Tag Archive for: health outcomes

Have MPN Disparities Been Addressed by Institutions?

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.


“…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 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?

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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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How Does Aggressive Prostate Cancer Impact Various Populations?

How Does Aggressive Prostate Cancer Impact Various Populations? from Patient Empowerment Network on Vimeo.

How is prostate cancer impact different for some populations? Watch as expert Dr. Yaw Nyame shares how prostate cancer incidence and death rates vary for some groups, potential risk factors, screening recommendations, and actions that can be taken to improve health outcomes.

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Sherea Cary: 

What differences do you see in terms of aggressiveness for cancers in different…various populations? 

Dr. Nyame: 

This is an area of research that for me, is trying to understand why certain populations have more aggressive or worse outcomes when it comes to prostate cancer. 

The most obvious example of this here in the United States is for Black men. Black men are more likely to be diagnosed with prostate cancer each year, so about 70 percent more likely to be diagnosed, and they are twice as likely to die from prostate cancer as men of other races in the United States. If you look at what the natural history of prostate cancer and Black men looks like, meaning if you were to chart from diagnosis through the course of the disease, does it look different for Black men? The answer is yes, it appears of Black men get prostate cancer when they’re younger, and there’s data to suggest that perhaps Black men get more aggressive prostate cancer because they’re more likely to progress from the localized or treatable disease to stage IV aggressive disease that can’t be treated. We don’t understand what the drivers of that are for a long time, the medical community has suggested that it’s all biology, and by that may be an inherited biology, but we know that health disparities really carry a significant social contribution. And, in fact, I like to say that social and environmental factors inform biology too. And so, if we see something biologic that explains these trends, it doesn’t mean that that’s the way they were born, it might mean that you put someone in a community that lives near a highway with high pollution or does not have access to clean water or lives in a state of high stress or over security. We don’t know what the biologic manifestations of those types of experiences are, but that perhaps is the reason why we see our communities of color, especially our Black men, are experiencing a higher burden of prostate cancer. 

Sherea Cary: 

So, is there a push to have African American men tested earlier with the PSA test, since it appears that they may get prostate cancer earlier?  

Dr. Nyame: 

The U.S. Preventative Services Task Force, which makes a recommendation to the medical community about prostate cancer screening states that they cannot make a specific recommendation about screening in Black men and other high-risk populations like men with a strong family history of prostate cancer, because those men were not included in the clinical trials that have looked at the efficacy of PSA testing for screening. 

Unfortunately, Black men make up 3 percent or less of participants in the two screening trials that have informed whether there’s a benefit to PSA testing, which there has been shown to be a 20 percent decrease in dying from prostate cancer if you get screened. We recently took data from the screening trials and superimposed them on real-world data from our surveillance apparatus for cancer in the United States, and what we found was that if you did lower the age of screening in Black men from age 55 to 45, that you did decrease the risk of dying from prostate cancer significantly. It is our hope that this type of research will encourage the U.S. Preventative Services Task Force and other medical societies to reconsider their screening recommendation for Black men, ultimately, whatever, if there is a recommendation made to screen at younger ages, I think we need to be conscientious and evaluate what the impact is on the ground, so that if there is a time where we need to reverse a recommendation like that because it’s potentially harmful, that we consider that. But I feel strongly sitting here today that we do need to advocate for earlier screening and Black men. 

How Can We Address Noted Disparities in Multiple Myeloma?

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

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

See More From the Myeloma TelemEDucation Empowerment Resource Center

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



Dr. Joseph Mikhael:

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

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

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


Lamar’s Story

Lamar’s Story | Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma patient and active-duty U.S. Air Force member Lamar Valentina shares important pieces of his RMC journey. Watch as he discusses the symptoms that led to his RMC diagnosis, his treatment journey, things he found helpful for support, and his hopes for how to educate others about sickle cell trait and RMC for better health outcomes.


Lamar Valentina:

I’m Lamar Valentina, I was diagnosed September 25th, 2019. What prompted me to be checked was I had a lump that was literally right here, it kind of protruded out, and I had some really bad abdominal pain as well as flank pain on my left side, it was really unbearable, so those three things combined — I got really concerned and decided to go to the hospital.

I’m in the military, active-duty military, so working out and kind of taking breaks, it’s common for me to get lower back pain, but it was definitely a different lower back pain, and then with the added lump that was between here, it was literally right here. And this kind of has actually gone down, so that’s a sign from my oncologist that says that the cancer is shrinking based off treatment. So diagnosed on September 25th, 2019. I started chemotherapy on October 11th of 2019. There were a few options. I had some friends that work in cancer centers, and my ex-wife actually works with foundation on medicine, and they had connections at Dana Farber in Boston, and that’s where she lives with my son who’s 12, who will be 13 in March. Starting chemo on October 11th, the first cycle that I was on was Carboplatin-Taxol, I did that for about six cycles, and there was shrinkage, but due to COVID, we took a break to give my body a break, ’cause chemotherapy did a big number on my body, I lost a lot of weight, obviously my hair and my eyebrows, my hair is still gone, my eyebrows are still gone, and it just…

With my body adjusting to chemotherapy was pretty rough, but I handled it well, so actually that break… During that time, I said about three months, two months through my break, I want to say we did that until about February, and then we started back up in April, so about three months and that was more so because of COVID and creating delays in between. But once we got a scan and we saw that there was a little bit of growth, it wasn’t alarming growth, but there was some growth, but it still hadn’t gone to where it was when I first was diagnosed, so that was the good thing that it wasn’t as aggressive as it’s known to be.

Throughout this whole ordeal, it’s been family, friends. Throughout the beginning, you know you have a lot more support and it kind of balances out, which is fine, ’cause I’m a pretty introverted person anyway, but I have a great immediate circle that’s there to share positive affirmations and positive vibes and positive energy. And that’s honestly what helps me through that, along with music and staying productive, I’m still actively in school and still in the Air Force, active duty, I make 14 years, and next month in March, and my hope is that through this campaign and through everything else, we just continue to raise as much awareness as possible. I was always told growing up that sickle cell trait really was nothing to worry about, unless if I had a child with someone else that had the sickle cell trait, and then our child would be fully diagnosed with sickle cell, so I’ve never really even thought to be concerned about having a trait of sickle cell, so my hope is that through this campaign and through other everything else, we’re able to raise as much awareness as possible to grab the right people’s attention that are going to continue to put forth the proper research to help save more lives and of course, to live my life as long as possible, for as long as I’m here, and if I can hopefully inspire and motivate others along that through my hardships, hopefully that’ll help them to create a survival guide for their own lives moving forward. Whatever it is they may go through, but especially with RMC.

For anyone who’s recently diagnosed, my best advice is lean on your support team, your support circle, it’s going to be very, very hard, don’t be so quick to Google everything, but do try to make sure that you’re as informed as possible about your diagnosis about RMC, and then finding a community that fits. That’s exactly what I did as soon as I was diagnosed, of course. I did what I’m telling people not to do by Googling and everything, because once you Google everything, you’re going to get everything negative under the sun, but it is very important to be informed properly based off what you’re going to be going through, you’re down for the moment, but you’re not out, you just got a dig deep and make sure the people around you are sharing that positive energy and those positive vibes to continue to provide you with the motivation and then at a strength and the courage to fight, and it’s also okay to deal with the emotions that you may be going through. Some people feel that, “Oh, you got to be strong.” Being strong doesn’t mean not crying or not feeling sad, you’re going to feel every emotion imaginable once you are diagnosed.

So, it’s okay, the best thing is to do is to process that and hopefully have an outlet or somebody that you can share that with, and you can kind of unload it ’cause you don’t want to compartmentalize those feelings and those emotions because it doesn’t go anywhere, it just kind of festers, it’s like sweeping it under the rug, it’s going to pile up and just really, really become a lot.

So really, really lean on your support system, and if you don’t have a support system, I guarantee if you research it like I did. Reaching out to Cora Connor has been amazing, ’cause they put me in touch with other people that were going through what I’m going through, and talking with people who are going through, who can relate to what you’re going through is way different than talking to people who don’t really have an idea of what it is that you’re going through, not saying that they can’t help and they can’t be there for you, but it’s just, it’s a different type of comfort that comes from knowing someone that is literally sharing the same symptoms or going through the same treatment, or may have gone through the same treatment or the same procedures that you may be up against, and you can ask some questions and get a realistic answer from somebody with experience as opposed to getting assumptions or things from other people, but I would say stay positive. Stay as positive as possible. Don’t give up hope. Don’t give up hope.

It doesn’t have to be a significant other for other people that are going through if you’re single, it could just be your best friend, it could be a friend. Motivation and inspiration comes from the most strangest of places, and I’ll be witnessed. I’ll be the first to admit to that on the top of having someone, but there’s times when you often feel alone and you kind of think about how this impacts and affects them, those closest to you as well. So, I think taking that into consideration is something that people who are really diagnosed as well to guess we are the center of it, were the ones who actually are going through it, but the people that love and care about you, they’re going through it in a way as well too, they’re definitely affected and impacted by this too.