What Are Renal Medullary Carcinoma Noted Disparities?

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What Are Renal Medullary Carcinoma Noted Disparities? from Patient Empowerment Network on Vimeo.

What are the disparities seen in renal medullary carcinoma? Expert Dr. Nizar Tannir explains how grassroots movements are so important in rare diseases like renal medullary carcinoma and his hope for equitable policy change. 

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen and I hope it will happen in the near future.”

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Transcript:

Cora:

Dr. Tannir, what are the noted disparities seen in RMC and what are some of the actions being taken?

Dr. Tannir:  

RMC affects predominantly African Americans in this country. Unfortunately when you say African American and healthcare, in the same sentence, there it is, there is healthcare disparity. Healthcare disparity is a fact we live in, is something I face all the time in our citizens who are minorities, people of color in this country, whether they’re African American or Hispanic or other citizens.

Unfortunately, they don’t have the same healthcare access to like other patients, like other individuals. So that right there is a healthcare disparity. We need to remove those barriers and that’s the only way we’re going to address healthcare disparities, is by making it not disparity anymore. And how you do that, you give healthcare access, equal healthcare access to those individuals, because those individuals want to live, people want to live, people want to take care of themself, of their bodies, their health, they want to live longer, they want to be cured if they have cancer. But we have to provide them the access to the best, be it the treatments that are available right now even clinical trials, even clinical trials of drugs that may not be FDA-approved, they should have access to those as well, they’re equal citizens in this country.

They have to have access. The same way I have access, if I got cancer, I have access to clinical trials at MD Anderson. A patient with RMC should have that same equal healthcare access. I hope that this, it takes a village, as they say, it takes a village for all of us to work together, it’s not going to happen overnight this is going to be grassroots like you, Cora, are doing, grassroots movement from the ground up. Healthcare policies will change only when all the citizens in this country realize and believe that healthcare is a right, it’s not a privilege, it is a right, it is a right. The most important right is health, life high, this is important so the only way we can achieve that is when we believe as a country, as citizens of this country, that we’re all equal, God has created us equal. We have to have access to healthcare. My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen, and I hope it will happen in the near future. 

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What Health Disparities Exist for Patients with Renal Medullary Carcinoma?

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This video was originally published by Diverse Health Hub here.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

Dr. Pavlos Msaouel broaches the disparities that exist for patients with Renal Medullary Carcinoma (RMC). He contends that RMC afflicts a very vulnerable population, that is young African Americans. The disparity exists due to the young age of these patients who aren’t part of a work force with health insurance. Secondarily, this has caused RMC to be underdiagnosed, preventing optimal treatment for patients.

On a global scale, Nigerians face the same disparity, as traits of RMC affect a large number of the population. There are virtually zero reports of its existence and patients again are underdiagnosed. Dr. Msaouel argues we need to research questions that answer where and how RMC affects particular populations in order to equalize the disparity of underdiagnosed patients. Currently the US is gathering data and creating RMC patient communities and advocates. Dr. Msaouel stresses this research is needed on a global scale as well.

Transcript:

Rebecca Law:

Dr. Msaouel, what disparities exist for patients with Renal Medullary Carcinoma?

Dr. Pavlos Msaouel:

Now that is a wonderful and very important question because there are certainly disparities in caring for individuals with RMC (Renal Medullary Carcinoma). Think about it these are people who are young and young people in general — you know they do not have necessarily for example, in the U.S. that kind of insurance when they’re in their twenties or teenagers that they will have later in life or even you know are not part of the work force in that sense. But it’s even more challenging if you think that the vast majority of individuals with RMC are young African Americans. So, this is a disease that particularly afflicts a very vulnerable population, so there is no doubt that health disparities afflict individuals with RMC and this may be part of the reason why for many years this was an underdiagnosed disease.

Dr. Pavlos Msaouel:

We are finding out now that this cancer is more common than we originally thought. It’s still a rare cancer, there is no doubt about that, but it is more common than we originally thought to the point that nowadays in our clinics we see about 1 new case, 1 new patient with RMC per month. So that’s certainly more common than the about 100 cases that have been published thus far in the literature—there are many more that we do not know of. And think about it also in a different way, from a more global perspective. So, there is about let’s say 3 million individuals in the U.S. who carry the sickle cell trait. Most would be African Americans, other ones will be Caucasians so there are many different people who can have the sickle cell trait, but it’s mainly African Americans, but there are 300 million people in the world that carry the sickle cell trait — mainly in Africa.

Dr. Pavlos Msaouel: 

So, let’s take for example, Nigeria – there are many people in Nigeria who have the sickle cell trait yet how may reports are there about the existence of this cancer in these countries, essentially almost 0 and so that is a disparity in itself. This is a cancer that can be difficult to diagnose especially if you do not know about it, if you’ve never heard of it, but even if you do – even if a physician or healthcare personnel knows about this cancer it still needs specific tests to be done and many of them cannot be done in most countries so that’s also a disparity.

Dr. Pavlos Msaouel:

So the mere fact that this cancer cannot be diagnosed in many countries in the world is a disparity in itself, so if we were able to correct this and understand more about where it happens and how often it happens we know much more nowadays thankfully through the work of many people in the U.S. now that are becoming passionate about helping individuals with RMC (Renal Medullary Carcinoma) so we are gathering a lot of data, a lot of information, we have patient communities in the U.S., we have patient advocates that help immensely in the U.S, but this is very likely a global phenomenon, so that’s a disparity that will need to be addressed.

How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients?

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This video was originally published by Diverse Health Hub here.

How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients? from Diverse Health Hub on Vimeo.

Dr. Msaouel tackles the question of how providers can combat inequities in the care of Renal Medullary Carcinoma (RMC) patients. He states that patients go undiagnosed because providers don’t know about the disease. Dr. Msaouel urges that healthcare providers raise awareness about RMC and in doing so be diligent about screening patients with particular symptoms.

According to Dr. Msaouel, young African Americans possessing sickle cell traits and blood in the urine must be taken seriously and screened with ultrasound to check for suspicious kidney masses. They must be thoroughly checked with proper diagnosis. Dr. Msaouel says providers in the US know more about RMC but efforts must be increased to raise optimal awareness not only here in the states but around the world.

Transcript:

Rebecca Law: Dr. Msaouel, what can providers do to combat inequities in the care of Renal Medullary Carcinoma patients?

Dr. Pavlos Msaouel: So that’s a wonderful question. One way to be able to address this is to help as a provider raise awareness. So, one of the things that is happening is that very often in these cases, patients with RMC are undiagnosed because people don’t know about it. So, if healthcare providers know about this then they can think about it, and then they can start having it in mind. And so, if a young individual — especially if it’s a young African American who has the sickle cell trait — comes with blood in the urine in the ER you have to take it seriously.

Dr. Pavlos Msaouel: You have to do potentially an ultrasound of the kidney and if you do an ultrasound of the kidneys and you find something that’s suspicious like a mass, you have to take that very seriously. This is thankfully happening more and more often in the United States, but not necessarily always and it needs to happen more often around the world as well. So, that’s a simple step that we can do to address the inequity for this cancer.