Presenters at ASN Kidney Week 2023 emphasized the importance of patient education, awareness, and advocacy in the realm of kidney transplantation.
A session at ASN Kidney Week 2023 offered first-perspectives from patients and professionals on the growing efforts to mitigate barriers and inequities impacting patients in need of kidney transplants. Presentations featured stories from a kidney transplant recipient and donor, as well as evidence-based knowledge highlighting the needs to increase donor numbers and patient engagement.
Reflections of a 2-Time Kidney Transplant Recipient
Nicole M. Jefferson is a 2-time kidney transplant recipient with experience as a volunteer in her local chapter of the National Kidney Foundation, a member of the Kidney Health Initiative’s Patient and Family Partnership council, a Field Ambassador for the American Association of Kidney Patients, and was recently elected as President of the Board of Home Dialyzors United.
Her talk highlighted the long process involved in receiving a transplant and reinforced the need for patients to be fully informed about their options. For her, a 5-year wait resulted in a transplant with a suboptimal kidney only estimated to last 4 to 6 years. Jefferson learned a lot in this process, namely that receiving the call about a potential match did not guarantee her chances for transplantation. Upon arrival to the hospital, she found out she was still fourth in line in the building to receive the kidney. Walking away with the kidney would mean those ahead of her went home empty handed—which added extra layers of guilt.
As expected, the kidney did not last, and Jefferson found herself in need of another. With the previous knowledge she gained, she said she was not shy to assert herself when she expected her transplant was failing and did not hesitate to ask her doctor questions. She learned she could enroll with multiple centers; however, the state of kidney transplant was drastically different as some centers estimated wait times at 7 to 10 years or more. Additionally, she was advised to wait for the “perfect kidney” to avoid going through this again.
When she received the call for her second transplant, it was far from a “perfect” organ. Nonetheless she was determined to avoid dialysis and accepted the “better-than-dialysis” kidney.
“We didn’t know it was the perfect kidney for me until we got it in my body...I got a yucky kidney...but that better-than-dialysis turned out to be the best kidney for me,” she stated.
As this process turned out for the better, Jefferson reflected on lack of information and communication she experienced in her journey and emphasized: “It’s about letting the patient know what [options are] available...and patients, make sure you advocate or yourself, are cautious with what you do, and stand your ground.”
Shared Decision-Making in Deceased Donor Kidney Allocation
Sumit Mohan, MD, MPH, FASN, of Columbia University, followed Jefferson’s presentation by diving into what happens between being waitlisted and receiving a transplant, as well as the current obstacles to transplantation. To begin, he asserted the need for increasing transplantation rates and recruiting more donors, suggesting “a better first step might be improving deceased donor rates.”
Data surrounding transplantation reveal some harrowing statistics. An analysis from 2022 showed nearly 7500 kidneys were discarded, Mohan noted, and in 2023, we are on pace to discard 8000. He emphasized how getting a transplant is a complex, multistep process that focuses on the probability of favorable outcomes, because penalties are enforced for centers that accept organs that lead to poor outcomes (yet, no penalties exist for declining organs or denying patients transplant opportunities).
Considering deceased donor kidneys offers an opportunity to confront the gap between transplant needs and kidney availability. Common concerns about deceased donors stem from potential injury during transport, delays in finding recipients, and poor organ quality due to comorbidities. Mohan asked, do these reasons really make sense? He presented analyses demonstrating that kidneys from diabetic donors or those with acute kidney injury (AKI) can perform better for recipients.
Continuing, Mohan highlighted that unconscious biases as well as transplant center infrastructure and communication issues can contribute to the high variability we see in acceptance rates. In a study from 2008 to 2015, 14 million deceased donor kidney offers were made before eventually being accepted. This data revealed that 84% of all kidneys were denied at least once—and less than 3% were rejected for recipient-related reasons. In total, 76% of the waitlisted patients were given at least one offer for a deceased donor kidney.
As his talk ended, Mohan suggested one way to address patient hesitancies and reduce discards: asynchronous shared decision-making. He believes this begins with using transparency as a form of policy and considering patient preferences to inform organ offer choices. Bettering communication and patient education can improve patient engagement, strengthen patient relationships with—and confidence in—their physicians and transplant centers, as well as create accountability in centers by requiring they report reasons for organ decline.
A Living Kidney Donor’s Experience: Barriers and Opportunities
Marsha Gershun, MBA, and coauthor of “Kidney to Share” took the stage to detail her donor journey and how the process was not as easy as she was led to believe. Her talk was focused on the psychosocial, logistic, and financial barriers that burden donors.
Once she began the process, 2 of the first questions she was asked in her evaluation were: “Have you ever seen a mental health professional?” and “Have you ever used recreational cannabis?” She gave an affirmative “yes” to both and, before her blood was even tested for capability with the recipient, she was required to see a substance abuse counselor.
Three days and 27 evaluation appointments later, and the clinic could not fit her in with a substance abuse counselor. They subsequently requested she make the 6-hour drive to their location at a later date to complete this requirement; however, after strongly advocating for herself and expressing the difficulties they were imposing on her ability to donate, the requirement was lifted. Reflecting on this experience, she attributed the flexibility to her being an affluent, well-educated, well-spoken, White woman; she does not believe this exception would have been awarded to her if she represented a different demographic.
Furthermore, she reflected on the financial barriers these processes can impose on donors. Gershun lived far from the nearest transplant center: what if a donor couldn’t afford gas or transportation to make their appointment? What if the donor or their caregiver, which is a requirement for all donors, could not afford to take off from work to make a trip like this? Gershun’s experience with donation costed her $5000 in total—what happens when donors don’t have this money in the bank?
She shared new policies from various employers aiming to mitigate these challenges; however, these benefit the donor and not their caregiver. Some nonprofits and philanthropic individuals are even stepping up to help fund donors, but these efforts beg the question: why should donors have to rely on this help?
To reduce barriers for living donors, Gershun pointed to advocacy aiming to ensure Medicare can cover all donation-related costs; however, she turned her attention to hospitals and transplant centers to help bridge these gaps. She urged these institutions to treat donors like donors. They may not be pledging thousands of dollars to hospitals, but the kidneys they provide do contribute to immense profits.
To start alleviating donation challenges, organ donors should be treated with higher regard. On a smaller scale, Gershun concluded by iterating that practitioners can make a difference by forming relationships with donors: “In your clinics, talk to your living donors. Understand their experiences...understand what their process has looked like, [because] what we ask living donors to do does not reflect the lifesaving value they bring.”
Engaging Friends and Family to Enhance Living Donor Kidney Transplants Among African Americans
In the closing presentation, L. Ebony Boulware, MD, MPH, highlighted inequities in transplantation impacting Black patients and explored potential avenues to reduce these disparities.
Since 1999, Black patients have gone from 55% to 73% less likely to receive a living donor transplant compared with White patients. Boulware mentions the how patient readiness, concerns, and family factors, alongside barriers in the health system and social determinants of health, have all contributed to this growing gap.
Throughout her discussion, data from multiple studies were presented to reinforce these claims. In one randomized controlled trial consisting of 300 Black patients, participants were asked about their concerns about live donor kidney transplantation. Their top 5 reasons included: donor safety, donor finances, recipient safety/finances, recipient guilt, and donor coercion. Additional analyses revealed that discussions about kidney donation were lacking in Black families.
Discussions about kidney transplantation are important for individuals to have with their families and physicians. Boulware identified the lack of discussion as a primary treatment barrier, because talking through and becoming educated on the process can work wonders to alleviate patient concerns.
Social determinants, such as finances and the strain transplant can cause for employment and caregivers, were cited as additional barriers. Boulware reinforced these challenges by providing patient testimonials detailing struggles with insurance, high medication costs, and how kidney disease-related procedures can turn retirees into full-time caregivers.
To address multiple barriers simultaneously, the STEPS registry has been created as a part of a randomized, comparative effectiveness trial aiming to:
In addition to STEPS, social work intervention may help address the complex, multifactorial problems facing Black patients in this area. In her concluding thoughts, Boulware pointed to the usefulness of involving nurse transplant coordinators and social workers in facilitating the solutions researchers are looking towards to mitigate disparities in transplantation.