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Physicians and advocates explored ways to improve access to clinical trials, dialysis, and transplants for racial and ethnic minorities with chronic kidney disease during a hosted by U.S. News & World Report and sponsored by the American Kidney Fund (AKF).

When the COVID-19 pandemic struck, people with chronic kidney disease, particularly those in kidney failure, could not isolate the way other people could because they needed to go to dialysis or other medical appointments, explained LaVarne Burton, president and CEO of the AKF.

During the first year of the pandemic, people with kidney failure were far more likely to contract COVID than other patients on Medicare and . People of color, especially Black and Latino Americans, were also more likely to get and die from COVID.

"So, if you were a patient who had kidney failure, and you were a patient of color, it was devastating," Burton said.

Inequities in Wait Lists and Transplantation

One obvious solution for addressing kidney failure is, of course, kidney transplant. The problem is that there are 100,000 people on the transplant list, most of whom are seeking kidneys, and only about 25,000 people received kidney transplants last year, Burton said. "So, we just don't have enough organs to go around."

People of color, women, and older adults have historically been disadvantaged on wait lists for both living and deceased donor transplantations, said Elaine Ku, MD, of the University of California San Francisco.

Policy changes were implemented to the kidney allocation system and to try to improve inequities in access to kidney transplantation beginning in 2014, and included allowing patients on dialysis to have their wait time back-dated to the date they started dialysis, rather than when they were first referred and validated by a transplant center.

Those changes, Ku noted, have helped to reduce some of the racial inequities in access.

In addition, last year clinicians began using a race-free equation to assess kidney function -- specifically estimated glomerular filtration rate (eGFR) values -- to determine eligibility for organ donation, Ku said. Previous calculations incorporated misguided thinking about African Americans' muscle mass that led to results showing less severe kidney disease in this population.

"So, I think that there has been efforts to try to address some of the inequities that were introduced through the use of a race-inclusive equation to estimate kidney function and there have been some changes there," Ku added.

Live Organ Donation

According to Burton, live organ donation is economically, medically, and socially one of the most effective options for transplantation, but it also has its challenges.

One of the "most awful things," she explained, is that a person can donate an organ and then be penalized in terms of access to certain insurance, or unable to take time off work. They might also struggle financially with the costs they bear as part of the donation process, she added.

The AKF has lobbied for legislation to protect living donors from insurance discrimination, and to allow them to take time off work. Today, close to 30 states have passed laws that encourage and protect live donors, Burton said.

Access for Undocumented Patients

Lilia Cervantes, MD, of the University of Colorado, Anschutz Medical Campus in Aurora, noted that roughly 180 to 200 undocumented patients in Colorado find themselves critically ill in the emergency department each week in need of emergency dialysis. In February 2019, Colorado opted to with kidney failure. Since then, 20 states have passed similar laws.

"I think people realized that it's important to keep undocumented immigrant patients receiving good care but also outside of the emergency department, especially during the pandemic when ED resources were quite tight," she said. Coalition building around these issues has also led to "lots of really great legislation."

Advocates also helped pass the or the "Cover All Coloradans" bill, which expanded Medicaid for all children and pregnant persons no matter their immigration status, as well as the , which gives 10,000 uninsured people access to free insurance on the healthcare exchange.

Furthermore, the AKF also offers the , which provides financial support to people in kidney failure to help them pay their insurance premiums. In 2022, AKF supported 60,000 people facing such challenges, Burton said.

Clinical Trials, Prevention

As for clinical trials, Burton said she's seen the research become more inclusive of patients of color compared with past years.

"It's very important that as new therapies are developed, that they are appropriate and effective for all of those dealing with kidney disease and especially for those populations that are most disproportionately affected," she noted.

To that end, Deidra C. Crews, MD, ScM, of the Johns Hopkins Center for Health Equity in Baltimore, highlighted the need for early engagement.

Instead of asking for patient feedback after a clinical trial has been developed, she recommended asking patients to "co-design" trials so that they focus on outcomes and issues that matter most to patients.

She also recommended that researchers consider study designs that allow for more remote data collection or allow data to be collected at "a time and place that's convenient for broader groups of people."

Finally, the panelists spoke about prevention and the importance of educating patients and communities about kidney disease. This is the reason that the AKF developed its , Burton said.

"One of the great positives about kidney disease is that, in an awful lot of cases, it is actually preventable," she noted. "Or if not totally preventable, you can slow down the progression, if you know your risk, and if you follow the regimens that are recommended for you, as well as some lifestyle changes."

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