What Health Disparities Exist for Patients with Renal Medullary Carcinoma?

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?

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.

Are Sickle Cell Disease Patients More Susceptible to Renal Medullary Carcinoma?

This video was originally published by Diverse Health Hub here.

Are Sickle Cell Disease Patients More Susceptible to Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

Are sickle cell disease patients more at risk for developing renal medullary carcinoma? In this highly informative interview, Dr. Pavlos Msaouel, a respected clinician at The University of MD Anderson Cancer Center specializing in treating RMC, shares why sickle cell disease patients and those with sickle cell trait may be more at risk for developing RMC.


Transcript:

Rebecca Law: 

Dr. Msaouel, are sickle cell disease patients more susceptible to renal medullary carcinoma?

Dr. Pavlos Msaouel:

So that is a wonderful question. So, it is not just individuals with sickle cell disease that are more susceptible to developing RMC, it also individuals with sickle cell trait. And there are many more individuals who have the sickle cell trait than those with disease.

Dr. Pavlos Msaouel:
About for every one individual with sickle cell disease there will be about 40 — that’s 4-0 — individuals with sickle cell trait. And many of them that carry the sickle cell trait will not know that they carry the sickle cell trait. So having either sickle cell disease or sickle cell trait increases substantially the risk for developing RMC. And why does that happen? It happens because when you carry either the sickle cell trait or sickle cell disease, your red blood cells — these are the cells in the blood that carry oxygen — normally, they will have this round shape, but if you have the sickle cell disease that shape is changed, it’s like a sickle, it changed to the form of a sickle.

Dr. Pavlos Msaouel:
If you have the sickle cell disease that will happen everywhere in your body. If you have the sickle cell trait, then your red blood cells will look normal in most areas of your body. However, there is one area in the kidney called the medulla of the kidney where the cells will look sickles whether you have sickle cell trait or sickle cell disease. And to our understanding, having these cells that look like sickles in the medulla damages the medulla in a way that increases the risk for developing this cancer. So RMC stands for renal medullary carcinoma and the medullary part in the middle of the name means that it comes from the medulla.

What is Renal Medullary Carcinoma?

This video was originally published by Diverse Health Hub here.

What is Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

What is renal medullary carcinoma (RMC)? Dr. Pavlos Msaouel, a medical oncologist treating rare forms of renal cell and urothelial carcinomas, gives an overview of RMC, a rare, deadly type of kidney cancer predominantly afflicting young adults of African decent with sickle cell disease. Dr. Msaouel shares what symptoms have often led to diagnosis and points out that 75% of all RMC cases originate in the right kidney.


Transcript:

Rebecca Law:

Dr. Msaouel, what is renal medullary carcinoma and how is it diagnosed?

Pavlos Msaouel, MD, PhD:
RMC is the acronym for a kidney cancer named Renal Medullary Carcinoma. Renal Medullary Carcinoma or RMC is one of the deadliest kidney cancers, and it predominantly afflicts young people mainly of African descent that carry the sickle cell trait or sickle cell disease.

Pavlos Msaouel, MD, PhD:
It is often diagnosed after patients start developing symptoms, and those symptoms can be blood in the urine — the medical term is hematuria — or they may have pain in their flanks on their side where the kidneys would be, on the right side or on the left side.

Pavlos Msaouel, MD, PhD:
Interestingly RMC mainly happens on the right kidney, so about 75% of all RMC cases will happen in the right kidney. And unfortunately, in the vast majority of cases when it does present, it will be what we call stage 4 — meaning metastatic — meaning it will have spread to other organs.

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources: