Kidney
Transplant and Minority populations and why they can't get evaluated
August 4, 2023
in Kidney
Something I have noticed is that as an active dialysis patient I see there are a lot of people at my clinic who are there getting dialysis on an emergency. They are able to get the care but aren't able to get a evaluated for kidney transplantation. Would love to have a dialogue about how we can make a change. Has anyone else seen this at their dialysis centers?
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This is a really interesting topic. I just finished a training course with The American Kidney Fund. This was one of the things discussed. The majority of CKD is from Diabetes and high blood pressure. If treated early the progression can be slowed down. However, it said there is a lack of healthcare and knowledge of nutritional food in minority communities. It also mentioned a distrust of healthcare professionals. So, by the time they actually make it to a doctor, it is already an emergency situation.
I am not sure what can help. More information to these communities? Better healthcare? Free healthcare? I am sure many people don't see a doctor or nutritionist because of cost-related reasons. Standard care really should be free for everyone in all communities.
Jeanmarie, Thanks for your insight and i agree with you 1000 percent. I think getting into these. communities is a starting point. To find out why there are these gaps in care. It’s important to educate to understanding of the communities it’s going to take time but it definitely should be addressed and also affordable
Transplant Patient
@calanfoundation has great insight on this topic! I've personally learned so much from him about the US system and its inequalities.
We definitely have inequalities here in Canada with minority groups, but very differently.
Thanks, @AliEm14 for the information! I will check it out.
Yes, @Berriosa1234, you are right. I read today about hospitals and clinics have been closing down because of a lack of staffing. That could also lead to disastrous ramifications for these communities.
Transplant Patient
This is so important - do we think it is due to the education at the dialysis centers or is there a backlog at the transplant centers?
@Karin I did some kidney training with the AKF. In the training, they said there are many barriers that they face. Many do not have close access to transplant hospitals. For continued care throughout their transplant. They do not have poor access to health insurance and money to continue with the care it takes to maintain a transplant. I also think there is a lack of education in dialysis centers about transplants. It can be attainable. The overall costs of transplants are actually less for insurance companies to cover than dialysis. So, it should be in all insurance companies best interest to make a transplant happen for everyone.
Transplant Patient
So agree with you @Jeanmarie - many barriers but hopefully some can be addressed through education and peer support
because I am kind of onery, and I legit want to ask... I think Ill ask when the nurse specialist calls me. The insurance company has had someone call me either for T1D related things, (which they are not specialists on), or on CKD & transplant, (which the nurse I spoke to couldn't answer any of my questions when I was first listed) I think I will ask about this. Why are dialysis patients not receiving the evaluations they need for transplant, does that stem from the insurance company, or does it stem from the doctors office?
Transplant Patient
Do let us know!!
I just took this course as well! I have been brainstorming this exact thing. And maybe hosting renal-friendly events for marginalized communities??? Trying to find clarity on this too.
I keep thinking about it every day. I keep thinking about how I can help.
Well, my nurse called me today... I asked why minority populations are not being evaluated for transplant and she was stunned. In her defense she was calling to follow up on my care and my labs, etc. which I did not need support with. She asked where that question was coming from, and I told her I was part of TranplantLyfe and we are having a discussion around it and those of us living with transplants are trying to always think of better ways to provide care for those of us in need. I asked again what she knew about minority populations not being evaluated and she told me I would have to call member services to have that discussion. I didn't call today, as I was actually really busy at work, but I think I will add it to my list of things to achieve. Maybe others might call and ask as well?
I have a couple living with me from Nepal. They are here on a legal visa but it expired and we have waited over a year (and counting) for an extension, but Immigration only tells us the application is pending and there is no idea on an estimated time for approval so they are in limbo now. The husband is on hemo dialysis and his wife is a registered nurse who does the dialysis at my home. He is in the process of getting listed on the transplant list at UCSF in San Francisco, California.
We received a letter saying that Medi-cal will cover the cost of his transplant but they need to have proof that he will be able to stay in America to get access to medication and treatment he needs post dialysis or he will not be able to get his transplant. We are in the process of getting the documents needed, but it is very frustrating. I spoke to one of the leading surgeons as I am advocating more and am invited to work alongside some of the people in this field. He told me there is a huge number of undocumented immigrants (who either came here without permission or their documents expired while they were here-most likely from failing health). He said California is one of the only states that Medi-Cal will cover the cost of transplant in most cases, but there needs to be proof of ability to continue to reside in America so that care can be given and access to medication. In most of these transplanted cases, the individual needs to have a living donor available for them to receive the transplant.