Sept. 10, 2024
NEW YORK — One Brooklyn Health, a safety net hospital system that serves some of this city’s poorest and sickest patients, would seem to be exactly the place to benefit most from the effort to remove race from calculations that assess kidney disease.
The patients — mostly Black and insured by Medicaid or Medicare — are a case study in the disparities that run through American kidney care: A large number have advanced disease and require dialysis, but just a handful get timely specialty care or transplants.
Eager to stem these disparities, the leaders of One Brooklyn Health were early adopters in the movement to eliminate race from the commonly used equation that estimates kidney function. Doing so flags Black people with kidney disease sooner, and doctors hope it will allow more of their patients to qualify for treatment while their kidneys can still be saved, or get transplants that few here ever receive.
But the day-to-day work at this hospital — sometimes uplifting, often quite grim — provides an important reality check to the optimism found in more academic circles driving the effort to eliminate race from medical algorithms. Here, because social problems are so deep, resources are so scarce, and patients are so sick — often arriving in the ER in full-blown kidney failure, without having received the primary care that might have caught symptoms earlier — doctors say changing one clinical algorithm will by itself have limited impact.
The new algorithms sharply increase the number of potential kidney patients. “The numbers are astronomical,” said Gilda-Ray Grell, a nephrology fellow at One Brooklyn Health. “The mountain ahead of us is huge.”
Because chronic kidney disease is so widespread here in Central Brooklyn, affecting one in four people, One Brooklyn Health’s service area contains 350,000 or more people who could benefit from kidney care, the hospital estimates. But many of these people rarely reach clinic doors until much too late. OBH is currently treating fewer than 2,000 patients for kidney disease.
“We are desperately not reaching people in need,” said primary care physician Sophia Kostelanetz, who has been a vocal advocate against the use of race in clinical algorithms since she was a resident.
That’s not to say the new algorithms won’t help patients. Anticipating an increase in those who will become eligible for transplants because of the new equation, One Brooklyn Health last month announced a new partnership with New York state’s largest kidney transplant program, NYU Langone Transplant Institute in neighboring Manhattan. The arrangement will make transplant services more accessible for the Brooklyn hospital system’s sickest patients and facilitate more aggressive treatment for all kidney disease patients. Meanwhile, a new diabetes center is harnessing technologies like insulin pumps to try to forestall the illness in more patients, preventing kidney disease before it takes hold.
That’s a tall order. Many kidney patients at OBH are still young, in their 30s, their disease the result of untreated diabetes or drug use. Others are older but have neglected, ignored, or not been able to get the care they need for the illness that silently wreaks havoc until patients take a sudden downturn with severely swollen limbs and crushing fatigue.
Grell is “gung-ho” about using the new equations and eager to work with more patients who newly qualify for treatment. She gives patients business cards printed with her cell phone number and her photo, hoping the fact that she’s a Black woman might inspire their trust. She tries to be efficient during appointments to leave patients ample time to talk.
She’s careful not to blame, something she’s seen in other hospitals where patients can be labeled “non-compliant” in their records with no mention of barriers they face. “Here it’s the opposite, because we have so much cultural and racial diversity among our staff,” said Grell. “They are quick to say, ‘Oh yeah, this makes sense.’”
Instead, Grell tries to inspire patients, and keep them off dialysis, or “the machine” as many here call it. She high-fives patients who bring in journals with their blood pressure readings carefully recorded by hand — controlling blood pressure is important to protect the kidneys — and calls patients out of the blue to ask what their blood pressure is at that moment. If a patient misses a visit, she rings. “When your actual doctor calls, they say, ‘OK, I’ll come right in,’” she said.
But all this effort by nephrologists to prevent kidney failure doesn’t matter if people aren’t getting the routine preventive care they need to find out they have the disease. Not infrequently, middle-aged patients who were born at an OBH hospital come in saying they can’t remember the last time they’d been back or seen a doctor.
Many say they can’t get child care or transportation. Those who struggle to pay rent or cover grocery bills say health care often takes a back seat. Some live alone or in shelters, don’t drive, have mental health issues, or are young mothers. Others are visually impaired, or require walkers.
Many of these patients, nephrologist Puneet Bedi said, don’t even react when told the disturbing news their kidneys have failed. “I don’t really understand it,” said Bedi, who seems personally crushed by this numbness in his patients. “There’s so much despair.”
In these cases — all too common here and at other safety net hospitals that catch kidney disease far too late — no adjusted algorithms are needed. “We have corrected the equation but it has very little impact on health outcomes,” said Bedi. “It doesn’t change the realities on the ground.
With 2.6 million residents, Brooklyn is home to 31% of the population of New York City. It includes trendy, wealthy areas like Williamsburg, with its artisanal coffee, luxury hotels, and $345 tasting menus. But One Brooklyn Health serves a very different Brooklyn, with five of the city’s 10 poorest census tracts, with one in five residents qualifying for food stamps, and with 1.2 million people insured by Medicaid.
It’s an area with a catastrophic shortage of primary care, and where hospital closures have been the norm. One Brooklyn Health was born of this emergency, after then-governor Andrew Cuomo announced a rescue plan in 2018 to consolidate the area’s remaining hospitals and improve their facilities with a $700 million financial lifeline. But the system, and its patients, continue to struggle.
The problems range from low Medicaid reimbursement rates that plague the hospital’s finances, to the challenges of providing care to a population that faces what one analysis called “shocking economic and racial disparities,” to the structural racism that affects care even at a Black-led and largely Black-staffed hospital system.
“There was a belief, we’re a safety net so we’re automatically doing health equity work,” said interim CEO Sandra Scott, a Black physician who led OBH’s emergency department during the Covid-19 pandemic and is now taking on even bigger challenges. “We’re not immune. There is structural racism baked into the system.”
Because of that, poor health outcomes persist. In Brownsville, where OBH’s Brookdale Hospital Medical Center is based, people live an average of 10 years less than most of their neighbors in Manhattan, with higher rates of obesity, diabetes, and heart disease and rates of new HIV diagnoses nearly three times that of Manhattan. In this health care desert, it would take 335 additional primary care doctors to meet the health needs.
At first glance, Brownsville is a neighborhood of broken televisions set on curbs, chain link fences, and a smattering of Jamaican and Chinese restaurants and check cashing stores. Colorful posters mounted on the sides of homes celebrate the lives of Black men who once lived inside, their lives cut short in middle age. But it’s also a neighborhood with vibrant African hair braiding salons, young girls bouncing on pogo sticks, men walking briskly to work, and carefully tended gardens filled with pots of bright begonias.
Brookdale is much the same: rough around the edges, with glimmers of hope. It’s an aging facility in need of renovation, but has a spanking new 33-bed ICU (often filled with kidney failure patients) due to the state’s cash infusion. It’s a place where people stop each other in the hall to ask if they are doing OK or meet for lunch over the spicy Caribbean dishes regularly served in the cafeteria. There’s a palpable feeling of warmth. Patients walking through the halls get shouts of hello, and sometimes hugs from employees.
On a recent day in the always busy inpatient dialysis unit, assistant head nurse Valencia Grant-Forbes attended to alarms, arranged bags of bicarbonate solution used to deacidify blood, tapped screens to adjust settings, and gently touched the arms of patients. “He came in off the street with end-stage kidney disease,” she said of a patient who lay very still and sick on a stretcher as others received treatment in recliners, some watching Westerns or dozing off.
Grant-Forbes is known to come in on Sundays before church to check on new patients who arrived overnight from the ER. It’s what she’s done for years.
The ultimate goal is to keep patients from ending up in one of Grant-Forbes’ recliners. A grant-funded Diabetes Center of Excellence that opened in 2022 offers what endocrinologist Kurt Kodroff calls “exquisite access.” Patients can receive advanced insulin pumps, screening for diabetic retinopathy, and rapid A1C tests of blood sugar levels to monitor for prediabetes — all an effort to prevent diabetes and keep it in check before it destroys a patient’s kidneys.
“Many of our patients were not getting the state-of-the-art technology,” said Kodroff, the center’s leader. To reach more patients, the center is open on evenings and select Saturdays and uses a video telemedicine portal so patients can check in frequently. Unlike most doctors who chafe at the thought of patients emailing them after hours, Kodroff, who also serves as OBH’s chief quality officer, is thrilled. “We’re getting three to five messages a day now,” he said recently.
It’s these communications that can help Kodroff and fellow doctors catch small hints of possible kidney disease — like a trace of protein in urine — early on before the organ starts to fail, and find patients now eligible for specialty kidney care under the new algorithm. “I’m always saddened when I see a person for the first time who’s at the end of their kidney life,” he said. “A lot of times they seem very surprised about what’s happened to them.”
Chief Medical Officer Kusum Viswanathan has been at the hospital for 37 years. When she visited a private hospital out of state recently to help a family member, she was startled by the luxurious surroundings and waiting rooms. Her hospital doesn’t have those things, but what OBH offers, she said, is a deep sense of caring, doctors who hound patients to take care of themselves, and a complete embrace of the new kidney function equations, even if adding more patients means further straining her health system.
“It’s important because the majority of our population falls in the category where this helps,” she said. “The bottom line is if our service area has expanded, the right thing to do is serve those patients.”
One place the algorithms may make a major difference is by making more people eligible for kidney transplants. The new calculations are shortening the waitlist times for many Black patients eligible for transplants. That’s great news. The bad news? There are few options for getting a new kidney in Brooklyn.
The only hospital in the area that offered kidney transplants, University Hospital at Downstate in East Flatbush, announced earlier this year that it would close or drastically reduce services — though that plan is now on hold as a commission studies the issue.
“We don’t often see the happy ending of transplants,” said Bedi, who trained in transplant nephrology at Montefiore Medical Center.
While there are a half-dozen transplant centers in the neighboring boroughs of the Bronx or Manhattan, the distance — and somewhat onerous screening requirements — can be off-putting for patients who have trouble with transportation, child care, or getting leave from work. “It’s multiple, multiple, multiple visits,” said Bedi.
The new partnership with NYU Langone’s kidney transplant program — which physicians at OBH said was motivated by the many potential patients the new algorithms could add to its nephrology clinics — will make getting a transplant more convenient, and potentially faster, for patients like Earl David Jackson.
Born and raised in Brooklyn, Jackson, 57, has worked in security at Brookdale for 15 years. He’s also been a long-time patient with a history of high blood pressure and type 2 diabetes. In 2014, he had a toe removed. He knew his kidneys were failing; he had episodes when his body was so swollen, he’d be in the hospital for weeks. Four years later, he started dialysis and went on the kidney transplant list with high hopes.
The dialysis was hard. “When the machine pulls, it pulls,” he said. “You get cramps, your fingers get deformed. You’re either nauseous or you don’t have the taste for food.”
Then came 2020 and Covid-19, which landed him in the ICU with his oxygen levels dipping to 70. He survived but spent three months recovering. “When I got back to work, I found out my colleagues had died — two close friends,” he said. It was a dark time.
He waited and waited for a kidney. He wasn’t alone: The average wait time is three to five years, but studies show Black people wait on average a year longer — with the racial adjustment in the algorithm cited as one reason for delayed placement on transplant lists. By the beginning of 2022, the normally jovial father of three and ordained pastor was starting to lose hope.
He was so fatigued, he was falling against walls at times. “I said enough is enough, I can’t take it anymore.” But less than a week later, he got the call that a kidney was available at University Hospital at Downstate. “Sunday I said to the Lord, ‘I’m done,’” Jackson said. “Friday, here comes a kidney.”
These days, he feels tremendous. He sometimes forgets he doesn’t have to go to dialysis. He often talks to his new kidney, which he calls “my baby.” “I say, ‘We’re one now, relax,’” he said. He’s eating better and feeling fitter. He’ll walk up four flights of stairs instead of taking the elevator. “I think I could jump over buildings now,” he said.
Jackson spends much of his free time supporting people on kidney waiting lists through a FaceBook group. He’s thrilled to now see so many Black patients move up the list due to the new algorithm. “It’s like time served,” he said.
Under the NYU Langone partnership, Brooklyn patients will travel the hour-plus distance to Manhattan for surgeries, but have initial intake appointments and follow up care at OBH, closer to their homes and with providers they know and trust. It’s an arrangement that’s worked well for residents of Long Island, who now make up nearly 40% of the NYU’s kidney transplant patients.
“Our primary goal is to improve access to transplants in Brooklyn, to a population that has really been underserved,” said Nicole Ali, the medical director of NYU Langone’s kidney transplant program. “It’s not often you get to do something that you know will really have such an impact.”
NYU Langone’s program is known for transplanting kidney patients quickly; its median wait is just over 9 months compared to 32 months in the rest of the state. Nephrologists at OBH hope that means the first patients from their clinics could receive new kidneys as early as next year.
This story has been updated to clarify life expectancy disparities between Brooklyn and Manhattan neighborhoods.
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