WASHINGTON—Candis Madden was exhausted.

She had just spent ten hours walking around the Disney theme park Animal Kingdom during a vacation with her family. She took a hot shower and fell into bed.

The next morning, she felt energized—until 11 a.m. Madden, 38, attributed her lingering fatigue to hustling around the huge park.

Except the exhaustion didn’t go away when they returned home to Washington, D.C. A week later, she took her blood pressure. It was elevated, but she wasn’t too worried.

Madden later went to the chiropractor for back pain. He took her blood pressure “just to check,” and it was alarmingly high.

“You need to go to the hospital right now,” he said.

Madden didn’t realize the extent of her illness until she was diagnosed by Dr. Gurleen Kaur, an assistant professor of medicine in the kidney disease and hypertension department at George Washington University Hospital.

Madden recalled Kaur took her hand and said: “I’m not supposed to do this because of COVID. But we’re around the same age and I have children too. I’m so sorry—you have stage five kidney disease.”

Ninety percent of Madden’s kidneys were scarred from untreated high blood pressure. Madden’s story isn’t unusual. Washington has the highest prevalence of kidney disease in any metro area in the U.S. As a Black woman, Madden is part of a community that’s disproportionately affected by this issue—Black Americans are three to four times more likely to have kidney disease than white Americans, according to the National Kidney Foundation.

The main causes of kidney disease are high blood pressure and diabetes. Ashté Collins, anephrologist at George Washington University, said the impact of kidney disease on Black Americans is tied to the legacy of the transatlantic slave trade. A disease called the African sleeping sickness, carried by a parasite, caused afflicted people to fall into a coma and die. Slave traders wanted healthy people to sell, so they didn’t pick obviously sick Africans. A genetic mutation protected some Africans from the disease, so they were more likely to be picked.

“You put those millions of people onto slave ships, move them across the Atlantic Ocean, and then have all of those people reproduce with each other,” Collins said. “There’s actually a higher prevalence of that specific genetic mutation amongst African Americans than there are native Africans, because the transatlantic slave trade selected for that genetic mutation.”

The gene that protects against sleeping sickness comes with a downside—predisposition to hypertension. Collins said that’s a large factor in why so many Americans of African descent have high blood pressure running in their families.
Collins said this mutation is even more likely among young people like Madden who have high blood pressure that’s difficult to control.

Seated on her couch in pink yoga clothes with her hair pulled back into a ponytail, Madden remembered going to her primary care physician three years before her diagnosis. At that time, he said her blood pressure was a little high. But he never told her about kidney disease.

Chronic kidney disease is separated into five stages, based on how well a patient’s kidneys are working to filter waste out of the blood. Kidney function is measured by the eGFR test, or estimated glomerular filtration rate. Once a patient reaches stage five, or an eGFR of less than 15, their kidneys are close to failing or have failed.

Collins compared kidney function to a car’s gas tank. The car runs the same whether it has a full, half or quarter tank—until it’s on empty. By then, the kidneys are so damaged that it’s hard to turn back.

Madden’s primary care physician measured her eGFR at that appointment three years ago. At that time, Madden had an eGFR of 75, which was a little low for her demographic. Now her eGFR is 12.

Madden said her doctor should have told her that her kidney function was not where it should be. Treating kidney disease as soon as possible is crucial to salvaging kidney function. But she didn’t find out until she was at stage five.

Because of this, Madden said she’s now “desperate.”

Joel Velasco and Brad Snodgrass, authors of a paper on the eGFR test, said the equation is based on a 1999 study that found Black patients had higher levels of creatinine, a waste product that is filtered out of the blood by the kidneys. The eGFR equation was corrected by 16% for Black patients to take that higher creatinine level into account.

This means that a Black patient and a White patient with the same age, gender and creatinine level may have different eGFRs, because the equation makes the Black patient’s result 16% higher.

During a presentation for the American Society of Nephrology, University of Pennsylvania nephrologist Nwamaka Eneanya said the 1999 study was based on three earlier flawed studies. Therefore, Black patients’ eGFR results could make their kidney function look better than it is.

The eGFR test is crucial for a patient’s access to treatment. The number determines when a patient should begin dialysis and get on the waiting list for a transplant.
Because of this controversy, the National Kidney Foundation and American Society of Nephrology released a report Sept. 23 recommending the use of an equation without the race variable. Instead, physicians should use a blood test for creatinine to estimate GFR as well as a urine test.

Carina Seah, a medical student at Mount Sinai in New York, co-ran a successful petition in summer 2020 to stop using the race-based eGFR test at her school. Seah said the race correction was a “lazy” way of trying to cover the many variables that affect a person’s test result. Physicians can also incorrectly assume a patient’s race from the way they look.

Seah said medical activists have been fighting the use of the race correction for years. But with the murder of George Floyd and hundreds of Black Lives Matter protests in summer 2020, she said institutions like the medical field reevaluated their racist pasts.

Other researchers are hesitant about the new recommendations. Snodgrass, co-author of a paper on the eGFR test, said the labs he knew would have to retool their equipment to conduct the new test, which is expensive and time consuming.

But George Washington University’s Collins pointed out the new test won’t be necessary for most patients, because the original eGFR equation can still determine rough stages. For patients who are on the border between one stage and another where they may qualify for treatment or a transplant, that’s when the new test will be useful.

John Bayton remembered looking at his eGFR result in his physician’s office and noticing his result was different because he is Black. He was diagnosed with kidney disease at 31 and started dialysis immediately. He’s now 47 and received a kidney transplant in February 2019.

Before he was diagnosed, Bayton was living the dream of a young professional in Washington. He had an “amazing” job as an event planner for the Center for Global Development and went out with friends at night. His diagnosis changed everything.

“I don’t even know what this even means,” he cried in the emergency room as he was diagnosed.

Bayton went from making six figures to not being able to do his job, he didn’t know what to eat anymore and he had no idea how to date again. Worst of all, it felt like no one understood. Heart attacks and cancer—everyone knew what those meant. Kidney disease, not so much.

He recreated himself by becoming an independent consultant, Bayton said. He was also able to start dialysis at home. Dialysis helps the failing kidneys by filtering out waste to prevent buildup, controlling blood pressure and maintaining a healthy chemical balance in the blood.

Dialysis is costly, both in time and money. Bayton said it can feel like a full-time job, with traveling to the dialysis center, waiting for the appointment, receiving dialysis for four hours, recovering for a short time and traveling home. This grueling routine repeats three days a week. The treatment costs about $80,000 to $90,000 a year. The federal government pays for 80% of the costs for most patients, and Medicare and other insurance providers can help fill in the rest, according to the National Kidney Foundation.

Bayton had more flexibility because he was able to do dialysis at home. But many people don’t have the skills or resources to do that. A lot of dialysis centers also don’t educate their patients thoroughly, Bayton said, perhaps because of a financial incentive.

“If you know that you have a patient in that chair, that’s going to make you $90,000 a year,” he said. “If you move that person home, you’re not going to make as much.”

Because dialysis is so taxing, patients must try to maintain their kidney function for as long as possible. The goal is to get a kidney transplant before a patient needs dialysis.

That’s what Madden remembered Dr. Kaur telling her when she was first diagnosed.

“Candis, if you adopt a plant-based lifestyle, and if you exercise and lose weight, it will take the stress off your kidneys, so that you can maintain the function you have until you’re able to get a kidney,” Kaur said.

Madden hung on every word.

After leaving the hospital, Madden pushed herself to exercise every day. From her diagnosis in May 2021 to September 2021, she lost 100 pounds. The weight loss itself wasn’t that important to her. She needed to live, for her kids and her
husband.

But it wasn’t easy. At first, Madden had no idea what she could eat anymore. At the grocery store, she examined nutrition labels to make sure there was no phosphate and measured the amount of sodium in each serving.

Her kids whined, tired of being there for hours. “Oh my God, we don’t want to go to the store with you,” they said. But she made them come with her.

“I can’t raise my blood pressure,” Madden thought as she read over the ingredients list. “If I raise my blood pressure, my kidneys will scar again. I have to pay attention to every little thing.”

She couldn’t go on date nights to fancy restaurants with her husband anymore, and had to give up her dreams of going to law school to become a better writer, as she works in proposal management.

Everything was worth it to be there for her kids. Madden lost her own mother when she was four, and never forgot what that felt like.

“I want to see my grandchildren grow up,” she said. “I want to be there for the moments that I get to pick up my kids from their homeschool co-op or when my daughter’s complaining because she doesn’t understand her math problem.”

She also wanted to stay alive for her husband, who supported her through the diagnosis. He took off work to bring her to the doctor, but after weeks without progress, he grew frustrated.

One day, he snapped at the doctors. “Just fix her,” he yelled. “You’re telling her to do all these things. I want you to fix her!”

Madden tried to calm him down. “John, this is not the type of disease you take a pill for,” she remembered telling him. “It takes time, you have to be patient.”

At the next doctor’s appointment, she made him wait in the car.

“We don’t treat people that way,” she said.

As she got better over time, he grew less upset. She knew he was just worried about her health. But she didn’t let him come to her appointments after that.

Despite all of Madden’s work, it wasn’t enough to reverse the damage done to her kidneys. She still needed a transplant.

Madden got on the waiting list for a kidney July 19. At first, she hoped to receive a kidney from her husband. But he tested positive for the sickle cell disease trait, so he couldn’t donate.

When they found out, Madden was anxious. If he couldn’t give her his kidney, who would?

“Candis, you got to be patient,” her husband reminded her. “We have to just wait.”

Her doctors encouraged her to tell others in case anyone could donate their kidney. But she was ashamed, so it was a while before she told anyone. A few people offered to donate, but only one—a cousin of hers—hasn’t gotten excluded. That cousin has yet to have her bloodwork done.

Live donors are a much better option than receiving organs from someone who died. But a lot of Black patients have the same issue as Madden.

As of September 2021, there were over 1,000 people on the waiting list for a kidney transplant in Washington. Of that total, 710 people are Black—over double the number of white people on the list.

Matthew Cooper, kidney and pancreas transplant program director at Medstar Georgetown Transplant Institute, said although roughly 60% of the people waiting for a kidney are African American, 60% of the living donor transplants are from Caucasians.

This is partly due to some of the Black community’s mistrust of the medical field, Cooper said, and because a lot of Black patients have family members who are at risk for kidney disease themselves.

Cooper said the wait time for a deceased donor transplant is about five to six years.
Madden is still waiting for a kidney. Every month, she gets her bloodwork updated so she can remain on the list. For now, she’s hopeful.

“I had to realize that my life is really beautiful,” she said. “Every moment, this moment that I’m in right now, means everything to me.”