Next Wednesday is my hospital appointment with the nephrologist — the medical specialist for kidney conditions. The last appointment was before the pandemic.
I’m dreading it.
I keep telling myself that this is what I’ve been waiting for since the appointment was canceled a year ago at the last minute, that it was me who rang the NHS to ensure it’d be rescheduled.
I want to know how well my kidneys are working.
And I don’t want to.
The truth is that I know what I want. I want to go and that the specialist tells me “Patricia, all the analyses look good. The tiny worsening we saw more than 3 years ago was an outlier. Of course, we should continue to monitor the kidney function but it looks stable. See you in a year”.
But the reality is that I won’t know the full answer on Wednesday. During the appointment, they’ll take samples but not all results will be available right away. I’ll have to wait until the next appointment — maybe in 6 months or 1 year — to know…
Many years ago, a family member within my direct line died from kidney disease. We saw it as a random occurrence — the person had other serious health conditions.
That was until another member in my direct bloodline was diagnosed with kidney disease upon a routine ultrasound procedure more than a decade ago. This family member urged me to ask my doctors to check my kidneys.
I asked my GP, but she told me that there was no reason to look into it until I began to feel unwell. So reassuring.
Time forward to about 8 years ago when during an ultrasound procedure the technician detected cysts in my kidneys and liver. She didn’t say anything but within 24 hours I received a call from my GP asking me questions about my family history and told me he’d referred me to a nephrologist.
An MRI confirmed the cysts in my kidneys and then my check-ins started. First every 6 months and then every 12. There are a lot of unknowns about how cysts progress towards kidney failure. We do know that we don’t want the cysts to grow as the sections occupied by them are basically useless. And kidneys don’t regenerate like the liver.
So basically, it’s a “proxy” monitoring exercise. Typically, I meet with the doctor, they measure my blood pressure — very important since there is a correlation between blood pressure and cyst growth — and other markers in my urine and blood. I’ve been told that if those trends appear to go “the wrong direction” then I’ll have another MRI, medication, and we’ll take it from there.
Going to this wing of the hospital it’s like nothing I’ve experienced before in the healthcare system in the UK. They have the kindest staff. I’ve been in other sections of the hospital and the staff it’s nice but in nephrology, they are so patient and caring.
And you can understand why.
People arrive in wheelchairs and with oxygen masks covering their mouths. Some can barely walk. And in case we forget why are we there, we have posters exhorting visitors to donate kidneys.
What’s not to like?
I’m very protective of my direct reports’ time. Through my years working in customer service, I’ve realised that one of the reasons why most people in my team work in support is because they like to help people. All people.
That means not only paying customers but also colleagues. The new salesperson that doesn’t understand the differences between our licensing options. The pre-sales that needs help preparing the proof of concept. The services specialist that cannot install our software on their machine. The R&D person that wants to check a fix for a bug. The product manager that wants feedback on a new capability. And the list goes on… And curiously, all of them “just need 5 minutes”.
When you have people working for you that are so dedicated, my job is not about pushing them to work but rather helping them prioritise the tasks and play the bad cop as needed.
And it appears to be working. Although some appear to not appreciate it.
On Friday, I received an email request for my team’s time. The person asked me for one person in my team to help with an internal activity and told me to read an attached long email trail for details. Which I dutifully did.
Within the email body, this same person had written
“Then I’ll ask Patricia, which will be like asking her to donate a kidney.”
The sentence felt like a blow to my solar plexus and it travelled to my brain like a river of gasoline in flames. And stayed there for a long while.
I was upset because it was highly unprofessional. But I won’t lie, I’m pretty sure that it wouldn’t have had the same impact if the person referenced another part of my body — my lungs, my bone marrow, my cornea.
I prefaced my reply to the email trail — which already had included a third colleague — the following
Thanks for sharing this email trail. I especially appreciate the reference
Then I’ll ask Patricia, which will be like asking her to donate a kidney.
My family carries a genetic mutation that may cause kidney disease and members of our family have died without the benefit of a donated kidney. As indeed I carry such a mutation, I cannot donate my kidneys.
I waited all afternoon for an apology that never came.
The other person copied in the email trail didn’t mention it either and continued the email exchange without any reference to the bully’s remarks about kidney donations or my reply to it.
How the whiteness of my kidneys protects me from AI
When my brain goes into “Why me?” or “Would have been better not to know?” I tell myself that there are two pieces of good news
First, so far, my kidney function appears to be “normal” within some variations. Moreover, the other direct family member that has the same condition is in good health upon controlling their blood pressure with daily medication. So far, my blood pressure has always been perfect.
The other good news? I’m not Black.
A couple of years ago, I learned about the race-correction applied to algorithms deciding on kidney transplants in the US.
What’s the race-correction? In simple terms, it’s the calculating of a result that takes into account race. It is commonly used in medical algorithms in several specialties, including cardiology, nephrology, urology, obstetrics, endocrinology, oncology, and respiratory medicine.
In practical terms, that means that people identified — by themselves or their doctors — as “Black” receive different medical treatments, typically underestimating their pain or their need for medical attention. And whilst there is no scientific base for such a correction, it has negatively impacted African Americans waiting for a kidney donor.
In this 14-minute TED MED talk, social justice advocate and law scholar Dorothy Roberts explains how race-based medicine is bad medicine. Even today, many doctors still use race as a medical shortcut; they make important medical decisions based on a patient’s skin colour instead of medical observation and measurement.
Going back to kidneys, because of the race-correction, Black patients that have the same kidney function have been ranked with lower priority in the transplant list.
And it’s not only as receivers of a kidney, but as donors. As per Wikipedia
“The Kidney Donor Risk Index (KDRI), the United States’ official kidney allocation index, was developed in 2014. Race is among the factors used to predict the success of a kidney graft, with Black donors’ kidneys often thought to perform worse than kidneys from other donors. Being Black results in a demarcation as a less preferable donor by the KDRI. This creates a snowball effect, with fewer kidneys from Black donors in the system. In turn, Black people in need of kidney donations are affected. Black people already face longer wait times than people of other races in need of kidney transplants. Black people are more likely to receive a kidney transplant from a Black donor, according to recent studies. This lack of resources can exacerbate the already lengthy wait times.”
There have been recent studies looking into the impact of this race-correction on kidney transplantation and recalculating the KDRI with and without the race-correction. They reassure us that removing the correction doesn’t have a “substantial overall impact on the transplantation system” because the number of Black donors that moved into the category of higher risk of organ nonuse was countered by the number of non-Black donors moving to that category as well as the KDPI represents the percentiles relative to all other donors.
This is how I see this statistical result: We’re using data to talk ourselves out of the inequities we perpetuate.
First, if you’re Black person in need of a kidney transplant or you want to donate yours, how this “overall impact” assessment is expected to reassure you as individual human being?
Second, the race-correction not only lacks biological meaning but “perpetuates race as a biological variable, rather than a social construct, contributing to inequities and healthcare disparities”
And what about the UK?
On 25th August 2021, the National Institute of Health and Care Excellence (NICE) released a chronic kidney disease (CKD) guideline update that removed the recommendation to adjust for Black ethnicity when estimating how well a patient’s kidneys are working; a change that will prevent overestimation of kidney function in people from Black ethnic groups and enable early treatment for chronic kidney disease (CKD).
Let’s pause on the date. August 2021. That is, less than 2 years ago.
And whilst we may find relief in this change. The game is not over.
It’s not over for all those patients whose kidney condition worsened unnecessarily because they were treated as if their kidneys were working better than they were actually performing.
It’s not over for the families that have lost relatives to kidney disease because they didn’t receive the transplant that they deserved.
And finally, it’ll never be over for Black people because the data we have is biased against Black patients and donors. That data will live forever in the form of databases, algorithms, and predictive tools.
This post has been in the making for about 2 years since I discovered the race-correction. I think I struggled to write it because I didn’t want it to be another article about bias and AI that we forget.
They say that our brains remember stories better than other kinds of information.
I hope that by disclosing my chronic kidney disease condition you’ll remember the inequities in healthcare and how pervasive they are. Not only about kidneys, the race-correction is used in other healthcare areas. For example, in the Vaginal Birth After Cesarean (VBAC) calculator, “the developers found that Black and Hispanic women were less likely to have a successful VBAC than White women, so they included correctors that reduce the projected likelihood of success for women classified as Black or Hispanic”.
As this excellent open access article in The Lancet clearly showcases, we urgently need to advocate for anti-racist medicine. Now that you know,don’t allow yourself to unlearn it.
As for the bully, through writing this article over the weekend and talking to my coach I have reached a decision on what to do next.
I won’t remain a bystander.
PS. You want more for your life…
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