Reducing the Organ Waiting List: Key Actions and Opportunities for the Future

There are more than 119,000 Americans waiting for a life-saving organ transplant. Each day, twenty-two people die waiting. In addition to the tremendous human cost to individual patients, the waiting list carries a substantial cost to the public purse as well. For example, dialysis for end-stage renal disease (ESRD) is often grueling for patients in addition to being costly for taxpayers. To put that in perspective, Medicare spends $34 billion per year on ESRD—more than the entire budget of the National Institutes of Health. The President’s Council of Economic Advisers has estimated that each additional kidney transplant has the potential to generate $60,000 in Federal savings per year, making increasing access to transplantation a major opportunity to not only improve health but also reduce health care spending.

Federal government actions to help patients waiting for transplant have included:

• In 2001, the Department of Health and Human Services launched the national Gift of Life Donation Initiative to increase organ, tissue, marrow, and blood donation;
• In 2007, the Health Resources and Service Administration (HRSA) began funding the National Living Donor Assistance Center to reduce financial barriers to living organ donation;
• In 2010, the enactment of the Affordable Care Act offered greater security to living donors by prohibiting insurers from denying health coverage to someone with a preexisting condition, including having donated an organ;
• In 2013, the bipartisan HOPE Act paved the way for the first transplants in the United States between HIV-positive donors and recipients;
• In 2016, the White House hosted an Organ Summit to spotlight commitments from diverse stakeholders to reduce the waiting list.

The actions below provide an update on new, common-sense steps to reduce the waiting list and improve patient outcomes.

Facilitating breakthrough research and development

The advent of organ transplantation by Dr. Joseph Murray in 1954 changed the landscape of medicine, but given demand for transplantable organs outstrips supply, innovative approaches can change what’s possible for patients waiting in the future. Announcements today include:

• The Department of Defense is awarding the new Advanced Tissue Biofabrication Manufacturing USA institute, which brings together a consortium of 87 partners from across industry, academia, and government to develop the manufacturing technologies for life-saving cells, tissues, and organs. The winning coalition, led by the Advanced Regenerative Manufacturing Institute (ARMI), Inc., will be headquartered in Manchester, NH, and brings nearly $300 million to develop next-generation manufacturing techniques for repairing and replacing cells and tissues, which may one day lead to the ability to manufacture new skin for soldiers scarred from combat or develop organ-preserving technologies to benefit Americans waiting for an organ transplant.
• In September 2017, the National Institutes of Health, through the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute on Minority Health and Health Disparities, and the National Institute of Allergy and Infectious Diseases will announce the award of $22 million in grants designed to better understand the long-term outcomes of kidney transplantation in patients with various APOL1 genotypes, associated with a disproportionately high incidence of kidney disease in the African-American community.
• The American Society of Transplantation and the Organ Preservation Alliance are announcing the first Organ and Tissue Preservation Community of Practice to advance cutting-edge technologies. This community will provide resources and recruit researchers from a wide variety of disciplines to focus on preservation challenges to advance transplantation.
• The Kidney Health Initiative, a public-private partnership established by the U.S. Food and Drug Administration and the American Society of Nephrology, will host a public workshop for entrepreneurs and developers in the first quarter of 2017, with involvement from the National Institutes of Health and the Centers for Medicare & Medicaid Services, to discuss the scientific, technical, and regulatory roadmap to create a bioartificial or bioengineered alternative to dialysis. 

Closing the gap between Americans who support organ donation and who are registered donors

Given 95 percent of Americans support organ donation and only half are registered, there is an opportunity to save lives by helping more people share their organ donation wishes with next-of-kin. Announcements today include:

• The Veterans Health Administration will develop a process to make veterans’ organ-donor wishes readily available to their Veterans Affairs health care providers.
• The City of Chicago, Office of the Illinois Secretary of State, and the Gift of Hope Organ & Tissue Donor Network will host the Chicago Organ Summit in February 2017 to advance measurable initiatives and commitments to reduce the organ transplant waiting list. 
• Microsoft will partner with ORGANIZE to help develop new open-source organ donor registry technology and make it freely available to all states via the Microsoft Cloud.
• The NYU-Langone Transplant Institute will launch a comprehensive outreach program in the spring of 2017 focused on improving rates of organ donation within the Asian American community of New York City, where rates of donation lag behind that of the general population. Results of the initiative will be publicly available.
• The Pittsburgh Steelers, through the Steelers Charities Foundation, will launch an organ donor awareness campaign during the 2017 football season.

Increasing the number of transplants and improving transplantation outcomes for patients

There is an opportunity to improve patient care through developing and sharing best practices that will help patients currently waiting for transplants. Announcements today include:

• Building on a demonstration project showing that adoption of prevention guidelines from the Centers for Disease Control and Prevention (CDC) could cut dialysis bloodstream infections in half, the CDC, through its Making Dialysis Safer for Patients Coalition, will work with partners, including provider organizations, to improve infection control practices and prevent infections in the nation's 6,000+ dialysis centers in 2017.
• The Department of Veterans Affairs (VA) and the American Society of Nephrology (ASN) will host an innovation showcase and partnership development summit in February 2017 to foster innovations to help patients both at-risk for kidney failure and in treatment for end-stage renal disease. VA and ASN will also launch a prize competition in the spring of 2017 to develop a tool that will allow kidney patients to input their nutrition data to better inform their food and nutrition choices.
• HRSA is supporting a Scientific Registry of Transplant Recipients study assessing the impact of reimbursing lost wages on living organ donation.  The study will provide recommendations for a demonstration project regarding reimbursement methods, criteria, and a reimbursement ceiling.
• Thirty-eight organ transplant centers are collaborating to identify best practices for the one-third of kidney patients who are difficult to transplant because they have highly sensitized immune systems that would attack the transplanted kidneys. The full list of transplant centers can be found here.
• The National Living Donor Assistance Center will conduct a randomized controlled trial to assess interventions that remove financial barriers to living organ donation to determine whether providing reimbursement for lost wages increases the number of individuals who become living donors. The trial will be administered by the American Society of Transplant Surgeons and Arbor Research Collaborative for Health. Funding for the trial will be provided by the Laura and John Arnold Foundation.
• The Organ Donation and Transplantation Alliance is conducting a pilot project with 35 organ procurement organizations to improve processes and share successful practices to increase utilization of kidneys that are at risk of discard, to transplant more patients and save more lives. The pilot will conclude in the summer of 2017 and results will be shared publicly.
• By the end of 2017, United Network for Organ Sharing (UNOS), Health Literacy Media, and national leaders in the design of transplant education from Beth Israel Deaconess Medical Center, Duke University School of Medicine, Emory University, Johns Hopkins University, Mount Sinai Hospital, Northwestern University, Temple University, and the University of California Los Angeles will establish the UNOS Kidney Transplant Learning Center as an online, national clearinghouse of public educational resources to support the 650,000 Americans living with ESRD and potential living donors.

These and other efforts will help more Americans access life-saving transplants.

Thomas Kalil is Deputy Director for Policy for the White House Office of Science and Technology Policy and Senior Advisor for Science, Technology and Innovation for the National Economic Council.

Jennifer Erickson is the Assistant Director of Innovation for Growth at the White House Office of Science and Technology Policy.

Robbie Barbero is Assistant Director for Biological Innovation at the White House Office of Science and Technology Policy.

Megan Brewster is Senior Policy Advisor for Advanced Manufacturing at the White House Office of Science and Technology Policy.