Dear Fellow Marylanders,
This week, I led a Senate Finance Health Care Subcommittee hearing on the cost of inaction and the urgent need to reform the U.S. transplant system. I heard from witnesses like LaQuayia Goldring, a Kentucky resident who has been waiting more than nine years for a kidney transplant.
As a toddler, Ms. Goldring was diagnosed with a rare kidney cancer that took her left kidney. At 17, she was told she had stage five kidney failure and was placed on the transplant waitlist. While she was able to receive a kidney transplant, at 25, Ms. Goldring went back into complete kidney failure and has been waiting ever since for another transplant.
In the United States, the need for organs is far greater than those available. There are about 104,000 adults and children on the national transplant list waiting for a lifeline. Every 10 minutes, another person is added to that list.
Those who can get a transplant are considered lucky, but often, transplant patients will eventually need another organ, putting them back on the transplant list.
Marylanders are fortunate to have access to two excellent transplant centers in the state. Maryland’s organ procurement organization (OPO) is also taking innovative actions in some of the most underserved areas, like Baltimore City, to encourage organ donation. This OPO has been among the top ten performers nationwide, but access to transplants in Maryland is far from perfect.
Despite our high-performing transplant ecosystem, due to major underlying issues with the current network, 148 people died while on the transplant waiting list in Maryland last year.
Organ transplant statistics in other states are even more bleak. Systematic failures within the national organ transplant system have made a dire situation worse.
Since 2020, Senators Wyden, Grassley, Young, and I have led a Senate Finance Committee investigation into the organ procurement and transplantation network (OPTN). Our investigation has uncovered transportation and testing failures, outdated technology, a lack of oversight by the current OPTN contractor, the United Network for Organ Sharing (UNOS), and misuse of Medicare funds.
Ms. Goldring’s experience trying to get another transplant highlights the consequences of inaction.
“Patients like me are completely forgotten by the system,” Ms. Goldring said. “Just a few weeks ago, a donor’s family wanted to make a directed kidney donation to me, meaning that they chose for me to receive their loved one’s kidney. This should have been my second chance at life, but my name was unable to be found at first as active on the UNOS transplant waitlist, but I was told that this was a “clerical error”, and that I should have been listed as “active.”
People who should still be with us today, no longer are because the system has failed.
No one should have to rely on fate.
Currently, we have a system that works well for some, but that is insufficient. These disparities impact people throughout the country, including those who are low-income, the uninsured, members of racial and ethnic minorities, people with disabilities, and rural populations. We need a path forward to a better system.
I’ve introduced two pieces of legislation this Congress that would help illuminate that path. In May, I joined Senators Wyden, Grassley, Young, and Cassidy in introducing the Securing the U.S. OPTN Act which would remove barriers in OPTN contracting and give the Health Resources and Services Administration (HRSA) statutory authority to modernize and hold the OPTN accountable.
This week, I also joined Senator Young in introducing the Lost Opportunities to Supply Transplantable (LOST) Organs Act which would require the OPTN contractor to track and publicly report on the status of all organs in transport. Too often, organs are lost or damaged in transport and have to be discarded. This disrespects a donor’s gift of life and prevents a patient from receiving a lifesaving organ.
These common sense, bipartisan solutions would be significant steps forward on the path to reducing the disparities within and reforming the system. Now is the time for them to become law. We demand better, and I will not stop until we make it so.
Thank you for your time. Please feel free to reply back to this email with any feedback on this or any other topic.
Sincerely,
Ben Cardin
