LaVarne Burton has spent 21 years leading the American Kidney Fund, a national nonprofit whose mission is to fight kidney disease and help people live healthier lives. As president and CEO, she now also chairs Kidney Care Partners, the nation’s largest kidney care coalition. She sat down to talk about what Black communities need to know, what to look for, and what to do about it.
What should we know about our kidneys?
Kidneys are essential for regulating blood pressure and getting waste out of our body. Kidney disease is a serious issue that disproportionately affects African Americans. We are four times more likely to end up in kidney failure.
What can we look for if we don’t have direct symptoms?
We often don’t know that our kidneys are not functioning well until we’re close to kidney failure. Look for whether you have relatives who are on dialysis or who’ve had transplants. Look for whether you are impacted by diabetes, which is a leading cause of kidney disease and kidney failure. Is your blood pressure high? Later on, when you’re near kidney failure, you might begin to get swollen ankles or changes in urination patterns.
What do we need to know about testing?
I’m not a doctor, but I want to invite everyone viewing this to go to the American Kidney Fund website, kidneyfund.org.
Work with your healthcare provider. There are routine tests that most of us get when we do our lab work or go in for physicals. There’s a test of urine and a test of blood. One is called EGFR and the other is called UACR. We can look for whether our kidneys are functioning well, whether there’s protein in the urine, and talk with a doctor about those. When you get your lab work, look at those lines and follow the pattern.
With early identification, you can slow down the progression of kidney disease. Diet changes, exercise changes, alcohol intake, and medication if the doctor recommends it. There’s also a form of genetic kidney disease impactful for African Americans called APOL1-mediated kidney disease, or AMKD for short.
Can you describe AMKD?
We have two APOL1 genes, one from our mother and one from our father. For people with ancestry from certain parts of Western and Central Africa, over thousands of years, a variant in those genes has developed. About 13% of African Americans have two variants. If you have the two variants, it puts you at higher risk of this form of kidney disease. About 20% of those people will end up in kidney failure.
AMKD not only causes kidney disease and kidney failure, but it often begins much earlier than other forms. It may start as early as the mid-teens and progresses to kidney failure about a decade faster.
How would someone know if they carry these gene variants?
Family history is important. Do we have other members of our family who have kidney issues, who are on dialysis, who’ve had transplants? Do we ourselves have kidney disease but don’t know what caused it?
Turn to your doctor. Talk with them about your situation and ask if they recommend genetic testing. Our website, kidneyfund.org, has a guide to genetic testing. If your doctor recommends it, many insurance companies will pay for it. We also have sample conversations on the website of questions you might ask your doctor.
How do you advocate for yourself?
Talk to each other and get that family medical history out. Talk with your doctors, ask those questions, ask for testing to tell you how well your kidneys are functioning. If you have a history of kidney disease and don’t know what caused it, or if you have family members with kidney issues, ask your doctor whether you should do genetic testing.
What motivates you to do this work?
It’s the patients. I have had the great fortune of meeting so many people dealing with kidney disease at various stages. When people are dealing with life and death situations, it brings out in them such heroism. That to me is the greatest motivation.
I am an African American woman. When I decided I wanted to move into the nonprofit space, one of the first things that struck me was that this disease disproportionately affects my people. I wanted to make sure that people, regardless of their background or color, had equal opportunity for the best quality healthcare. I’ve been with the American Kidney Fund for 21 years, and it has been the most rewarding thing of my career.
How important are the ambassadors in your network?
We have so many different kinds of ambassadors. Our patient ambassadors talk with public officials, whether at the federal government level, or state, or local. We have lots of stats, but that’s not what moves people. What moves people is knowing the human story. What happens to a person who has kidney disease? Ambassadors help to tell that story and also tell the story of how they have dealt with it.
They talk with the media. We need to put a face on this disease. Kidney disease is the fastest growing non-contagious disease in this country.
Not only are they telling their stories to the media and to public officials, they’re telling their stories to the American Kidney Fund. When we develop programs, they are developed with the input from the people actually experiencing this.
We also partner with all kinds of community organizations, Greek-letter organizations, Hispanic organizations, and religious organizations to help get the word out. We have a program called Kidney Health Coach, where anyone who wants to talk in their community about kidney disease can take an online course and become a certified kidney coach.
How do we remove the stigma from kidney disease?
We have patients who said they were grateful when they found out the reason for their kidney disease, because then they knew they didn’t cause it. There are conditions, even when people are doing their best, that are intractable. There is a genetic basis.
We don’t have equal access to healthcare in many communities, particularly communities for people of color. Very often the diagnosis occurs when people are well along in that disease, and treatment is less effective.
There’s no more reason to blame a person for having kidney disease than there is to blame a person for having heart disease or cancer. Let’s spend our energy going upstream, helping people get diagnosed and into treatment early. Let’s do the research to better understand this disease, to treat it, to cure it, to prevent it.