The Center for Chronic Disease Research and Policy is proud to feature a talk by William F. Parker, “Ethics and Equity in Kidney Allocation,” at our 12th Annual Symposium: Intersections of Policy, Innovation, Healthcare, and Financialization for Kidney Disease: Where Are We in America Today? on October 16, 2024. REGISTER HERE.
William F. Parker, MD, PhD is an assistant professor of medicine and public health sciences and an Assistant director of the MacLean Center for Clinical Medical Ethics at the University of Chicago. He is a pulmonary and critical care physician, clinical medical ethicist, and health services researcher who studies the allocation of scarce medical resources. He runs an NIH and Greenwall Foundation-funded quantitative bioethics lab focused on absolute scarcity problems, where demand greatly exceeds supply, and healthcare systems triage patients for treatment using algorithms.
His lab’s work on deceased donor organ allocation policy, life-support tirage under crisis standards of care, and the allocation of novel scarce therapeutic has been published in top clinical journals such as JAMA, AJRCCM, and JACC, and Dr. Parker’s normative analysis and advocacy has been featured in The Hastings Center Report, Health Affairs, USA Today, The Washington Post, and The New York Times. He has been recognized with national young investigator awards from the American Society for Clinical Investigation and the American Thoracic Society. Dr. Parker seeks to ground his research in the real world and actively collaborates with policymakers at the Scientific Registry of Transplant Recipients, the Organ Procurement and Transplant Network, and the Oregon Health Authority.
I’m a critical care doctor and health services researcher. My lab focuses on the allocation of scarce health care resources. We use ethical analysis and advanced data science skills to design and evaluate algorithms that allocate scarce health care resources, treatments that are unambiguously great and lifesaving for patients; however, demand vastly exceeds supply.
Deceased donor kidneys are the biggest chronic example—in the case of deceased donor organ transplants there’s only so many deceased donor organs that become available each year, and there are 100,000+ patients on the waitlist currently for transplantation—most of them waiting for a kidney.
My lab has been examining the current kidney allocation system and its algorithm from various angles and trying to advocate for improvements to make the system more efficient and more equitable. Right now, it’s basically based on the amount of time you’ve been waiting and your distance from the deceased donor. Patients who are better matches with the donor have a higher priority, and patients who are highly sensitized and are difficult to match also get increased priority. From a patient perspective, the most important thing is the amount of time you’ve spent waiting, the time points you’ve accumulated.
Time points used to be calculated based on their time of waitlisting at a transplant center. This created a huge structural inequity for patients who have lower socioeconomic status and were more likely to access the waitlist later. In 2014, they began giving patients credit for time that they spent receiving hemodialysis, and the racial disparities in transplantation rates went away basically overnight. It’s a story of a reversal of a structurally racist healthcare policy algorithm that’s quite compelling.
There are additional equity concerns in the status quo, because patients can rack up literally years of waiting time with so-called preemptive waitlisting—they join the list for transplant when they hit certain eGFR (estimated glomerular filtration rate) requirements but before their kidneys actually fail. These patients are much more likely to have private insurance and be white. You can argue that it undermines the system’s efficiency, because if you define efficiency by rescuing patients who are likely to die without transplantation, patients who are on dialysis have a much higher risk of death than patients who are not on dialysis yet.
On October 16, I am going to talk about continuous distribution, the forthcoming national policy, which provides a lot of opportunities to make the system more equitable beyond waiting times.
I’m looking forward to the thoughts of my esteemed co-panelists on continuous distribution and a general discussion about the best way that that policy should evolve over time. I think there’s a lot of opportunity to use the framework set up by continuous distribution to enhance patients’ access to deceased donor kidney transplant and break down some barriers of structural inequity that currently exist.
The reasons somebody in one of these disadvantaged neighborhoods might not have the same rate of transplantation can be a variety of things: it’s more difficult to get to the transplant or to get to the high-end academic center which is in the wealthy neighborhood. You have to navigate public transport. There’s racism because there’s a lot of minoritized populations who are in these more disadvantaged neighborhoods. If you miss an appointment, they’re less likely to give you a second chance.
Our idea is to use continuous distribution to directly counteract this inequity by giving patients more points and higher priority for transplantation from disadvantaged neighborhoods recognizing that in the status quo they are less likely to be transplanted so we’re basically using the policy to directly counteract observed barrier to access.
I take care of patients who have end-stage kidney disease all the time, and I often have this question of, why did this person not get a transplant? Why has no one ever talked about that for them? Now they’re suffering complications of end-stage kidney disease like catheter-based infections, cardiovascular disease, strokes—so I have a personal connection to this population that helps me keep my research on these algorithms grounded.