What Do Renal Medullary Carcinoma Patients Have in Common?
What Do Renal Medullary Carcinoma Patients Have in Common? from Patient Empowerment Network on Vimeo.
Renal medullary carcinoma (RMC) patients share some common traits, but what are they? Expert Dr. Nizar Tannir explains common traits seen in RMC patients and how families and patient advocates can work toward improved care for all RMC patients.
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.
“…work with your congressmen and congresswomen, work with patient advocacy programs, raise awareness. Let’s get everybody the healthcare insurance that they deserve, like members of Congress so that nobody is turned away from going to the best facility that can help them.”
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A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma
What do patients living with renal medullary carcinoma have in common?
Patients living with renal medullary carcinoma have supportive families in my 22 years at MD Anderson treating patients with kidney cancer. And since we were involved with establishing an RMC program for research education and clinical trials treatment for patient with RMC, what I have noticed socially is these individuals have wonderful, wonderful family support. I can’t think of one patient with RMC and this has nothing to do to medicine right now, or about medical facts. I’m talking about the social fabric African Americans, because these are the people, these are the subjects who have RMC. The 95 percent of patients with RMC are African Americans in this country. People of the Black race. I am so impressed with their family support, not one individual came to me with…if it’s a teenager or even a young person without their mother with them, I am so impressed with that.
So they’re not alone that’s really what impressed me, what’s common about these RMC, patients with RMC is the love and the family support that these individuals, their mothers go a long way out of their way, they make it their mission to help their child and that child could be 18 or 28 or 30, and the mother is there helping them. They come from everywhere seeking the best for their child and that applies to siblings as well.
And, Cora, you’ve been, again, the support for Herman along his journey, I can’t think of any sibling who has done what you have done for Herman. So I can’t escape, but say, Black people have families who love them, they’re not alone and they support them, they’re able to get them to the top of the mountain, to the top of the mountain to the top of mountain to get them through the desert and the marsh and the oceans to get them to be cured if there is a cure that can be achieved.
And if not, they want to make sure they give them the best chance to survive. So that’s what I have seen in patients that’s common to patients with RMC. Unfortunately, there is another side of that story that is common to patients with RMC because they are young and many of them are either students or they’re working at different jobs, they don’t have…many of them do not have health insurance unless they serve in the military.
And that’s what’s been frustrating, we can discuss this later that’s been frustrating to see that young individuals with RMC want to come to MD Anderson, want to go to the moon if they can get the cure there, but they don’t have the health insurance that can give them access to the best place. And in RMC, it is MD Anderson. So I hope this will change. My activation tip is work with your congressmen and congresswomen, work with patient advocacy programs, raise awareness. Let’s get everybody the healthcare insurance that they deserve, like members of Congress so that nobody is turned away from going to the best facility that can help them. I hope before I retire that I will see this achieved. Because that’s really, I think if the number one on my list of things to do is this…is have equal healthcare access to everybody with an RMC diagnosis, so that they get the best care they deserve.
This is about, you’re talking about diversity, equity, inclusion. This is at the core, at the heart of what equity is. How can we be equal in the society if we don’t provide equal healthcare access to all our citizens, especially the young, especially the young the vulnerable, these people serve their country. They deserve to have the best healthcare or equal healthcare provision and like members of Congress, like the rest of us.