx in cancer care occurs on an everyday basis.

How do we make sure that the entire patient, the whole patient is considered. I’m excited to introduce our panel to you today, we have Aswita Tan-McGory. She is the director of Equity and care implementation at Massachusetts General Hospital. She’s also the Director for the disparity solution center. We have Sasha Tanori. Sasha is a Patient Empowerment Network, AML Empowerment Lead and a cancer survivor. And we have Dr. Broderick Rodell He is an educator, a doctor of naturopathic medicine, and a wellness expert. Following this program, you will receive a survey and we’d be delighted to get your feedback, this helps inform future programs that we produce. Please remember that this program is not a substitute for seeking medical care, so if you have any questions following this program, please be sure to connect with your healthcare team on what options are best for you.

So, let’s start with a definition of whole-person care. Whole-person care is defined as the patient center, optimal use of diverse health care resources to deliver the physical, behavioral, emotional and social services required to improve the coordination of care for patients, their well-being and their health outcomes. So, I’d like to start with you, Aswita and I’d like to know your thoughts on Whole Person Care, and why do you think that this has been such a taboo subject for so long, and also why is it important for us to address whole person care?

Aswita Tan-McGory, MBA, MSPH:

I think that part of the problem is that our healthcare system is very, very fragmented, so if we think about… We have primary care, then we have specialty care, then we have care in the hospital, and oftentimes there’s no communication or communication is sort of inconsistent between those pieces, and so we as a healthcare system don’t promote this idea of whole person care, where you would really look at a patient, see them, see them in their environment, oftentimes, we’re seeing patients in our own institutions and we really don’t know anything about what we’re sending them home to, right? Unless we ask or we screen.

So I actually think it starts with how we build our systems in many ways, as a very sort of system that doesn’t really work to encourage thinking about the patient in the whole way, and that means the primary care physician being part of the care team with specialty care, getting that conversation just from an implementation perspective, I think this is a real challenge in our system, there’s other things as well, but I think that’s a big piece towards how do we ensure that for the patient… And I’m sure all of us have had our own experiences in healthcare where we are like, they’re not talking to each other. Well, why does this this doctor not talking to my primary care doctor aren’t they like logging into the same system? And then if you go outside of your system it’s even more challenging, so.

Dr. Nicole Rochester:

I completely agree, and I can relate to every single thing you said as both a position and as a former caregiver, I will say as a pediatrician, I felt that this idea of whole person care, even before it was really a thing that’s kind of incorporated in our practice out of necessity, and we know that it’s important for the health of children to be involved in what happens to them at school and what happens to them in their child care setting, what’s happening in their homes.

And so that was kind of my reference point, but when I became a caregiver for my dad and kind of stepped into the world of adult medicine, I experienced exactly what you describe, Aswita. Just this fragmentation providers not talking to one another, and just a lack of appreciation for the importance of our environment and the things that we’re exposed to in our homes than in our communities, and how that is so intricately connected to our health. So I really appreciate that.

Aswita Tan-McGory, MBA, MSPH:

Yeah, I want to just tag on something you just said is, I work with a lot of pediatricians and pediatric hospitals, and they are the angels in our system, if I can say so, you… And they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on, so I totally agreement, like what you said, and I think it’s because you’re working with kids, you can’t not talk to the parents, not think about what is the school like you know so your forced to because of that environment, but that’s really a model that we should be using for all of our patients.

Dr. Nicole Rochester:

I completely agree, completely agree. Sasha, what are your thoughts about whole-person care and where are your providers gotten it, right, maybe where have they gotten it wrong?

Sasha Tanori:

For me personally, I can’t speak on every Mexican-American, but at least for me personally, it’s definitely been a struggle because where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that, so getting care is… It’s not the easiest. I’ve had to go to several doctors before I even got diagnosed, and I didn’t even get diagnosed in my hometown, I had to be sent to San Diego because they had no idea what was going on. They were like, We don’t know what’s wrong with you. Go home, they kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican-American, they were just like, Oh, if you lose a couple of pounds, you’ll be fine, and I show up at the hospital with bruises on my body and they’re like it’s because you’re overweight, and I’m like, That doesn’t really make a whole lot of sense. So yeah, it was definitely difficult trying to find a good health care professional who would listen to me, and I had to leave out of my Imperial Valley, out of my demographic to go find the help because…

And even then, they were kind of like, Well, it could be this blood disease, it could be this, it could be that, and they were like, Oh well, is anyone in your family… You’re Mexican, is anyone in your family have this type of illness, do they have diabetes, or this or that. And I was like, No, just help me. Don’t worry about them. Don’t worry about my family. Don’t worry about them. Worry about me. And finally, I think after two months or something of just going to doctor’s appointments, after doctor’s appointments, they finally were able to give me proper diagnosis, but it shouldn’t have to take that many trips to the hospital and seeing this many doctors for them to figure out what was wrong. And a lot of it is because of, like you said, it’s because of the whole inequity of being a person of color, and I’m only half Mexican, but a lot of people see that part of me first, and they think they automatically start being prejudiced or they start judging you based on the way you look, the way you talk and stuff like that, so that way… It’s definitely been a struggle, especially being here in the Imperial Valley, we’re so close to the Mexican border, so they just automatically…They’re like, No, it’s just straight up, no.

Dr. Nicole Rochester:

Wow, I’m really sorry about that, and I appreciate you sharing your story and you’re bringing up some things that we’re definitely going to get further into as we start to talk about bias and culturally competent care. What about you Broderick? And You’re a naturopathic physician, you’re a wellness expert, so you probably fully… Not probably you fully understand the importance of whole-person care, I feel like that’s at the root of your specialty, so maybe you can give us some ideas about how you approach this and why whole person care is so important.

Broderick Rodell:

Yes, thank you. And I do fully understand the various issues and concerns that can arise when you go to a medical doctor and the specialist and not talking to your primary care physician, and so I focus a lot of my attention on the individual and what you can do as an individual to care for yourself, to educate yourself about well-being and help, it doesn’t deny the various social conditions or structural issues there, it’s just that I feel like we have our greatest amount of power, a great capacity to act and taking as much responsibility as we possibly can in our own care through educating ourselves about how our bodies work, how our mind works, how disease manifestation arises, taking advantage of the tools that we have available to us via the internet and educating ourselves so that we can be advocates for ourselves when we have a conversation with the various medical practitioners, but I’ve also really emphasize what can I do to maximize my health, my well-being, what choices can I make in my life to make my life to no life with maximum wellness and well-being and minimal suffering. And I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities and not give too much power over to medical doctors on a medical system that not always…

Now, I wanna say, I’m gonna be careful, I say this can be quite incompetent and that incompetence is associated with, I think what was mentioned earlier, a lack of communication. A lack of communication, the way the system is set up, it’s kind of dysfunctional and the various incentives and not enough time spent with patients, and if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not gonna have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.

Dr. Nicole Rochester:

I completely agree, Broderick the ideas that you mentioned in terms of we as patients and family members and communities educating ourselves about our own health and advocating for ourselves as someone who left medicine to become a professional health advocate, I’m all about advocating for yourself, speaking up, understanding what’s going on with your body? And I know that that can be challenging. And some people feel like it’s unfair, if I’m sick, the last thing I should have to worry about is fiercely advocating for myself in a medical setting, and it is unfair to some degree, but as you stated in this system and the system that we’re currently operating in it is absolutely necessary, and I love that you mentioned mind, body spirit, and as a traditionally trained physician, I will admit that we don’t get that connection, that’s not something that is part of our traditional training, and it’s unfortunate that we kind of just see the body over here, and then the mind over here, and we know that we are all… This is all part of who we are, and that if your environment is not optimal, if your mental health is not optimal, if your spiritual health is not optimal, then that’s going to manifest itself in your physical health.

I wanna start talking about health inequities, and I wanna piggy-back off of something you just said, Broderick, because you talked about kind of eating well and exercising, and sometimes those things, those behaviors are kind of weaponized against patients, particularly if they are in environments where that doesn’t just come easy. So we know that due to structural racism, due to inequities, not everybody has access to fresh fruits and vegetables, healthy foods, not everyone has access to green spaces, nice parks where they can go outside and safety and exercise, and that’s something that we’re being made increasingly aware of is how these social determinants of health impact healthcare. So I wanna move and start to talk about the importance of culturally competent care, or I like to call it cultural humility, I don’t know that we can really ever be competent in someone else’s culture, but I wanna talk about how those come together, this idea of being respectful and sensitive and aware of individuals culture and how that connects to some of the health inequities that we experience, so Aswita, I know this is an area of expertise for you, so I’d love for you to chime in.

Aswita Tan-McGory, MBA, MSPH:

Yeah, I mean, I would love it if every physician or nurse or PA started the conversation, what has been the biggest challenge for you in the last six months? If you ask that question, I mean, well the patient will be like, Oh my God. And not around just medical issues, they all align right? If you don’t have housing, you’re gonna have medical stress, like Broderick said. I’m just calm listening to you, so I’m gonna guess that you have is really positive vibe that’s probably missing for many of us because we aren’t practicing the things that you encourage, and so I would just say that it’s really difficult in the system like I said, we set up, and we mentioned 15 minutes, doctors don’t feel like they have time to ask that question, but you’re doing it in other ways, we implement social determinants of health screening. Well, that’s really that question, right. But you formalize it because it’s not happening, so now it becomes like a screening question, and I will just say that we’re very narrow-minded in our view, I think I have seen a change in the very beginning when we started the work in our center in 2006, a lot of pushback was around thinking about what happens in the patient outside of our walls, it said, Well, I didn’t go to medical school to solve the problem of housing, I didn’t go to medical school to figure out how to get somebody on benefits, and I think health care system realized it doesn’t matter what you do in the hospital, it will be undone when they get home to a situation where they can’t maintain it, they can’t provide that support, they don’t…

They’re stressed out, they have mental health issues, so I think they’re finally getting there, but I think just acknowledging that the person in front of you has different experiences based on, language, education, gender, ability, sexual orientation… I don’t think that’s a bad thing. I think you just need to own it, we’re working on it, so I do it better than others, but I don’t know any healthcare system, honestly, that’s nailed this to the way that we probably should, so… I’m with you Broderick, we don’t do this very well, and most of my job includes dismantling these systems that we built to benefit the people in power and leave everybody else behind, and so that’s been really the focus in our work.

Dr. Nicole Rochester:

Wonderful, thank you so much for sharing that. And for all the work that you’re doing in this area. Sasha, from your perspective, and you mentioned you’re a Mexican-American, you mentioned that there were significant barriers for you in terms of getting a diagnosis, having to leave your community. So, I love for you to share more about that, this idea of cultural humility, cultural sensitivity, and how that played out or maybe didn’t in your experiences with the healthcare system.

Sasha Tanori:

Yeah, I live in the lowest poverty line of California, so there’s not very much out there at all in my area, just to get my diagnosis, like I said, I had to leave out of my community to go get the community… To go get the diagnosis. Sorry. And when I did that, it was… A lot of it had to also do with your… For me personally, it has to do with like generational. My father doesn’t believe in diagnosis, diagnoses, to him, it’s like every time I kept coming to him and complaining about this issue, he was just like, Oh, you’re exaggerating, or it would be like the typical inaudible],  and put some Vix on it and you’re fine type of response, and I kept bugging him and bugging him, and he didn’t believe me, nobody believed me because it’s just such a… Like I said, I live in a… What’s the word I’m thinking of, I’m sorry. I live in a community that they don’t take things like this seriously from Mexicans, if a white girl was to go to the hospital and say, Hey, I’ve got bruises, it’s like, Okay, let’s do testing right away, but I kept… And it is a lot of my generational, I think, trauma from my parents or from my dad mostly, that I didn’t even believe myself, it’s just like…

I kept putting it on the back burner. I kept thinking, No, there’s nothing wrong. No, there’s nothing wrong. No, there’s nothing wrong. And I wish that I would have advocated for myself a lot sooner, I wish that I would have taken my own problems more serious because I didn’t… I didn’t think anything was on either, I just kept ignoring it because that’s just how my mind was trained from my community, from my parents or my dad mostly, and finally, once I was able to… Once I started getting really, really serious, I still didn’t get the help, I need it right away, it was now kept pushing it back on, you need to lose weight, or you’re anemic, or you have this blood disorder, so take this medicine, like nobody really took anything… I was saying serious because I also didn’t take it serious, my community doesn’t take it serious, my dad doesn’t take it serious, and that all just comes back to being Mexican, that’s just how it is when you’re Mexican, you don’t really take any of the serious issues serious, you go to work and you take care of your family. And you put yourself on the back burner.

You put yourself last. And it was really hard. Yeah, but now that I been through everything I’ve been through, I’m seriously, so passionate about making sure that people, especially Mexicans realize, Hey, whatever you’re feeling, whatever you’re going through, whether it’s physical, emotional, mentally, it needs to come first, no matter what.

Dr. Nicole Rochester:

Thank you, Sasha. That is so incredibly important, and even the way you’re sharing what you said towards the end about, You go to work, you take care of your family, this all goes back to cultural competence, all goes back to social determinants of health. It explains why often, racial and ethnic minority groups, those in lower income brackets have poor health, it’s not biology, but when you are needing out of necessity to focus on your next meal, then you’re going to push off going to the doctor, you’re going to neglect your mental health, which brings me back to you, Broderick, because we know that stress and anxiety and depression and all of those things impact your physical health, and as I said earlier, I think traditionally, there’s been this ridiculous disconnection between our minds and our bodies, and we know a lot more now, in fact, there’s a study, there are many studies, but there’s a study specifically looking at Prostate Cancer by Dr. Burnham, a researcher, and what they found in this study is that they looked at prostate cancer cells from African-American patients and white patients, and when they treated these cells with stress hormones, they saw that the black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy, and so it starts to look at the role of stress and stress hormones, and we know that there’s increased stress among minority communities, among… Sorry, urban communities, those who are otherwise disenfranchised, so from your perspective, can you just share a little bit about the connection between stress and physical illness and maybe how you approach that in the work that you do?

Broderick Rodell:

Yeah, so I’m just reflecting on what Sasha was saying and how the depth of what you’re saying and how this relates to stress. So these various patterns we don’t operate, we have a framework that we all operate from, and it’s beneath the surface of our conscious awareness and so our subconscious mind operating system is there, but that operating system comes from our conditioning, we’re conditioned by our families, by our local communities, our societies, and so the various structures that are in place are facilitating our conditioning and from our conditioning we… That our conditioning creates our perspective, the framework that we operate from, that’s determine… That’s gonna determine how we relate to our experiences, and how we relate to our experiences can be gracefully or it can be stressfully, just to put it in those two different terms, and so that stress, that is created based on how we’re relating to our experiences has a historical perspective, and so we have to address those issues. We can address on familial issues that has a historical relationship and say that maybe the relationship that my mother and father or grandparents had towards their own health is not necessarily to be the most optimal way to do that, and they may have had those ways of relating to their experience, based on their conditioning, based on the suffering that they’ve been experienced, environmental conditions that were conducive for that mental framework that they’re operating from, and so we have to work towards transforming that, and again, the place where we have the most power in ourselves, How can I change myself? When I listen to Sasha story, Sasha says, I have to change, I have to go somewhere else.

I can’t depend on my father to do it ’cause he’s gonna tell me to put Vix on, but that’s not gonna work for me. I have to advocate for myself, and so how do we increase that by increasing our education and learning about ourselves and learning about our mental models that we’re using to relate to our experiences and transforming those mental models to reduce unnecessary stress and tension, because when we’re under unnecessary stress, we have our epinephrine cortisol, these hormones that are increasing in our body, that’s gonna suppress our immune system. It’s gonna cause damage in our blood vessels, organs are not gonna function optimally, and I think that we’re gonna keep finding out more and more about this. I was interested, as you hear that about the prostate, prostate cells in African-Americans, why would that be the case? You’ve got generations of hyper-vigilance for historical reasons, cultural reasons or social reasons, then of course, that’s gonna get passed on from generation to generation, a sense of hyper-vigilance a sense excessive amount of stress hormones was floating around in the bloodstream, and it’s gonna have a significant influence on how the body is capable of dealing with various illnesses be it cancer, be it cardiovascular disease or any other disease that’s associated with, or ____ disease that’s associated with stress these days.

In particular, with cancer it’s very interesting, that relationship and why are these cells dividing and rapidly producing in the way that they’re doing, and how is that related to stress? I don’t think it’s… No, simple relationship there. You can’t just say, Stress causes cancer, I’m not saying that at all. But there is a correlation, there is a relationship, and if the thing that we can tackle, we can’t change our genes, but what we can do is change our relationship to our experience. Transform that to reduce the amount of stress or suffering and maximize well-being, and that’s the kind of work that I try to focus my attention on and what comes out of that is, Okay, I need to work on how I relate to my experience, but also How do I create favorable conditions in my internal system, in my body through the food, it through the exercise that I do it, through the literature and I expose myself to etcetera.

Dr. Nicole Rochester:

No, that was perfect, Broderick. That was perfect. I appreciate that because as we wrap up, we want to start to share solutions, how do we begin to change the conversation among healthcare providers, among community-based organizations, policymakers, those that influence the health of individuals and communities, and what you’ve described is what we can do. The power that we have within ourselves to reframe how we look at our circumstances, to reframe how we relate to our experiences to begin to minimize the stress to the degree that we can individually and how all of that really impacts health. I really, really appreciate those comments. Sasha, I’m going to go to you next and then I’m going to finish up with Aswita. If you had some advice that you could give from a patient’s perspective, and maybe you’re talking to a policy maker or healthcare providers, but how can we do better in this area as it relates to Whole Person Care, culturally competent care?

Sasha Tanori:

I would definitely say take your patients more seriously and not just like one-offs, okay, bye. A lot of the times they just do a couple of tests and they’re like, Oh well, we can’t find anything, so let’s just move along and there needs to be more conversation as well.

A lot of the doctors will come in and talk to you for like you said, 15 minutes, and then it’s like, Okay, you know, well, we can’t find anything wrong, so just go… And it’s like, No, let me explain everything, let me explain how I’m mentally feeling, how I’m physically feeling, how stressed out feeling, how emotionally I’m feeling, and there’s just so many different layers to just one, if you come in and say, Oh, well, my hip hurts. Okay, but why I explain more to it, not just okay let’s do an x-ray and you leave. Like there needs to be a lot more conversation going on between the patient and the doctor, there needs to be a lot more understanding where it could also be stress as it relates to work, it could be stress related to family, to love the ones… To kids, to spouses, there’s so many different things on top of that, that’s more than just, you know, Hey, you know like, I just need a prescription and you can go… There’s so much more conversation needs to be have then I really wish that a lot more health care providers would have that conversation with them, I know they don’t always have the time, they’re busy, but at least a little bit more compassion, a little bit more understanding, going about when it comes to patients.

Dr. Nicole Rochester:

I appreciate that, and you’re right. The time is an issue. And I will tell you as a physician and as somebody who has tons of physician friends, it causes internal conflict within the doctors, because I don’t know any doctor that got into this for any reason, primarily, other than to help patients, and so to be placed in these situations where you know that you’re falling short of providing the care that your patients need is actually quite disturbing. So that leads me to you, Aswita. So we’ve talked about all the things that need to happen in an ideal world, but as you described earlier, the system in which health care is provided in our country is dysfunctional, it’s broken, and so as someone with your background, what are some of the solutions? What are some of the things that healthcare systems and organizations can do with all these limitations that we’ve all been talking about today?

Aswita Tan-McGory, MBA, MSPH:

This actually came from my colleague who’s a psychiatrist, and we did a webinar together, and she mentioned this, and I just really loved it as a solution which is talking as a pathway to healing, when we think about… A lot of what I heard today, the big thing is a lack of trust between a patient and a provider or a patient and a health care system, there was so much trauma in our communities that we don’t talk about, and so I would say that like…

One solution is, we as a system need to talk about these challenges more openly or more… I mean I have this sign behind me it says get comfortable being uncomfortable to talk about racism, but I think also within our own communities, we need to talk more about the challenges, the things that we just sort of tolerated that are not okay anymore, and getting mental health care, acknowledging that we are disproportionately attacked when we go out on the streets, all of those things, we need to more openly talk and that is a pathway to healing, which I think this country really could use, and so my solution is simple but difficult, but probably cheaper than any other solution that I would offer to fix the issues. I think we just need to start there, yes, we can do many things, but I think talking about this as a pathway to healing would go a long way.

Dr. Nicole Rochester:

Wow. Talking as a pathway to healing. That is powerful. Well, I want to thank all of you for spending some time with me today, this has been a phenomenal conversation, one that I’m sure we could all continue for hours and hours and hours. But unfortunately, we do have to go.

I want to thank all of you for taking time to be part of this Patient Empowerment Network, Equity Rx webinar. Just to give a recap, we’ve learned about the importance of culturally sensitive Whole Person Care, how culturally competent or culturally sensitive whole person and care is important in reducing health inequities, we talked about how stress impacts lifestyle and cancer and all other chronic diseases, and we’ve also tried to provide you with some actionable pathways and potential solutions to this problem, it is truly these actions that are the key to staying on your Path to Empowerment. I’m Dr. Nicole Rochester, thank you for joining this Patient Empowerment Network program.