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ASN Staff

An investigation from Kaiser Health News and Reveal from the Center for Investigative Reporting found that “between 2014 and 2019, nearly 170 organs could not be transplanted and almost 370 endured ‘near misses,’ with delays of two hours or more,” due to transportation problems.  Nearly 113,000 people in the United States waiting for transplants, yet many organs, especially kidneys, are needlessly wasted because they do not reach their destination on time due to transportation issues.

Zachary Kribs

On Thursday, January 23 ASN Councilor Crystal Gadegbeku, MD, FASN, along with 4 co-authors representing leading voices in organ and transplant policy, proposed a suite of improvements to the United States’ organ procurement and donation system at the launch of the highly-anticipated Day One Project.

Joined by former Obama and Trump administration staff (including ASN President’s Medal recipient Abe Sutton ) as well as the Executive Director of the Global Liver Institute and a patient advocate, Dr. Gadegbeku highlighted four ASN goals that should be prioritized:

ASN Staff

The U.S. Department of Health and Human Services (HHS) took bold steps today, December 17, in two proposed rules to increase the availability of organs for the 113,000 Americans waiting for a lifesaving organ transplant – 20 of whom die each day – and to strengthen support for Americans who choose to be living donors.  Both proposed rules advance policy changes the American Society of Nephrology has long been advocating for and is strongly supportive of.

ASN Staff

In an opinion piece published this week in USAToday.com, contributors Andy Slavitt and Adam Brandon argue that many patients waiting for organ transplants pass away waiting, not due to lack of donors, but because of a “government-run monopoly”. They are referring to organ procurement organizations (OPOs), which are regional organizations in the US “charged with showing up at the hospital and working with the surviving family to coordinate a potential donation”. Research has found that OPOs are inefficient causing “28,000 organs to go uncovered from potential donors each year” in the US.

Rachel Meyer

In a Friday, October 4, Washington Post opinion piece , former White House Office of Science and Technology Policy staffer Jennifer Erickson calls for a reform of the current United States organ procurement system. Erickson cites research that "thousands of organs go unrecovered every year from potential donors across the country." These missed opportunities for organ recovery occur, she argues, due to mismanagement by organ procurement organizations (OPOs), the nonprofit government contractors responsible for organ procurement and placement. Because OPOs self-report their own performance data, the reporting is “functionally useless” with “no system accountability,” said Erickson’s former colleague from the Obama administration U.S. Chief Data Scientist DJ Patil.

David White

In a bold move to increase organ transplantation, the Centers for Medicare and Medicaid Services (CMS or Medicare) has finalized a proposal “to remove the requirements at § 482.82 (conditions of participation for transplant centers) that require transplant centers to submit clinical experience, outcomes, and other data in order to obtain Medicare re-approval.” The American Society of Nephrology (ASN) and other members of the kidney community advocated for this change to reduce the unintended consequences associated with the re-approval process.

David White Zach Kribs and Rachel Meyer

The White House announced Tuesday that the administration is taking action on two policy priorities for ASN: improving the data used to evaluate Organ Procurement Organizations (OPOs) and removing financial barriers to living donation.

The Unified Spring Agenda, released May 22, provides insight into which issues the administration will address through a proposed rule process in the coming months. ASN urged Secretary Azar and other senior administration officials to address these issues during a February meeting and applauds its bold leadership on both fronts.

David White

Please see a statement on the below exchange from ASN President Mark Rosenberg. 

 

In a potentially game-changing exchange yesterday at a House Appropriations subcommittee hearing, Health and Human Services (HHS) Secretary Alex M. Azar, II, stated that a preliminary HHS Office of the Actuary analysis indicates that the savings generated by averting dialysis would be greater than the cost required to extend coverage for immunosuppressant drugs.  While noting that any potential savings would be “specific to the design of any actual policy,” the secretary underscored that HHS is “very focused on ways we can incentivize toward transplantation.”

Long-term survival among black and Hispanic children after kidney transplant worsened compared with their white counterparts over the past 2 decades, found a study presented at Kidney Week 2018.

Improvements in surgical techniques and immunosuppression strategies have led to substantial improvements in the outcomes for child kidney transplants overall. But whether those improvements have helped close racial and ethnic disparities in child kidney transplant outcomes documented in the 1980s and 1990s was unclear,  said Tanjala Purnell, MPH, PhD, assistant professor of surgery in the division of transplantation at Johns Hopkins University School of Medicine in Baltimore. A 2016 study of adult transplant recipients found improvements in outcomes for both white and black transplant recipients over the past 20 years.

ASN Staff

Per the July 2nd, 2018 press release from The Declaration of Istanbul:

"The first new edition of the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, a seminal document that has helped to guide ethical practice in organ donation and transplantation around the world, was presented today at an international workshop in Madrid, Spain.

The Declaration was originally published in 2008 , following a summit convened by The Transplantation Society (TTS) and the International Society of Nephrology (ISN) in response to growing concerns about international trafficking in human organs. It established definitions of practices such as transplant tourism and organ trafficking, and principles to guide policy makers and health professionals working in organ donation and transplantation. Since 2008, more than 135 professional societies have formally endorsed the Declaration.