(Washington, D.C., Tuesday, May 4, 2021)—Donna Cryer, president and CEO of Global Liver Institute (GLI), today praised a key U.S. House of Representatives subcommittee for the bipartisan pursuit of accountability and better performance from the organizations responsible for procuring life-saving organs for transplant. Cryer also praised six of the organizations for leaving the Association of Organ Procurement Organizations, the umbrella group that lobbied against nonpartisan reforms.
“The message is clear. Accountability, transparency, and equity matter,” Cryer said after testifying at a hearing of the U.S. House Committee on Oversight and Reform, Subcommittee on Economic and Consumer Policy. “I commend the members of Congress from both parties and the organ procurement organizations that are taking a stand for patients and their families and seeking a system that does its job. GLI will work with the reformers to accelerate progress toward our ultimate goal of eliminating the liver transplant waiting list altogether. Dysfunctional organ procurement organizations are a prime reason 33 Americans die every day waiting for an organ transplant. The status quo is unacceptable. The forceful action for change we’re seeing is necessary and long overdue. Patients can’t wait.”
Cryer testified about the disparate impact of the organ donation system on minorities and low-income individuals. She said people of color are 1.5 to 4 times more likely to have conditions leading to kidney and liver failure but less likely to receive transplants. Covid-19, with its devastating effects on organs and greater impact on minorities, exacerbates the problem. Organ procurement organizations must invest in hiring diverse staff and reaching out in languages other than English to build awareness and gain the trust of potential organ donors, she said. Also, higher income individuals can afford to travel for organ transplants and use their media savvy to recruit donors, privileges unavailable to lower income individuals. Organ procurement organizations encourage those inequities by largely ignoring minorities, Cryer said.
“Equity matters, ethically, scientifically and by law,” Cryer testified. “We should not be satisfied until every family in every zip code, of every race and socioeconomic status, is aware of and approached for donation in a timely and compassionate way. We should not be satisfied until the number of patients waiting for an organ is zero.”
Matthew Wadsworth, Life Connection of Ohio president and CEO, announced his organization’s departure from the Association of Organ Procurement Organizations effective immediately in favor of operational initiatives that “will maximize the gifts given by generous Ohioans.” He encouraged other organizations to do the same. In addition, Mid-America Transplant (Missouri), LiveOnNY, Our Legacy (Florida), Southwest Transplant Alliance (Texas) and the Louisiana Organ Procurement Agency also are leaving the Association of Organ Procurement Organizations in favor of a patient- and data-driven FAS Organ Procurement Organization Innovation Cohort.
The subcommittee heard from patients about the agonizing wait for a transplant. LaQuayia Goldring, patient advocate and GLI intern, testified from her dialysis clinic about waiting six years for a kidney transplant and requiring 12 hours of dialysis each week to stay alive.
“The longer I wait for a kidney, the longer I feel my life is hanging in the balance, even though there are plenty of willing donors ready to help,” she said. “And I know this is the story of many Americans across the United States.”
U.S. Rep. Raja Krishnamoorthi (D-Illinois), subcommittee chairman, vowed to continue oversight of poorly performing OPOs. “Simply put, we need to get better at recovering every viable organ. Each one saves a life,” he said. “And there is one group of people that could step up to save the day.” U.S. Rep. Michael Cloud (R-Texas), ranking member, called for reforming a “very broken system.”
The U.S. Department of Health and Human Services contracts with 57 organ procurement organizations across the United States to procure organs for transplant. Poor performance and abuse of tax dollars on sporting events and staff retreats by some of the organizations prompted reforms that have received support from the Obama, Trump, and Biden administrations. The umbrella association fought the reforms. The departure of member organizations might represent a turning point in the effectiveness of leadership to stall or weaken the reforms.
GLI has been consistent in fact-based advocacy for transparency, accountability, and equity in the organ donation, recovery, and transplant system. It has served as a leader, rallying the transplant advocacy community to the issue, culminating in persistent agency and bipartisan, bicameral congressional letters. GLI’s most recent letter to the new leaders of the U.S. federal health agencies urging reform was in February.
GLI also has explored the organ procurement system and the patient experience in venues such as GLI LIVE, its weekly online show. An episode featuring Goldring is here. An episode on the triumphs and tragedies of organ transplantation is here. Cryer appeared in a segment on the topic on “Full Frontal With Samantha Bee.”
About Global Liver Institute
Global Liver Institute (GLI) is a 501(c)(3) tax-exempt not-for-profit organization, headquartered in Washington, D.C., United States, with offices in the U.S. and Europe. GLI’s vision is for liver health to take its place on the global public health agenda commensurate with the prevalence and impact of liver disease. GLI’s mission is to improve the lives of individuals and families impacted by liver disease through promoting innovation, encouraging collaboration, and supporting the scaling of optimal approaches to help eradicate liver diseases. Follow us on Twitter, Facebook, Instagram, and LinkedIn, and YouTube.