MPN-Related Complications | Are BIPOC Patients at Higher Risk?

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MPN-Related Complications | Are BIPOC Patients at HIgher Risk? from Patient Empowerment Network on Vimeo.

Are BIPOC myeloproliferative neoplasm (MPN) patients at higher risk of MPN-related complications? Expert Dr. Idoroenyi Amanam from City of Hope explains risk factors for MPN-related complications and proactive questions to ask your doctor.

[ACT]IVATION TIP:

“If you have a myeloproliferative disorder, I would want you to check with your doctor if you have a risk or you do have diabetes or high blood pressure, high cholesterol, and if so, how can you improve that diagnosis in order to decrease your risk or complications related to your MPN.”

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Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

 How Can MPN Clinical Trials Be Diversified?

How Can MPN Clinical Trials Be Diversified?

 Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

Dr. Amanam, what risk factors put the Hispanic and/or the Black population at a larger risk for MPNs?

Dr. Indoroenyi Amanam:

Yeah. So conventional risk factors such as atherosclerosis, high blood pressure, high cholesterol, diabetes, and smoking. We do know that in studies that those factors, potentially put you at higher risk for complications that are associated with myeloproliferative disorders. And we also know that, and, for example, if you’re an African American male, two in five African American males have high blood pressure. And when we look at all comers in the United States, only about a third of people have high blood pressure. So in that setting alone, we know that if you have high blood pressure, you have a higher risk for these complications-associated MPNs. And we know that African American males have a higher risk for that, so I think those things are…that example is a clear indicator that really identifying these basic risk factors that are related to diet, exercise, your weight, and other behavioral, possibly behavior-related factors may put you at higher risk to have complications from MPNs.

So, Hispanics, for example, have you twofold, they’re twofold higher risk to be diagnosed with diabetes than Caucasians. So that’s another example. And so I would say for MPN, that’s actually low hanging fruit. That means we don’t have to give you a new therapy or a MPN-related therapy. We can help you by improving your diet. Really giving counseling for cessation of smoking, really, education related to physical activity and exercise. I do believe that those are modifiable risk factors that we can address. And MPN physicians or cancer doctors can help their patients by really educating them in that way.

Activation tip for this question. If you have a myeloproliferative disorder, I would want you to check with your doctor if you have a risk or you do have diabetes or high blood pressure, high cholesterol, and if so, how can you improve that diagnosis in order to decrease your risk or complications related to your MPN. 

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Have MPN Disparities Been Addressed by Institutions?

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Have MPN Disparities Been Addressed by Institutions? from Patient Empowerment Network on Vimeo.

Have myeloproliferative neoplasm (MPN) disparities been addressed by institutions? Expert Dr. Idoroenyi Amanam from City of Hope explains MPN disparities that need to be improved, how institutions can collaborate on improvements, and how patients can advocate to lessen disparities.

[ACT]IVATION TIP:

“…we need to ask and understand the biology of different groups a bit better, and I would ask my provider, is your institution working towards that goal?”

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Related Resources:

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

 MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

 Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

So, Dr. Amanam, what can institutions do to better address racial and socioeconomic disparities in MPNs? And what has changed? Have there been improvements in that?

Dr. Indoroenyi Amanam:

Yeah, I think that along the lines of improving access to care and understanding what are the socioeconomic reasons for poor outcomes in specific groups, I do believe that from a scientific perspective, we have to understand why some specific groups have poor outcomes. So what are the biologic differences? And I do believe that centers should work together to get this understanding especially since MPNs are a rare disease. And each institution may not have the numbers to really be able to answer those questions.  So my activation tip for this question is, we need to ask and understand the biology of different groups a bit better, and I would ask my provider, is your institution working towards that goal?

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Are There Any MPN Disparities in Subtypes and Genetics?

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Are There Any MPN Disparities in Subtypes and Genetics? from Patient Empowerment Network on Vimeo.

Are there any myeloproliferative neoplasm (MPN) disparities seen in subtypes and genetics? Expert Dr. Idoroenyi Amanam from City of Hope explains what studies have shown, the role of access to care, genetics of African Americans, and questions to ask your doctor. 

[ACT]IVATION TIP:

“…if you have a myeloproliferative neoplasm and you have some specific complications, and there are treatment options offered to you, I would ask your provider if there are any differences in outcomes related to if you are a Hispanic woman or if you’re a Black male, or if you’re a Caucasian female, I think it’s important to understand if there are potentially differences in the outcomes related to the treatments, and then you can maybe tailor your treatment specific to your ethnicity and sex.”

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Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

 MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

 Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

Dr. Amanam, can you speak to the disparities seen in MPNs and other subtypes and the role of genetics?

Dr. Indoroenyi Amanam:

Yeah, I think this is a great question, especially in the context of when we think about socioeconomic and racial disparities. I think that it is very important to continue to address those issues. I think the Affordable Care Act assisted in giving wider access to some patients who would not have the opportunity to receive care. But we have to go beyond the idea that race is a social construct. I think there are biologic differences. There are genetic hereditary differences between different groups. 

When you look at African Americans and you look at their genes and the median amount of genes of African descent. About half of African Americans have less than 80 percent of genes of African descent, which means that they’re biologically…there are biological differences that are related to their experience here in America and in the Western Hemisphere. And they have a more diverse gene pool, which may contribute or not contribute to cancers and other diseases. Other studies to really understand what are the scientific biologic hereditary differences and how we can improve those outcomes once we understand those. And so for MPNs, we don’t really have a good understanding of that, and I think that’s definitely a space for all of us within this disease for us to really improve upon.

My activation tip for this question would be, if you have a myeloproliferative neoplasm and you have some specific complications, and there are treatment options offered to you, I would ask your provider if there are any differences in outcomes related to if you are a Hispanic woman or if you’re a Black male, or if you’re a Caucasian female, I think it’s important to understand if there are potentially differences in the outcomes related to the treatments, and then you can maybe tailor your treatment specific to your ethnicity and sex.

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What Does the Future of Myeloproliferative Neoplasm Care Look Like?

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What Does the Future of Myeloproliferative Neoplasm Care Look Like? from Patient Empowerment Network on Vimeo.

What does the future of myeloproliferative neoplasm (MPN) care look like for patients? Expert Dr. Idoroenyi Amanam from City of Hope explains how MPN treatments have changed in recent decades, symptoms that are relieved with treatments, and how treatments of the future may help patients.

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 Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?

 Are There Any MPN Disparities in Subtypes and Genetics

Are There Any MPN Disparities in Subtypes and Genetics?

Transcript:

Lisa Hatfield:

Dr. Amanam, what promising treatments are available for newly diagnosed MPN patients, and what questions should patients be asking? They come into your office scared to death and not even knowing what to ask. Do you have any suggestions for what those patients should be asking when they go in as a newly diagnosed patient?

Dr. Indoroenyi Amanam:

Right, right. Twenty years ago, we really didn’t have any therapies for most MPN patients, aside from performing phlebotomy and using non-specific therapies to try to help control their counts and therefore reduce their risk of clotting and stroke. We are getting to a point which is really exciting, where we actually are treating the underlying disease, meaning that the cells that are causing this cancer, we have been able to identify targets that will help eradicate those cells and, therefore, get rid of the cancer. And so we’re getting there. Unfortunately, we still are not there yet, and so when we look at the FDA-approved drugs in this space, really, they help control symptoms, they help control some of the associated complications with the disease, mainly when your spleen’s enlarged, and that potentially may affect your quality of life, mainly your nutritional status and your physical status, and so we do have drugs that are able to do that, that are FDA-approved right now.

I think in the next three to five years, we’re going to have drugs that are going to actually be able to treat the underlying disease before it gets to a point where you may need more aggressive therapy. Currently, the only defined curative therapy that we have, when I say defined, meaning that we have multiple studies that have shown that that’s the case, is bone marrow transplant. I’m a bone marrow transplanter, I do treat some of my MPN patients with bone marrow transplant to get rid of the underlying…those underlying cells that are driving this disease. But that’s a very intense therapy and it has its own associated complications. But we are…will be having other drugs that potentially we would be able to offer that are not as intense as bone marrow transplant.

And those include immunotherapy, other drugs that can target the signals that drive these cells to divide and multiply. Also there are within the bone marrow for patients that have myelofibrosis, which is one of the MPNs, we will be able to target the environment that allows for these cells to persist and grow. And so it’s exciting where we’re going, and I think the questions that as a patient that I would ask are, because of the fact that we only have few FDA-approved therapies, are there any clinical trials that are able to target the underlying disease as opposed to just treating the symptoms? I think that’s very important for the patients to ask, especially in this space now.

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Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

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Are MPN Risks and Outcomes Impacted by Race or Ethnicity? from Patient Empowerment Network on Vimeo.

Are myeloproliferative neoplasm (MPN) risks and outcomes impacted by patient race or ethnicity? Expert Dr. Idoroenyi Amanam from City of Hope explains common MPN symptoms, potential risks and outcomes, and patient advice for optimal care.

[ACT]IVATION TIP:

“…if you have stroke, heart attack, blood clots, abnormal counts, please follow up with your doctor and ensure that you get referred to the appropriate specialist to help assist in managing your complications.”

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

Related Resources:

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

 What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

 MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

Transcript:

Lisa Hatfield:

Dr. Amanam, how does race impact clinical MPN outcomes or complications? And are certain populations more susceptible to getting MPNs?

Dr. Indoroenyi Amanam:

Yeah, it’s a great question. I think, because of the fact that symptoms are not as clearly related to MPNs as opposed to some other diseases. So the major presenting symptoms for MPNs are related to high blood pressure or some other vascular abnormality, including strokes or blood clots. It takes a little work to diagnose MPN patients, and half of them are asymptomatic. And if you actually look at diagnosis rates, they’re one to three cases per 100,000 per year. And so this is very rare, and I think that we don’t have enough data to really understand if some groups are at higher risk to develop MPNs than others.

We have looked at incidences of thrombotic events in patients who have MPNs, and we tried to see if there was a difference between racial groups, and we didn’t. We did see that if you’re younger, you do have a higher risk of thrombosis over time, but there was no difference for if you were white, Hispanic, or African American.

What we did find though, in a small single center study is that if you are non-white, there’s a higher risk of death over time. And I think we still need a lot of work to get a better understanding as why that’s the case. So far we don’t have a clear signal for that, but I do think, in the same…the story that we understand for healthcare in general, there are some differences in terms of access to care, the quality of care that’s delivered in, you can guess that possibly that’s one of the reasons why that that affects African Americans and Hispanics disproportionately in this setting as well.

So my activation tip for this question would be if you have stroke, heart attack, blood clots, abnormal counts, please follow up with your doctor and ensure that you get referred to the appropriate specialist to help assist in managing your complications. 

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Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

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Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

What do newly diagnosed myeloproliferative neoplasm (MPN) patients need to know? Expert Dr. Idoroenyi Amanam from City of Hope shares how he explains the condition, possible MPN complications, and proactive questions to ask your doctor.

[ACT]IVATION TIP:

“…if you see high platelet counts on a routine blood check or high white blood cell counts or high red blood cell counts, you should ask your doctor to delve a little bit deeper to try to get an answer as to why your counts are presenting in that fashion.”

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

Related Resources:

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

 What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

 Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?

Transcript:

Lisa Hatfield:

Dr. Amanam, how do you explain MPN to your newly diagnosed patients?

Dr. Indoroenyi Amanam:

Yes, MPN is a very rare disorder, and so most patients haven’t heard of MPNs in comparison to breast cancer or colon cancer, and so it’s…sometimes it appears very ambiguous as to what it actually is, and for patients, I generally tell them that there’s some…it’s a disorder that causes increased production of their red blood cells or their platelets, or the cells that help support the tissue in their bone marrow. And there’s some complications associated with that, namely blood clots, strokes, and heart attacks. And there’s also a small risk of these patients converting over into more aggressive blood cancers, namely acute leukemia. 

So my activation tip for this question is that, if you see high platelet counts on a routine blood check or high white blood cell counts or high red blood cell counts, you should ask your doctor to delve a little bit deeper to try to get an answer as to why your counts are presenting in that fashion. 

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[ACT]IVATED MPN Resource Guide en español

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Spanish Activated MPN Resource Guide

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[ACT]IVATED MPN Resource Guide

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Activated MPN Resource Guide

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