Conversation about Cancer Care Disparities

Friday
October 8, 2021, 1:05 pm -
1:50 pm
Understanding barriers to better research and treatments

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Watch On Demand

Session Description

A cancer diagnosis is one of the most difficult challenges a person and their family can face in life. Unfortunately, this challenge is even greater for some communities with various barriers—limited health care access, fewer cancer screenings, diagnosis at later stages, fewer treatment options offered—preventing them from getting the best care possible. Patient advocates from the African American, Latino, and Native American communities join us for a discussion of racial disparities in cancer care, self-advocacy, and building a support network. They will discuss social determinants of health, limited resources (financial and otherwise), and difficult relationships with health care teams. Moreover, they will discuss finding organizations and resources for knowledge and support, seeking out a second opinion, finding a clinical trial, and ensuring that your voice is heard. Together, they believe in empowerment through education and that you can control your cancer journey.

Session Transcript

Tamron Hall: We’re kicking off day two of the CRI Virtual Immunotherapy Patient Summit with our conversation about cancer care disparities. For this panel discussion, we are joined by cancer veterans Michaela Marchi, Barry Nelson and Karen Peterson, patient advocates from the Native American, Latino and African-American communities, respectively. They’ll discuss racial disparities in cancer care, self-advocacy and building a support network. Karen, who was a panelist during last year’s summit, will moderate today’s discussion. Karen, Michaela and Barry, welcome.

Karen Peterson: Thank you so much for that introduction, Tamron. I’m Karen Peterson, good afternoon, everyone, and welcome to the CRI Immunotherapy Patient Summit. Again, I’m Karen Petersen. I am a patient advocate and ImmunoAdvocate, and I am the founder of a nonprofit organization called Karen’s Club that supports and empowers patients around clinical trials. We are so happy to be here with you today. Before we get into our conversation, let me give you a little more context about myself and why I’m here and moderating. In 2017, I was diagnosed with stage four triple negative breast cancer, a very aggressive form of breast cancer. I was given 4% chance of survival, about a 4-15% percent chance of survival. I had to go through a lot, a lot of adversity and a lot of obstacles in order to find my way into a clinical trial, but luckily, I did, and I found it at NYU Perlmutter Cancer Center. It was an immunotherapy only trial. It was two drugs PD-1 inhibitor and an IL-2, and I felt like the trial was custom made for me. I got very lucky, and trial worked, and in 2019, I was deemed no evidence of disease and in 2020 I was deemed a complete responder. So I’m very happy and I’m very lucky and I’m very fortunate, but I also understand that a lot of my community doesn’t have the same opportunities that I have, and when we talk about cancer care disparities, words like inclusion, diversity, access and equity often come up, and we asked ourselves, “What is health equity now?” One definition, because there’s a lot of definitions about health care equity, according to the CDC, as a society we will achieve health equity when everyone has the opportunity to be as healthy as possible, and when I often think about that as a patient advocate, I think I’m standing at the bottom of a mountain and I’m trying to make my way up to my left and my right or patients and caregivers. I’ve got my rope, my hiking axe with me, and we’re trying to climb this mountain and each and every step we’re supported, each and every step. Every time we go a little further up, we’re making way because we’ve got these wonderful partnerships that are supporting each step and those partners could be, you know, community- based organizations and they can be medical professionals and they can be those wonderful nonprofits, and finally, when we get to the top of this mountain, I think to myself, “We’ve got trust, we’ve got understanding, we’ve got, you know, we’ve got a wonderful way and possibilities for us.” If we move to the other side and the other side looks like health equity, it looks like quality health care. It looks like clinical trials. It looks like living and thriving, and so I’m here and joined today by two wonderful human beings who have incredible stories about their health care journeys, and so I’m so proud and so inspired to think about the fact that this conversation is important because messaging is important and it’s always important to share stories, and when we think about sharing stories about cancer and cancer equity and disparities, we wonder how do we get here? When you think about that, I think about the COVID-19 pandemic, and it revealed the harsh realities of health care inequities that people of color have been experiencing for a long time. Today’s panelists will share their journeys and thoughts and experiences and give us a brief look into their personal health care journeys. I am so proud to be joined today by Barry Nelson from Boston, who was a lung cancer survivor, and Michaela Marchi, who is a mother warrior, self-described and who was a colorectal cancer survivor. So Barry and Michaela, thank you for joining us, and can you just Barry, can you just give us a brief description of who you are and what you’re like?

Barry Nelson: Thank you, Karen, for the wonderful introduction, and I am so honored to be here with you and Michaela with your powerful stories. We never thought that we would be on this journey, but here we are, and it’s what we do in life that makes a difference for others, and that’s what this discussion today is about. I also want to thank CRI for allowing me the opportunity to share my experience, and I hope that it encourages others who are there. My journey is a journey of faith. It’s a journey of science, you know, put that in perspective. My mother was diagnosed with advanced breast cancer when she was in her forties, and the long and the short of it is that at age 58. She had experience other forms of cancer, and she ended up dying, and so not only did I see my mother died from cancer, but I saw my mother’s sisters dying from cancer. I saw my grandmother, my mother’s mother, died from cancer, and so it was a lot of pain, all the different treatments, all the different surgeries that they had gone through. When I was diagnosed with advanced lung cancer in March 2012, the first thing that I once I understood what was going on with the diagnosis was I talked to God about it and I said, “Lord, you know, I know I’m going to leave here. I know that, you know, we’re not here going to be here forever, but let my life make a difference for others. My family has suffered,” and I was speaking personally to God about this, I said “my family has suffered so much, so let my difference, let my life make a difference for my mother and my aunts and my grandmother.” So I started on this journey of treatment chemotherapy. Several different types of chemotherapy treatment, and, you know, we weren’t getting the results that we were looking for. Actually, my oncologist, wonderful oncologists, he said, “Mr. Nelson, we’re going to use all the tools in the toolbox to help you.” So I always keep it in my spirit because it was a number of toolbox to got to get me here and to be able to try to be able to be a participant in a clinical trial for immunotherapy. I was actually in a previous clinical trial before I was introduced to immunotherapy, and that trial didn’t work for me. I had horrific side effects, and after that particular clinical trial, I had to go back into standard chemotherapy treatments again that weren’t working, and so when the opportunity for a clinical trial came my way for immunotherapy, I was one to five percent of the people who actually got into the trial. I was one in five percent of people who responded in the trial, and I share something else with you. I was one of the five percent of the people who after two years being on immunotherapy who came out of the trial, and it’s and it’s been six years and I am doing wonderful. So that kind of gives you an introduction about what I hope to share and hope that others, it would be a benefit to others as we have our conversation today. Thank you, Karen.

Karen Peterson: You have such an interesting story. Thank you so much, Barry, for that. Michaela, how are you today? Tell us a little bit about yourself.

Michaela Marchi: I am grateful to be here number one, and thank you to both of you for talking with me today and doing this, and thank you to CRI for giving us this opportunity to have this conversation. I have been describing myself as a mother, warrior cancer survivor because first I am a mother to my two beautiful kids, one of whom is having a 13th birthday today, and then I really have to say that it’s work to be a warrior in my cancer survivorship at this point, which I consider an action word and I don’t see as finite or absolute. It is a constant in my life and takes energy and effort to sustain. I see my survivorship as a huge gift. A blessing. A second chance to live because I am the first in three generations on both sides of my family to survive any cancer diagnosis. So I decided to take action and gift myself with an appointment to a genetic counselor at the age of 40, which led to the discovery of my Lynch syndrome, a hereditary cancer syndrome that in my case increases my lifetime risk of colon cancer to about 85 percent. All gynecologic cancers to between 40 and 60 percent and then several other cancers. So although I’ve survived this bout of colon cancer, I am genetically predisposition to have recurrence and or have new cancers pop up at any time. I have several cousins who have had multiple cancers throughout their lives. After I found out about my Lynch syndrome, I had a colonoscopy. I was diagnosed pretty quickly with that with stage four colon cancer and I rallied everyone. I knew they wanted to set me up with chemo right away, but because of all the cancer in my family, I knew that that wouldn’t necessarily work for me, and I ended up finding a clinical trial on my own with some help from friends and family, and I did immunotherapy that was in twenty sixteen. So all the cancer in my family I mentioned my mother had ovarian, my father had throat cancer and my uncle had urothelial bladder cancer. My aunt had multiple myeloma. Another one had cervical and then grandmothers. On both sides, I have been witness and caregiver to varying degrees for most of them, and if I trace my inherited Lynch syndrome on the family tree, it leads me to my mother’s side from the of Pueblo in New Mexico. So coming to this conversation today is important to me because my family is mixed. My mother was half Filipina. Half is letter Pueblo. My father was an immigrant from Italy who became a doctor. My uncle, his brother, came much later and had very limited English skills, so they all had very different experiences with their diagnosis, treatment and navigation of their cancer journeys. Of all the cousins and aunties and uncles I have in the Pueblo who have lynch related cancers, I don’t know of any who have participated in a clinical trial or had immunotherapy as a treatment option. So that is the big picture of my experience with cancers in my family, and that doesn’t even include friends. So the difference between who has had access to information and who hasn’t or didn’t know how to get it because of cultural, racial, linguistic, socioeconomic status, level of education. These things, I feel, should not interfere or influence a person’s right to quality care and the most advanced medical technologies and information. So my main interest? Now my action verb as a survivor, why I’m here is to support this dialogue on understanding those differences and finding figuring out ways to eliminate them so that everyone has equal access to information about treatment options and how to go about this challenge that affects so many of us.

Karen Peterson: Thank you, Michaela, for that introduction. It was really powerful. So before we jump into the equity part of the conversation, the disparity is part of the conversation. Let’s back up just a little bit and talk about the science because there are some folks in the audience who have never heard about immunotherapy, don’t know what it is, don’t know or see it as a treatment option, and so I was wondering, I know why immunotherapy was right for me, but I’m wondering, can you tell us why was immunotherapy right for you and Barry? Why would how would you answer that question? Why was immunotherapy right for you, the right treatment choice for you?

Barry Nelson: Well, you know, I’m sure my experience, like everyone else, is different for different and I didn’t even know what immunotherapy was. I never even had heard of it, but as I explained earlier, I had gone through a number of the standard chemo treatments and we weren’t getting the results we were looking for, and so, you know, I was outside of, you know, what was the norm? Now we have to look at is what is available in the strategic, in the science, in the, you know, research. And so that’s when I begin to understand what was going on behind the scenes, what the scientists were working on and how they were hoping to extend my life and others like myself as I began to fill out the paperwork for participating in the trial. Of course, you know, I would come home and I would study this and I’d go over to the internet and I would kind of, you know, get an understanding what is the PD-L1 and what is what is this and what is that? I, you know, try to understand what those terms and why did I qualify? And so, you know, as I began to learn that hopefully this process was going to use my own immune system to, you know, not kill, continue to allow the medicine to kill my cells healthy cells, but to have my own immune system, to be able to fight, to identify the cancer cells and get rid of them. So I found that exciting. So one of my other experiences, you know, I’m going to jump ahead of this. I was very fortunate because once I got on immunotherapy, my life changed immediately. I mean, immediately the first infusion that I received, I could tell there was something different, and I waited to see my oncologist to share that with him, and he said, “Well, you know how that goes, Mr. Nelson. We have to do three treatments. We have to do a scan and then, you know, so we did that.” After those three treatments, they looked at my scans and they had shrunk 25%, but one of the most phenomenal things out of this was after I was on immunotherapy for a while and my life had turned around. What happened was I had gone in, I started writing my bicycle to my infusion appointment, and I, you know, I would have my helmet with me and people, the other patients that were there waiting with their families, and they would say, “Guy, I don’t like something wrong and something dirty, something sticking out. What is am I smelling or whatever?” So that particular day that one of those particular days, my one of the research nurses said, “Did you ride your bike today?” I said, “Yes, I did.” She said “I was wondering if you’d be interested to meet the scientists from the team who’s developing the medication that is helping you”? I said I would love to. So the long and the short of it was, she did invite him. He came to one of my appointments later and when he came to my appointment with my oncologists, my oncologist, he introduced me. He asked, “Was it OK to show him the scans before I went on the medication and after and I gave my approval?” The scientist, he was just so moved by this experience because, you know, scientists that work in the lab, they don’t actually meet patients. They don’t always get to see the impact of the work that they’re doing, and so there was a connection that was built that day. You know, it was in a way I described this as almost meeting God. You know, I know this man and his team aren’t God, but how they help me and people behind me, like myself all over the world change their life, extending their life and help families because of their commitment and their gift from above to, you know, come up with something that was going to allow our own bodies to be able to respond in a way that it kills all those cancer cells. So, learning about immunotherapy and it’s a continuous process, because see, when I went into this trial, I went in for lung cancer, but they had used it previously for melanoma, skin cancer, and so it works the will they say, “Well, let’s try it with lung cancer.” And so then they tried it lung cancer, and it worked well there. It didn’t work for well for everyone, but it worked so well for so many people. And so now it’s becoming part of the standard practice globally of how to treat cancer, making more options for extending people’s lives. So I mean, as I said, you know, you can see I’m excited about this, but learning about immunotherapy. You know, it’s not one event. It’s a continuous process, you know, and the different people that I meet and I hear, you know how they may be struggling with something who never even heard about immunotherapy, that these types of options are out there. These types of trials are going on for various other cancers and not just melanoma and lung cancer. So, you know. I say this is an exciting time for all of us. No one wants to have cancer, I don’t believe that they do. But you know, when you hear that C-word, it’s not like, OK, that death threat is staring in the face this there’s a there’s a feeling of hope. There’s a feeling of, you know what? I’m going to get through this. I have a tool in the toolbox that they’re using and they’re going to use all those tools to help me and everyone else who’s struggling with this thing called cancer.

Karen Peterson: I love that response, because when I think about toolbox and I think about hope, I think about what my own experience was like and I can remember I was trying to make an informed decision, and as a triple negative breast cancer patient, I was wondering how do I get there? How do I achieve the goal of lengthening my life and staying alive? I can remember meeting an oncologist, and she introduced me to different thoughts about thinking specifically about my tumor makeup and getting information so that I could help myself make an informed decision, and I can remember not understanding what a genomic test was, not understanding that if you take this test and it will give you information, and it might be even a valuable biomarker that will indicate whether or not immunotherapy is right for you as a triple negative breast cancer patient, and I can remember thinking, OK, you know, this makes sense because, you know, together we were collaborating and we were trying to help, you know, me become more conscious about making choices that were informed so that I wasn’t making the choice to go into a clinical trial because I was emotional. I was making the choice of going into a clinical trial because I thought it was right for me and the reason why I thought it was right for me because I had data and scientific information, I could actually back that up. So I always think it’s really important to let people know, you know, there’s some work that has to be done. There are some things that have to come together and you’ve got to be able to collaborate with your doctors. You’ve got to be able to get certain tests and you’ve got to be able to understand the decisions that you’re about to make and collectively. I was really lucky to be able to get in a space where I found the doctor that valued my voice after walking away from my original team. So that’s how I knew immunotherapy was right for me because I had some science-based information that indicated that immunotherapy was going to. There’s a strong possibility that would work for me. What about you, Michaela? How did you figure out who helped you figure out like immunotherapy might be correct for you?

Michaela Marchi: Well, I think I have to start with what I knew wouldn’t work. I there was a video that played right before us where I talked about I felt like my whole life had sort of been preparing me for this for this diagnosis because I had seen so much cancer in my family, in my life, and then when it came to me and they closed me up after that exploratory surgery and said, “Oh, you’ve got stage four, let’s get you ready for chemo.” It was like everything in my body screamed, “No!”, that that isn’t the answer for me. It hasn’t worked for anyone in my family, even though they had all different cancers, but I really had to trust myself in what I knew at the time and what my gut was telling me, and to look for something else to see what else might be out there, and I did end up leaving that hospital because they were so quick at the time to put me into this chemo regimen, traditional treatment option and went to the computer and did the research, and when I learned more about it, it just it made more sense. It made more sense to me as a way to get through using my own immune system. You know, the body is an amazing. Other thing our bodies want to live, so any I think anything that we do to help support that effort will work in our favor because that’s why we’re here, because we want to live. So I trusted the science, and I trusted myself and I asked lots of questions, and I questioned my doctors directly and I told them who I am and what these decisions meant for me, but I was lucky because I had a background that prepared me. I had my father as a doctor who helped me learn about the medical terminology who encouraged me to speak up for myself and my mother, too. So that’s how I knew immunotherapy and this clinical trial would be a good way to try.

Karen Peterson: Yeah. Thank you for that, and so I know advocacy is both important to both of you. I know that you’ve both been involved in cancer immunotherapy clinical trials, and we all understand that it’s important for black and brown people to be included in clinical research and a lot of the times we are not involved in clinical research. So why is advocacy important to you and especially in regards to clinical trials? Barry, do you want to talk about that?

Barry Nelson: Yes, thank you for the question. You know, I go back to that day when I got the diagnosis that I was stage 3b, a small cell lung cancer, and I thought I didn’t think about myself. I thought about again, my family, I thought about the suffering that I saw my mother, my grandmother and my aunt go through all the different treatments they went through all of those, you know, the weight that was on my family, you know, getting through this and. I when I talked to God that day, I was like, you know, “Lord, I know that I have a purpose in this life, and sometimes I think I know, but I know, you know, better what that purpose is.” So I hope that you’ll use this life here to make a difference for those, and so, from that point on, I just felt like I wanted to share with other people that you have to advocate for yourself, because see, what happened to me was when I first got diagnosed, I was going to an institution and I had three different oncologists and one of them was a primary oncologist. The other one was the radiation and the other was chemo, and I was seeing them each week and then I would go and talk to them. Each one of them had a different prognosis of my outcome, and I was confused. You know, when you’re first diagnosed with cancer, there’s a lot of things going through your head. You’re trying to put this stuff together. I mean, we never been down this road personally before. We may even see other people experience it, but for us personally, that was something we had to put our arms around, and so there were a lot of questions I had. There was a lot of confusion, and so I asked those three doctors, could we get together in a room so we can discuss that? Unfortunately, they kind of pushed back and pushed back and pushed back, but once we did get that meeting together with the other clinicians as well, the primary oncologist came into the room while no one else would see it and said, “Listen, you were wasting our time. You’re going to die and you need to accept that.” No one has to be treated that way, OK? No one has to be treated the way you know, we talk about equity. Everyone deserves the same type of care, and so I knew then that I wasn’t going to settle for what they told me. So what I said at that meeting was, I thanked everyone I got in my car, my daughter, we were driving home. My daughter said, “Dad, are you OK?” I said, “I’m fine.” I got home. I called my primary care. I said, “Listen, I can never go through that again. I have to see a lung cancer specialist.” He said, “Well, I’m looking at your file, you got a second opinion, can I send you back to that lung cancer specialist?” and I said “Yes.” He made the appointment, I went to the appointment, and I explain to them what happened. My oncologist, he told me, he says, “Listen, Mr. Nelson, we apologize, but you won’t ever have to go to that. You will not be treated that way here. We have plenty of tools in the toolbox and we’re going to use every one of them.” So the point I’m trying to make here is I feel that everyone is like me. They want to know that they’re with someone who is going to fight for them as hard as they fight, and that’s the message that I want people to understand that you have the right to fight for your life and to fight for your loved ones and those who are experiencing some health challenge because you don’t have to just go along with what someone else tells you because they have a white coat. You’ve got to realize what’s right for you and let that drive you. Now I’m not saying being rude or arrogant, but I’m saying that health care is a partnership, and so we, our providers, whoever they are, clinicians, we should be a partnership. As Karen was speaking earlier, they made joint decisions, and that’s the type of health care that I have been getting, and so that’s why I advocate for is that people understand, you know, bring your concerns to your primary care. I teach my children that, and if you know, if your primary care or your physicians aren’t doing what you want, you’re not happy with it, tell them. If they don’t respond, you find someone else. You don’t have to go along with them because you know your body better than anyone else. So that’s really what helps to drive my advocacy.

Michaela Marchi: You know, I think it’s a change in the whole system that I’ve realized we need to support. Because yes, we need to ask our doctors lots of questions and fight for our lives, like you said, so, so beautifully, but those doctors also need to understand what it means to meet the patient where they’re at and understand where they’re coming from. So just like we’re trying to reconfigure or re-center education, we also have to re-center the medical world and interactions in the exam room because I’ve tried to have different kinds of conversations, like about nutrition, with my oncologists. They’re not trained. I’ve tried to have other kinds of conversations that I think would be relevant to my surviving and getting through treatment, and they’re not trained necessarily in those areas. So they also need support to meet patients where they’re at and understand that patients are coming to the room as whole, beings with a range of experiences and emotions and fears, and so how can that interaction be best facilitated? My sense of advocacy comes from, you know, I mentioned earlier that I’m the only one out of all my cousins and there are many that I know of who has participated in the clinical trial and when I have or has had immunotherapy, when I know that Lynch syndrome related cancers respond typically better to immunotherapy. So why is that? Why are they not having those options presented to them? When I reach out to organizations like the American Indian Cancer Foundation or Roswell Park Center for Indigenous Cancer Research, they confirm that a lot of times in the tribes, they’re just meeting the base concerns of their patients, rather than going beyond to see what the latest treatment options are or clinical trials that come secondary. So, you know, there’s a whole host of things that need to happen in order to get to this place of equity and both sides, and if I was able to receive it, my family is made up of all these, you know, I consider humanity, my extended family. So we all have to make changes in order to find that even more even ground.

Karen Peterson: Thank you, I want to go to a live question. “In regards to what advice would you give other cancer patients approaching a conversation about immunotherapy with their doctors, are there certain questions you would recommend asking?”

Michaela Marchi: Well, I, for one, had some serious side effects. I would definitely ask about side effects. I mean, they’re going to tell you, they’re going to give you a lot of information. So I would suggest taking the time to process. Don’t make decisions lightly or quickly process. Involve your family and friends for other eyes on the situation, on the questions that you have and then go back. I would suggest writing your questions down, as I have done many times, every time I go, I even bring research articles with me, sometimes to the office and like, “Oh, you read that one?” I’m like, “Oh yeah. I did! Let’s talk about it.” So definitely ask questions, but have them sort of prepared before you go in because once you get in there, it can be daunting sometimes. Side effects and yeah, if you can make sure, I mean, I know they’re talking about this throughout the summit, but just be assured that you can get out if you want to and understand the process of what this medicine is doing.

Barry Nelson: I agree. I agree with that, and I think that what I would add to what she stated would be, you know, this is a whole journey. You know, we everyone is not going to respond the same, everyone is not going to get the same results. So if for some reason the person goes into the trial and they don’t respond to the medication, what other options are available to them? Will immunotherapy impact any other options because immunotherapy did not work? So that the person will have a clear picture so they can make the right choices for themselves as they navigate this road because I’ll go back to that word “toolbox.” You know, there’s so many different strategies in that toolbox, and so, you know, that doesn’t mean that everybody can use every one of them. There are certain ones that they’re going to work for each one of us, but figuring those out is not always the easiest way. So just have that real conversation with the commission about, you know, if I feel this is right to me and I find out it’s not working. What’s the next step? What is the next step look like? What’s the impact to me? What’s the impact to my family? I think that’s an important question as well.

Michaela Marchi: I just wanted to add the importance of asking about support because I never did, and it wasn’t until I found Cancer Research Institute, actually, that I realized I could have used it, and I’m using it now as a survivor, and will continue t, but I think that’s an important thing to ask about if it’s not given to you.

Barry Nelson: Definitely.

Karen Peterson: Thank you. I think both your answers were right spot on, and when I’m approaching a conversation about immunotherapy with the doctors, always think about trying to figure out asking the doctor, if you’re recommending immunotherapy, what are we basing this determination on? What tests do I have to have to put myself in position to think about immunotherapy as a treatment option, and like you said, Barry immunotherapy doesn’t always work for everyone, and you have to try to figure out your best options and whether or not and put yourself in the position that you, you know, have a good chance of it working, but before you can do that, you’ve got to decide whether or not, whether it’s right for you. In order to do that, you have to have some testing. In addition to that, you have to just do your due diligence and get some research and some support, and so CRI is one of those places where you can get that, where you can get some education and some information in regards to immunotherapy and whether or not it may be a choice for you. We have another question in the chat and it’s from Diane, and she indicates “I am a rare cancer patient and I’m out of one out of only 10 African-American advocates for National Rare Cancer Organization.” So she’s a cancer advocate. “How do I get the word out to more African-Americans and increase their involvement in advocacy for rare cancers?” So she’s a rare cancer advocate. She’s one of only 10 African-American advocates for nationally national rare cancer organizations in the U.S., and how do I get the word out for more African-Americans and increase their involvement in advocacy for rare cancers? Do you have any thoughts?

Barry Nelson: I think there are many paths to that answer that question. One of them is what we’re doing now. You know, as participants with CRI, you know, there are other conferences, organizations out there that you know, they welcome cancer survivors to come and to share their stories. You know, storytelling is powerful, and so these platforms, they’re there to help survivors and their families to share these stories, to help provide this knowledge, this guidance, and so, you know, hopefully this person is asking that question if you want to follow up even more, I’d love to talk to you about it. I have my profile on CRI. Feel free to reach out to me. I can share some of my personal experiences, some of the advocacy work that I’m doing, some of the groups that are with faith-based groups and scientific groups and research groups and hospital groups, and so there are many paths. That’s my answer. Many paths. So and I would be happy to guide Karen was her name. Diane?

Karen Peterson: Diane is her name.

Barry Nelson: Diane, Diane. So yes.

Karen Peterson; Diane, I would say to you that it’s important to gather support, like Barry said, in regards to where your messaging is going, so you can start really locally based. You can start in the churches. You can start with those grassroots organizations pairing up with other like-minded groups who are trying to get the message out there about rare cancers, about health equity, about disparities, about access to quality health care, identify those groups and go after them and pair up with them. They’d be more than happy to speak to you and see how you guys can help each other. In addition to that, start talking to your local, you know, actually their national organizations because we already talked about local. So going after those national organizations that have initiatives in regards to inclusion and messaging and disparities and trying to open the door up and make sure that you know, equity and health care is across the board for everyone. So, you know, looking at those organizations taking your time and going, OK, let me write something, let me write the person whose input, you know, in charge of patient advocacy or patient communication or patient outreach and just have a conversation with them. It’s all about networking, and it’s all about reaching out, and there are so many organizations out there that really want to help, so I definitely would take that path. Let’s see.

Barry Nelson: I’ll add one more. Talk to me and talk to your physician. What really got me started in this direction was my physician invited me to go to a patient experience seminar and to be one of the panelists, and I was very uncomfortable with that. But I met this woman there, who have been a cancer survivor for over 25 years. I was so impressed with that. I was so impressed because I was looking at my family’s history and I said, “I want to meet this woman. I want to know what she’s doing. I want to know the impact she’s making other people’s life.” I went and met her and I said “I would like to work with you in her group” and it’s opened up so many doors for me. So I mean, start with your primary care, start with your physicians that you’re working with.

Karen Peterson: Well, we’ve got time for one last question, and I think I’m going to end with this question and it’s a loaded question and it’s about health care equity. What do you think we’re going to have to do to get there? I know that’s a loaded question, because we could probably then spend a whole other hour about talking about that, but what do you think? I guess maybe three points that it’s going to take for health care equity, for everyone to happen, especially for black and brown folks. What do you think?

Michaela Marchi: Well, that is a loaded question, and it’s a big one. Definitely what we’re doing here. I think we’ve talked a few times about how this one panel could be a whole summit, a whole conference, and it should be at some point as soon as we can bring more voices to the table. How we get there is involving more people of color and making the research actually reflect the reality of the world in which we live. Also training our doctors and our medical teams, our health care teams, to also shift their kind of dissenter the way that they do things so that they practice in a more inclusive way, even approach their patients and with that perspective, I think I said three, right?

Barry Nelson: I agree with everything, Michaela said. She to me, she hit the really top ones, but Karen, I use you as an example. You know, you took your story and you said, “OK, I’m going to make a difference and you develop an organization that’s going to reach out to people that’s going to be there to help coach them and guide them.” I think that we have to get that commitment in our lives that, you know, we’re going to do something. We’re going to help make a difference. Our voice may not be as big as someone else’s, but you know, it’s a transformation that happens inside of us that I’m going to do something, whether we volunteer at a, you know, one of the things that I do. I volunteer at the Center for Patients and Family at Brigham and Women’s Hospital in Boston, and I’ve been doing that for, you know, like six or seven years. I sit on a number of patient family advisory councils. I participate in other research initiatives that go on every opportunity. Basically, that comes my way. I have difficulty sometimes saying no, but I want to make a difference, and I’m determined that when people bring these conversations forward, people see what’s available. That’s how the transformation begins. It starts a little small group like this and they continue to expand out, you know, so I’ll add my two cents to Michaela because she had the big quarter in the dollar there.

Karen Peterson: She did, and thank you for that, Barry. When I think about how we’re going to reach health equity and what can we do, I think about opportunity investing in education. So I think about the opportunities of, you know, more researchers of color, cancer researchers of color actually running clinical trials and becoming principal investigators. I think about the investment that parents and pharmaceutical companies and funders have to make to fund these growing young scientists that are awaiting and just need a chance to be able to represent the community and come back home and treat the community. In addition to that, I also think it’s really important for those educational opportunities to happen wherever they can, whether it’s with a nonprofit like my own Karen club or whether it’s with CRI or whether it’s with the American Cancer Society or whether it’s with Susan G. Komen or whether it’s with AACR. There are so many opportunities that nonprofit organizations can step in and say, “You know what we need to do and continue to do the job of making sure that people of color black, brown and black folks feel empowered and feel like their voices are heard, and how can we do that?” It comes through education because with education, you feel like you understand. When you understand something, you feel like you feel empowered. So I think it’s always important for education investment in the community. Think about those clinical trials and where they’re happening and the fact that, OK, they’re actually happening at large teaching institutions, but what about them happening in the community where you know we’re getting treated at? So I want to thank everybody for coming here today and participating in this panel. It was wonderful. Thank you, Michaela, thank you, Barry. You guys are wonderful. You guys rock. Thank you to CRI for providing this platform. I appreciate it. Have a wonderful day. Thank you.

Barry Nelson: Best to you, Michaela.

 

Speaker(s)

Barry Nelson

Lung Cancer Veteran

In March 2012, Barry was diagnosed with advanced stage 3B non-small cell lung cancer and told he had months to live. He was already familiar with the radiation and chemotherapy that his initial treatment regimen included as he had watched and cared for many family members, including his mother, over the years. He experienced debilitating side effects, such as neuropathy, that confined him to his bed. In October 2013, Barry learned about an immunotherapy clinical trial using an immune checkpoint inhibitor, pembrolizumab (Keytruda®). After the first infusion, he immediately felt that the drug was working. After the third infusion, scans revealed that the tumors had shrunk by 25 percent. After two years on the clinical trial, his cancer remained progression-free, and he was able to actively enjoy his life again. In February 2021, Barry celebrated his five-year treatment-free anniversary. He lives his life with renewed faith and dedication to paying it forward through patient advocacy and volunteer work as a CRI ImmunoAdvocate.

Michaela Marchi

Colorectal Cancer Veteran

In 2016, Michaela gifted herself with an appointment with a genetic counselor to gain insight into why so many of her family members had been diagnosed and subsequently died of cancer. The genetic counselor found she has Lynch syndrome, an inherited mutation that leads to cancers of the colon and uterus at an early age. Two months later, she was diagnosed with stage 4 colon cancer and given 1-2 years to live. Michaela and her family did not accept this prognosis and, armed with their knowledge of Lynch syndrome, found an immunotherapy clinical trial of pembrolizumb (Keytruda®). After roughly one year on the trial, she has no trace of cancer in her colon. Today, Michaela introduces herself as a Mother Warrior Cancer Survivor: the first survivor in three generations on her mother’s Isleta Pueblo bloodline. She is proud to be a CRI ImmunoAdvocate and help others by sharing her story.

Moderator(s)

Karen Peterson

Breast Cancer Veteran

Following surgery and chemotherapy for stage 1 triple-negative breast cancer, Karen took charge of her cancer narrative by researching other treatment options and talking to experts during a brief period of remission. When her cancer returned in 2017—this time metastatic—she was facing a life expectancy of 18 to 24 months, but she was prepared to try something new. She enrolled in a phase 1 trial at NYU Langone’s Perlmutter Cancer Center combining two immunotherapies: bempegaldesleukin (BEMPEG; NKTR-214) and nivolumab (Opdivo®). Her first CT scan, after eight weeks of immunotherapy, revealed a 72 percent reduction in tumors. In June 2020, Karen’s oncologist declared her “an official complete responder.” Her cancer immunotherapy experience has impassioned her to become a patient advocate and CRI ImmunoAdvocate.

On-Demand Now Available

We are excited to announce that videos from our 2021 Cancer Research Institute (CRI) Virtual Immunotherapy Patient Summit are now available to view on demand.

The on-demand videos can be found on each session page from the agenda.