CD281: Private Policing of the Organ Transplant Network

The system for coordinating organ donations and transplants in the United States is broken, according to experts who have testified over the course of many years to Congress. In this episode, hear their testimony about what is wrong with the current system and then we'll examine the bill that aims to fix the problems. Please Support Congressional Dish – Quick Links Contribute monthly or a lump sum via PayPal Support Congressional Dish via Patreon (donations per episode) Send Zelle payments to: Donation@congressionaldish.com Send Venmo payments to: @Jennifer-Briney Send Cash App payments to: $CongressionalDish or Donation@congressionaldish.com Use your bank's online bill pay function to mail contributions to: 5753 Hwy 85 North, Number 4576, Crestview, FL 32536. Please make checks payable to Congressional Dish Thank you for supporting truly independent media! View the show notes on our website at congressionaldish.com/cd281-private-policing-o… Background Sources "UNOS Hearing Confidential Memo [Jen Briney's Highlighted Version]." August 3, 2022. Senate Finance Committee. "70 deaths, many wasted organs are blamed on transplant system errors." Lenny Bernstein and Todd C. Frankel. August 3, 2022. The Washington Post. "Letter from Chuck Grassley et al. to Brian Shepard." February 10, 2020. Senate Finance Committee. The Bill H.R.2544: Securing the U.S. Organ Procurement and Transplantation Network Act Audio Sources The Cost of Inaction and the Urgent Need to Reform the U.S. Transplant System July 20, 2023 Senate Committee on Finance, Subcommittee on Health Care Watch on C-SPAN Witnesses: LaQuayia Goldring, Patient Molly J. McCarthy, Vice Chair & Region 6 Patient Affairs Committee Representative, Organ Procurement and Transplantation Network (OPTN) Matthew Wadsworth, President and CEO, Life Connection of Ohio Raymond J. Lynch, MD, MS, FACS, Professor of Surgery and Director of Transplantation Quality and Outcomes, Penn State Health Milton S. Hershey Medical Center Donna R. Cryer, JD, Founder and CEO, Global Liver Institute Clips 30:40 Sen. Ron Wyden (D-OR): HRSA, the Health Resources Agency, is on track to begin the contract process this fall and we're just going to be working here to complement their effort. 36:30 Sen. Chuck Grassley (R-IA): In 2005, I started the investigation of the deadly failures of UNOS, the monopoly tasked with managing the US organ donation system. Since then, more than 200,000 patients have needlessly died on the organ waiting list. There's a reason that I call UNOS the fox guarding the hen house. For nearly two decades, UNOS has concealed serious problems [at] the nation's organ procurement organizations, known as OPOs, instead of working to uncover and correct the corruption. This human tragedy is even more horrific because many of these deaths were preventable. They were the result of [a] corrupt, unaccountable monopoly that operates more like a cartel than a public servant. 44:45 LaQuayia Goldring: As a toddler, at the age of three, I was diagnosed with a rare kidney cancer that took the function of my left kidney. And when I was 17, I went back into complete renal failure and I received a first kidney transplant at that time. Unfortunately, in 2015, I went back into kidney failure. And at that time, I wasn't ready for another transplant, but I didn't have a choice but to go back on dialysis. I've been waiting nine agonizing years for a transplant, dependent upon a dialysis machine five days a week, just to be able to live. I was told that I would receive a kidney transplant within three to five years. But yet I am still waiting. I am undergoing monthly surgeries just to be able to get my dialysis access to work so that I can continue to live until I get a transplant. The UNOS waitlist is not like one to 100, where everybody thinks you get a number. I'm never notified on where I stand on the list or when I will get the call. I have to depend on an algorithm to make the decision of what my fate will be. 47:55 LaQuayia Goldring: Just a few weeks ago, a donor family reached out to me to be a directed kidney donor, meaning they chose me specifically for a kidney transplant. But unfortunately, due to the errors in the UNOS technology, I was listed as inactive and this was a clerical error. And all that they told me was this was a clerical error, and they could not figure out why I was inactive. But when it came down to it, I'm actually active on the transplant list. 51:45 Molly McCarthy: The Federal monopoly contractor managing the organ donation system, UNOS, is an unmitigated failure. And its leadership spends more time attacking critics than it does taking steps to fix the system. I've seen this firsthand in my five years as a patient volunteer with the OPTN and three years ago, I stepped into the role of Vice Chair of the Patient Affairs Committee, or PAC. 53:45 Molly McCarthy: Further, I have been called by a board member telling me to stop focusing on system outage and downtime of the UNOS tech system. He told me that having downtime wasn't a big deal at all, "the donors are dead anyway." That comment speaks volumes to me about the lack of empathy and respect UNOS has for donor families. 55:00 Molly McCarthy: Congress needs to break up the UNOS monopoly by passing 1668, ensuring that HHS uses its authority to replace UNOS as its contractor. 1:00:15 Matt Wadsworth: Break up the OPTN contract and allow for competition. 1:00:40 Matt Wadsworth: I commend this committee for introducing legislation to finally break up this monopoly and I stand ready to work with you in any way possible to ensure that this bill passes. It's the only way this industry will be able to save more patients' lives. 1:02:10 Dr. Raymond Lynch: I want to differentiate between organ donation, which is the altruistic decision of the donor patient and their family, and organ procurement, which is the clinical care provided by OPO staff. This is what turns the gift of donation into the usable organs for transplant. Organ procurement is a clinical specialty. It's the last medical care that many patients will ever receive. It's reimbursed by the federal government and it's administered by OPOs that are each the only provider in the territory to which they hold federal contracts. Right now patient care delivered by OPOs is some of the least visible in American healthcare. I can't tell you how many patients were evaluated by OPO workers in the US in 2022. I can't tell you how many patients were examined, or how many families were given information about donation, or how many times an OPO worker even showed up to a hospital to do this clinical duty. This lack of information about what OPO providers actually do for patients is a root cause of the variability in rates of organ procurement around the country. My research has shown that what we call OPO performance is a measurable restriction on the supply of organs that results in the unnecessary deaths of patients with organ failure. For example, if the lowest performing OPOs from around the country had just reached the national median over a recent seven year period, there would have been 4957 more organ donors, yielding an estimated 11,707 additional organs for transplant. Because many OPOs operate in a low quality data environment and without appropriate oversight, almost 5,000 patients did not get adequate organ procurement care, and nearly 12,000 other patients did not receive life saving transplants. 1:03:55 Dr. Raymond Lynch: OPO clinical work is currently not visible, it's not benchmarkable, and it's not able to be adequately evaluated, analyzed, or compared. However, much of the hidden data about how OPOs provide care to patients is known to one entity and that entity is UNOS. 1:05:20 Dr. Raymond Lynch: We need a new network of highly skilled specialist organizations, each attending to areas of expertise in the management of the OPTN contract. 1:21:15 Sen. Marsha Blackburn …