Mass General Brigham is dedicated to making clinical care more equitable for its patients. One area being transformed is kidney transplantation and organ donation.
The rates of chronic kidney disease (CKD) and kidney failure are 4 times higher in Black patients, and 2 times higher in Hispanic patients, compared to non-Hispanic white patients, but they often face reduced access to lifesaving kidney transplantation. Non-Hispanic white patients make up more than 70% of the kidney transplant waitlist at Massachusetts General Hospital. But if the waitlist was based solely on rates of end-stage renal disease (ESRD) in the community, Black and Hispanic patients would make up 50% of the list.
Enter the Equity in Kidney Transplantation (EqKT) Initiative at Mass General, a comprehensive program operating in Chelsea, MA, a majority-Hispanic community just north of Boston. While the program is based in Chelsea, the team can be deployed to other locations, and non-Chelsea residents can come to the clinic. “We want to go out into the community and see the patients in the community instead of bringing them to our center. The whole team is fully bilingual in Spanish and English, and I think it makes a huge difference,” says Abraham Cohen Bucay, MD, a Mass General Brigham nephrologist and lead transplant nephrologist for the EqKT Initiative.
In this article, Dr. Cohen and Winfred W. Williams, MD, a Mass General Brigham nephrologist and associate chief of Nephrology at Mass General, discuss the barriers minority patients face in the health care system, the EqKT Initiative, and how to make care for chronic kidney disease more widely accessible to the communities that need it the most.
Why is there such a big gap between the need for kidney disease care and access to care for minority patients? “One of the big factors is structural racism and how that plays out in minority communities,” explains Dr. Williams. “There’s a lack of access to high-quality health care, lack of access to early referral to kidney specialists, and then there are a lot of what we call social determinants of health that contribute to the excess burden of CKD in communities that are underserved and under-resourced.” For instance, 40% of Hispanic and 12% of African American patients don’t have health insurance, which affects their ability to afford health care.
The environmental factors that make it difficult for minority patients to access care are multi-layered. “There are a lot of barriers,” says Dr. Cohen. “Transportation is an issue, if they don’t have paid childcare, if they don’t have paid time off. And also language barriers…if you’re living paycheck to paycheck and you cannot leave work because they won’t pay you, it’s difficult to get to your appointments.”
The process of getting a kidney transplant requires many steps, including:
This multi-step process makes it that much more complicated for minority patients to receive the care they need. “It’s quite difficult if you’re not used to navigating the system,” Dr. Cohen says.
There are also historical factors that affect minority patients as they interact with the medical system. “There’s a fear of being exploited by medical research felt by many of these patients. This is enshrined in the memory of Black people in this country by the abuse suffered by African American sharecroppers in Macon County, Alabama, as a result of the U.S. Public Health Service and the CDC’s infamous 40-year Tuskegee syphilis experiment,” Dr. Williams says.
The problems are complex and not easily resolved. “We've been talking about these issues for a good 25 to 30 years,” Dr. Williams explains.
In addition to the multi-layered and complex social barriers for minority patients, research over the last decade has uncovered specific genetic risk factors contributing to the problem. For African American patients, two so-called risk variants in the Apolipoprotein-L1 gene were discovered to be associated with a high risk of developing CKD. “If you inherit two copies of either of the variants, then you not only have a higher risk of developing chronic kidney disease, but you also are at higher risk for more rapid progression to end-stage kidney disease,” says Dr. Williams.
The kidneys play an essential role in the body, filtering your blood and removing waste and excess fluid in the form of urine. Kidney failure, or ESRD, occurs when the kidneys have lost 90% of their functionality. The only treatment for patients with ESRD is dialysis or a kidney transplant. Dialysis uses a machine to remove waste products from the bloodstream.
“Kidney failure really is life-changing,” Dr. Williams says. “People don’t realize that once your kidneys fail, and you have the prospect of dialysis or transplant, it really changes the normal flow of activities in a patient’s life. It can be tremendously disheartening.”
Other health conditions can contribute to the risk of developing kidney disease. “Native Americans and Hispanics are more predisposed to diabetes, which is the most common cause of end-stage renal disease. So that is a predisposition for them,” says Dr. Cohen. “Knowing your risk factors, like your family history, or if you have high blood pressure, makes a huge difference.”
“Half the patients who have ESRD in the United States have diabetes and hypertension, and minority communities are disproportionately affected by those metabolic conditions,” confirms Dr. Williams.
Estimated glomerular filtration rate, or eGFR, is a measure of how well the kidneys function. A lower eGFR level indicates more severe kidney disease. It measures the level of creatinine (a waste product usually filtered out by the kidneys) in the bloodstream, and also factors in a patient’s age, sex, and, in some cases, race. A patient’s eGFR level helps determine whether or not they’re referred to a nephrologist, or put on transplant lists.
“The equations that are used to calculate eGFR were based on data derived primarily from predominantly white populations back in the 1970s,” Dr. Williams explains. Because of differences in measured (not estimated) GFR between white and Black patients, a race coefficient was introduced by investigators as a correction factor in the eGFR calculation. As a result, Black patients were categorically estimated to have higher eGFR levels than white patients, a result that to this day greatly impacts the care of individuals at advanced stages of kidney disease. An inflated eGFR lessens one’s ability to receive timely referral to kidney specialty care and preparation for therapies to address kidney failure. “Complications can ensue as you wait for that eGFR to decline to lower levels that signal the time for referral to specialty care. There’s been a great effort in the past 2 years to completely eliminate the Black race coefficient from these equations and use other serum markers for kidney function, such as the use of the biomarker cystatin C, which nullifies the impact of race and sex,” Dr. Williams says.
The earlier kidney disease is diagnosed, the better the outcomes for the patient. “It makes a huge difference,” says Dr. Cohen. “We have several medications we can give patients depending on their diagnosis, but there are many things we can do to prevent the progression of kidney disease if we catch it early.”
Mass General Brigham has been a leader in recognizing the harm using the race coefficient can cause minority patients. “I think we eliminated the race coefficient even before the major nephrology societies started talking about it,” Dr. Cohen says. A Mass General policy update now allows patients who were previously affected by the race-based calculation to receive credit for increased time on the waitlist.
The EqKT Initiative at Mass General launched in March, 2022 to address the disparities in kidney disease treatment for minority populations. “I think about the initiative as a comprehensive program. It's not just one thing like going to Chelsea, although that's probably the most important part. In the first stages of this process—like diagnosis, awareness, education, referrals, all of those things—we created educational materials for patients and also for our referring doctors. We also changed the eGFR equation to not include the race coefficient,” says Dr. Cohen.
“I think connecting with communities through outreach initiatives, engendering trust, and making the appropriate partnerships with trusted stakeholders in the community goes a long way to try and rectify the injustices of the past,” says Dr. Williams.
Dr. Cohen leads the transplant care team, along with a nurse coordinator, a social worker, and a health and wellness patient navigator. They provide multilingual, virtual and in-person medical care and education. They connect patients with resources like transportation and food banks. By making care more accessible in the local community, the team is addressing the social determinants of health that made it difficult for patients to access medical treatment. “We try to engage patients early, and list them on the wait list as early as possible for them to start gaining time on the list,” he says. On average, patients wait 5 to 8 years to get a kidney transplant from a deceased donor.
The transplant team also educates the patients and their families on the benefits of living kidney donation, which is a quicker option for receiving a donor organ. A kidney transplant from a living donor, related or unrelated, lasts 5 to 10 years longer than kidneys from deceased donors.
“There are a lot of misconceptions about living kidney donation, which we are trying to address,” Dr. Cohen says. “Such as, the donor doesn’t have to be a family member. What we tell the recipients is that you have to find someone that is healthy enough to donate a kidney, and that is willing to give you a kidney. Those are the only two factors,” he explains. If a patient finds a living donor that isn’t a direct match for themselves, they can participate in Mass General’s paired kidney donation, which enables them to receive a new kidney from another living donor.
The EqKT Initiative has seen promising results so far, with its first patient receiving a successful transplant, dozens of patients now being treated for chronic kidney disease, and more being enrolled on the transplant wait list.
“I think we have a lot of room to evolve, and to do the kinds of studies that show this kind of intervention in a community makes a difference,” says Dr. Williams.