Tag Archive for: African Americans

Multiple Myeloma: Thomas’s Clinical Trial Profile

Multiple Myeloma: Thomas’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

 At the age of 34, Thomas was diagnosed with multiple myeloma. After multiple treatments, including an autologous stem cell transplant, Thomas shares why it’s critical to increase participation in clinical trials so we can understand why multiple myeloma poses a greater risk to certain populations. In Thomas’ own words, “Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma.”

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See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles

Transcript:

Thomas: 

My name is Thomas, and this is my multiple myeloma story. At age 34, I was healthy and enjoying life. I went to the gym daily, and when I wasn’t working out, I was shooting hoops with my friends.  

During a workout, I suddenly felt excruciating pain in my left shoulder. My family physician declared I had bursitis, but I was so young and in such good physical shape, I knew by instinct that the diagnosis was wrong. I made an appointment with a sports medicine doctor, who ran CT and MRI scans of my upper body. The result wasn’t good. I was diagnosed with multiple myeloma, a cancerous tumor of plasma cells in my left scapula.  

Because the myeloma was localized to my shoulder, my oncologist recommended 6 weeks of radiation therapy. 10 months after the treatment, the agonizing pain returned, but this time in my lower back. The pain was so intense, I remember lying on the floor, unable to move. My myeloma has spread to my lower backbone and right ribs. This time, I received an autologous stem cell transplant, but after 2 months, I relapsed again.  

Still determined, I agreed to participate in a clinical trial to receive an allogeneic stem cell transplant using human leukocyte antigen (HLA)-matched donor cells from my brother Earnest. This time, I lived cancer-free for two years before relapsing. To keep the cancer from progressing, I joined another clinical trial to receive a second allogeneic transplant using my brother’s donor cells. This aggressive treatment also included an intensive conditioning regimen of high-dose chemotherapy plus total-body irradiation. Although the therapeutic effects were serious and kept me hospitalized for 127 days, the transplant was successful and pushed back my cancer for another two years.  

Since then, my cancer has relapsed multiple times, but I refuse to accept defeat. Although my cancer is unlikely to be curable, my current treatment has been successful at keeping the myeloma from advancing. I’m hopeful that I can live a long life while treating it as a chronic disease.  I want to share my story as a Black person with multiple myeloma to raise awareness of this rare cancer. African Americans are twice as likely to develop multiple myeloma compared to whites, and are also more likely to be diagnosed at a younger age1.  

It’s critical we increase the participation of Black people in clinical trials so we can understand why multiple myeloma poses a greater risk for Black people, and get closer to a cure.  Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma. 

How Can BIPOC Breast Cancer Patients Overcome Health Disparities?

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

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

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


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Transcript:

Dr. Nicole Rochester:

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

Dr. Regina Hampton: 

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

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

Dr. Nicole Rochester: 

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

 Dr. Regina Hampton: 

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

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

Dr. Nicole Rochester: 

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

Dr. Regina Hampton: 

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

Dr. Nicole Rochester: 

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

Why Is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

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

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

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Is MGUS More Prevalent in BIPOC Communities?

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Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Can We Address Noted Disparities in Multiple Myeloma?

How Can We Address Noted Disparities in Multiple Myeloma?

 

Transcript:

Dr. Joseph Mikhael:

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

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

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

Is It Possible to Achieve Health Equity in Multiple Myeloma?

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

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

See More From the Diverse Partners in Your Myeloma Care Program


Transcript:

Rebecca Law:

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

Diahanna Vallentine:

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

Dr. Sikander Ailawadhi:

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

Jenny Ahlstrom:

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

Dr. Saad Usmani:

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

Rebecca Law:

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