It’s our 17th kidney transplant anniversary y’all! (Check out my latest video for “Real Kidney Talk with The People’s Nephrologist” where I talk about being a kidney donor.)
If it’s not obvious from our picture, my husband and I are both Black. And don’t let the fair skin fool you: We are unapologetically and proudly Blackity-Black.
The medical world, however, will have you thinking being Black is in and of itself a risk factor for disease. I actually heard somebody say this bullshit out loud on a UCSF panel about the use of race in medicine (fast forward to 39:05 to hear it for yourself and how nobody on the panel challenged the statement). Like inherently, genetically at our core, and that our worse health outcomes across the board have everything to do with this assertion and not the every kind of racism we’ve been subjected to since the beginning of Whiteness.
Mind you, the social sciences have all affirmed that race is a social construct—some shit White folks made up to justify all the raping, pillaging, and enslaving. It’s just significant group of physicians and physician researchers who can’t accept that fact. Them and the KKK. (Yeah, I said it. Fight me.)
The false insistence that race has biological meaning, affects pretty much everything we do in medicine—from how we make clinical decisions in the day-to-day to how we approach research. For the last few years, I’ve been a leading voice in the battle to get us to stop using “Black race correction” in how we estimate kidney function—a two-decade long practice that has without a doubt negatively affected Black people’s ability to get specialty kidney care and access to kidney transplants. The evidence supporting this practice is at least a half-step below shitty, and yet “them” continue to fight back.
All that said, there is one gene associated with kidney failure that many Black people have: APOL1. Evolution created a couple of variations in this gene (variant) to protect people from sleeping sickness, a highly deadly disease spread by the Tsetse fly and mostly confined to sub-Saharan Africa. Inheriting one variant from a parent protects a person from sleeping sickness, but getting a copy from each parent creates a much higher risk of high blood pressure-related kidney failure compared to people with no variants. In fact, just having one variant will increase a person’s risk of this kind of kidney failure. High blood pressure accounts for about 20% of kidney failure, second only to diabetes.
That sounds legit, so what is she bitching about, one may be wondering.
It’s the racist generalization for me. The medical world behaves as if only Black people can have an APOL1 variant; that every Black person has 2 variants; and that everybody with 2 variants is going to have kidney failure—which is not even close to reality. For example, in a study found that when they tested for APOL1—a test that can be done in the same amount of time it takes to get results for other results like HIV and Hepatitis C—transplant centers were WRONG to be throwing away kidneys from dead Black people 85% OF THE TIME. When 12 people die every day waiting for a kidney!
They were so wrong in their assumption that kidneys from Black people were not good enough to transplant because only about 20 of every 100 Black Americans have one variant and 13 of every 100 of Black Americans have 2 variants. And about 2 of every 100 people with no variants, 4 of every 100 people with 1 variant, and 12 of every 100 people with 2 variants will develop kidney failure in their lifetime. So not everybody. Not even close. More precisely, a sliver of a sliver of a sliver of Black folks. Definitely not enough to establish a basis for people facing kidney failure refusing a kidney from a Black donor, just like people currently get to decide if they are open to accepting a less than perfect (i.e. extended donor criteria) kidney—even though not just Black people can have variants. (Wanna know more? Read more details with references in this paper I co-authored.)
A year or so ago, I learned that I have one APOL1 variant. And if I had a do-over knowing what I know now? Robert Phillips and I would still be sharing two healthy kidneys between us today.