Medical dramas like “Grey’s Anatomy” often present an unrealistic picture of the organ transplant process, making it seem very linear and easy to navigate. We usually focus on how long patients wait for, and even die waiting for an organ transplant but scant attention is paid to what it requires to be listed for an organ transplant.
But here’s the reality: Approximately 815,000 Americans are currently living with kidney failure, with 555,000 of that number on dialysis. As of 2021, only one in 8 Americans with end stage kidney disease (ESKD) were on the waitlist for a kidney transplant, which means around 660,000 patients may be eligible for a kidney transplant, but may not even have been evaluated for listing.
There is no standard guideline for determining which patients with ESKD are eligible for a kidney transplant, and with no standard way of communicating between dialysis clinics and transplant centers, it is difficult to track patient referrals and updates in patient status.
“It sounds easy, but it’s not so easy,” explains Dr. Thomas Schiano, medical director of adult liver transplantation at the Recanati/Miller Transplantation Institute at Mount Sinai Hospital. “Part of this is because the patient’s doctors may not be referring them to the transplant center in a timely fashion. So that means that the physician and the patient need more education about the indications for transplant.”
William Humiston III, 40, an emergency medical technician living in Ballston Spa, N.Y., found himself in this situation when he was referred to hospice after being misdiagnosed by his primary care doctor with pneumonia and Lyme disease.
“I had fluid on my lungs. I was having trouble breathing. I passed out a couple times, and something was wrong. But for four months she treated me for Lyme disease and pneumonia,” Humiston shared. “She even said I needed to see a therapist, because I was making it up in my head.” He eventually received a liver transplant at Mount Sinai hospital in October 2024, after his wife connected with the liver transplant coordinator at the hospital.
Humiston was fortunate to get his procedure. But even still, having current and approved health insurance is a requirement to be listed for an organ transplant. As of the first quarter of 2024, 27.1 million Americans were uninsured, representing 8.2% of the population. During that same period, the African American uninsured rate was 9.7%. At 6.5%, white Americans tend to have the lowest uninsured rates among the major racial groups.
These statistics take on grave significance when examined in the context of Black people being three times more likely to have kidney failure compared to their white counterparts, and Hispanics being 1.5 times more likely than non-Hispanics to have kidney failure. However, in some cases, other than undocumented immigrant patients, social workers in New York hospital systems will help uninsured patients navigate the process to get health insurance.
This issue is further exacerbated by a shortage in specialist care. For example, there are currently 580 board certified hepatologists, a ratio of 1 to 330,000 patients, and they are primarily concentrated around urban areas and academic medical centers, leaving many states with very few or even no hepatologists according to medical information publisher Wolters Kluwer.
The landscape for kidney disease patients is better with 9,653 active nephrologists as of 2014, and 9006 focused on direct patient care. There is concern however, that with an aging workforce, we will see a decline and shortage in nephrologists by 2037, with rural areas being the hardest hit. When a patient is referred to a hepatologist or nephrologist for further screening, if they have to wait for months to get an appointment, this further delays evaluation for listing.
“What I would like to emphasize to patients is that you want to do this process while you are still feeling well, because it’s a lot of appointments.” explains Nicole M. Ali, MD, medical director of the Kidney Transplant Program at NYU Langone. Evaluation for organ transplants takes a minimum of four hours, and with kidney transplant evaluations involving meeting with a social worker, a nutritionist, a nephrologist, a transplant surgeon and a transplant nurse coordinator. This is in addition to extensive blood work, cardiac testing, cancer screening, and imaging like a CAT scan.
Patients also often lack support, a point person or caregiver to help coordinate everything. “Many people don’t have a person that they can rely on, because that person also needs to work. Or they don’t want to ask a brother and sister to take care of them,” said Ali. The stigma of not wanting to be a burden is very pervasive, especially in Black and Brown communities.
Codette Darton, clinical operation manager of liver and intestinal transplant at Mount Sinai, explains that a lot of misconceptions still exist around liver transplantation. “There are some doctors who are under the impression that we don’t transplant people addicted to alcohol, so they don’t refer the patient,” said Darton.
Until recent years, the medical standard for liver transplantation for someone with alcohol liver disease (ALD) was six months. The ”6-Month” rule required patients to be sober for at least six months before they could be eligible for a liver transplant, but this is no longer the case. Over time, studies revealed that it was a poor indicator of post-transplant abstinence, and inconsistent assessment protocols across the medical system, which inevitably increased health disparities, affecting mostly Black patients and women.
“We’re seeing an explosion of alcohol cirrhosis, especially from a much younger population, because they’re out clubbing and partying,” said Darton, “and all these commercials that promote Ciroc and all these other alcohols. The young people are getting caught up with the glamor of it all, and as a result, they’re showing up with alcoholic hepatitis and need to be transplanted.”
Humiston, who was 39 years old when he started getting sick, admits that “I was a drinker, but not horribly.” Approximately 2% of the US population has alcohol liver disease, with a prevalence of 26% among hazardous drinkers, and 55.1% among individuals with diagnosed alcohol use disorders. Alcohol cirrhosis (AC) specifically affects about 100 per 100,000 enrollees in privately insured populations and 327 per 100,000 in the U.S. Veterans’ population.
Both Mount Sinai and NYU Langone have successfully transplanted patients in their 70s and patients with other medical conditions. They emphasize having each patient being evaluated on their individual merits. Agnes Pomoaa, 71, and a native of Ghana who has been a U.S. resident for 17 years, has almost completed her evaluation at One Brooklyn Health, to be listed for a kidney transplant at NYU Langone Hospital. She is not yet on dialysis, but wants to be transplanted before her kidney disease progresses further, so that she can visit her home country Ghana at leisure. “If I get the transplant, I can go there for at least one month and come back,” said Pomoaa.
Finding solutions
Both Schiano and Ali attributed delay in referral and access to transplant centers as the biggest issues preventing low income and minority patients getting listed. “I’ve certainly had patients come to me for kidney transplant evaluation, and I say, how you’ve been on dialysis for two years now. Why didn’t you come before? And these are not uneducated patients”, shares Ali, “they’re attuned to their health and all of that. He said to me, well, the dialysis center never sent me. He never told me about kidney transplant. I didn’t know anything about it.” Ali went on to say these patients were being seen by a dialysis center in Brooklyn, but when they moved to Long Island and started treatment at a different center, they were immediately referred to NYU Langone.
Mount Sinai has an outreach clinic in Astoria, Queens and Long Island that performs evaluations for liver transplant listing. The patient population is mostly South Asian, from Bangladesh, Pakistan and India.
“I would say we’re able to do about 90% of the evaluation(for liver transplant listing),” said James F Crismale, MD, liver medicine and gastroenterology specialist at Mount Sinai Queens, “we do have one transplant surgeon that comes out once a month to all the Long Island practices, and from there, they can be listed for transplant.” Crismale shared that they often see patients referred with elevated liver enzymes who may already be receiving treatment for metabolic diseases like diabetes, hypertension and cardiac disease.
Another benefit of the outreach clinics in Queens and Long Island is access to advanced testing. “We have a simple office based ultrasound test called the FibroScan that can actually allow us to get a better sense about whether there is any scarring or damage to the liver,” said Crismale. He went on to say that access to this simple test can determine how aggressive they need to be in doing an evaluation for liver transplant listing, and if the patient has fatty liver disease, recommend lifestyle changes.
The partnership between One Brooklyn Health(OBH) and NYU Langone is turning the tide on early kidney transplant evaluation in Brownsville, Brooklyn. The OBH and NYU Langone Health Kidney Transplant Access Program started in January 2025, and is a project that came to fruition because of the work done by the Coalition to End Racism in Clinical Algorithms (CERCA), run by the New York City Department of Health. To date they have evaluated almost 50 patients for referral to NYU Langone.
“We (at OBH) provide patients with advanced kidney disease access to transplant evaluations right at Brookdale Hospital, instead of requiring them to travel long distances or navigate unfamiliar health systems,” said Dr. Sophia Kostelanetz, Health Equity Lead and Primary Care Physician, Department of Medicine, at One Brooklyn Health. She went on to explain that the program serves patients who already have longstanding, trusted relationships with them.
“The gold standard is, can we get you a transplant before you are even on dialysis?” explains Kostelanetz. The OBH program meets a direct community need as between 2020 to 2022, the age-adjusted rate for chronic kidney disease hospitalization in Kings county was 120 per 10,000. Coupled with the removal of race as a factor in calculating eGFR, more Brooklyn residents would be eligible for kidney transplant listing –– they just need to be evaluated.
The program operates weekly on Fridays, with a dedicated transplant nephrologist, coordinator and social worker. They are currently integrating a peer mentor, an individual from their own community who has undergone a transplant, and plan to add a community health worker to the program later this year. This community health worker will provide home visits, education, care, navigation and disease management to help overcome social barriers.
Dr. Ali wants the community to have hope. “The messaging out there for New Yorkers is that there’s this perception that the waiting time for a kidney transplant in New York is 6 to 8 years,” said Ali, “Or some people tell me that the transplant program told them 8 to 10 years, or 5 to 7 years. Our median time to transplant at NYU Langone is 9.1 months.”
For New Yorkers needing an evaluation for kidney transplant, here are some resources:
NYU Langone Kidney Transplant Program
OBH and NYU Langone Health Kidney Transplant Access Program
Columbia University Irving Medical Center
Montefiore Einstein Center for Transplantation
For New Yorkers needing an evaluation for liver transplant, here are some resources:
The Recanati/Miller Transplantation Institute (RMTI) at Mount Sinai
Sandra Atlas Bass Center for Liver Diseases at North Shore University Hospital
Columbia University Center for Liver Disease and Transplantation
This report was produced with support from Renaissance Journalism’s 2025 LaunchPad Fellowship for NextGen Journalists.