Black folks - contact your transplant progr... - Kidney Disease

Kidney Disease

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Black folks - contact your transplant program! Get your start date adjusted.

barbara55109 profile image
32 Replies

Black folks currently on the transplant waiting lists in the US can get their start date adjusted to the date their labs met the white criteria. Know any black folks with kidney disease, spread the word.

Black people, who have been discriminated against for decades in the US, based on a racist, unscientific belief that they have more muscle mass that white folks, are finally getting more accurate eGFR scores - based on their blood work,not on their perceived race. Race is a social construct, not a biological one. Interestingly, the muscle mass argument was also used by slavery promoters as a key reason why slavery wasn't wrong since black people have more muscle mass and are just animals, not real humans. They are bred for hard labor. Disgusting history, but true.

Institutional racism is real. It took years of lobbying to get this fixed for eGFR scores. But there are many other concrete examples of institutional racism in medicine and other areas.

usatoday.com/story/news/hea...

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barbara55109 profile image
barbara55109
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32 Replies
drmind profile image
drmind

Wow. Thank you for pointing thus out and alerting me to this wretched problem. I'm so busy with my CKD problems that I never knew why there was a different rating. I'll do my best to alert others.

Darlenia profile image
Darlenia

Really appreciate your alert! I will be sure to pass along the word whenever I have the chance. It hurts to see the barriers preventing certain people from getting great medical care and the opportunity for a better and longer life. We live in a very diverse WDC region. Thankfully, our transplant center seems to be very inclusive from staff to patients and their statistics reflect it. We are all humans!

Jimbo63 profile image
Jimbo63

As a white male when nhas more muscle than normal it also effects my creatinine levels. Stop trying to turn everything racists my God

jodaer profile image
jodaer in reply to Jimbo63

It is racist, it was done that way so they would have to wait longer to get a transplant.

Jimbo63 profile image
Jimbo63 in reply to jodaer

Of course everything is right.

Darlenia profile image
Darlenia in reply to Jimbo63

No, this ISN'T right. Calculating height, weight, and muscle mass is great in fine tuning lab data for everyone. But the labs used RACE! ALL blacks were considered as having a muscular body type and thereby downgrading their medical care and transplant opportunities. It's completely OBVIOUS that huge numbers of people across the world are short, skinny, etc.- this isn't just the case for whites. It's appalling that ALL blacks were rated LOWER for transplants and other medical care, no exceptions, based on a body stereotype! This is bad science, this is racist. As a white woman, I see the injustice. It's obvious.

barbara55109 profile image
barbara55109 in reply to Jimbo63

Institutional racism exists. The dual eGFR scores in the US is a perfect example of that. It is NOT based in science. Your disbelief doesn't change the facts.

Jimbo63 profile image
Jimbo63 in reply to barbara55109

We disagree .That's the great thing about America we are free to have are own options .God bless .Have a great day. Good luck on your health journey

Beachgirl32 profile image
Beachgirl32

you know I was wondering why some of those gfr caculator had a spot to check for or not black I guess this explain what there thinking is. I notice the one I used now doesn’t have it anymore but some still do like this one calculator.net/gfr-calculat...

This is interesting because I received an email about a week ago with a link attached to take a survey about the ability to get quality kidney care. It was from the NKF. I started taking the survey to see what it was about and it definitely looked like it was directed at blacks.

jodaer profile image
jodaer

They are doing a different test now. It's the cystatin C with Egfr. It's based on the same markers for everyone. It also shows damage better. Unfortunately, at least for me, it also dropped my egfr from 39 to 29.

Jimbo63 profile image
Jimbo63 in reply to jodaer

So here goes the Question which test are they going to go with for the transplant list? Hopefully the lower one

jodaer profile image
jodaer in reply to Jimbo63

According to my nephrologist the Cystatin C is the most accurate. I would guess it would be up to the transplant team.

Tarheel8082 profile image
Tarheel8082 in reply to jodaer

Do you know if the Cystatin C test has to be requested? I read an article about this today and am going to ask my brother's nephrologist. He has CKD stage 4 and is active on transplant list.

jodaer profile image
jodaer in reply to Tarheel8082

Not sure what you mean by requested. Yes, the doctor must request it. I would suggest that patients talk to their doctor about it so yes requested that way too.

Jimbo63 profile image
Jimbo63

Was told by my neph they go by the lowest .I hope that would be consistent everywhere

Darlenia profile image
Darlenia in reply to Jimbo63

Yes, the lower the number goes with eGFR, the earlier one can be placed on the transplant list. Now imagine getting an inflated lab result because they've tacked on additional points because of your skin color. Hope no one cooks up something against blue-eyed people, bald people, those that wear glasses, have a big nose, etc. Smh.

barbara55109 profile image
barbara55109 in reply to Darlenia

It is unfathomable to me how so many don't see the racism here. It is so blatant. Nothing subtle about it. Europe and other countries didn't have the two scores, only the US. It has taken years of lobbying to get rid of the two tier eGFR scores. Anti racist doctors finally succeed and the system gets changed, yet people without knowledge of the science somehow believe the two scores were fair and weren't racist. They think it's perfectly fine and not racist or wrong to delay treatment for millions of people because of the color of their skin. The two tier eGFR scores are the PERFECT illustration of institutional racism. It wasn't an individual Dr. that delayed treatment for folks because of his or her beliefs. The system was structured to delay treatment for an entire group of folks based on their perceived skin tone. Frankly I'm not surprised at the reaction of some to my post, I'm just so very sad and angry that discrimination has become more acceptable rather than less.

kellyscats1 profile image
kellyscats1 in reply to barbara55109

Oh my so sad you are..and angry.. why don't morbidly obese do the runway and become super models..If every job I did not get can I blame it on being a jew...Jews get Tay Sacks disease... sickle cell is usually a black issue.. sound like you really do not understand genetics..My japanese step children could not tolerate milk of alcohol/The two EGFR system was scientific based on statistics.. the important thing is to give treatment ..based on the needs not anything else..Just become informed..why did the USArelease a gun smuggler to save a female basketball player who went to Russia to make more money.... and stupidly took pot really???why do athletes get the perks and klutzes do no it is just beng human

Darlenia profile image
Darlenia in reply to kellyscats1

No...sadly, the two category eGFR system wasn't based on science. Thankfully, both the NKF and ASN recognized the problem and are fixing that situation. Since you mention Japanese stepchildren, they too will now receive more accurate labs and better treatment for themselves than in the past. See link for more information: kidney.org/news/nkf-and-asn...

renegade70 profile image
renegade70 in reply to barbara55109

i am not sure of the history behind these different egfr calculations. i do remember when i was first diagnosed 5 years ago i thought it was a little strange that there were 2 ways of calculating egfr. i passed it off based on what the experts were calling muscle mass differences. to be honest i never thought of the long term implications of this practice until i read your posts. i apologize for not taking more of an interest in this issue. i guess i was just so caught up in my own diagnoses which hit me luck a ton of bricks at the time and the ongoing anxiety it continues to cause with all of its ups and downs even today. i hope these new procedures help to lead to much more fairness in the process.

Jimbo63 profile image
Jimbo63

Again different opinions and we are all entitled to them. Dam do I cry racism when I take a civil service test and score number 3 on the test but they have to reach down on list to to find a black female or male that score number 80 and hire them over a white person. Obviously this isn't the forum to keep debating this and BLM. So again good luck to you.

barbara55109 profile image
barbara55109 in reply to Jimbo63

Keep letting your white sheets fly. Keep inventing false narratives.

Jimbo63 profile image
Jimbo63

God bless you

Darlenia profile image
Darlenia

I hear you, Barbara55109. I have been truly blessed with teaching and hiring people from around the world. And we spontaneously developed a deep love and appreciation for each other. Open hearts, open minds. And, yes, we all alike, possessing the same precious organs including hearts, livers, kidneys, and more. Someday, probably not in my lifetime, I truly hope everyone will see each other as fellow human beings - journeying down the road of life tasked with helping each other over the rocks and around the pitfalls. May God help those who focus and exploit minor differences for their own gain, because what goes around may come around. (Karma). Keep the faith, Barbara55109. Change is coming. NKF is on your side, many others are too. Hugs!

FThomp profile image
FThomp

if race is a social construct and not biological why are certain races prone to specific diseases and have distinct biological features? That differ amongst the varied races?

With that being said, having a set standard amongst gfr regardless of perceived muscle mass is good.

Darlenia profile image
Darlenia in reply to FThomp

Hopefully this is a red herring? Race is NOT a disease in and of itself. Only testing can reveal across the board whether or not someone has a disease or condition. If we are so radically different, we wouldn't be giving a white person a kidney from a black or Asian donor, right? Yet we do. So we are far more the same, than different. It's time to stress the "sameness", not the "differences". Science rules...not social constructs or biological appearance. For those that believe the latter, then I fervently hope they pass on all donor kidneys that don't fit into their own personal narrative and go to those who truly appreciate and value the person made that priceless gift possible.

FThomp profile image
FThomp in reply to Darlenia

No one said race is a disease but your race does in fact determine predispositions to certain ones in cases. So, just because we all have the same organs does not mean that races are not different, that is silly. Also, to your point, there are difficulties between interracial organ transplant and blood donations. See here. diversehealthhub.org/progra...

With all that being said, we all would take a kidney from anyone who is willing no matter what. But to ignore reality that we are all different is silly. Race is not just skin color. It’s just semantics on this topic but it’s nice to debate bc I view it as such a misunderstood topic of our time.

Darlenia profile image
Darlenia in reply to FThomp

Of course every race has predispositions to certain health issues, no one has said that this doesn't happen. The article you submitted addresses that and offers suggestions how to achieve equitable healthcare among minority groups facing some of these health concerns. But does the white population also have predispositions to certain diseases? Of course it does. One well known predisposition is the high percentage of skin cancers of various kind, including deadly melanoma in that race, far surpassing all the other races. And this places whites, who are transplanted and on immunosuppressants, at exceptionally high risk. (A gentleman with a transplant on this forum has reported on his multiple disfiguring surgeries for his fast moving skin cancers.) So, would you "rate" the entire Caucasian population as having this predisposition and thereby making procurement of a transplant far more difficult for them? That's what happened to the black population - they were ALL assumed to have a large muscle mass including the slender little lady sitting at a desk shuffling papers, denying her and countless others good medical care and transplants. Is that really science? Or was that ignorance? Or was that business? What are the moral, ethical, and professional ramifications here? Are there lessons to be learned? (The NKF and the ASN believe changes must be made.) When the white population in the US becomes a minority group around 2045, how do you, a white person, want the powers above you to evaluate you then? That's the multi-billion dollar, life or death, question.

AENEASavc profile image
AENEASavc

Thank you for reminding us. I am careful as a White woman and try to understand the systemic problems that have affected Black people for so long. We must never forget the Tuskegee experiment and everyone should read the story of Henrietta Lacks. We White people can do better.

jodaer profile image
jodaer in reply to AENEASavc

Well said, thank you

Blackknight1989 profile image
Blackknight1989

FYI: Race no longer plays a role in transplantation

Link:

journals.lww.com/transplant...

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